Inside CF... Life as a 20 something CF'er!

Oh. My. God.

2012-03-05T17:58:00.003-08:00

I'm pretty much in shock right now. I am so amazed at this blessing in my life. I also feel a bit guilty because all my cysters & fibros can't share in my excitement AND success! I'm so compelled to keep everyone up to date with my health. Tonight I am excited to share with you some rapid FEV1 changes.

One week ago today I recieved my kalydeco, 2 days later I did my first fev1 meausurement. It was 1.48 (45%).

Today I still feel "different". I still don't know how to explain that. I don't feel better so please don't assume that. In fact I've felt horrible since starting to take this medication. I've been dizzy, nauseas, no appetite, lots of chest pain, and an increased junky cough.

I do however notice less "cf tummy". My stomach is less irritated. I find I'm only needing 4 pills with meals and possibly less. I find I am less winded when I'm walking. At time when I should be short of breath I am not. I find I have much more energy just for little things. I am also sleeping better at night. I have also manged to beat a sinus/lung infection without medication. 2 weeks ago I called in for antibiotics and thought I might need to be in the hospital. (I had already been on bactrium & cipro for 2 weeks and 7 days of levequin). Today I feel just irritated in my lungs but not sick, like usual. I feel different but I just can't explain how. The most exciting news however is this:

Tonight my FEV1 on my at home meter was 1.82 (58%) O.M.G

This is a 13% jump in ONE week. This is a 19% increase since my PFTs at clinic on the Jan 31st. HUGE totally HUGE.

I wanna do flips & kiss people & sing in the rain & jump up and down & an say OMG OMG OMG OMG OMG OMG OMG...O.M.G!!!!!

If you aare taking the med PLEASE tell me about your experience!!!! Please keep reading this blog for more info. This is history in the making. CF is so close to a cure, I can feel it.

*** Edit to add***

I have not done my vest and the only meds I have taken are the occasional puffer/treament when feeling asthma act up, norco 1-2 times a day, enzymes 4 at a time instead of 6, trazadone, asprin thats it.

I feel different....

2012-02-29T20:20:00.002-08:00

I'm so sorry for my lack of 2 days worth of updates.

{my boyfriend & i broke up and its been really hard on me, so i've been in bed crying for 4 days}

So my kalydeco was suppose to arrive on friday morning by 10:30am, nothing. So I called and they explained to me that it should be there by 5pm. 5pm rolls around, nothing. Again I call and was reassured that they delivered until 7pm and it WOULD arrive. 7pm rolls around, nothing. I burst into tears. I called UPS back and was told that they deliver until 11:59pm and that the package HAD to come. 12am gets here and I'm supremely upset. It took everything I had not to flip out calling the UPS company AGAIN. I was told that I needed to call back around 8am and they would find it. I woke up the next morning, sick, and ready to light someone on fire. I spoke to the first woman who said it would probably be delivered in a few days. A FEW DAYS? Really when did next day air turn into when UPS chooses to deliever it??? So I spoke to a manager that told me that it was lost and that the pharmacy had to call and start a formal investigation. They informed me that they would NOT recover the cost of the medication and it was on me. I was so upset and afraid it was gonna be WEEKS or MONTHS until I could get my medication.

Monday morning 8 am *knock knock knock*, I recieved a pretty little box filled with pretty blue pills. Guess UPS decided 25,000 was an expensive package and they found it asap!

So I am 4 days into the medication and I feel different but don't really know how. I feel like I am breathing better, like moving more air. I feel less junky. I do however feel very asthmatic. My PFT's at my last clinic visit (feb 1st ish) were 39%. Today on my home FEV1 meter they were 1.48 which is about 45%. Now I don't know if that increase has happened in the last 3 days, but i do feel different. So I def feel different, Im just not sure really how....O also my tummy is flatter, a def plus. So its progress. I have CF clinic on the 14th and I cant wait! (Only meds Im doing: Albuteral, Enzymes,norco, and trazadone for sleep)

Did you watch the special on CF tonight on the TLC channel? Breathless Bride:Dying to Live. What did you think???

So thats about it. Im tired and emotionally exhausted and ready for sleep.

A road to better, more natural health.

2012-02-10T19:32:00.000-08:00

Something near and dear to my heart is being 100% natural. Some call it granola, being a hippie, weird, etc. I however believe that EVERY person has a way of doing things naturally to protect and enhance their health. I don't believe in vaccines, I'm not sold on conventional medicine, and I don't like medical interventions unless they are life saving.

Some of you right now are saying "WAIT aren't you being hypocritical bc if it wasn't for medical intervention you'd be dead" - perhaps, but I seriously doubt it. I partially say this b/c I have NEVER been consistent about my medication. Essentially I take it when I am sick and then mostly take it as needed. I just feel like I should reserve it until I have to have it. Now this is probably not the best way -although I always bounce right back and have never really lost any lung function even though I have lots of scarring. And maybe I'm just lucky up to this point...but something tells me their are more answers, better answers, better options.

There are ways of helping your body HEAL itself. The problem is that doctors aren't taught these ways. They are taught medicine - not nutrition and vitamins and minerals. The aren't taught how to detox the body, they aren't taught the importance of meditation, most are barely knowledgeable on exercise. (Most doctors take 1-2 nutrition courses in med school, that's it)

Proper nutrition is the SINGLE most important thing to the body. If you are not fueling your body correctly then the performance is dramatically decreased and problems arise. Diseases are brought on when the body becomes deficient in something. With CF we KNOW that we do not get adequate nutrition. Its important for us to take our vitamins EVERY SINGLE DAY. But its also important for us to understand WHY we don't get proper nutrition and ways to fix that. Not just conventional medical ways either.

I am on a quest to get off of the 30 medications I'm taking at any given time. While they are "helpful", they are also slowly poisoning my body. There is probably a more effective, less damaging way to help my body through my illness. I want to reverse the things happening in my body. I want all these awful side effects and extra illnesses to go away. Sure some say "oh with CF having other illnesses is just part of the disease" but WHY do they have to be? Why should we settle with death if there MIGHT be another option out there? And lets look at the CAUSE of why we have other illnesses. Its not the CF that does it, think about it. I have osteoporosis bc I was given steroids too often as a child and it destroyed my bone strength. I have diabetes, more than likely, b/c I have been told to eat all the "crap" I could get my hands on. CF liver disease - ppsshh more like liver problems bc of all the antibiotics, constipation, and medications. Some of these things just HAVE to be reversible, right?

So aside from my supplement regime, I am going to start juicing. I purchased an Omega 8006 today. I first stumbled onto the idea from a documentary, but then was advised to check out info on the Gerson therapyhttp://www.gerson.org/. I was amazed. Then as I watched videos on youtube and read blogs I couldn't believe the results people had... but wait yes I could! Fruits and veggies have so many amazing qualities to them. The contain the vitamins and minerals we consume in pill form. So what happens when you drink large, easily digestible amounts of them - YOU HEAL YOUR BODY FROM THE INSIDE OUT! If it works for cancer it has to work for CF.

So over the next few months, I am going to write alot about healing CF in a natural way. I've been googling info on this but there just isn't much. Everything with CF is trial and error. I have no problem running experiments on myself bc in the end someone has to do it. I know that 2 years ago when I cut back meds and took supplements that I had the best health I've had since I was 12. I am going to tell you what I am juicing, how much, and how often. I'm even going to break down costs so that you REALLY get a good picture. I am also going to work on finding natural supplements to switch to and take the place of the medications I am on.

I do NOT plan to cut out my vest treatments, inhaled meds, current antibiotic treatment for my sinus infection (although nasal rinses and garlic would probably help better), and I am still going to take my enzymes. However EVERY OTHER pill on my list(besides supplements) has got.to.go. PERIOD. I also plan on doing this in conjunction with the new medication (kalydeco) so Ill try and describe the differences I feel with each. Wouldn't it be awesome to take a handful of supplements that have NO side effects, do my nebs and vest, and drink some juice (or tube it if the taste is awful).

I am sure my doctor with be 100% NOT SUPPORTIVE. What else is new. So Ill be sure to tell you what she says. My next clinic visit is March 14th.... what will it bring... excitement for sure!!!

If anyone has any awesome links to anything, contradictions, whatever please share! THIS IS A LEARNING PROCESS FOR ALL OF US!

** I do not have a PHD and I don't know you or your CF history. Please do NOT just jump blindly into coping what I do. I spend HOURS/years doing research everyday to learn the things I know. And I know I hold some controversial beliefs. Please do your own research and talk to your doctor.

Jessica

When are you getting your medication?

2012-02-09T20:32:00.000-08:00

Much to my suprise -but gratefulness - my doctor did as promised and called me around noon on Wednesday. She called to update me on how the meeting with the Vertex drug rep went. She said that they needed to send in some verification paperwork like a HIPPA form, medi insurance release forms, genotype verification, and some other medical test. She said there are some meds that react to it and must be stopped, however she said I wasn't on any that are on my list (with the exception of garlic and fishoil bc I just started them and Ill ask my pharmacist when I get my script. PLEASE verify all information with your pharmacist as they are the ones who have clear information bc its their job) but you can compare your list to mine for a heads up. So she said ones they get everything in then a vertex rep would call me. She warned me it could be 2-4 weeks until I heard something.

SUPRISE

At 3 a vertex rep called me for a verbal ok on the form so that she could go ahead and submit my insurance paperwork and get the script to CF services pharmacy. This lady told me that so far every insurance she has sent the paperwork through had APPROVED the medication, some took a doctors letter and what not, but no denies yet *fingers crossed*! She said several people have already gotten the medication and are taking it .... And that I should have my medication in hand in under 2 weeks.

I'm excited! Have any of you gotten it yet? Have you been called? Anything?

Please keep me updated on any new information you have and I will keep you guys updated on my side.

Clinic & Kalydeco update

2012-02-01T19:58:00.001-08:00

I had CF clinic today, well actually it was scheduled PFT's && since I was there I begged that the dr came up and saw me. For starters my PFT's bombed. They were 39%. Thats down from 47% 1/2 way through my hospital stay. I was super disappointed. The upside is that its likely related to a sinus infection. I've been having HORRIBLE facial sinus pain. I thought they were migraines but imetrex,excedrine migraine, nor caffine, were helping so it has to be sinuses. Hopefully I'll get in to see the ENT dr soon and we can get some sinus surgery done.

Now for the update everyone probably wants. Kalydeco.

My dr said that EVERYONE was caught off guard by the medication getting approved 3 MONTHS ahead of schedule. They were contacted by a Vertex drug rep yesterday afternoon and they have a meeting set up for the 8th of Feb to talk about getting the medication to patients. My doctor said I should have a script and/or the medication within 2 weeks. The only pharmacy set to carry the drug as of now is the CF services pharmacy. NOW for the really upsetting news - the drug is a $30,000 a month drug. Getting insurance approval might be hard. Vertex however is setting up a program to help the roughly 1500 patients get the medication.

Well thats all I know. She said she would call me first thing wednesday morning to let me know what was going on, so as soon as I know, ya'll will know.

My life was saved today.

2012-01-31T09:17:00.000-08:00

My brain is doing kartwheels so I'm going to try really hard to prevent this from sounding like a blob of a blog.

Today my life will be forever changed. Kalydeco was approved.

For those that don't know, Kalydeco (VX-770) is the first drug developed to actually treat the CAUSE of cystic fibrosis in the G551D mutation. Everyone with cystic fibrosis has 2 mutations. In my case I am lucky enough to have the G551D mutation. In studies of the drug (and several participants I talked too) lung function was increase anywhere from 10-20%. It also helped in an overall decrease of cystic fibrosis symptoms.

I don't even comprehend how this will effect my life. I mean for the first time I might be able to plan life around things I want to do versus planning it around vest treatments or hospital stays. I mean those things won't totally go away because THIS IS NOT A CURE, but its a damn good option until one comes along.

A 10-20% increase in lung function would put me a 57-67 (based on my last PFT's), however if I use my baseline which is around 65% then that puts my lung function up to 75-85% - THATS WITHIN NORMAL RANGE. Normal lung function, I don't even know what that is. My whole life I've floated in the 60's. During my workout yesterday the hardest part was breathing, I can't imagine what it will be like to not have to struggle to breath while working out. Maybe I'll actually be able to run a mile? Maybe I can actually go an entire week and FEEL GOOD, not just alive. I'll be able to take Olivia to the park and keep up with her. I believe these are also only lower limit possibilities! In conjunction with what I'm already do to improve my lung function I imagine my health is dramatically change and I won't even feel sick.

What is life like without cystic fibrosis? I think some of us will have a hard time coping with life with limited illness. I know that sounds weird but when sickness is all you know its hard to comprehend not knowing it.

I would love to know more about this drug. I want to know how it will effect my diabetes. I want to know if I'll have to continue with tube feeds. I want to know how often I'll still have to do the vest a day. I want to know if I can decrease the amount of enzymes I can take. I want to know if I will day my medication list down from 30 to 15. Most of all I want to know how soon I can get on it.

I go to clinic tomorrow and I will be asking TONS of questions and finding out when I can get this medication. Ill have an awesome blog post tomorrow so def check it out. Also if you have any links at all on this medication PLEASE leave them here or on my facebook. This is an amazing find for the cystic fibrosis community and hopefully the other drugs in the pipeline will have just as amazing results and CF will stand for CURE FOUND.

Working harder on better health

2012-01-30T09:45:00.000-08:00

I've decided to kick my "health-kick" into over drive! I'm determined to get my PFT's up, this heart rate down, and this damn cf pooch GONE for GOOD!

The first thing I've done is change the way I eat. I've decided to start eliminating as much sugar as possible. Sugar is bad for the immune system. I get alot of my sugar from drinks vs food. I've successfully cut out soda all together. Those that know me know how hard this was. So now I'm working out cutting down koolaid (or at least the amount of sugar in it). I'm trying to stick with mostly Gatorade and real fruit juice. This leads me to my next change -WATER.

I hate water, but its necessary and it thins mucus. A well hydrated body is over all healthier. In the hospital fluids helped bring down my heart rate so hopefully this will help at home too. I'm starting low bc 64oz of water a day just seems impossible for me right now. So If I can get 24oz of water a day, Ill be satisfied with that, for now.

Healthy eating is the 3rd thing. I'm trying my best to cut out all processed foods. This is pretty easy bc I don't eat that much anyways but I want them ALL gone. Processed foods are full of chemicals & low in actual nutrition. They are just point less cals that my stomach can't digest anyways. I've added more fruits and veggies (well over the 5 servings a day amount). A serving a fruits/veggies is actually not alot so eating 5 servings is pretty easy. Seeds, nuts, raisins, are all good snacks too. I'm also still keeping meat in my diet. My iron is very low so I need it from an source I can get it from!

I'm trying to cut out as much dairy as possible as well. I only wanna use it in what I cook & my nutren at night. Diary makes mucus thicker, so it sounds like a no brainer to me.

I'm also going back to supplements. I was the healthiest I've been in 5 years when I was on supplements. I'm already taking Iron(3, 65mg caps), Vit C (3,000mgs ), Vit D (50,000IUs a week), and my Source CF vitamins. I'm planning on adding garlic bc its a natural antibiotic, fish oil bc its an anti-inflammatory, and a cold probiotic. I'm hoping these will help do the trick like before.

And finally exercise. This morning I start Jillians Michaels 6 wk 6 pack...it was hard! Well let me rephrase that, the workout itself wasn't hard the breathing part was insane! At one point I had to sit down and I checked my 02 and heart rate. My O2 was 91 and my heart rate was 180. After the workout and cool down it drop to 125 with an O2 of 98. My heart and lungs def need the strength building.

Obviously medication and cpt compliance is on the forefront of helping fight this but I def don't think its the only way to fight this. I have a dream of one day being on NO medications!!!

Another thing I've been thinking about is juicing. No No, not steroids, but JUICE. It seems like having all those micro nutrients would help the CF body rid itself of all the free-radicals out of the body, slowing down the rate of infection. Juicing involves large amounts of fruits and veggies to be drank throughout the day. I've read some pretty interesting stuff on how it helps with Cancer, if it helps cancer why not CF??? If any cystics have any first hand knowledge about how juicing has helped them, I would LOVE LOVE LOVE to read it.

