Hi Im a mom to a daughter that is 9 with cf. We are now at the hospital for the 4th time in a year due to lung infections. Today we were told that our daughter is border line diabetic cf related. My daughter has not had to be treated in the hospital for 8 years until the past year now it seems we are always here. I just need to hear from some people with cf or parents that might have gone through this. I feel like it's not going to get better sometimes. I just need to talk parents that understand. thanks<img src="i/expressions/face-icon-small-confused.gif" border="0"><img src="i/expressions/face-icon-small-sad.gif" border="0">
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Feeling helpless
- Thread starter anonymous
- Start date
Hi, You are not alone. I think probably at some point in time many of us have gone through what you are going through now. Probably not what you want to hear but our stint seemed to last two years. We have two teenage girls with CF. Our oldest was diagnosed at the age of 3, just one week before our second was born. We had it great until she (our oldest) was 9. She had her first infection. She had a clean out and all was good for three years. No hospitalizations, no infections. Then she had two in three and a half years. Still not bad by CF standards I guess. When she was 14 the summer of her freshman year she was admitted two days after we returned stateside from an overseas assignment. That was in June, she was admitted again in August and did well until March. She was admitted then and again in April. The summer of her sophomore year, one more time a new assignment and she was admitted in July, then again in October, January, and late March. It just seemed like it would never end. She had gotten to the point that she was not optomistic about anything, didn't want to do her school work and said "why? I'm just going to spend the rest of my life in the hospital anyway" But it finally turned around. She had had to get a port for that March infection and coincedentally she has not had another exacerbation(infection) since she was de-accessed the day before her 16th birthday. She's done well this last year, she made it through her entire junior year without IV antibiotics, we are now halfway through her senior summer and still all is looking good. I can't help but wonder though, when will the shoe drop? How long will this last? Will it ruin her senior year? Things are going too well, it can't last much longer. Should we have her get a tune up this summer before school starts? Those two years of hospital stay after hospital stay made us this way. We wonder in silence and try not to talk about how long it's been for fear of jinxing it. She has succeded in putting on weight and keeping it on. We believe that to be a major factor for her doing so well. All I can say is that there wasn't a single moment that I wasn't praying for her to get through that paritcular infection, for just some "normalcy" and I was specific too, the CF was OK if she could just be without any infections, no bugs to make her need IV antibiotics. I didn't feel I was asking for a miracle, but that would have been OK too. A cure for everyone would be ideal but just to not have her sick was what I wanted for right then. Being military our support system is usually in a different state. So we rely mostly on each other, my husband and I. So that is our story. Our other daughter, the one born a week later. She had her cord blood tested and matched up perfectly with her sister. She has been treated since week one. She is 14 now and is doing great. Their doctor while we were stationed overseas wondered if they had been mistaken about her diagnosis. Her stateside doctors when we returned had her sweattested again. She does have CF. She has only been hospitalized once and to be honest, I don't think it was even necessary. They didn't even try oral antibiotics but admitted her just because she'd never had IV antibiotics. They booted her out after 7 days. My husband had taken in her bike and put it on a trainer. There she peddled while watching TV or playing video games. Her pfts went back to normal after just three days. What makes them so different? I have no real clue I guess. The youngest is so much more active than the older one and has never had a weight issue. Getting enzymes from the start maybe. She is a cheerleader this year for the freshman squad. We are currently trying to engrave in her head that she has to be responsible for her treatments because she may not always be this healthy and the best way to stay this way is to not slack off on her treatments. She's learning. Well I guess I have gone on long enough. I'm here to listen anytime. I know how it feels to feel alone in all this. But you are not alone. Liza
Hi, Im glad to hear that your daughter is doing better. Getting weight on is such an ordeal sometimes. You just have to plug along and try all sorts of things. Is your daughter a picky eater? Mine sure are. Well one is alot easier than the other. I am sure once she gains some weight she will be better to fight off infections. I am sure that was part of my daughters problem those two years. She just couldn't get the weight on. Now she is maintaining about 105, they'd like her to be about 115 or so but heck we are happy with 105 and maintaining! She is 5'5". A few more wouldn't hurt and she knows that but we have stopped trying to constantly make her eat. And she is doing good. We buy only high calorie foods. Except my husbands diet soda and my C2. (that new coke that came out). Guess I'd better get going. Please, be sure to post if you just need someone to listen or post back. Let us know how she's doing and when she gets to go home. Liza
Hi everyone,I have a son with cf and he is 20 now and we still go through 3 to 4 stays a year in the hospital. When he was a baby we stay in the hospital 10 mths out of his first year. he took his first steps in there.I still feel blessed because thay told us he would never live to see school. It took the doctors 10 mths before they knew what was wrong with him.I would sleep sitting up holding him so he could breathe. WE went home with tents and iv's and I also give him shots in his legs 3 times a day. He has beaten more odds then any of us will ever realize. He has gone through numerous of surgeies with his nose and all his sinuses . WE spent numerous of holidays there. It was actually Thanksgiving when they gaves us the news that he had CF. I was 22 when they told me that baby was going to die.I really didn't know what to think or how to act all I knew was there hope and I wasn't ready to give up although there was times during our struggles I wanted to. I look at him now And realize that God gave me this angel to help me understand that we can never give up. He is sick right now but we still go one day at a time and we talk openly about life and death his courage has help me through all this. I know its hard but some have it even harder so thank God for what we have and say prayers thoughs who suffer more.