Posted 11/4/2012 10:33 AM (GMT -8)
Hello, all. Just found this website and thought I'd add my experience so far. At the age of 5, I got pnemonia like 5 or 6 times (back in 1980's). Local dr's told my parents they were crazy and nothing was wrong with me. Couldn't ride my bike to get the mail without being winded - not exactly what you'd call "healthy.". I coughed a lot, wheezed, and couldn't put on weight. Drs noticed I wasn't growing and looked pretty sickly as a stick figure, all skin and bones, so finally refered me to Minneapolis Children's in Minnesota. It was there that I was given a sweat test - and failed it several times. Without having a lot of info back in the 80's, drs said I had Cystic Fibrosis and would probably die. My parents were told I would die young and that I was lucky to have made it this far. I was put on nebulizer treatments 3-5x a day. My folks told to pund my chest. And I coughed up chunks of hard white phlem. My parents told my teachers I was "special needs" due to health problems and I remember being so embaressed cause the other kids thought I would die young. Great to have a death sentance at such a young age! My parents were farmers (lots of dust, cows, etc) and often took me into barn or fields to do work. No one knew why I was so darn sick and wasn't getting any better. ... about the time I turned 12, my parents went bankrupt and divorced. about 6 months later, I hit a growth spurt - and was able to play without having my neb treatments. In fact, for the first time in my life - I didn't need meds at all!!! Drs said I must be cured -its a miracle! And told my parents I had recovered and that maybe I just had "sports athsma" or something like that - even though I kept failing their dumb old sweat tests... In school, I became very active. In high school, I even ran hurtles in track. My grades were good and my IQ was high - so I went on to college. Worked full time. Took no pills, meds, or treatments for many, many years! I only kept an inhailer handy when I'd work out... I would cough up those thick white chunks in the morning after I showered, but never told anyone. ... Time passed, into my mid 20's now - moved from the country into Minneapolis after college and starting my career and adult life. In mid 20's, I found that 8 hour work day, 40 hrs a week, made me come home after work and crash on couch. I had noooo energy. My fiance, at that time, complained that I wasn't worth beans if I was basically that dead after a day in the office - and told me I wasn't much fun to be around. I tried naps, vitamins, you name it - but my health seemed like 40 hour work weeks were killing me. My fiance eventually said he didn't want to live like this and called off the engagement. We had been together nearly 6 years. It was crushing. While at the office one day, I noticed a coworker had on a black vest and had a nebulizer in the corner... He was a few years older, in his late 20's, thin, pale and I knew he ate a ton of twinkies of lunch and took handfuls of pills. I got brave and decided I'd ask him if that was a nebulizer? And what was that vest thing? He pulled meinto his office and told me he had CF. I was a bit stunned, but said, OMG - that's what I had!!! We exchanged looks and there was a long silence. He says, what you HaD? Then he asked me when was the last time I was seen... I says, um, when I was like 12. After a brief conversation - he gave me the name of his adult CF dr at the University of Minnesota's CF Unit. He told me to call them and maybe just go in for a check up - he says couldn't hurt - and they might want to know who I am, since they do research. I got a little scared when he said its awesome to know you have this too - doesn't bother you having a life expectancy of 30, does it? I nearly dropped my teeth... 30? WHAT? DO I have CF? I thought drs said I was cured??? ... His nagging got me into the U of M and brought 2 days of solid tests. He was correct - drs couldn't believe I had gone to college, worked FT, took no meds, and had noooo treatment or CF visits since I was 12. They thought perhaps I didn't have CF at all- but told me technology had changed since 80's and maybe I needed to have a new diagnosis done. I was pretty scared, was I going to enter that sick world again where I couldn't even get the mail??? The childhood memories came back and I about had a nervous breakdown just thinking about it. Despite all the fear, I agreed to have my DNA sent out to a lab in California from the U of M. DNA testing for CF, at this level, was not something that existed when I was a child... I also had a sweat test done, and again FAILED it. Days later, I got results back from California on my DNA. The U of M sat me down with a CF genetic counselor. The counselor said good news and bad news. Good news is, most dr's would call you a "boarder-line" case... Bad news is, you