Well the timer on my vest just dinged so its off to eat something besides grapes for breakfast :)

Sadly, none.

2012-01-17T17:24:00.000-08:00

I have been hoping and pressing my doctor for SOME kind of update. Sadly, there isn't one. My first set of cultures only show a very small amount of psuedomonas. I was able to give a better culture on Sunday, but those results are still pending. I am on Tobramycin & ceftazidime, so I have good coverage for the general stuff.

She did place me back on ursidol (actigal) which is a medication for my liver. Apparently my liver count was elevated and she decided I should go back on it. Thankfully at the moment that is the only new medication I've been placed on.

She saw my sinus CT and agreed with everyone else I've ever seen, "you have the worst sinuses I've ever seen". However she doesn't wanna to sinus surgery while I am admitted this visit. Thats bittersweet to me. Part of me thinks that we need to get my dropping lung function & racing heart under control. However another part of me thinks that maybe having my sinuses done would help eliminate more infection my body is fighting. :/ VERY unsure about this.

I have HUGE issues with how un-proactive my doctor is. I am hoping to talk to a new CF dr this week & get a general idea of how he would do things. WHY is it so hard to find an aggressive dr that likes an aggressive patient??

I am sorry for missing 2 days of updating, I've been battling sinus headache gone migraine - I'm slowly winning the battle but not thrilled to sit on a computer. I hate that I don't have more to update about. I'm going to log off now & watch some TeenMom, Extreme Couponing, & whatever other silly reality TV I can melt my brain into.

Thanks for reading & all the prayers!
Jessica

I'm back nananananana na....(ya know that eminem song)

2012-01-14T18:08:00.001-08:00

I know I know, I said that once and then didn't keep it updated. Life has just been all over the place & I have struggled with whether or not I wanted to clue everyone in or keep life private. I miss the support from everyone and keeping up with their blogs, so I'm back. So much has happened so it will probably take WEEKS to catch everyone up.

Tonight I'm gonna give a vague update and slowly explain over the next few days. I think if I tried to include everything in one post all of our heads would explode haha.

Take a good look at the side of my page - TONS of life & medical changes.

I'm currently visiting club med. My goal is to be out of here by the 27th because my daughters birthday is Jan 28. My current lung function is 35%. In Dec it was 40% when I was admitted, 44% when I was discharge. In August it was 55%. A year ago it was 64% (2.04liters). Something crucial is obviously going on. My doctor and I have different opinions on why the drastic drop.

The good thing is that while I feel crummy, I do NOT feel absolutally horrible.I'm hoping this allows me to majorly jump back and feel fabulous!

Tomorrow I'm going to update about all my tummy issue, Monday I hope to have a good lung update but I def wanna include info about my cultures so that its more complete. Tuesday will be an topic about how our kids handle our illnesses. Are there any topics you guys are wanting to see on the blog? Updates you would like to know?

Ahh good ole respiritory is here for my treatments. I'm hoping to go to bed right after since we all know sleep in the hospital is hit and miss, so I'm fitting it in when I can!

Thanks for all the support in the past & the support I know will come in the future. I hope you guys are as excited about the return of my blog as I am!!!!

Jessica

I'm sorry

2011-08-16T09:02:00.000-07:00

Yesterday some crazy major things happened in my life...

I don't know what to think, and therefor can't blog about anything bc I can't seperate thoughts. Please give me a day or two to get my brain back ...

Where I'm at these days.

2011-08-14T09:22:00.000-07:00

I am finally all settled in, yes I've moved. I've been super busy getting new referals and setting up consultation visits. It should be unconstitutional for a person to have to see 10 different doctors. So far we have:

CF(cystic fibrosis) clinic
GI (gastro)
Orthepedic back specialist
Pain Management(apt tomorrow)

I still need:

ENT (ear nose throat)
Endocrinology
Physical Therapy
Medical Supply

Hopefully that's it. I've had a very hard time finding a place to get feeding tube supplies from. No one in the are seems to want to take my insurance. So far it looks as if I'm going to have to use an out of state pharmacy. That's a whole different set of issues.

I'm also working on getting my meds refilled, and boy am I suprised how hard that would be. My primary dr refuses to write any specialty scripts, so basically he won't refill any of them. Luckily I have some back ups until I can see the appropriate drs.

Things in my life are going pretty swimmingly right now. I have alot of chaos going on, but its controled chaos. I'm not sure if I'll share all the news going on, I don't need the judgemental negativity on my plate. I miss everyone and I can't wait to get caught up on what everyone is doing and how they have been. I have some great blogs in store, so STAY TUNED! (cut me a little slack as I get back into the swing of writing)

CF && Sex

2010-09-30T11:09:00.000-07:00

{This article may not be suited for viewers under the age of 18(as well as my mother & father, as it does contain information about MY sex life and how it relates to my CF}

I'm an adult, 23 to be exact. I am married, for almost 4 years now. I have a husband who L-O-V-E-S to roll around in the bed sheets. And I won't lie, I love having sex too. When we first got together we were doing it like bunnies... {sorry for the anology and I'm trying to make this as close to G-rated as possible}.

What's the old say "when a marriage grows the sex goes".... ok maybe I just made that up, but its a known fact that as time goes on you don't tend to have as much sex. But the truth is I WANT to have lots of sex, I love having sex and I always feel better after having it....the problem is feeling good enough to have it.

I feel so bad for my husband sometimes b/c I KNOW he just wants it (and I wanna give it to him) but I feel bad. And sometimes my feeling bad last for weeks and weeks. I tell him we can do it, but really who wants to do it with someone that really isn't "into" doing it.

Between meds, being sick, and the everyday stressers of life its sometimes really hard to find a sex drive. Sometimes I force myself to have a sex drive. I find that if I get up and put some effort into myself that I am more likely to be "in the mood" that night.

Of course the last thing I want to do is add another pills to my regime just to make my girlie parts do the deed (ok I don't even know if they have a pill for that). I just want ONE part of my body to work right...and work right when I want it too!

So CF definitely impacts my sex life. I could be in the mood one minute and not the next. Its def hard and I'm trying to find that balance in my life so that everyone in my families needs can be met. So those with CF how does CF impact YOUR sex life???

I think I need a doctor...

2010-09-26T18:21:00.000-07:00

I am having so many issues right now its insane!

Let me start with the fact that I am on a few new meds:

oxycotin 60mgs -2 x's daily.
oxycodone 15mgs - 1 every 4 hrs as needed
Klonipin .5mg - 1 as needed. (I tried xanax first per DR request it didn't work like I said it wouldn't, so we switched.
Calcium + Vit D 500mgs - 2 times daily
Keflex - my last dose is tonight.

Those are the new meds. Everything else is the same. So now here are the issues Im having and some I've been having since I was in the hospital.

First today I noticed (my husband claims he noticed a few days ago) that my feet and ankles are really swollen. I normally have very boney feet, now they look realy fat, ankles too. One of them actually hurts to touch and is bruised.

The next is that the top of my left ear had no feeling at all yesterday. NONE. Today its still close to the same but I can feel that its really warm and somewhat itches.

Next is TMI - I have been having a hard time peeing. Like I have to squeeze really really hard to make myself pee. I had this issue in the hospital and they checked for UTI and everything and it was fine. They claimed its the "pain meds"

Next is TMI - I am going "number 2", but the issues I'm having are hard to explain. I am going and going often, but they aren't like "full" bowel movements. My stomach feels off & on distended and hard. When I wasn't going they of course said "its the pain meds" and then now that I am they say "well pain meds can cause diarrhea too"

I am running off and on feverish feelings. I haven't taken my temp bc its too much effort to walk downstairs and get it. One minute I feel good and the next I feel bad. I just wanna always feel good, and I don't wanna have to be doped up on meds to feel that way.

So if anyone has any thoughts, please throw them out there I go to clinic on the 29th.

Depression Meds & Terminal Illnesses.

2010-09-12T18:56:00.000-07:00

Even in today's open society anti-depressants are still a very taboo topic. People that need them are often to afraid to ask for them because either they think it means they are looney or society judges them. Noone wants to have a label, much less a negative label. It takes alot of courage to admit that you are depressed, anxious, or just not able to deal with your emotions. Alot of people also don't realized when they are depressed because depression is not just about being "sad".

Depression: An illness that involves the body, mood, and thoughts, that affects the way a person eats and sleeps, the way one feels about oneself, and the way one thinks about things.

I think its important for people with depression or other similar mental illnesses to have them treated. I think mental illness is just as dangerous to leave untreated as something like cancer. I also think its important to have the right professional prescribe and manage the meds. I mean you wouldn't let your pediatrician treat cancer, so you shouldn't let them treat depression either.

Another important thing to note is that being depressed isn't just about being sad... and that's where my story begins.

The first time I was every on antidepressants was in 2006. I had my miscarriage in Dec 2005. It took me MONTHS to work up the courage the ask my doctor for something for it. Once I finally opened my mouth to ask for them EVERYTHING spewed out and I ended up in tears. HOWEVER she was so warm and understanding. She even related to me and told me that she too was on them. So I started taking zoloft and referred me to a counselor. Within 6 months I was off the zoloft and I continued counseling for almost a year. While in counseling I was also diagnosed with OCD, however zoloft is the perfect treatment for that. It was a very great experience and was a turning point in my life.

Since them I seem to have been handling my life ok. In the last 4 years I have been through marriage, basic training/ait, pregnancy, birth, NICU, deployment, marital issues, baby momma drama, being diagnosed with diabetes, ICU visit, my parents divorce, a second deployment, 2 years of college...and so on. I thought I was handling everything pretty well. Of course I get lots of comments about how I am really strong and noone knows how I do it all, and heck even I don't know how I do it all.

Dr.J however thinks I take on WAY to much and won't even let me go home on home IV b/c she thinks its too much. At one point she put me on xanax to help with anxiety and it helped. Then it started causing me to be too out of it and I got off it. I thought I was doing fine. I really haven't been sad or anything. I mean stressed, of course, but sad never. I have a wonderful life.

The last 10 weeks I would say I just haven't been myself. I haven't been sad, but just haven't been "with it". I thought it was just me being sick. I have been having stomach problems and having no appetite. I have been in "pain", and not just sinuses but just all over. In spite of an awesome lung function I still just feel sick. I have seen tons of doctors, have had tons of tests, and all have been normal.

About a month ago I thought to myself, "hum maybe its depression b/c I am having all the symptoms of, BUT I am not sad so it just can't be", and I just blew it off. My doctors have suggested a few times that maybe I should get counseling, I said to them as well that I was fine. In my medical records it was also suggested that maybe I was using pain medication so self medicate for depression..and hindsight 20/20 maybe I was.

Soo 2 days before my discharge I finally worked up the courage to ask for some depression and anxiety meds. Honestly, I am a little shocked at how quickly the meds got to me. He was also very warm and understanding. He said that he thought it was the best course of treatment and had faith that most of my undiagnosed health issues would resolve themselves after treatment.

He started me on zoloft && xanax as needed. So far, its working awesome. My appetite is coming back, my pain is subsiding, and my sex drive is coming back. I am really hoping that I continue to get good results. I am going through the typical shaky feeling that you get when first starting them, but thats really the only side affect. I also haven't needed the anxiety meds since getting out of the hospital which is FABULOUS!!!

I think that those of us with terminal illnesses or those of us that take care of someone with a terminal illness, have a different kind of stress in life. We have to deal with our own mortality years before its actually at our feet. That in and of itself is depressing. Who wants to think about death? I know I don't, but I do, not all the time but its there, especially on the bad days. I always try to be a positive person. Negativity is not something I want in my life. However sometimes I feel like the positivity is fake -and I hate being fake. People tell me all the time that I have every right in the world to break down and cry because of what I deal with BUT when I actually do that I am told to suck it up and be strong because where is crying going to get me?

I also think depression in those dealing with a terminal illness have a different kind of depression than other people.Now this is not to say that our depression is more valid than others, its just different. I don't think our depression is an everyday thing and I think that our severity of depression is related to how well our health is at the moment. I know that when I am sick I am much more prone to be over dramatic and therefore depressed.

I also can't imagine what its like for care givers. I know that if something EVER happened to my daughter I would be devastated, so I think mothers to the terminally ill are among, or possible even THE MOST, strong people on the planet! I think that the depression of a caregiver is even different from those that have the illness. CF caregivers have so much more on their plate. I would love it if a CF mommy would write a piece on how depression has played a role in your life and dealing with CF. I don't want to speak here b/c I am not a CF caregiver.

I hope that posting this allows other people to step out and have an open dialogue. I also hope it lets others know that they aren't alone and that taking meds doesn't make you a weak person. I hope you guys enjoyed the post and I would love to hear YOUR stories of depression. I will keep everyone updated on how things are going for me in this area.

O and you know what always makes depression better? Buying a new mini-van. I just purchased a 2005 chevy uplander. This is MY FIRST vehicle that I am buying and paying for myself!

Love
Jessica

already Thursday and my week seems to be getting longer.

2010-09-02T18:19:00.000-07:00

Its been a very long week for me emotionally. Most of you know that I was in LSU for 2 weeks at the end of june/beginning august. I was discharged and had a great lung function. I wasn't feeling 100%, but assumed it was just stress and would be fine when I got home. The week after I got home went well. My health was improving and everything was looking up. I then started to feel bad again. I got the cough and stuff, but I also started feeling really weak.

The purpose of my current hospital visit was sinus surgery BUT b/c I wasn't feeling well we decided on another 2 week visit. Soo here we are 1.5 weeks into my stay and I'll likely be here for 2+weeks.

I have an infection in my blood and thats what has been making me very sick. This infection has a 40% mortality rate (20% higher than MRSA). They are treating it with mycofungin.

Yesterday I had my port removed. It carried the fungus and there is no way to get the fungus out of the port. I cried when they said I had to have it out. I HATE getting PICC's. But its out, and it hurts. I had NO idea how bad it would hurt to get my port out, but I can barely move the right side of my upper body.

I also got a PICC. I hated it. I cried like a big baby the whole time they were putting it in. They had to give me a xanax for anxiety. It actually was a very smooth procedure, I am just sick and emotionally drained so it got to me.

I also had an ECHO done. I don't know the results of it yet. My dr came in really early and I wanted to sleep instead of talk. So tomorrow we will talk about it.

B/c of the dangerous nature of this illness, my mom and sister are driving in tonight. They are gonna stay for a little while and help get things ready at my house for the move.

Right now I am just feeling mentally and physically drained. I've spent most of my days sleeping and trying to stay out of pain.

I thank everyone for the well wishes and prayers. I have also gotten a few messages about how people can send me cards and such. I do NOT know the address. A friend of mine was trying to get it and when she does I'll put it up here for others that would like it.

Thanks everyone!
Much Love
Jessica

really bad & serious health update

2010-08-31T10:14:00.000-07:00

Towards the end of last week I started running a fever. It was between 101-103 for a few days. This prompted Dr.J to run some blood cultures. She tested cultures that came from my port and directly from my arm. The cultures from my port came back negative but the ones from my arm were positive. We started me on IV diflucan. Today she came in to tell me that upon redoing and rerunning the old test something was mislabeled. It turns out the BOTH cultures were positive for yeast. To top it all off the type of yeast had come back : candida glabrada.

This type of yeast is very dangerous. Its only treatable with 2 different drugs, one of which has awful side affects. So they are starting me on mycofungin. If this doesn't start to improve it then they will switch to the other drug with the bad side effects. The infection is actually in my blood stream AND in my port. Because of the infection they will be removing my port in the next day or 2. Today they will be putting in a PICC line to take its place. The treatment takes ATLEAST 2 more weeks. So obviously I will be here for atleast 2 more weeks...o joy!

I am not looking forward to a PICC b/c I have very bad veins. Hopefully they will put me under light sedation so that I will not be in to much pain b/c of it. Once they have treated the infection and its gone they will replace my port before I am discharged.

Here is where the real seriousness comes into play: This type of infection can affect multiple organs and parts of the body. 2 that apply to my situation are the eyes && the heart. I have been having lots of blurry vision -this could be a result of the infection. Its likely not reversible even with treatment. The next is my heart. The infection can cause yeast to affect the valves of my heart (I am not sure how and Iam NOT researching info on this). The reason this is a big deal is b/c I have been having heart problems for months now. If the infection has damaged my valves they will have to go in surgically and fix the problem. I don't know if they do this laproscopically or if its actual open heart surgery -but the words "open your chest" were spoken.

