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Cystic Fibrosis, My Son Has It..what To Expect?

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Cystic Fibrosis, My Son Has It..what To Expect?

Postby Nerthach » Fri Aug 18, 2017 9:14 am

Hi...I also have cystic fibrosis. I know it's completely overwhelming and you just want the doctors to say that they are wrong and have made a mistake, but really, they aren't telling you that this is the end of the world. It sounds like your son was diagnosed a little later than usual, so was I. I was diagnosed at 15. CF is hard to deal with, but you can definitely manage it. I never think about the life-expectancy thing, and you shouldn't either, it just worries people! I know it's always there in the back of your mind, but don't let it stop you from treating your son any differently than you would treat one without cf, as far as love and patience, etc, go. People with cf can exceed the expectations, just like people with cancer and other diseases. If you help your son, and he tries hard and is motivated as an adult, and sticks strictly to his treatments, I believe that he will have a better outcome.


You say he hasn't grown....well, with the new treatments he's going to do (nebs and vest) his lungs will feel better, and he'll be able to breathe better. But mostly, he must have been put on enzymes, right? The pancreatic enzymes make you put weight on for sure! Your son will probably look and feel healthier than he ever has! I know it's ridculous to say "don't worry," because that's probably always going to be impossible. But as long as youhave a supportive doctor and your son takes care of what he has to deal with, it will work out in the long run.

Besides, there's so much hope for a cure now. Since they've made so many advances in the treatments, people are living longer now than ever. 37 doesn't sound vey long, I know...but in the times that your son grows up, the expectancy should keep rising. (In the fifties, it was rare to attend middle school before you died!) And they're working on a very important treatment right now, that has the potential to "correct" the mutant gene. Read about it here, http://www.cff.org/research/DrugDevelopm...
Just get involved in CF Walks and Marathons and Fundraising events, it's all we can do right now to hope for the cure:)

The thing about cf, it's so time consuming! But all the support you could ever want is here: www.cysticfibrosis.com

Just go to "forums" and make an account. There are so many helpful people that answer questions and contribute stories very similar to what yours might be. Best of luck to your son and family!
Nerthach
 
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Cystic Fibrosis, My Son Has It..what To Expect?

Postby Etienne » Fri Aug 18, 2017 9:28 am

Visit this site, they have a LOT of information and advice, and may even be able to give you other support.

http://www.cftrust.org.uk/
Etienne
 
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Cystic Fibrosis, My Son Has It..what To Expect?

Postby timeus » Fri Aug 18, 2017 9:30 am

In most cases, CF causes an early death. Average life expectancy is around 36.8 years according to the Cystic Fibrosis Foundation, although improvements in treatments mean a baby born today could expect to live longer.

Gene therapy holds promise as a potential avenue to cure cystic fibrosis

Lung transplantation often becomes necessary for individuals with cystic fibrosis as lung function and exercise tolerance declines. Although single lung transplantation is possible in other diseases, individuals with CF must have both lungs replaced because the remaining lung would contain bacteria that could infect the transplanted lung. A pancreatic or liver transplant may be performed at the same time in order to alleviate liver disease and/or diabetes.

Be strong for him, sometimes is harder for the parents than for their children in terms of accepting their short life prognosis.
timeus
 
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Cystic Fibrosis, My Son Has It..what To Expect?

Postby Chin-Mae » Fri Aug 18, 2017 9:41 am

Expect to spend a lot of time with your local CF clinic and doctors, at least at first.
They will take a lot of time teaching you what to expect and do.


Also, check out cff.org, there is a whole bunch of great information there.

When your son starts taking pancreatic enzymes, because he's not absorbing his food very well, expect that he'll catch up a bit on some of his missed growth.


Expect to learn to cook with high calorie, high fat foods, at least for your child (personally, I could eat the CF diet every day but unfortunately I do absorb all the calories and fat...sigh..)

You'll also learn a lot of things to do to keep your son's lungs healthy.

And expect this to be overwhelming and scary for both of you.
My thoughts are with you.
Feel free to email me if you need more answers....
Chin-Mae
 
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