have genes from both parents that we'd call CF... However, your DNA strain - although it does make you sick - it isn't near as bad as some of the others out there, but its enough to make you have symptoms. The geneticist told me I was not cured at 12 - the symptoms prolly hid if my parents stopped farming... All that dust was getting into my lungs and I am very lucky that I didn't die at a young age over all the lung infections. Drs, at that point, marveled at how well I was, overall. The medical team decided not to put me on meds or add anything, as long as I was OK with eating like a horse with high calorie and having weid smelly poo - getting a lot of rest - they wouldn't change anything. They did caution that I'd ALWAYS have CF,so would prolly have trouble getting prego due to thick mucas and that my partner, who ever he may be, should be tested for CF inadvance (genetic). I agreed to keep in touch and come in every 1-2 years for testing at the U of M; signed off all records so they could be used for research; and allowed the U of M to register me in the book of records that YES I have CF in the National CF registry. At least I know for sure, I told myself. I did the right thing. I called my parents - told them what was going on. The U of M also wanted them to have their DNA run too - to learn more about me and to have it for future treatment records if needed - but both of my parents declined to particiate. One stated having no money to cover cost and the other stated it would violate religion to kisolate DNA... OK, whatever, ... :( Now, a few years have passed and I am 30 years old. I have met a wonderful man, been married nearly a year, and although he doesn't totally get CF - he says he love me more than anything and it doesn't matter. He says let's grow old and hope for the best! I have wrote a will and made him aware of my wishes - just in case. Although he doesn't like it when I talk about having a shorter life expectancy. :) about 4 months into our marriage, he was old he is at high risk for testicular cancer and may not be able to have children after 31 years of age. I paniced, knowing those genetic counslors told me with MY CF that I may have trouble getting pregant... So we decided what the heck, let's just try and see what happens??? I had an IUD (merina) removed and in less than a month later - drs confirmed I was prego!!! My husband was tested for CF, his came out negative. For fun, I was tested too at local clinic and sure enough - it read CF positive. about the time we learned that we were expecting, I lost my job... Financially, it was horrible - but having CF and being home isn't all bad when prego! The dr's locally at the clinic concated the U of M, got my medical records, and agreed to coodinate my care. They worried at first about "baby" - would baby grow? Would my body hold up? Would I need to change my diet? And how would CF affect everything??? My husband and I agreed, whever happens, happens, so let's just go with it and hope for the best. I again signed off on all medical records so they could be used for research on myself, "baby", and our next 9 months with me having CF. The first few weeks of being prego - I slept. And I slept. And I slept. I got up only long enough to eat and pee. For like the first two months I was in bed. I didn't gain weight - in fact, I lost over 10 lbs. Drs worried about this and said I didn't have any weight to lose in the first place. They put me on enzymes, folic acid, calcium, and pushed high calories. I didn't throw up once first trimester, but I felt like I had hit a wall. My family quietly watched over me, my husband was very supportive, and I am pretty sure everyone thought I'd prolly lose the baby. Ultrasounds showed "baby" first trimester being small, under weight... But active and having a strong heartbeat. Drs said since my husband didn't have CF that baby won't have CF. That was good news. But I knew she could still be a carrier... After months of eating crackers and working on couch tan, second trimester arrived! My energy got better and I found that I could run light erronds, do housework, and be out and about - just that I might need a nap for a few hours worked into my schedule. I was far more active, but not as much as before I had become prego. I used my energy (best in mornings) to shop for baby clothes and would nap prolly 1-3 pm everyday. I had days where I was very tired and didn't get much of anything done - but husband would help me out so we got through them together. Weight gain during second trimester was 10 lbs I had lost first trimester, plus another 10 lbs at the end. Most people could not tell I was prego, even at 6 months as I had only put on 10 lbs from where I was before I got prego!!! I didn't have to buy maternity clothes at all, everything fit. I was still in my size 2 jeans. Ultra sound showed baby