This illness is nothing to play around with. MRSA has a 20% mortality rate...This fungal infection has a 40% mortality rate. Its so bad that my doctors all stood out in the hall and argued over who would be the one to deliver the bad news. And not one of them had a "it will be ok" look on their face. It was all very gloom and doom.

I am not sure how to feel, right now I just feel tense and could really use something for my anxiety. Please everyone PLEASE say some prayers for me. I don't think I have ever really been this scared. I wasn't even this scared about being in the ICU...but this...this terrifies me. Yet I have to be strong. I have to put on my big girl panties and make everyone think its ok b/c everyone else needs to be able to break down.... eventually I am going to need a shoulder.

Hospital Update

2010-08-26T13:06:00.000-07:00

Im here, admitted, and settled in. We are on day...4. Dr.J is bustin ass to get things figured out and me well again.

Tomorrow I have my 4th sinus surgery. I am so ready to get it over with and I am hoping that my face pain goes away and my sight quits being blurry in my left eye. So prayers for that please!!!

I started my 14 day heart monitoring. I wish the little machine actually showed what was going on, but I guess it just relays it to the nurses station. I odd as this sounds, I hope my chest pain shows up while I am on this. NO not b/c I want something else, but b/c I want to know if its actually something to worry about. This morning I also had some extremely low blood pressure. It was 72/43. 78/44. 85/48. and finally 99/59 ... dunno what caused it, dehydration, maybe?

GI is 99% positive that I have severe pancreatitus. All my symptoms and issues seem to fit this. Until things get better they said that essentially I will be tube feed. I can eat if I feel up to it, but they don't think there is anything that will really improve it to where I can go back to "normal". They took my down for an MRI (it was an mri but called something else) this morning. I am soo grateful that the Radiologist was nice and understanding b/c I was NOT happy about getting put in that little tunnel. Even the thought of it makes me tense up. She was really awesome about it, even though I freaked out and she had to pull me out of it 2 times and push me back in. We were both trying really hard not to sedate me b/c this specific test relys on normal breathing. Of course it didn't matter b/c even my "normal" breathing is erratic. Sometimes I'm a tummy breather, sometimes I am a shallow lung breather, and sometimes I am a deep breather...and when I try and have control over it I actually forget to breath...go figure!

I also had a consult with pain management. They switched me from percocet to oxycodone to see if maybe the percocet was what is making me nauseas. I think the oxycodone is making me more nauseas. O well I am not even worrying with it b/c tomorrow I will be on something different. The lady that came was very nice. She informed me that in my charts it mentions that I am likely "drug seeking". Well she told me that and then asked me about how many pills a day do I take. I informed her that I take 2-4. Normally I just take 2 in the afternoon. But sometimes I might be one before bed or 1 when I wake up. She laughed. She said that "drug seeking" patients take 10+ meds a day -NOT follow the prescription perfectly. So she wasn't worried about it. This in turn also made Dr.J not worry about it anymore either. Dr.J told me that she doesn't treat pain or know how to treat pain so she doesn't know what it too much etc. I'm so glad she is leaving it up to them. The pain management team also said that unless they are a PM dr then most docs now think anyone who needs pain medication for longer than a few days is drug seeking. She said that long term pain is not something doctors are really taught is normal and ok.

SOOO thats been my week so far. Lots of sleeping too. Soo right now I am getting off here and I am gonna take a little afternoon snooze. I can not get on any blogs (which stinks) however I can get into my dashboard. Also I get all comments in my email so if you leave them I CAN read them and I would love some words of encouragement, love, prayers, and such!!!

Sorry its been a while!

2010-08-22T13:47:00.001-07:00

I apologize for my lapse in blogging. I've been really sick and just stuck in bed upstairs. Tomorrow I get admitted for 2 weeks of antibiotics. Yea I know, I JUST got out 2 weeks ago, but apparently something didn't get fixed. I honestly think its just my stomach problems b/c I don't feel too bad in my chest. A little cough, but its not productive, just annoying.

While we are in we are - doing MORE stomach tests. The doctor thinks its either C.Diff or gastroparesis. I still haven't eaten (well and kept it down). Right now I am living on popcicles. I am forcing myself to eat but its not pleasant. I can't even do my g-tube feeds. I went to the dr on base this last week b/c Dr.J said I needed to be tested for C.DIFF asap, and the base told me NO. They said that I could just wait until I saw her b/c it wasn't urgent enough. UM WHAT? I've been having stomach issues for 6 weeks now and this isn't urgent??? Whatever, I'll get tested tomorrow.

We will also be doing my 14 day heart monitoring so we can find out about this chest pain. A friend of mine deals with the SAME issues. And she has an aortial tachycardia. She said it took a 30 day heart monitoring to catch hers. I just hope we find whatever it is out.

We will also be doing my sinus surgery on friday. I have been really lucky the last few days to have very little sinus pain. I think God is blessing me since I didn't get to pick up my meds before the pharm closed. I've been staying on top of my IBU and sinus rinses too.

So on top of all this, my husband is deploying in less than 6 weeks. I am moving back home and we have an entire house to clean and pack!! AND I start school again on the 31st. AHHHH!

I just want to screaming. Ok I actually AM screaming! This hospitalization is just at the WORST TIME!

I will try and update this as much as possible while I am in the hospital. HOWEVER I believe that blogger is blocked (yes this is the ONE downside to my fav hospital). I think I might be able to get to the update page but thats it. So you'll have to keep up with me on facebook. If you don't know it email me and Ill give it too you, b/c ya know, who doesn't have a facebook now a days haha.

I love you guys! Thanks for all the emails, messages, and comments with well wishes!!!

Sinus surgery update

2010-08-17T15:56:00.000-07:00

I spoke with my CF doctor today, finally, and surgery is a go. I am scheduled for surgery on the 267th (next friday). The plan was for me to come in on the 26th so that all the pre-op stuff can get done. However Dr.H(ent doctor) mentioned to Dr.J (CF doctor) that at my appointment I looked awful and i had decreased breath sounds in my lungs, as well as come crackles -UGH!

SOOO instead my game plan is to be admitted on monday and then stay for the surgery AND 2 weeks of antibiotics. During this time they will also be running a ton of GI tests AND my heart monitoring. Dr.J thinks that I have C.diff OR gastroperesis.

Another thing that my doctor is concerned about the fact that my husband had a positive TB test. NOW he has had 2 false positives before, but I'm still worried and so is Dr.J. She wants DH to go have a check x-ray done tomorrow. And she gave me some other info about what to do for it and symptoms and what not. But yea Im paranoid.

I am nervous & bummed. While yes I want to feel better, I do NOT want to get my neighbor again. I feel like I'm asking too much from everyone else. Not to mention I JUST got out of the hospital.
In case you were wondering, YES Dr.J is on call for the month of august. She leaves on the 1st. I am sure everyone is thinking "omg who are you going to see b/c Dr.Bitch refuses" ....well my loverly Dr.J said that she spoke with Dr.H (the adult pulmo dr) said that he didn't mind taking care of me when dr.J left. YAY! I liked him, he was a very open . Also I get to go to my favorite hospital instead of HELL HOSPITAL!! So the next 2 weeks should go by great!(well as can be expected).

Tomorrow I have to take Olivia to a pedi appointment. Partly to make sure the referral is in and get another sweat test ordered. But she needs a weight check b/c she isn't eating much and looks like she has lost weight again. She too has been having tummy issues. She has come up to me fore 4 days now tell me her tummy hurts. She has either had diarrhea or she is constipated. So hopefully we can figure out what the deal is with that.

SOOO other than that, nothing new. lol. Hope everyone is having a good tuesday.

*jess*

pregnancy & my daughter whom may or may not have CF, Part 5

2010-08-15T20:05:00.000-07:00

1,2,3,4 Read the first 4 parts of my story.

SO my baby girl is 6 months old. To date to had been in the NICU for 10 days with a high heart rate and severe jaundice. We came home and she still needed to be on the biliblanket for 1 weeks afterwards. We spent most of our time, nursing, pumping, and sun bathing!

Between 4 && 6 months she only gained around 8oz. Every since she was born she has had a cough. I have taken her in thinking she was sick and it was nothing. I took he to the doctor b/c I just knew she was sick. She was dx'd with Failure to Thrive & she had a MRSA lung infection. My husband and I decided that we needed to pursue more genetic testing.

Now when I was pregnant with Olivia we had my husband tested to see if he was a carrier of the 98 most common mutations. He was tested with his oldest son, but I wanted him re-tested for piece of mind. It of course came back negative. I am soo relieved.

But around 6 months we were both rethinking that maybe she needed to get a sweat test just in case. So we made an appointment with a geneticist. The procedure went great. She was really good during the whole thing. The doctor was extremely nice and told me that he would call me in a few hours and let me know the results.

8 on one arm and 7 on the other...

I was soo soo soo relieved. I had told myself that if it was negative I would let it go. So I did.

From 6 months until about 15 months she still continued to struggle with her weight. At her 15 month check up, she was around 18lbs and 29 inches. This finally put her at the 2% mark of the growth chart. They were only semi-worried at this point. BUT there assumption was that since she would be eating real food, that she would start to gain. And while that's a great theory, she was already getting read food along with breastmilk.

From 11-17 months she had alot of issues with sinus drainage and ear infections. We actually came to the point where they wanted to put tubes in her ears. I of course did not want to do that b/c of the risk, or them falling out, or whatever. So we tried something else. We put her on saline nasal spray and 2.5mg of zyrtec. Her ear infections finally started the go away. I personally think it all had to do with teething, but regardless they were better and she didn't need tubes.

During the rest of the time from 15-23 months, it was pretty uneventful. I took her in a few times for a nasty cough, but it was nothing. They told me I was just worrying for nothing and sent me on my way. Another time they gave me and inhaler/mask and said to do it when I needed too.

Finally her 2 year appointment rolled around.

I went in and was just extremely frank with them. I told them that she always had a cough and a runny nose. I told them about her weight issues. I told them about my CF situation. I told them about her poop. And I told them about about her MRSA lung infection. Then I said I want my daughter fixed, so fix her!

So she listened to her and her cough. After her inspection she told me that she thinks Olivia has asthma. She started Olivia on 5mg of singular and upped her zyrtec to 5mgs a day.

I also told her about her poop issues. I explained that sometimes its diarhea and sometimes is large and bulky and she strains really hard to get it out. So she told me to give her 1 scoop of miralax daily OR as needed. She also mentioned about how she did notice that Olivia has a distended tummy.

By the end of our conversation the doctor turned to me and said "Have you ever had her tested for cystic fibrosis?" So I explained that whole story. I told her that I wanted another sweat test and that I wanted a full genetic panel run. So she put me in a referral for my CF doctor.

Well 1 month later I have to take Olivia back b/c she is starting to look really skinny and her cough is getting worse. They said there was nothing wrong with her that they could tell. They ran some blood worse, a urinalysis, and chest xray. Everything was "ok". But they said I need to get to the CF doctor asap.

So I call.and call.and call.and call. I never recieved the referral. I had it faxed 4 different times and NOTHING. Finally I just brought her referral in with me.

Then the circles begin.

I wanted a full genetic panel run. They are one of the only companies to test for all 1500 known mutations. { Honestly I was not aware of how many CF mutations there were OR I would have had my husband tested for all of them before we got preggo. Also I met someone that told me that her son has a negative sweat test BUT he had 2 CF mutations...so yea it was time}

Since May, I have been running in circles trying to get a referral for a blood test. Her pedi said the CF clinic had to do it, the CF clinic said her pedi had to do it, tricare said anyone could do it. Its been on and on and on with this.

So I called Ambry Genetics and talked to them. At this point I was just going to pay for the test myself. Well turns out the test is about $1800, so I obviously needed insurance to pay it. They offered to send me the test kit so that I could just bring it in somewhere. I was excited, it seemed like the first good step in the right direction.

I then called the lab on base to make sure that was ok. The lady was confused at first, but said that it was. So now I just had to tell someone what to do. I went to the Ambry website and got all the insurance codes, so that I would have them in case noone knew what to do.

FINALLY! Friday morning I called her pedi and talked to the triage nurse. I told them the whole story and she was going to get the doctor to call me back. Around 3 she called me back and get the information she needed. At first she didn't understand why Olivia needed it. Once I told her everything she was like, I am terribly sorry. Almost like she just knew it was going to be positive for 2 mutations. So she got the entire referral put in the system and told me it would be about 5 days before it was approved. She said when I get the approval that I needed to call her so that she could talk to the lab.

So as of now we are playing the waiting game. Hopefully I can take her this next week and get the test done. After that it can take up to 6 weeks to get the tests back. We know she is automatically gonna have one of my mutations. The hope is that its the G551D mutation.

So here is the run down. At 2.5 years old she is only 25lbs and 35inches tall. She has asthma and his dx'd failure to thrive. She is on 5mgs of zyrtec and 5mg of singular.

Aside from this though, she has always been a pretty healthy kid. Which is nice!

Well thats it for my series about conceiving, pregnancy, and my daughter. As soon as I find out the results of her test I will let you know and we will go from there.

I hope you all enjoyed. If you have any questions about any part of 1-5, please ask them. If you want to know about any medications I was on, give me a few days and I should have my medical records from that time. If you want to know about ambry genetics ask me, or check out there website!

This week I am going to put out a story about my g-tube and everything about it. So be watching for it!

God Bless
*Jess*

pregnancy && my daughter whom may or may not have CF. PART 4!

2010-08-14T20:57:00.000-07:00

If you haven't you need to read PART 1, PART 2, & PART 3.

Its 11:50 pm on Jan 27th. The hall ways down the post-delivery hallway are dark and quiet. My nurse comes into my room and starts undoing all my monitors and IV tubing. She also tells me that they need to start a regular IV, so she does. Then she gets me to change into a gown...its GO TIME!

So I hope in my wheelchair and head on down to my room, the room that will change my life, and the room that I will meet my angel!

I won't lie, I was terrified and started crying while on the way down the hall. I was soo nervous b/c what if my daughter was born with trisomy 18. What if I only got to spend an hour with my baby. W hat if something goes wrong with my lungs and I die? What if I never get to meet her. What if she gets stuck in the NICU for weeks? What if, what if, what if, what if -shut up brain!!!

So they get me hooked up to monitors, fluids, got the o2 out (not on but could have it if I needed it), and gave me cervadil. Cervadil is something they put on your cervix to help it thin and get things started. To my suprise I was already 1 cm dilated. I was also having steady contractions but I really couldn't feel them...

Basically it was uneventful so we all went to sleep.

At 7:30 my doctor comes in and let me know that she is gonna break my water. At this point I am 3cm dilated but my contraction where still very irregular.(anywhere from 2 a minute to 10 minutes apart. So she broke my water and they started pitocin. I progressed very well over the next full hours.

Around 10:15 the nurses noticed that my 02 was getting low (about 92%) and the babies heart rate kept getting really high. So they said that I needed to get an epi to see if they would help. The problem: I did NOT want an epi and I wasn't in that much pain. But it was either that or c-section time. Obviously I got the epi.

It was done and in by 10:45am. Then they had to put the catheter in..omg it hurt soo bad. Apparently it was put in when I had a contraction and was in the wrong place. But I was crying ad upset about it. This was the only time I yelled at someone throughout my labor. But I'm crying and I have already made it clear as to why. Then my mom looks at me and goes "baby whats wrong why are you crying"...OMG I went off. I was like "seriously mom, are you even listening to me. The $%^@$@ catheter isn't in right and it hurts, get someone NOW!!!". So someone came in and fixed it and all was better.

At 11:15 I started feeling ALOT of pressure. I told the nurses that I had to poop. And they start freaking out. Apparently my doctor is 1/2 way across town b/c she didn't figure I would be delivering 4.5 hours after breaking my water. They are moving as fast as they can't to get things ready, my whole family is getting excited and freaking out, and in the mean time...I am trying ot whole a freaking baby in me lol. Lets just say that keeping a baby in when they want out is EXTREMELY painful.

At 11:35 my doctor comes running it and gets ready.

I didn't scream, grunt, pant, or freak out. I put all my energy into pushing and I just pushed with all my heart! My husband joked the whole pregnancy about how he wouldn't look "down there", but during labor the doc told him too. So he did. Next thing I know is that he has tears in his eyes and says "omg baby you can do it, our daughter is almost here, I love you soo much"...

At 11:47am my beautiful princess entered the world. She was 4lbs 11oz and 17 inches long.

But there was a problem. The cord was wrapped around her neck then around her leg and back up around her neck for a second one. Dr.T comes to the rescue and next thing I know I hear the beautiful sound of my babygirl screaming her head off.

They layed her on me long enough to get the cord cut off, but then they quickly took her over to the little table. They checked her vitals, temp, gave her a touch of 02, and they checked her body over for signs of trisomy 18....SHE WAS PERFECTLY HEALTHY... then her vitals were done and her heart rate was over 210. They said she needed to go to the NICU, now! I got to give her a little kiss and off she went.

When I was done getting stitches and all that I said to the doctor "Ok, lets go to the NICU now"...she giggled and informed me that I would have to wait until the epi had wore off. WHAT?!?!? At this point I've only had it for an hour, how long does it take?

SO my husband, mom, and sister went to the NICU to monitor her. I took a nap. And it's a good thing I did b/c little did I know that I would be awake for the next four days.

After my nap I quickly got up and got myself into a wheel chair. I was going to see AND NURSE my baby! When I got to the NICU door it was soo different. They had to buzz you in. When you came in you had to sanatize your hands. To the left was the high risk nursery and to the right was the step down unit. We made a left. It was so sad. There were soo many babies. They were soo cute, so tiny, so fragile.

We finally found our way to Olivia's isolete.

She was soo little. I just couldn't believe it. There she was, MY baby. The baby that everyone said I could never have. I hated seeing her with IV and tubes and what not. This was suppose to be MY lifestyle, not hers.

They said that her heart rate was slowly coming down. At this point it was still beating over 180, but it was coming down on its own. They said that she didn't need any oxygen. The nurse told me that her white blood cell count was up, so they had her on an antibiotic, just in case. And they said her blood sugar was low so they had her getting some kind of fluids with sugar going into her iv.

I was soo excited, all I could do was say - Can I hold her yet??? The nurse quickly came over and helped me get her own and into my lap. And there I sat in that NICU chair and marveled at my daughter. She was soo perfect. NO trisomy 18 and NO clubbed feet. Whatever happened from there on didn't matter b/c so far she had made it and she was a fighter.

The nurse came over and chatted with me. I let her know that I planned on nursing her and that I did NOT want her to have a bottle, a paci, or sugar water. I let them know that if she was hungry to call my room and that if she was crying call my room b/c I don't believe in CIO (crying it out). So the nurse wrote it down and we taped it to the top of the isolete. Next, it was time to nurse.

The laction consultant came in and we basically spent 30 minutes playing with my boobs trying to convience a 4 hour old baby to latch on. Finally with no success and a fidgeting newborn, she went and got a nipple shield. We put it on and Olivia was nursing. We had alot of struggles with nursing in the NICU. The first was that they don't like to feed preemies for longer than 30 minutes. They figure that if any longer than that then the baby is burning more than they are actually eating. With Olivia, that was NOT happening. It would take me 30 minutes to finally get her nursing...and then she would want to nurse for an hour. So I had to start pumping and syringe/bottle feeding.

Breastfeeding and the NICU was so hard. Olivia would get to wear she was wanting to eat during shift change -but they didn't want anyone in there. Thankfully they made an exception. There were alot of nurses and doctors that discouraged my nursing. I even had one nurse go so far as to tell me I was killing her. And then the amount of time they would let me stay with her was getting old. After 45 minutes I would start getting rushed. So what ended up happening is that I would go in and try and nurse. If it took longer than 10 minutes to get her latched then I would stop and just use the syringe/bottle. If I got her latched I would nurse her as long as I could within the 30 minutes, then I would feed her whatever I had pumped. I am proud to say that my daughter has never had anything but breastmilk. And we successfull y nursed until she was 2 and we weaned.

At this point my day consisted of pumping, nicu, feeding baby...come back to my room pump and eat something, and then back to the NICU. It was definitely exhausting. Then on the 4th night my husband told the doctor to give me a sleeping medication. So without my knowledge I was giving something IV and within 20 minutes I was asleep. It was def a good thing b/c I was getting run down.

Olivia stayed in the NICU for 10 days. She had never severe jaundice. Her numbers just would not go down. They had her on the bili-light and a bili-blanket. You were not allowed to hold her without it. As soon as we thought her numbers were going down they would shoot right back up even higher. 3 days into her stay she got moved down from the high risk unit to the step down nursery. 6 days into her stay we tried "rooming in"{this is where they have rooms and you keep the baby with you to see how well it does outside of NICU care}. Well we thought everything would be good. The next morning the next was a smidge lower, so we roomed in again the next night. To our surprise when we woke up the next morning her jaundice was ever higher than it was before. So they moved her back into the step-down nursery. She stayed there until we came home with her.

Another reason she was in still was b/c of her weight. She lost almost 1 lb, which is alot for a 4lbs preemie. The did NOT like be breastfeeding. But I refused to do anything but b/c I knew it was best for her. But I had some people say some very mean things about my nursing her.

On day 10 we were allowed to go home. He jaundice has dropped a few points and her weight was up an oz. They told us that we had to take her into the hospital on base the next day to get her levels checked and get a biliblanket if it had when up. They said if it went up more than 3 points we needed to come back to them. The next day her levels were up by 2, and we went home with a biliblanket for the next weeks. So in total she had jaundice for 3 weeks.

At home we got on a better schedule. It consisted mostly of nursing, pooping, eating, sleeping, and pumping. It was like a never ending cycle. She was still using the nipple shield AND taking bottles.

When I took her back for her weight check she hadn't gained to much. So I met with the lactation consultant. She was amazing. We talked about how to feed and pump. We talked about the how and when to wean of the nipple shield and we talked about how good breastmilk was for preemies.

1 month post-partum and we are both doing great. I went back to the doctor and my pft's were around 58%. My weight was fabulous. And we adjusted my meds b/c I was nursing. At Olivias appointment. She has finally reached around 5lbs. Her jaundice was gone. And she was healthy. We went home happy.

My health stayed really good for the whole first year after birth. I was admitted only 1 and Olivia was 6 months old. The next time I was admitted she was over 1. Olivia used to come to the hospital with me, and all the nurses were in love! She was..is...such a ham!

At 4 months old, Olivia had her next check up. At this check up she weighed 11lbs 1oz. I mentioned to the doctor that she had a little cough. He said it was no big deal b/c her lungs sound ok, and that was that.

At 6 months old, we got a shock. She was only 11lbs 9oz. She should have been around 13lbs. They were convinced that it was my milk supply. So I went on reglan to boost my supply and I fed and pumped around the clock.

At her next appointments (8 months, 10 months and 1 year,) she would still be tiny. At 8 months she was almost 13lbs, @ 10mths, she was 14 lbs, and at 1 year she was a little over 15lbs. They were very concerned about her weight. We were told to put her on carnation instant breakfast 2 times a day. I also would pump and let just the fat come to the top of the baggies in the fridge and I would add them to her milk. She was eating regular food at this age. Everything had butter, oil, etc on it to help with weight gain.

Another major event for Olivia around 6 months old was that she contracted a MRSA lung infection. O man it was a VERY long 2 weeks!! They treated her with clyndamicin and 2 breathing treatments a day. They also did 2 chest xrays. UGH I hated her having to do those...

I totally hate this contraption..but it was really funny too.

So yea I was soo bummed that she was sick. When my husband came home for R&R, I mentioned the weight issues, the cough, and the MRSA infection. We talked about it and decided that we need to purse some further genetic testing for cystic fibrosis.

The next day I called my CF doctor and spoke to her. A sweat test was scheduled for a few days later so that my husband could be home and come with me. I honestly didn't think I could handle finding out on my own.

Thats all for tonight!!! I'll post part 5 tomorrow and it should sum up everything else. If you have any questions, please ask! I hope I didn't leave anything out.

pregnancy && my daughter whom may or may not have CF PART 3!!!

2010-08-13T11:15:00.000-07:00

If you haven't read PART 1 or PART 2, you have to!

SO I am pregnant...OMG what do I do. I call a doctor ASAP, that is what I do! Ok ok let me back up 1 minute.

I JUST moved to our new base. I haven't seen a family practice doctor, much less a CF doctor. I haven't even CALLED yet. Like I said I have been here for 3 weeks when we found out.

So I call the base hospital.

ring ring... "Triage nurse ******* How can I help you?"

So I am pregnant, I have lots of fertility issues, and I have Cystic Fibrosis -what do I do?

She giggled a little and asked me if this was my first pregnancy. I told her no, then I had to explain. {I hate talking about my miscarriage. My chest just swells, my heart skips a beat, and I just hate it, but I know I have to.}. So I went into my 400 page medical history.

She moves a couple of people around and gets me in for my interview appointment (@ base they interview the mother & father about family, medical, life history basically). She then put in for me to see an actual OB (on base you go to family practice unless you have problems), but I was put in to see him within a week.

I am soo excited to be pregnant, but soo nervous. I was still cramping so bad and I was so worried I would miscarry. I layed in bed until my appointment date. No, seriously. I only got up to let the dog out, pee, shower, and cook dinner. I did NOTHING but eat or sleep.

The day of my appointment comes...eeekk! In my brain I am re-jumping with excitement. (I just love my daughter), o anyways back to the story....I am waiting to see the OB...immediately he comes in and say "Honey, your case is to complicated for me. I have put in a referral for a CF doctor. Here is their phone number. They are waiting to hear from you as soon as possible". I was honestly a little taken back because of his frankness and efficiency. Next he says, would you like to hear the heart beat? Hum I can do that this early?(I was around 6 weeks). So we looked, and bless his heart he really tried -but nothing. Of course he wasn't worried but I was worried. Then sent me home with a really cool pregnancy book and a TON of information. They informed me that they would still like to see me monthly just in case an emergency happened they would have an idea what to do.

Doctor count -1 -(yes you need to keep count)

I get home and what do I do first, call the doctor. (actually I'm sure I probably ate && napped first, but calling was high on my list). I had to wait for them to call me back but she assured me that they would.

I received a phone call the next day. They informed me that tricare rushed through the referral so they had already received it. The doctor said (at this time Dr.J was the only CF doctor at the clinic) that since I wasn't feeling great (yea I was run down) and since I was pregnant and a new patient, that it would be in my best interest to just schedule a 2 week visit to be admitted. She said this way they could run x-rays, ct's, blood work, see and OB, the whole 9.

I was nervous, excited, anxious...and still home on self-prescribed bed rest. NOTHING was going to take this baby from me.

I was admitted when I was about 8 weeks pregnant.

They ran a ton of tests. The standard new patient thing and then some. She was also thankful that I brought her in my medical records (cf,ob, ent, everything -in a 3 inch 3 ring binder).

Then I met my OB, and she is/was AMAZING! My doctor informed me that she was a high risk OB and they have worked closely together with several other CF patients and had a 100% success rate for pre, birth, and after care. I was very pleased to hear this. I was also pleased by the fact that they were excited for me. They encouraged the pregnancy and never said a negative word about it.

A few days into my stay she rolls in an ULTRASOUND MACHINE... I do not even know where to begin about my emotions. I was soo excited.scared.nervous.sad.thrilled.everything. I was also sad that my husband couldn't be there for the first ultrasound. BUT I was ready. i think.

I held my breath. She placed the ultrasound wand onto my stomach. I could feel my heart pulsing in my neck...then I burst into tears...

There it was, my beautiful little baby. Heart beating away so fast, looking so perfect and just snuggled safe and sound in my tummy. I was 8 weeks and 5 days -she was measuring at 9 weeks 3 days, and her heart beat was 189 beats a minute...pure-perfection. I am sure you would love to see a picture, so here she was. Her very first picture...

ISN'T IT PRECIOUS???

The doctor said that everything looked perfect.

We then got down to the facts. She told me that I could stay on my CF vitamin b/c it contained the same if not more vitamins then a prenatal. She told me that I HAD to drink 2 boosts a day in addition to my current food/supplement intake. We went over all my medications -at the time they were all ok'ed (for those that would let a list, please let me know and I can get it). We discussed the vest. She encouraged me to do it as long as I could. They got me a wrap kind to use so that it wasn't on my stomach. However she suggested to just use the acapella if I could, "just to be safe". She then informed me that I needed to see her every 2 weeks. HOWEVER we couldn't afford that. I let her know that the doctors on base wanted to still see me as well. SOOO She said I needed to see someone every 2 weeks. So it was set up that I would see her then 2 weeks later I would see the base, then 2 weeks later her and so on and so forth.

Doctor count -2+CF doctor.

My CF doctor wanted to see me once a month, preferably after I saw Dr.T (high risk OB). This made things easy b/c they are basically right next to each other. The main concern was weight. I had lost a few pounds prior to my admission. The stressed the importance of weight gain in CF and then weight gain in pregnancy. They ultimately wanted me to gain 40lbs.

10 weeks, 5 days - my 2nd ultrasound...

Again I was terrified.

Perfection. She looked so different from the one 2 weeks prior. She was moving around and just soo fun to watch. Dr.T let me just watch her for about 10 minutes. We sat and talked, laughed, she reassured me that everything was looking soo good. And she let me know that the 12 week mark was coming and it would be "safe" to return to usually activity.

I was discharge with a clean bill of health and a lung function of 62%.

At this time I also ordered a heart rate monitor so that I could keep track of the babies heart rate. It cost about $50 a month. I spent most of my days on self presribed bed rest, on the couch, listening to her move around and her little heart beat just go thump thump thump.

She had a fast heart rate my entire pregnancy. It was any where from 165-190 beats a minute.

My pregnancy was going really really well. I was gaining a steady amount of weight, my lung function was holding steady, and the baby was growing fabulous. I was getting an ultrasound every 2 weeks.

I felt her move for the very first time around 12 weeks. Daddy felt her for the first time at about 16 weeks. I love feeling her move. She was soo active all the time. She loved to be talked to. I would read her little books and play music for her as well. And she LOVES her daddy. If she was in an uncomfortable spot or just being a pain, he could touch my tummy and talk to her and she would relax and get comfy again. She loved to kick to the beat of the music (noticed it the first time around 28 weeks).

At 16 weeks I had my "pre-BIG ultrasound", we were told that it "looks" like a girl but they can't say officially until 20 weeks. But I knew. I was soo excited! At this visit they also did the testing for other genetic issues, its called a triple screen.

At about 17 weeks, I fell down the stairs. Not sure what happened by my legs gave out and I fell. I was terrified. We went to the ER, the dumb doctor there came in and started hitting my back -hum what??? But the heartrate was fine. And I wasn't having contractions so they sent me home.

At my 19 week ultrasound I was told "for sure" that she was a girl. She was growing great and everything looked good...except her feet. The lady spent about 30 minutes looking at her feet. Finally she left and said she would have the doctor come in. Dr.T came in and took a look at them. She them told me that both of her feet looked to be turned in. The left seemed to be worse than the right. She said they would monitor them, but that it was a pretty fixable condition. Nothing huge, but still NOT want you want to here about your unborn child.

I got admitted again around 22 weeks. I had been feeling a little low and my 02 stats weren't great (90-93%)so they thought it was really important to get me in, since low 02 stats can restrict growth. I got better quickly. I was admitted through the ER and NOT happy about it. I was told that I had to get a chest x-ray or he would not admit me (even though my CF doc said otherwise). I was pissed. I didn't want an xray. I had already had one since she was born and I didn't want to expose her to the radiation. At this point I had no choice. So after hours of screaming at doctors and being a bitch, I gave in. A few days before I was released I was told some terrible news.

My genetic screening came back that my daughter had a 1 in 80 chance of having trisomy 18. Trisomy 18 is not compatible with life. Those that have it, if lucky enough to be born alive, die within the first 24 hours after birth.