was still light and smaller than average - but strong heart beat and good movement. We also learned second trimester that we would be having a baby girl!!! My overall energy picked UP, and I mean wayyyy UP at the end of second trimester. I was eating well, like a horse, and able to exercise like walks, rollerblading, swimming. I think peoplewho saw me had no clue I'd be having a baby! Dr said no reason to do anything out of ordinary - my body seemed to be adjusting well and "baby" was "catching up" to where she needed to be (size and weight.). Dr was very pleased with my weight gain. I was happy too - it was the "fattest" I ever was in my entire life!!! And I was still pretty much a stick figure with a tiny tummy. By the end of second trimester, my breasts had jumped UP a full cup size, I could visablly see hips and a gorgeous curvy figure emerging... I felt beautiful for the first time in my life. Skin looked good, had color (normally I'm pale). No strech marks anywhere - but did feel pain as my stomach was starting to move out and get thicker. No naps be end of second trimester required. Third trimester, dr tested me for diabetes - and that came out normal. My weight gain pretty much stopped cold in its tracks. I noticed my tummy swelling and breast size decreasing, so weight must have moved from where it was building up to now adding weight/thickness to the actual baby. I started to lose a few lbs, but tummy started to show. I could still wear XS and small t'shirts, but mediums felt more comfy. My hips went from size 2 jeans being lose to having to buy low-rise size 6 reRock Express jeans... Dr explained your bones shift to prepare for child birth. Can button jeans just fine, just noticed wider hips, but haven't really put on weight, just wide bones. Third trimester felt "baby" kicking a lot, learned to sleep on left side to help me breathe better. Did develop some wheezing and difficulty breathing about 30 weeks. Dr said organs move around and reduce lung space. I literally couldn't speak complete sentances without having to stop and pause and catch my breath. With problems breathing, I also noticed I'd get winded 31 weeks walking to the fridge! Not sure if it was the lack of oxygen or what - but I'd get light headed, see stars. I also had acid coming up my throat making me queezy. The nausea made it hard to want to eat anything. And. For the first time, I began throwing up. All this being said, I started to lose weight, want to sleep more, and found it crazy hard to breath the farther along I went. At last check up (monthly) dr said "baby" is now getting too big for my frame. "Baby" gets enough air and nutients from me and I get whatever is left. So although she is doing well and scheduled to be just under normal weight and size - I prolly will be looking like hell! Lol. I was cautioned too "baby" can arrive at anytime. "Baby" could arrive early and likey will ... With my small frame, dr said c-section will prolly be the case and they might have to take her a few weeks early as my body can't support "baby" if she gets too big. As of today, I am about 32 weeks along. I find myself having a ton of energy one day and then in bed the next tired out. "Baby" is a few lbs now and it kind of hurts when she moves. I am up every morning about 1 AM and can't sleep. Find it hard to breath. But am getting by so far. Its been a careful pregancy - making sure I keep enough weight on, have enough rest, allow myself flexability to do things when I feel good and have "energy." No doubt, sleeping away 1st trimester and having breathing problems 3rd trimester is prolly the worst - but overall its been managable. I don't think I could have worked these last 9 months - nope, no way, as my health was very good with CF (and asthma) but seems to be challenged day by day. At first the lack of energy was disappointing - but if that is the worst of things, oh well. To help time pass, I've been cooking and baking high calorie foods and deserts. ;) Catching up on books and bad TV. Relying heavily upon my husband to help make up for what I lack! Dr will see me now every 2 weeks - really watching my weight gain, breathing, energy level here at 32 weeks on out. I've had back pain, sore feet - trying to keep them elevated or stay off them. Overall, my weight is backsliding 1-3 lbs but again you can see a tiny tummy on my small body if you look hard enough!!! ;). I'd tell all you gals and guys with CF, if I can do it - YOU CAN TOO. I woudnt advise working unless you have to - that was prolly the best thing that happened for me to lose my job. I've been able to focus on ME and "baby" - and take far better care of myself and my CF. I'm just a few days away from 31 years old... And hope to have my little girl soon. Don't let anyone tell you that your short life is going to limit your future. Just go for it. Live. And good luck!!!