She told me not to google it...but I just couldn't help it. I spent the next weeks crying, worrying, researching, and praying. I was extremely upset about the fact that the doctors on base had these results for 4 weeks before they notified me of them. Had I wanted to not carry the baby (which I would never have done, but it was the principle) then I had missed my chance to do so. It was just the fact that they hide these results from me.

I was then referred to a perinatologist. (this is like a high risk doctor but they don't deliver they just monitor growth and development).

Doctor 3 - In the end I had 3 OB doctors...

Also during this hospital stay I was having some heart issues, so an ultrasound of my heart. Everything came back ok. Apparently heart issues are common during pregnancy. I left the hospital with a 56% lung function and a heavy heart.

Things were really uneventful until about 29 weeks. I had another ultrasound. Her feet didn't look any better and now her head was growing 2 weeks ahead of schedule ... I was trying soo hard not to worry about trisomy, birth, and my CF. He also said that I was having some shortening in my cervix (a sign of preterm labor). He called my other doctor and let her know that I needed to be on low activity and that we should start discussing early delivery.

During all of this me and my husband were getting ready for his first deployment. We had to write his command a letter letting them know that are daughter might not live through birth and asking them if he could stay here just in case some bad happens. Thankfully they let him.

At 32 weeks we were on our way to another Perinatology appointment. 1/2 way there I start noticing this odd cramping feeling in my stomach. It would come and go every few minutes. Finally I was like " Hum, honey...I think I'm having contractions". I started watching the minutes on my phone. They were coming every 5-7 minutes. We were still an hour away from the clinic and I was getting nervous.

When we get there I walked to the counter and told the lady that I had been having contractions for atleast an hour. She quickly got the doctor and I was taken in for my appointment right away. Olivia was still looking ok, feet still looked turned in, head still big, AND she was in position AND my cervix was almost all the way short.

He stopped and said "you need to go STRAIGHT to labor & delivery."

When we got into the car my CF & OB doctor called to make sure I was coming and to let me know I had a bed. When I got there they wheeled me upstairs and started hooking me to all kinds of contraptions. I started to get nervous. I was only 32 weeks and she was only measuring about 3lbs 5oz ...It just wasn't time for her to come out!!!

My contractions went from every 5-7 minutes to about every 3 minutes. They started giving me medication to stop the contractions. They also decided to give me steriod shots to help her lungs develop. I stayed there overnight.

It just so happened that I was already planning on staying b/c the CF doctor and me decided that I needed a tune up prior to the baby being born. So when I left L&D they wheeled me to the post-partum area. I was on monitors for the next 2 weeks. I basically had contractions non-stop. I also developed some kidney issue. (some long word I don't remember but it has to do with to much pressure on them) but it was sooo painful!

About 4 days before I turned 35 weeks my doctor came and sat down with me and said that we needed to deliver Olivia at 35 weeks. She said that it would reduce the chance of any damage to my lungs. It would also relieve my kidney issue b/c it was finally starting to affect my kidney function. We of course would do an amnio first to see how developed her lung were. Dr.T seemed to think that would be fine b/c I had my steriod shots, but I was nervous.

I was extremely nervous about the test. A huge needle getting shoved into my stomach was not my idea of fun. And what if her lungs weren't developed and it caused me to go into labor. And what if it hurt her? I would so anxious it made me sick and I almost passed out. Olivia pushed the needle out like 2 times and was making it difficult. BUT we got our sample.

The preliminary results came back negative for maturity. So we had to wait for the full result. It came back saturday afternoon. Her lungs were 2.5 and they just had to be over 2. Dr. T said we would start the induction at 12am Monday....the day I turned 35 weeks.

At 12am they wheeled me from my little room in post-partum all the way down to start my induction. We were on the way to baby town with a first class ticket...

I was pretty healthy most of my pregnancy. I was 100% compliant with my medications too. My lung function before pregnancy was 62%, it drop to 53% before giving birth. 2.5 years later they are back to 62%!!!

I am sure I left out some info but I believe the important things were mentioned. If I missed something and you want to know please feel free to ask!

Stay tuned for PART 4 -birth & the NICU.

Pregnancy & my daughter whom may or may not have CF part 2...

2010-08-09T14:50:00.000-07:00

If you haven't read PART 1 you should...

It's November, my husband is gone, and I am OBSESSED with "A Baby Story" on TLC. All of my friends are pregnant or having babies and I am soo anxious! I start looking into information about CF and babies. At the time there were a few otherCF ladies that were pregnant. It was soo hard to find experiences and facts about CF and pregnancy. CFers living into adulthood is soo new, much less having babies!

I finally decided that I wasn't going to think of my uterus as a CF uterus. I was going to approach fertility as a "normal" person until I found out other wise. I researched like crazy about trying to conceive. At the time I knew nothing about ovulation, tests, basal temps, cervical mucus, hum cervical WHAT? Yea I needed to learn.

I started my period at 16 years old. At this point in my life it's only been 3 years of periods. They were still very irregular. I was unsure whether this was b/c of my CF or because of my ovary. Come to find out it was both. I read alot about irregular cycles. I started reading EVERYTHING on the fertility friend website.

And then, I started charting...

From December to June of 07 I started charting everything. I recorded basal temps, cervical mucus, periods, and in april I started taking OPK's (ovulation predictor tests). Some of my cycle months were over 40days, sometimes it would be less than 2 weeks. As for ovulating, sometimes it would be 30 days in, some times 4 days in, sometimes even during my period.

I was soo frustrated. So I started reading cervical mucus. I paid really close attention to what it was like when I took my OPKs... So for 8 months I charted my little heart out. My husband was gone to basic and AIT. I was able to visit him a few times during AIT... we thought we got preggo.

I was soo excited. I had symptoms and I had 12 postive tests. (I started testing to soon I guess b/c the first few were very faint). I texted a pic of the test to my husband and we were thrilled. I would have been about 6 weeks. Then I got my period. I was soo confused! I didn't have the same kind of pain as I did with my first miscarriage, and I never went to the doctor. Honestly to this day I still just don't want to know the truth.

So I just figured it was a false positive and kept on charting. My husband came home around mid-may and we began getting ready for our move to our first duty station. We stayed with a friend of ours until we got base house and our things. I was soo stressed and so during the month of June I wasn't even thinking about getting preggo. I still charted and took OPK's but figured it wouldn't happen b/c of stress.

So one day I took an OPK and it was positive so I said, "BABY LETS DO IT" If anything we would have a good night, haha.

So a few weeks later, we are living in our house -still waiting on our things though. And I woke up one morning and puked. This is totally not normal for me (prior to my gtube) I never puked. I didn't even have a gag reflex! My husband joked "O you're pregnant", I just shrugged it off b/c I hadn't been feeling great. Well a few days later I puked again and that night I had severe cramps. So I thought I was starting my period which explain my just bleh feeling. My cramps were soo bad I thought my uterus was going to explode. Eventually that night they slowed down and I fell asleep.

The next day things were ok, still feeling yucky so I just lazed around all day. I was cramping but it was ok. So I basically had my plan of attack for when my period started. Ya know, you have the motrin in your system and the heating pad by your side, lol. Well I never started but boy O boy did the cramping come on. So finally I went to the ER.

I waited for 2 hours before they finally called me back to get my vitals and then they told me to tinkle in a cup. I then waited for 2 more hours. My cramps had slowed and I was tired of waiting, so I went home.

The next morning my husband came home from PT and said "baby, the ER called and said they had your test results", HUH? test results...what test...OMG they just did a pregnancy test, surely no, would they call for a negative result??? Needless to say I scrabbled for the phone and called them back.

" O, Hi Mrs.Brandon, we were just calling to let you know that you are pregnant. Please follow up with your primary care doctor. Have a nice day" {click}....

I dropped the phone, IN SHOCK. And then I commenced with the squealing and jumping and tears and what not. I then called my husband.

{Lord, knows I planned to do something really cute the day we found at, but at this point I was soo happy I just wanted him to know right away}

The first words out of his mouth, "I told you so"... men!

My next job, getting to a doctor and fast!!!

Well this was my story of conceiving. Tomorrow I will post Part 3 of the story. (I also hope to have an extra post about my ENT appointment, but that is IF we can make it to the appointment. We have a broken down car, no money (well a bank screw up that isn't fixed yet), and our only usable car has NO a/c and we have a 3 hours drive in 110 degree weather...hum no....soo yea BUT I am going to try).

pregnancy & and my daughter whom may or may not have CF... PART 1

2010-08-08T16:06:00.000-07:00

I'll start from the beginning...

I have wanted to be a mother since I was young, really young, like 2. I grew up like most CF women did, we were told we wouldn't be able to have kids. Of course this thought devastated me. Having kids has been my life long dream. In Oct 2005 I found out I was pregnant. I was excited. However At 10 weeks I found out that the baby had no heartbeat. At 12 weeks I miscarried. I was crushed. It was honestly the worst experience in my life. I had known the whole 10 weeks that something was just wrong. I was dizzy, in pain, couldn't eat, couldn't sleep, my stomach felt "odd", and it was the worst 10 weeks of my LIFE. I miscarried and that was that. {this is all I want to recount of this at this moment b/c its hard to talk about}

At this time I had also found out some other interesting facts about my female organs. My uterus is bicornuate. This means that there is a septum in the middle which makes the uterus heart shaped. {click here for a picture} Having a heart shaped uterus makes it hard to get pregnant and carry to term. If the egg implants in the septum it has a 97% chance of miscarrying. It also can cause growth restrictions on the baby. They said that while many women do get pregnant and have no issues, most women with this can NOT have a child. Needless to say I again felt defeated. Around the same time I also found out that I have an underdeveloped left ovary. My left ovary gets very little blood flow and is barely 1/2 the size an ovary should be. My chances of having a baby were slim to none. I was told this by 3 different doctors. Between my CF, my uterus, and now my ovary they just feared it to be impossible:I did not.

I went through alot of denial about it. I went to over FIVE different doctors and did over 15 ultrasounds b/c I refused to believe what they were telling me. During this time I was also on anti-depressants b/c of this and the miscarriage. It was a very dark time in my life. My only major dream in life was probably not going to come true.

Then I met my husband. He had 3 beautiful children. I was in love, with all of them. They mean so much to me and helped to fill a void that was taking over my life. Over time however I began to realize that I HAD to have a child of my own. I love my stepkids like my own, but I can't be in control over there lives, I can't be the mommy I wanted to be to them all the time. I just couldn't handle part time kids. I needed a full time child to be my own, well our own!

In October 2006 we were married. My husband left a few days later for basic training. I new that I needed to start thinking about my future. There is alot to think about when having a child. Most of you are probably thinking about the financial aspect, but for a CFer you have to think of what kind of quality of life your child with have, the affect on your health, and you have to think about your health AFTER pregnancy. My biggest fear was that I would die while my child was young. How fair is that? I know that no body can guarantee life, but you have to be real with yourself. If I waited until 30 to have kids I might never make it or I might die when she is five. The fact is that we all base our lives by the stupid median life expectancy.

I had to think about how my health would be during my pregnancy. Most doctors are very concerned with this. At my previous CF clinic they 100% discouraged pregnancy. Basically they told me it would kill me. At my current CF clinic she has dealt with 5 or 6 pregnant CFers and she works very closely with a specific OBGYN, so I was confident, but more on that later. There are some important issues to have squared away before trying to become pregnant:

Make sure that your weight is in a good place. Weight is important for our lung function. It is also important for a healthy pregnancy and baby. Low birth weight babies can have lots of problems. If you can't maintain while you are healthy, you can NOT maintain when pregnant. So start learning to eat healthy now, your CF and child will thank you later.
Make sure that you are 100% compliant with your medications. Your health reflects the development of your child. If you have low o2 stats, then your child is not getting all they need for growth and you increase the risk of things like cerebral palsy.
TAKE YOUR VITAMINS. If you are on a normal CF vitamins 2x's a day you do NOT need to switch to a prenatal. Our vitamins have more or the same as prenatals. However it is important to make sure that you are taking them b/c CFers do not absorb all their nutrients from food, so vitamins supplement that. {eating healthy and vitamins are important to everyone health. Healthy eating can improve anyones health, look for a series about that later}
GET YOUR SPOUSE TESTED FOR MUTATIONS! My husband was tested for the 98 most common mutations and was negative. If you can, try to get a full genetic panel from Ambry Genetics or Genzyme. This is very very very important.
Chart your cycles. This is critical for us. You need to learn about your own body parts and how you actually get pregnant. Charting is also necessary in case you have fertility issues. Fertility Friend is a good place to start. I used to be free, I think it still is. Check it out and it explains EVERYTHING!
Make sure all your meds are compatible with pregnancy. Most everything I took was safe while being pregnant and breastfeeding. However a few things weren't and those first 6 weeks are critical and you don't want something to get into the babies system that could harm it (even a little). So do without it if you can.
TALK TO YOUR DOCTOR. Learn about CF and pregnancy.
(this is for non-cfers, all women should get themselves tested during pregnancy to see if they are a carrier of the disease. it is mandatory in most states but not all)

Those 7 things are so important to your health and trying to conceive.

Thats all I have time for today, tomorrow I will post part 2, about my conceiving and pregnancy.

oOoO SOO happy!

2010-08-04T20:52:00.001-07:00

I'm HOME!

For those that are FB {facebook} friends, you already knew that. In fact you have probably been counting down the days with me! I think most of you wanted me out of Hell Hospital as bad as I wanted out! SOO Ill recount the last few hours of HELL for you...

Yesterday I had severe sinus pain. Most of ya'll know that they took me off my pain meds b/c, well frankly because they are just stupid -and I'm not being mean, they just really are! So I was miserable. My doc was like "O well, lets get you an extra dose of tordal" (tordal is a non-narcotic and really works wonderfully). Sadly it did NOT work for me yesterday. So I had it and ibuprofen...it also didn't work. At this point I am in tears and do you know what they gave me? TYLENOL!!!!! I wanted to smack them. So this was around 10pm. Coincidentally I was due for ibu and another dose of tordal. So I had all 3 of them and finally cried myself to sleep.

I think it goes without saying, but my doctor was LIVID this morning. They never called her. So she agrees with me and that I will probably NOT be going back to LSU...ever.

I have also officially been diagnosed with CFRD -cystic fibrosis related diabetes. My A1C is 6.5 and my fasting glucose was 198. The are both borderline results (7 and 200 mean diabetes). So my dr said that within 6 months to 1 year (if I was really lucky) I would need insulin. She thinks if we start acting like I have diabetes now, that maybe I can keep if off my back for a little longer. So I have to start learning to count cals, take my blood sugar, and cut my soda and sugary drinks down to 1 a day. (Last Septemberish I was dx'd with diabetes when on steriods). Apparently people with the G551D mutation are also more likely to get diabetes, which I found interesting. So yea, it sucks BUT I knew it was coming.

I saw my ENT today...and he made me feel soo awesome. For one he has heard SEVERAL (and when I say several I mean like EVERYONE) complain of Dr.D @ clinic. He said that I am not the first and certainly not the last!!! Aside from that he looked in my nose and said that I already have polyps. WHAT?!?!? I just had surgery in May! SOOO things are now getting set up for sinus surgery. Likely next friday or the friday after. I am excited. I am soo ready to be out of pain. Thankfully the loverly doctor wrote me another script for some meds, he also like tripled my nose sprays (to a level people shouldnt take, but we are desperate. You should not be getting polyps 3 months post surgery!).

Hum, what else???

O I am now on day 5 of periactin...and still can't eat. We went to taco bell today and I LOVE that place -and ate like 5 bites and within 20 minutes puked it right back up. Dr. J thinks I have gastroparesis. I have to call her Monday and let her know how its going. If its not better we are going to try marinol and some further testing.

I am soo glad to be home with my husband and kids. My daughter was SOO excited to see me. And the boys have been attached to my hip and asked 101 questions. I just love them soo much. I have been soaking up the hugs, kisses, and excitement...we all know that tomorrow it will wear off when I say "kids, pick up your toys" LMAO!

OOO also I found out monday.... I WAS APPROVED FOR SSI! (I can't remember if I posted it, and Im too lazy to click back and find out) but yea. I am soo excited and I should get my first check next week. I called Beth Sufian from the CF legal hotline. Go to www.cff.org and click on the CF legal link...she is awesome. Tell her Jessica Brandon sent you. I applied June 23, and I found out Monday. That is less than 6 weeks....amazing!

Hum, so as of right now life is perfect, its real, its exactly what I can hope for at the moment. I am pain free, home, sitting on my couch, talking to my best friend. I have sleeping babies, a snoring husband, and a furry pooch sitting next to me. I am thanking God for every second of being here today.

So yea... I love you all, but now its time to snuggle next to my man and convince myself I should go to sleep. I hope everyone is resting just as happily tonight. I want to send some prayers to a few CFers still in the joint and a few to those waiting on a call for some lungs tonight!

God Bless

Feeling better all ready!

2010-08-01T14:38:00.000-07:00

Today my whole body feels much more at ease. I don't know whether its due to the relief of never having to see DR.D again, or b/c Dr.J is back, or because this whole drama is just O.V.E.R! Its probably a little bit of both. I don't honestly think I am feeling better "health" wise yet. I have felt shaky and unsteady today, well in the 4.5 hours I've been awake since my lazy arss slept till NOON! I thought maybe my sugar was low and that was why I was shaky however my sugars have been in the steady 115 area since yesterday. It might be a side effect of the periactin, but I am not sure. I am getting it around 3/4 times a day, but its still not making me hungry. I honestly just feel very sleepy. BUT overall relieved to be feeling some what, better?!

I have been playing with my pictures the last 2 days -almost non-stop! I downloaded a free trial of photoshop lightroom 3, O what fun! I only think I would squeal, if I was the squeeling type and everyone wouldn't come running in thinking I was dieing! But its extremely awesome! {insert witty comment about how someone should buy it for me for MY birthday which is fast approaching on AHEM the 9th of August}...Right Right the program..is FABULOUS! I have really enjoyed editing my photos.

I love love love love -did I say LOVE. Photography. I love to take pictures of EVERYTHING. I love mostly taking pictures of my life so that I can scrapbook them. However I also enjoy taking pictures of scenery/landscape. God made such a beautiful earth! He also made me and VERY beautiful daughter and she is whom I have been "editing".

I will admit that its hard to edit perfection, but I love tweeking the pictures just so to add some more depth and make things interesting, or rather more interesting! This happens to be my fav:

I love my little panty wearing princess! She refuses to have clothes on the majority of the time, but we atleast make her put panties on if she is going outside. (We also make her wear regular clothes in public too, I'm not THAT crazy).

She is getting soo big and I wish the next 2 days would hurry up so that I can go home and see her and snuggle her b/c her kisses always make everything better!

I am smelling something hospitalish coming down the hall -food or something close to it- and I guess I should try and eat (grilled chicken and french fries).

*Jess*

An update about Hell Hospital

2010-08-01T10:37:00.000-07:00

Like I promised -here is an update.

Friday: I didn't not see 1 single doctor ALL day!!! I was completely appalled and really just at the breaking point of checking myself out AMA. (against medical advice). MY nurse and the floor pedi tried to tell me that if I checked out now that my insurance wouldn't pay for the visit. I didn't believe them, so I just placed a call to tricare (which was easier said than done b/c its voice automated so ANY noise makes it skip around, yea very annoying) but I called tricare and they said they will pay for ANY treatment until the moment I am discharged!!!

Of course I didn't check myself out. The reason comes in the form of an adult pulmo Dr. He was awesome. He really listen, cared, and wanted to help me. He told me that if DR.J will still see me that he will help out where needed! So I was happy about that.

Saturday comes, and with it enters Dr.J. I explained EVERYTHING to her. I voiced to her that hospital admin is the SAME thing as patient advocacy, and that I was never trying to get anyone in trouble. I explained the pain meds situation. We talked about the fact that Dr.D was making it looked like I was a junkie and she wouldn't give me my fix so I reported her. Which of course is not true.

I also found out that respitory has been telling her I am refusing my treatments or telling them to just set them down and Ill do them later (which none of this is true). So hopefully we have it straightened out now b/c I have been doing my treatments!

So anyways, I then told her that I was having all these issues, not eating in 16 days/feel like I need to pee but can't/not drinking much/and just still feeling yucky, and I also told her that I mentioned them to EVERY doctor and noone seemed to care.

So we are now checking blood sugars, she ran a chem panel, She is gonna start me on periactin and then if that doesn't work, marinol.
I am now getting 800mg of IBU every 8 hours, tordal @ bed time, 4 time a day blood checks, and she started fluids.

So hopefully monday brings some fab news and we can go from there.

On a side note, 1 weighed 120 today... for only like the 2 times in my life(the 1st when I was preggo)(no I'm not preggo) -but I don't understand how I am gaining when I'm not eating. I can't see tube feeds only allowing me to gain 8lbs in less than 2 weeks. I am thinking its just water weight...but yea.

So there is the update. I can still stay at clinic AND I don't have to see Dr.D. SO Im pretty happy about it!! Right now I am off to lay down and relax until my friend Niki gets here to come and visit me!

FINALLY, something good coming my way!

2010-07-30T12:38:00.000-07:00

I don't really feel like talking about the current hospital situation. There isn't much to update now so I will update tomorrow when I talk to the CF doctor.

SOOO I am going to update about my PFT's b/c right now its about the 1 thing that is making me happy about this situation.

I had a goal for 2010. That was to bring my PFT's up to 2.00 liters (fev1). At clinic on the 5th my pft's were 54%. When I entered the hospital last week they were down to 42%. Yesterday when I did my PFT's they were {drum roll please}

62%/ 2.07 liters

That is the highest my pft's have been all year. At the beginning of January they were 42% upon discharge from the hospital. I met, and even slightly, surpassed my goal for this year. For the rest of the year I would like to maintain, at least. My ultimate goal is 70%. OF course I would love for them to go higher, but its been YEARS since I have seen a 7, so I am not going to set myself up for disappointment. I have worked really really hard,(contrary to certain doctors opinions). No of course I'm not perfect, but I really am trying. 2010 was my year of recommitment to my health.

I don't think I have done anything too special to bring my lung function up. I have just been pretty consistent with my treatments. Also I have gotten my asthma under better control, which I think is critical. Inflammation is a HUGE problem in CFers.

So today I am trying to forget everything and be proud of myself for bringing my health to a new level.

so tired of crying every.single.day!

2010-07-28T09:46:00.000-07:00

I am so mentally and physically exhausted from this place. I honestly have been waking up everyday trying to be positive and make the best out of this horrible situation. Yet some how I always end up in tears.

I have had a migraine + sinus headache for 3 days now. I am taking percocets (2 in the AM 2 in the PM) for my facial sinus pain. My ENT prescribed these to me b/c my sinuses/nose were not healed. He said it was no biggie and we would reevaluate on the 4th. So this pain ON TOP OF a migraine, well frankly it sucks!

The percocets are barely helping the sinus pain, they weren't even close to touching the migraine pain. So I asked for something else...ended up with trammadol. FYI this drug makes me sick as a dog, but I took it and just went to sleep. Needless to say it didn't help. So when I tell them that I need something b/c my head STILL hurts, I end up with more trammadol.

Finally last night I broke down and begged. The brought me in Amestin, or Amesson or some kind of migraine medication. It was a shot in the arm (OMG IT HURT SOO BAD!) and it made me feel funny but it helped. Well to my misery I woke up this morning and could feel the migraine just looming. {Its been raining here for 3 days, that kind of rain that just hangs in the air and makes you miserable} So the DOC came in and I was real frank about it and wanted something. She tells me no.

More specifically she tells me that she isn't going to give me anything because "Jessica, I can't understand why you have chronic pain b/c CF is NOT a painful disease"...I about kicked her in the face. (sorry I know that sounds mean, but I'm fed up). She was going on about how I was getting all these pain meds. I stopped her and kindly let her know that ALL I have taken was the percocets my OTHER doc prescribed and the stupid trammadol they gave me. So she just rolls her eyes at me and said she'll get neurology in to see me.

I DON'T NEED NEUROLOGY!!!

I have a migraine, they run in my family, I get 1-3 a month. Its not crucial. I normally take some excedrine migraine, but the hospital doesn't offer that. If they last more than a day the local ER give me a shot of some pain med and sends me home. So anyways I am now waiting on neurology.

I have called the CLINIC and let them know that either I will get a different doctor OR I will be checking myself out of the hospital today.

I have also called hospital ADMIN and they are seeing what they can do about the matter. Either I will get a new doctor or I will check myself out today.

I am sick, tired, migrained, and over crying everyday bc of how miserable I am. I feel like I am being difficult and starting to be a whiner. I know I know, everyone tells me I'm not and I should be doing this. I just wanna sleep, rest, and get better. All of which is not happening.

I am ready to write about something else on my blog besides this stupid hospital stay. I have soo many topics looming, but I can't think b/c my head hurts. OOO ANYWAYS...

PRAYERS need to go out for several CFers that recieved some new lungs yesterday!!!

Also I need a new project...something fundraiser like. BUT I just don't know what to do or how to go about it. SOOO if anyone needs any help or something let me know.

Marinol (and an apology)

2010-07-27T10:11:00.000-07:00

I'll start with my apology first:

I am sorry. I am so sorry for being such a negative nilly lately (nilly, hehe that made me giggle), but I have been. My mood has been in the gutter for 2 weeks now and I'm bringing others down. Whether or not my mood is reasonable, I just wanna say sorry and I am going to try and brighten things up.

Marinol - have you ever been on it? I am thinking about asking for it. For those that don't know its the mary jane pill. NO I'm not asking for it so I can be high all the time or something. I am asking for several reasons. 1 is that I am on phenergan 90% of the time, and it doesn't work so well. Marinol helps with nausea. 2 is that I have no appetite. Partly due to stomach pain, and being sick, and just everything. Marinol encourages appetite. 3 is that I don't know whether its b/c I am getting older, or disease progression, or whatever I am in pain. Its something different everyday, and I hate being on pain meds...Marinol helps with pain.

Let me just say that I really hate pain meds. They don't work for me unless I take fairly high doses. They make me sick and out of it. And they are addicting and dangerous. I have had a very bad history of pain meds.

So hopefully if I present these reasons to the doctor that she will prescribe it. I would rather not illegal buy/smoke pot just b/c 1 its illegal, 2 its expensive, and 3 the smoking part + lungs, just doesn't seem like a great idea.

So I am interested in hearing others experiences with getting the medication and than using the medication.

DISCLAIMER -no hating about this OK?

p.s. I am in contact with Dr.J and should have some things solved soon. Ill add an update on this ASAP!

one LONG week

2010-07-26T02:23:00.000-07:00

Yes, that's what is has been, one LOOONG week. I am sorry I haven't updated much, just being lazy honestly. I have spent 18 out of 24 hours of my days sleeping. I am not sure if its because I don't feel good, or if its just because I am bored, probably both. I could spend hours online, and I should be catching up on blogs, but I don't feel like it. I truthfully don't feel like writing this blog right now...but I have 20 more minutes before I can get some anit-nausea and anti-itch meds...so here I sit.awake.typing.exhausted.itching.with killer heartburn.

I have spent the last hour reading some beautiful blogs. THIS ONE . It just truly touched my heart. I think it applies to more than just a mom with a down syndrome child. As I read it I kept thinking of my sister-in-law (my nephew has downs), I thought of my mom, all my CF mommas out there, I thought of my friends with children that have autism, and those mommies with undiagnosed children that are still searching for their answers. It just touched my heart. I love reading stories like this one. I love the in your face honesty! I also love unicorns and rainbows, but reading a story as real as this does more. You feel it, just like you were there. Its beautiful, yet painful, kinda like life. Regardless, read the story, You'll cry.

Aside from all that I am still feeling sick. You might be thinking "well DUH you are in the hospital", but normally 1 week in, I am feeling some better and I honestly just feel like I have gotten worse. I had a GI scope on friday. I was under twilight sedation (you are just kind of asleep) and it sucked. They proceeded to have me swallow the scope while I was still awake!!! Needless to say I got angry and they gave me more medication, and some more medication. It took 3 times the normal amount to knock me out. According to the doctors from now on they will just put me under.

WHY O WHY don't people believe me when I say that its hard as hell to put me to sleep???

I don't really know the results of the scope. The GI team showed up around 5am to talk to me about it...yes 5AM! I think it goes without saying (but Ill say it anyways) I remember nothing of the conversation. Ok well I do remember something about inflammed, ppis, and malox -none of which I have recieved so maybe I really don't remember anything about it.

I still have not heard anything about my cultures, hopefully I'll remember to bug someone about them in the morning.

I have been having chest pains again. They claimed that blood work, ekg, and xray looked ok. It could be anxiety or muscle pain -hum? Either way they are looking at me like I am crazy!

My favorite Dr. comes back tomorrow, hopefully to do rounds, but I plan on calling her and begging her to come see me. I also plan on wasting my breath to beg for a transfer...again that will just be a waste of breath but whats the harm in asking, right?

I feel like I have left some stuff out...o well. Its med time and I am going back to sleep. Hope everyone has a good night, and my CFers are feeling alright.

24 hours down- 334 to go.

2010-07-21T16:59:00.000-07:00

My first day in club med is coming to an end. Its been typical I suppose. We have gotten through the usuals - accessing my port, blood draws, chest x-rays, pfts, and such.

They are putting in GI consult for the fact that I told them I have a yeast infection in my stomach. She said she isn't starting me on dyflucan until they say ok bc if they want to do a scope it might interfer -so chances are they will be doing a scope in a day or 2 THEN I'll start my dyflucan.

It too them 3 pokes to get my port accessed. But its in a feeling ok. The sad thing is that I am having to wear tape that I am allergic to. So they are finding me something RIGHT NOW to get it changed b/c I just can't handle it.

The took a ton of blood -it came back not s great. My inflammation count was sky high (no surprise there really) and liver was a little elevated. Other than that I guess the rest looked ok. We are currently doing peeks and troughs for medication levels.

My chest xray - sucky as usual.

Pfts - 42% - Down about 20% of baseline, down 12% from clinic on the 4th.

We started my antibiotics - Fortaz, Nafcilin, and Amicasin. The first two are apparently derivatives of augmentin -a medication I am extremely allergic to.

As for eating. The company I get my feeding tube supplies from sent me the wrong connectors for my g-tube. So I wasn't able to do one last night. Well I must have grabbed 2, as I found another one in my bag today that happened to be the right one. SOOO instead of just letting me do a can or 2 during the day so my blood sugar can stay up, they say my only option is to eat.... So I ate and within 15 minutes I was doubled over in excruciating pain. So they try and tell me its gas. HOW MANY TIMES DO I HAVE TO TELL THEM ITS BC I HAVE A YEAST INFECITON IN MY STOMACH AND I NEED DYFLUCAN??? So they bring me in ORAL pain meds to stop it and that means I had to wait a whole hour for them to kick in. Now they have made me NPO -really?I can have liquids just fine without it bothering me JUST NOT FOOD. Why will noone listen to me???

An top of all this I am itching like crazy. I am allowed to have benedryl. Well they gave me IV which works great...however I'm back to itching and I am about 1.5 hours short of the 6 hour mark. SOO instead of giving me another dose, they are gonna have me ONE pill of benedryl. REALLY? So that it take an hour to kick in, when 1 pill doesn't work for me in the first place??? Like what is the point? How are you gonna give me an antibiotic I might be allergic too and then not let me have the meds that stop the reaction????(FYI they only wrote the benedryl as a 1 time dose)

Heads are really about to freaking roll! I am gonna be on the phone with every body and their brother tomorrow!!!!

I am soo upset, irritated, and just pissed off! I am an adult! I know how I feel. Don't try and tell me its gas pains, or that I don't itch, or something else. I am not a child who can't convey how they feel. I am a very well educated adult that has NO issues dictating to a doctor exactly what is wrong with me and how to fix it.

SO JUST FREAKING LISTEN TO ME AND FIX IT DAMN IT!

STUPID STUPID STUPID!

2010-07-20T09:07:00.000-07:00

For the last 4 years I have been admitted to the SAME hospital. I love it there. The beds are nice, the food is great, the people are like family, its my 2nd home. Well then another doctor was added to the mix and has made this huge stink about us being addmitted to said favorite hospital, and likes us being admitted to the university hospital instead.

"They" claim that you get better care at the uni hospital b/c "you get hand cpt, and have doctors on staff 24/7". Well I hate hand CPT! Last time I was at the uni hospital they would come in around 5 am to do hand CPT. At that point had had just barely gotten to sleep b/c they had come and work me up at 3am for blood sugars! {sorry I am honestly crying my eyes out over this}. 2nd, I don't need a doc on call, when I ask them something they just say to ask the doctor in the morning. Not to mention at the uni hospital doesn't offer physical therapy, has the worst beds EVER, and the food is god awful and minescul. I don't even get snacks!

At my fav hospital. I have wonderful beds, fabulous food, my vest, and physical therapy. So please tell my how the other hospital has "better care" for ME. I don't care how great it is for everyone else! I care about ME! And there is nothing I can do about it b/c my fav doctor is on vacation...so I have to deal with the doctor I hate and she never listens to me or cares what I have to say.

I really wanted to turn down the bed, I just hate the idea of going there.... I am just soo upset. And maybe this sounds stupid to some people but I am going to be miserable! Absolutaly miserable! I just wanna go to my hospital, in my usual bed, and be happy (as can be) for the next 2 (or possible god forbid more)... im just really really upset.

Are other CFers like this?

Wish the climb wasn't soo steep!

2010-07-19T16:41:00.000-07:00

I feel like crapola! All I really want to do is sleep. I haven't really eaten anything in 2 days -not even a tube feed. Every time I do I just feel VERY sick to my stomach. I am taking phenergan, but its just not cutting it. I am drinking plenty of fluids so I'm not dehydrated.

My stomach cramps are less today. I only have one more day of dyflucan, so Ill likely be calling for some more. I know its the reason I feel bad. Last time it landed me in the ICU. So its nothing to play around with.

Lung wise they are fading fast, that is definitely the case. Every day I feel more mucus, its stickier, and a darker color than the one before. I am trying my best to make myself get out of bed and do my meds b/c it does make me feel better -its just that trip down the stairs about puts me out!

My poor kiddos. They have been baby-gated upstairs all day (well for the last few days). I hate it but I just don't know what else to do. Hubby has to work so there is nothing I can do about it. My house is a wreck & I made my kids waffles and strawberries for dinner. I had a friend offer to come clean my house for me, I declined. As much as I want a clean house, I feel like a shitbag for having to have someone else do it. Why can't I.

Whatever, I am not going down the negative road again. I am trying to stay postive and just pray my husband comes on soon, really really soon. As soon as WLC is over it will be hospital time.

Any ways, any prayers to feel better would be greatly appreciated!

Are we really normal?

2010-07-17T08:23:00.000-07:00

Are we really normal? By we I obviously mean CFers. I was watching different CF videos and I noticed alot of them claimed things like "I am normal BUT" or "I can live a normal life in spite of". I think claims like these hurt our chance for a cure. IF we are constantly claiming to people we are normal then their first natural thought it "I should give my money to someone who is NOT or CAN'T be normal".

I think that we as CFers have a duty to show the world the ugly side, the bad days, the medication, the short life span, the coughing, the skinny bodies, the new lungs, the TRUE world of CF.

When people watch videos they don't wanna see happy smiling faces and people living normal lives. They are watching to find out the TRUTH!

I challenge EVERY cfer to make a video of the TRUTH. I want to show the world what we are really living with. I want them to see that we might look ok, but we are far from it. And that we do need their help because without it we CAN'T live normal, happy, long lives.

Of course I know for our own moral we like to think we are normal. And we want to show people what we can overcome. But they can't now what we have overcome until they see how low we were before.

If you are interested in doing a video of the truth, I would LOVE to see it so send me your link. I will start working on my video as well -and lets work together to show people that CF really does SUCK!

After all that is what my blog is all about -the up and downs of CF.

2 days in bed.

2010-07-16T09:14:00.000-07:00

Today is my second day upstairs in bed not feeling well. I have baby-gated all the kids upstairs and we are just hanging out. I am not sure whether its the change in pain meds making me feel like crap or if its just that I feel like crap! I can tell I have a sinus infection and my cough seems "chunky". My throat and my ear are also aching. I also haven't had ANY appetite and have myself now doing 4 cans of nutren at night. (2000 cals).

I am trying to do everything I can to hold out on the hospital. Hubby is at WLC right now (warrior leadership course). So there is noone but me to care for the kids. I need to up my treatments but I can't carry it all upstairs so I haven't done extra. I am also on a higher dose of cipro & bactrium. I honestly don't think its working.

I haven't even been online that much b/c I am getting rest. Thankfully Caleb (my 9 year old stepson) is a great helper. He is keeping the kids plenty entertained and everything has been going great. Olivia came and snuggled with me for a little while, and I think she is coming down with something too. She has a cough, runny nose, and gunky eyes. And she is already on 5mg of zyrtec AND singular so who knows what is up with that.

We are still working on getting her the genetic test from Ambry. They mailed the test kit to me and I recieved it yesterday. The only issue now is that noone seems to know how to get the referal for it. Tricare told me that the base doctors had to do it. The base tells me that my CF doctor has to do it b/c they have an "evaluate & treat" referal. However since they haven't recieved her referral (which has been faxed over 3 times) they won't make an appointment for her OR put in the Ambry referral, and when they CAN get her an appointment is mid-december. REALLY? Why o WHY does this have to be soo freaking difficult, so obviously more phone calls will be placed today.

I'll be adding a flash me friday later.

ready for a breakdown

2010-07-13T20:10:00.000-07:00

I am upstairs laying in bed with my daughter stressing about the last few days events.

All this stuff with my husbands family SUCKS. And its not because I care if they speak to me, but I feel like he is upset, though he says he isn't. I hate that his family did this to him!!!

Then I have been playing phone tag with me and not giving the doctors the correct messages. So needless to say I have pain meds - but a kind that don't work unless I take TONS of them. And then I told them I needed phenergan because zofran doesn't work and what do they call in ZOFRAN! I asked them if I just needed to make an appointment and they were all "o no, its no big deal", well it looks like I need an appointment. GRRR!

Of course that coudn't have come at a worse time because my husband leaves for WLC tomorrow. He will be gone for 2 weeks. While he will be coming home each night, but it will be right before bed time since he will have to return to work at 4am. So of course I am stressed about leaving. I haven't been feeling 100% and my step-sons are here. They are a big help, but 3 kids are always hard to deal with. I hope my friends are willing to help me if I need it!

I also don't know what to do b/c a friend of mine lost my photoshop disc that I let her borrow and I don't have $400 to replace it. My comp has been messing up and has some broken parts so dell needs me to send it to them to update and replace the parts...I am afraid they will reformat my hard drive (if they need too) and I will loose it. That not only means I can't edit my personal photos, BUT I won't have an editing program to use with my business! So in the end its taking more money from me. I literally use photoshop every.single.day. I just hope she can find it, or replace it and it doesn't come between our friendship! {I want input - The CD was a burnt CD that was a gift from a friend - how do you guys think it should be replaced? Would you replace it? Would you feel it needed to be or b/c it was burn it my loss? FYI any replacement is ok just as long as its replaced}

I am also stressing about my step-kids leaving in 3 weeks. I won't get to see them for like the next year b/c hubby is deploying and leaves before our next scheduled visitation. UGH I hate it. I love them soo much and their mom is such a bitch that I know she isn't gonna let me see them...anyways!

So all this stress is lowering my immune system, I can feel it. I am getting a chunky, productive cough. I am very sleepy alot of the time, and I sense a sinus infection even though I am on cipro && bactrium. So probably after they leave I am going to have to go in for a tune up and probably another sinus surgery...

*my head is exploding Jess*

Sorry for being MIA

2010-07-12T17:46:00.000-07:00

Sorry guys that I haven't posted since friday. Things have been nuts. Lots of family drama. For those on my facebook you have probably noticed. I don't wanna talk about it here, but I haven't wanted to be on the comp.

So in other news. I am feeling ok. I think I have thrush so I am on day 2 of my diflucan. I am still having alot of face pain, and I need some more pain medication. Preferably a different kind b/c what I am getting just doesn't quite cut it, plus its been making me sick. Come to find out it has codiene in it...which makes me ill. So that explains why I have been having to take so much phenergan and have been so sick to my stomach. I don't think I have eaten much in the last week. Although I've been consistant on tube feeds b/c of it.

However I called the doctor 2 times today and I didn't recieve a call back GRRRR. So tomorrow I will be on the phone first thing, or Ill be going up there if they don't call asap. I mean had I know it would take this long I would have just made an appointment for this morning.

Other than that I am doing ok. Just getting everything together b/c Thomas is going to WLC for the next 2 weeks and will be MIA for the most part. I'm def going to miss him.

Well I have a pot roast calling my name. I'm gonna read everyones blogs tonight!

*Jess*

FLASH ME FRIDAY

2010-07-09T09:03:00.000-07:00

Flash Me Friday by Jen (<--- click)

Flash me friday was started by Jen. The game is that she picks a room of your house and you have to take a picture, easy right? The catch is that there is NO CLEANING allowed! We all wanna see how other people live. Are they cleaner, messier, can they decorate...do they make their bed every morning??? Well this is a way of getting a look at how others live! Today's Flash Me Friday is your out door space!

We don't have a huge yard, but this is just perfect for Olivia. I also LOVE little tykes (if you couldn't tell). We are hoping to get a cheap plastic baby pool next pay day. I love our little yard!

These are the back yard inhabitants - Jack & Jill.

And these are the other backyard inhabitants (well for the moment).

I look forward to seeing everyone elses yards!

*Jess*

ENT, Ambry, Insurance, and cardiologist...

2010-07-07T16:05:00.000-07:00

I saw ENT today -got chewed out b/c I waited until 10 wks post opt to show up (sorry it was the soonest we had the money for me to come). He said my sinuses are extremely swollen and looked terrible. He cleaned them out -OUCH. Then said come back in 2-4weeks and if they don't look better I need another CT and possible surgery. He gave me percocet & 800mg ibu to help with the pain and swelling. My face hurts SOO bad, I just want to fall over dead. In fact I am in so much pain I haven't eaten all day and I want to puke -yea its bad.

Ugh then there was a whole thing with the insurance when I got there. Apparently the office had no referral. SOO I had to call tricare. When I did they informed me that there was never a referral put in for the doctor AND that the sinus surgery I had on April 27th was DENIED -excuse me? Why was I never notified about this. Even the office had no idea! I arrived at the clinic @ 1 - and wasn't able to be seen until 2:30 b/c we had to get the insurance stuff straight. I have never had a problem before so who knows what happened. Thankfully they are going to retro-activate the referral back to april so that the surgery is covered.

I also took Olivia to the doctor for her toe(its been infected and swollen), dr said its healing so he wasn't going to do anything. We also talked about her Ambry test. He put in the referral and said I needed to call Amrby. SOOO I did. They are sending me the test kid and forms. So next monday she will be able to get her blood drawn and then the 5 weeks wait is on.

(Ambry is a company that runs a CF amplified test. Its a full genetic screening of the CFTR protien and looks for more than the 98 most common mutations since there are around 1500)

While there (since she saw the same dr I normally see), I had him put in the referral for the cardiologist or whatever. He said that on base they do a 14 DAY heart monitoring since 24 hours rarely shows anything consistant. So hopefully Ill be getting ready for that.

I think that about all the update my eyes can take. I am going to go eat a cheeseburger and then head into painmed world and go to bed.

CF clinic update!

2010-07-06T15:03:00.001-07:00

Today was clinic. I was absolutely terrified. If you've read my other posts you know that my machine broke on friday and I was unable to get a new one. In turn I had to go fri,sat,sun,mon, and today without any treatments. (I could do only vest & cayston). I just KNEW my PFT's were gonna take a big it....

and they did.

In fact I almost for admitted.

Then albuteral came along to save the day!!!!

My first set of pft's was 48%. That is a 10% drop from May. My doctor is very understanding and she knew the story, so she decided I should do a treatment and go from there. 15 minutes later I was blowing my little heart out. And to some avail my PFT's went up to 54%. She was satisfied with that, and said she wouldn't admit me now. She instead wrote me two more weeks of cipro and bactrium, just a higher dose. And also diflucan b/c I'll probably end up with a yeast infection in my tummy. (I get those pretty easily now that I have my g-tube).

We talked about my enzymes. Right now they are content with 4 w/ meals and 1-3 w/ snacks. She said that its the MINIMUM I can take and that if I have ANY issues I need to add one more enzyme. She said she would call in 1 month to get an update. I also weighed 112 today, which I think it up 2 lbs from clinic, but the same from the hospital. So they are REALLY pushing I do 3 cans at night instead of 2. 120lbs is the goal -I find it impossible, but I'm willing to try.

Next (and Kayla READ THIS). I talked to the doctor about heart issues. As I was going through my medical records for my SSI stuff, I noticed a few notations. Well honestly more than a few - more like over 50 different notations by several different doctors. They noted heart murmurs AND irregular rhythms. I mentioned it to my doctor, she said she the only time she had noticed was when I was preggo -hence the ECHO I had. I also told her about the EKG's that I have had done in the ER (b/c the ER gives them everytime I come in for CF chest pain), and they all come back borderline. I have also had a few occasions of high heart rate -180+. I also experience a "jump start" type feeling when I do my vest, other times as well, but its most noticiable with my vest on. She told me that I need to get it checked out ASAP. She said heart problems are NOT common with CF. She told me that I need to get a referral to wear a 24 hour heart monitor and see how that goes....so I guess its the next step.

I also got my new machine today!!! A PARI Vios! Its pretty blue. I haven't used it yet, but I'm anxious. Hubby laughed at me and said I'm like a kid with a new toy, haha!

All in all I think it was a pretty good visit. I was told to come back in October and that was that. Tomorrow I see my ENT doctor so he can hopefully fix my sinus pain -FYI I had sinus surgery in May. My last CT looked JUST as bad, and my doc today said my left side is totally blocked. So we will see how that goes.

*Jess*

My PFT history

2010-07-04T18:14:00.000-07:00

So Ronnie showed me his PFT history list. I found it interesting and decided to make a list of mine. I was actually REALLY shocked. It seems that consistantly throughout my life they seem to be more along the 65% mark. I have a few that are above, but its very few. Also most of my PFT's are results of right before admission and upon discharge. I very rarely made it to a followup appointment UNLESS it was a month later. These last few are quiet low, but they revolve around a very sick point in my life b/c of some mysterious virus that I caught AND my whole g-tube incident (ill post about that at a later time).

5/5/10 - 58% - at discharge
4/29/10 - 56%- 1 week in
4/22/10 - 46% -2 days in
4/20/10 - 42% -preadmission
1/4/10 - 41% - discharge from ICU
12/28/09 - 37% - end of first week in ICU
{entered ICU december 16th -lung function in the 20's)
11/30/09 - 62% - discharge
11/19/09 - 46% - 1 week in
11/13/09 - 32% -admit
(cultured MAC in Jan of 2009)

8/07-11/09 - I'll update this when I know.(Ill also try and add admission dates)

8/8/07 - 62%
8/2/07 - 60%
7/25/07- 41%
5/2/07 - 56%
2/21/07 - 59%
1/10/07 - 56%
12/6/06 - 60
11/1/06 - 53
9/14/06- 56
8/23/06 - 49
7/13/06 - 56
6/07/06 - 53
5/10/06 - 56
2/1/06 - 61
10/26/05 - 66%
5/19/05 - 79%
5/3/05 - 68%
3/10/05 - 65%
1/27/05 - 60%
12/6/04 - 65%
11/18/04 - 65%
10/8/04 - 74%
9/10/04 - 84%
8/19/04 - 68%
6/10/04 - 77%
5/13/04 - 75%
4/4/04 - 72%
3/8/04 - 88%
2/20/04 - 71%
1/23/04 - 92%
1/7/04 - 67%
10/24/03 - 77%
9/18/03 -70%
9/4/03 - 65%
3/20/03 - 60%
2/13/03 - 55%
9/18/02 - 73%
8/15/02 - 51%
6/27/02 - 42%
6/13/02 - 49%
5/28/02 - 51%
11/29/01 - 62%
9/25/01 - 60%
9/10/01 - 61%
3/15/01 - 72%
12/14/00 - 56%
11/20/00 - 56%
3/21/2000- 72%
3/16/00 - 68%
2/23/00 - 74%
1/28/00 - 65%
12/30/99 - 68%
3/20/98 - 93% - FIRST PFT. 10 years old
8-9-1987 -birth

Its pretty crazy that I have never really had "good" PFT's. Ill be honest and say that I have never really been complaint either.

The worst day in a LONG time!

2010-07-02T22:29:00.000-07:00

This morning I started doing my meds like normal. No biggie the albuteral took about 6 minutes...then onto the hypertonic saline. This is where my issues began.

25 mintues into doing my saline (at this point I was done with my vest) and I notice my neb is STILL full. I posted about it on facebook and someone suggested my filter (FYI my treatments were fine yesterday). To my suprise my lovely children spilt koolaide on my compressor. I just couldn't believe it.

So I tried not to panic. We attempted to get the filter out -no luck. Apparently with the old proneb ultra you need a special tool. I finished up my cayston (no headache results today YAY). Then I got on the phone to try and find a new filter to see if that would help. Unfortunately no place in my area carry the filter for the proneb ultra -since its a little old. So I then placed a call to my doctor for a new machine.

Little did I know that finding ANY kind of pari machine in the area would be an all day event. I honestly called EVERY.SINGLE.PLACE. and they did not carry PARI machines. I called walgreens 2 times for them to tell me they didn't have them either. I called every place within a 45 miles radius. I called the company I get my g-button supplies from and they came up with nothing. I even called several out of state and mail order pharmacies -NOTHING! Seriously? Its THIS hard to get a compressor.

I called my doctor back (well the CF nurse but same difference) and asked her if I could get another compressor. My doctor will NOT approve me for another compressor. The CFF recommends and approves the PARI, that's what the meds are tested in -basically I can buy whatever I want, but she will only write me a script for the PARI.

ARGH! At this point I am in tears. I have been on the phone for hours, haven't eaten, been up since 7, wanted to nap, and just fed up! I just knew I wasn't going to find something before the weekend.

and then HOPE! My mom suggested I call walgreens and see if they could order one from another store. When I called back they said "O, really? We have a proneb ultra 2 in stock, you can get it today." WHAT???? Really, I called you guys 2 times. But whatever I'll take it. My doctor faxes in the paperwork, and I get showered and ready to go get it.

THEN BAM! I call to see if its ready and it turns out they are not approved through my insurance to sell medical equipment. SO they can sell it to me, but can't process it through the insurance. SERIOULY? So now I called tri-care. Yea no luck. But the lady gave me a list of more numbers to call.........

and again no luck. I did end up with 1 company that was on both tri-cares list AND pari's list of providers. However by the time I got to their office they were closed until TUESDAY! They are my last hope. My CF clinic had no suggestions, my mom had none, I don't even have a friend with a sick kid that I could borrow one from.

So from now until tuesday (hopefully) I can't do any nebs (I can do my vest and cayston). The worst part of it all is that -I HAVE CLINIC ON TUESDAY! I just wanna cry. I have been working soo hard to stay healthy while the kids are here and get my lung function up past 58%. And now its going to be blown all the hell b/c of this. I just want to cry.

So tonight I just wanted to sit down and write this blog. And I wanted to participate in FLASH ME FRIDAY. And I just wanted to catch up on everyone and relax. I took my cam in to take some pics of my kitchen. Come to my computer to sit down and BAM....

My SD card won't work b/c its not formatted. My comp wouldn't do it and then my cam wouldn't do it. Finally got it fixed, ONLY to then to find out my computer won't read the card. SOOO I have spent the last 4.5 hours trying to fix my computer. So far no such luck. I am installing and playing with drivers. I have restored, and unrestored. I have cleaned and whatever. (good thing I know a little about computers). UGH and its still not fixed. When my hubby is done with watever he is doing I will try and use his comp to upload my FMF pictures...

So yea today has just sucked...totally totally sucked! I just wanna go lay in bed and cry and eat bon-bons (ok not really I don't even know what a bon-bon is, I'm just upset!)

Hopefully tomorrow is better.

*Jess*

FLASH ME FRIDAY

2010-07-02T20:30:00.000-07:00

FLASH ME FRIDAY was started by JEN

Basically she started a blog circus. She picks a different room every week. NO CLEANING is allowed prior to taking a picture. It allows us a way to peek into everyones life without being nosey...well I guess its still nosey but its fun! So if you wanna join head on over to her blog and find out more!
Todays FMF is KITCHEN:

This is our little kitchen on base. Its little, BUT I like it because its little. I do wish there was more counter space between the fridge and oven though.
There are always dishes -in progress at my house during the summer. See my baby bottle cleaner and meds -takes up way to much space for me.

More meds - a bday gift, and groceries that having made it upstairs up.
My table -can't wait to get my new one that actually fits all of us. Right now only the kids sit at it. The bags are full of the food we are taking on the 2-day shreveport doctors appointment extreavaganza.

Sooo THATS my kitchen.

Cayston - Day 1

2010-07-01T20:16:00.000-07:00

I started Cayston today...but first...

I want to say that I am so grateful that this antibiotic is available. I am allergic to inhaled TOBI. (I handle IV tobra just fine). Inhaled causes my throat to swell up. We tried it on 2 occasions and both failed. I have had to resort to colistin/colymycin which I HATE. The syringes, they taste bad, they make your face sticky, and over all make me feel worse.

sooo onto today...

I recieved all my cayston stuff about 2 weeks ago, but my with my OCD it just wouldn't be "right" if I started on any date but the "1st". So today I did my first dose and 2nd dose. I did miss my 3rd dose but my doc said that I had to space them every 5 hours and I just got started to late in the afternoon.

The machine is amazing. Seriously it felt like it was off even before I got it on. I couldn't believe that it was done so fast. And quiet, boy was it ever. I didn't know what to think. I started checking it to make sure it wasn't broke, 'til I realized that smoke was coming out of it. And then I felt like I took 4 good deep breathes and I got my thumbs up (thats what the machine does when its finished). I want to do ALL of my meds in this machine!!!!

As for the cayston itsself. It didn't taste too funny which was nice. It wasn't sticky and didn't take 5 hours to do. HOWEVER from the time of the first breath I got this VERY intense headache. It was extremely intense the entire 2 minutes. After that it gradually went away within 30 minutes. Very weird and it happened both times. Maybe tomorrow it will be better. Either way I really want cayston to work out for me.

What is everyone elses experience with cayston? Did you have headaches?

*Jess*

I'm bad & SSI update

2010-06-30T20:04:00.000-07:00

So today I have not gotten ANY of my meds done. BAD, yes I know! My hubby was home from work today and threw my whole schedule off kilter. However I got some good coughing in though in all the rough housing we have done. I can definitely tell though that I haven't done any treatments. I am much more short of breath and have that cough stifling feelings. I will atleast do my albuteral w/ the acapella attached before I lay down.

As far as my supplements go, honestly I haven't really noticed a difference. I don't feeler sicker than normal, more or less short of breath, nothing. The only thing I DID notice was the difference in NOT having a probiotic. My tummy does seem much more agitated.

I talked to my doctor about my Zenpep -they want me to take 5...hum WHAT? Did they not listen to me when I told them 3 made things "stop moving"????? I want to go down and they want me to take 5!!!! I really think we need to do something looking at my pancrease. Its weird. I have NEVER been good about my enzymes. I've always played with them, based them on what I thought I needed vs the calculations. So sometimes its 1, 5, or none. And things go ok. I still maintain weight, even gain. Also during my pregnancy I didn't need enzymes AT ALL, and still put on 35lbs perfectly. The doctors say you can't just go back and forth -I believe them - but my body is trying to work or something.
As for my SSI/SSDI. My Lawyer is GREAT! They have been very on top of things. They got my med records monday. They already have them charts and highlighted and everything ready to go. They got the signed doctors note back and everything will be sent in and should be received next tuesday. A lady from SSI has already called and talked to my mom, sent her paperwork, and I MIGHT be getting approved for instant SSI. Its based on prequalifications. If they think you meet the qualifications RIGHT AWAY they will pay you until a final decision. If you end up getting denied they just stop it and you don't have to back pay. So hopefully that works out. As most CFers know its pretty hard to work/keep a job. However its even harder on my family because I can't. Not to mention it costs us about $200 in meds a month, and about $60 a trip to the doctor.
Speaking of Doctors. I have clinic on the 6th. I get to see my loverly Dr.J. I am also going to talk to them about Olivia during this visit. They said they couldn't get her in until NOVEMBER! Really, she might have CF and she has to wait 5 months to even MAYBE get tested, then 6 weeks for the test to come back... hum right. Thats too long for me! On the 7th I have an appointment with my ENT doctor. Hopefully he can double check my nose, and fix this pain in my face b/c I can't take it anymore!
Well I think thats about all I got. If you wore red today, post a link to my blog with your pictures b/c I would love to see them. I gave myself and my daughter a red pedi-mani today. And we all had some kind of red on. We thought of Connerman all day!

Also today please keep my brother-in-law and his family in your prayers and thoughts. He just left today for a year long deployment. He left behind his wife and 6 month old daughter. So please...

*Jess*

ME update

2010-06-28T18:25:00.000-07:00

Now onto something bright and cheery -ok maybe not, but this will likely be a TMI post.

I started ZenPep a few weeks ago. I switch from Creon b/c they just weren't working. Come to find out they change the formula. Anyways. I started the Zenpep..and at first they were wonderful...7 days into it -not so much.

I was on 6 creon so we dropped down to 3 to start with b/c you would THINK that in the end you will work your way back up. So I started with 3 ONLY at meals. I then added 3 with tube feeds and that must have been where I went wrong.

I haven't went, hum... (number 2) in like 4 days. I feel like I want to die!!!!!! So I started taking miralax today (I have it on stand by since for me its normally the opposite issue). And no such luck yet. I talked to some people and I am going to up my dose to 3 times a day instead of 2 until this hum, "issue", has been resolved.

And then I guess I am going to start with 1 zenpep at a time per meals and so on...

I NEVER had this issue the last time I switched!

People have shocked me once again!!

2010-06-28T18:20:00.000-07:00

I had planned on updating about my daunting tummy issues, and still do. But first I want to discuss FRAUD! (read post 2 for ME update!)

The CF community has an imposter by the name of Ash Jance. She is claiming her 1 year old daughter is sick with CF, on life support, and just had a transplant. She has also stolen pictures from a fellow CFers sight (Skye).

I just don't understand how people could be this sick. I would GLADLY trade my life for a CF free one! I do love the community, and the person its made me become -but nothing can trade the days its going to take away from my daughter!!!

Anyone who is friends with her on facebook, or follows her caringbridge page, just delete and report her. The CF community has had a hard enough week dealing with the loose of Connerman that we do NOT need to be dealing with this either!!!

One for the books.

2010-06-26T10:29:00.000-07:00

I love my daughter, she is everything I have ever wanted in a child. She is funny and crazy and full of life. She is also a pain in my ass sometimes lol.

I bought her this cute little Elmo chair. It has a voice/vibration box that allows it to giggle and vibrate when you sit on it. Thursday night Olivia decided that we wanted to sit on the couch with mommy AND the elmo chair. So she picks it up and start to move it onto the couch. Apparently the hard, plastic box had fallen out of Elmo. As that happened Olivia picked up the chair and slung it around. It was at this moment I realized the box had fallen out, because it was at this moment that the box it be dead center in the nose.

OUCH!

I held my tears for a moment and just took some tylenol. I felt fine the rest of the day. However on into the night my pain increased as well as my ability to breath through my already stuffy nose. Friday I decided that I needed to go to the ER and have it x-rayed.

I got to the ER around 1:20. Around 3 they FINALLY got me back to a room but it was only b.c I needed a breathing treatment. They ran a CT scan. I then had to wait until around 6 for the results.

During this time I was teased about the fact that I just had sinus surgery and looking at my CT scan you could never tell. How bad is that?

The CT results showed a hairline fracture to the nose. Yup that's right, my daughter broke my nose. They said it could still be unhealed from the sinus surgery, but it wasn't likely b/c it was just to "fresh" looking.

They gave me a few percocets and told me to follow up with the ENT , which isn't until July 7th. And of course does he give me enough meds to last until then -NO. He gave me enough to last the weekend though.

It feels like someone hit me in the face with a brick. My eyes hurt, my forehead hurts, my cheeks hurt, and so on...

I guess I am off to take some meds and float away to la-la land.

*Jess*

A heavy heart...

2010-06-24T15:36:00.000-07:00

I had every intention today of getting on an talking about nothing but how crappy I feel.

Between coughing, which then caused me to gag, which then caused me to puked (FYI it was lovely vanilla formula, bleh), then constantly having to blow my nose, and then my stomach cramps...over all I got about 4 hours of sleep. I finally moved to the couch downstairs around 1:30am. I probably spent about 2 hours total last night just laying there with my vest on and my neb going, searching for SOME relief. About the time I fell asleep the albuteral would wear off and I'd need another treatment. And then about the next time I would fall alseep, hubby was getting up to head to PT. And then the kids were awake.

But in all that, what made me feel even worse is poor Conner and his family. Listening to myself complain when he, rather THEY, are going through end stage CF just makes me feel even worse.

I don't even know how to process it for myself. I can't even imagine how poor Sarah is feeling. I can't even begin to think about loosing my own battle with CF, muchless the loss of a child. This is just so unfair. I just don't understand. I am angry, I don't even know with who. Maybe just the disease itself. I wish people would understand how lucky they are. To have good health, and healthy kids. To live full lives and never have to worry about things like meds, treatments, and hospital stays. They don't have to worry about paying for medications or buying groceries. They don't have to worry about what kind of coffin they are going to buy for there 7 year old.

Ugh it just devastates my heart.

Please keep them in your prayers. Conners favorite color is red, so if you have a facebook please change the picture to something red in honor of Sweet Conner, who is fighting a very brave battle.

*Jess*

Supplements, Supplements, O for where art thou???

2010-06-23T17:59:00.000-07:00

I was extremely sick during the end of 2009. I vowed that I was going to make some BIG changes in my health. I spent about 2 months researching EVERYTHING. One website that helped alot was Ronnie's and I also used cysticlife,cf.com,cf2chat, and so on. I read what EVERYONE did and the results they got and slowly started adding some of my own.

At first I started with Vitamin C -1000mg a day. I then added Garlic (its a natural antibiotic), Vit D, Fish Oil (anti-inflammatory), meletonin (sleep),accuflora (probiotic) and I looked into fizzy-NAC.

I took them for 3 months as well as I was doing all my meds consistantly. I noticed a BIG jump in my health. My lung function went from 32% to 58%. I also noticed a BIG jump in my pocket book.

My supplements costed about $65 a month. Very steep on top of my $75 a month prescription co-pays.

So now I am going to do part 2 of my experiment. I am going to stop taking my supplements (and continue to do my meds properly) and see if I notice a huge difference as well. If I do I can conclude that it was likely just from doing my meds correctly, if I don't see as good of an improvement then the supplements are well worth it.

The only one that I will keep taking is the meletonin because it really does help me rest well. And I think that it has helped my immune system immensely.

I also start cayston on July 1st, so I will make sure I include that in my "supplement reports".

If anyone has any comments on supplements I would LOVE to hear them. I find this to be an every winding journey.

*Jess*

1st Entry

2010-06-22T14:36:00.000-07:00

I am starting this blog to jibber-jabber about my life w/ CF. Occasionally I'll talk about my cute little girl Olivia (as seen below)...

because we are trying to figure out if she too has CF. Maybe from time to time I'll talk about other parts of my life, but mostly my struggle and journey w/ CF and its related "issues".

Today I wanna mention my friend Chloe(hope it is ok I mentioned you). She watched some of the videos and things I have posted recently. She had never really thought about it before but she thought about how grateful she was to be healthy, and have healthy kids, and a healthy husband. She had never thought about how awful it would be to take 10 steps and not be able to breathe. She wrote a beautiful "note" on facebook and is helping raise some awareness for CF. So I just wanted to put a shoutout to her and say THANK YOU!

If you yourself want to help raise awareness, just post the link to the CF foundation (www.CFF.org) on your facebook or blog or whatever social networking site you have, in order to help CF stand for "Cure Found".

*Jess*