My best friend has CF -

[Sk1987]

I don't have CF. I don't pretend to have any idea how it feels, apart from watching my friend (we're both guys, mid-20s, and British, which is maybe why we're rubbish at this) for the last few years.

I know the obvious answer is: talk to him. I have, and I know I need to do it more, but I also feel like I've learned quite a lot from browsing these forums that knowing more about how we can get through it without every trip to the pub feeling like a support group session would help. I'm shocked by how little info there is out there (or I've found?) for those of us who are family/friends. He's got to his mid-20s with only one month-long hospital stay - is that amazingly lucky or just delaying the inveitable? I want to know so many things: Is this the sort of condition where treatment is improving so much that it's like HIV or something? Should I treat every foreign holiday like it's one of the last he'll be able to be join in on? Is it true that he'll need to freeze sperm or never have a hope of family (is family just out of the question?)?

Mainly i want to know: what can/should I do, as a mate who is on the divide between the standard lad/mate/manly friends who keep him feeling 'normal' (mainly by never discussing it - which I think he likes in some ways), and the people who are closest in the 'family' way (dad/brother/ex/currentgirlfriend). If I'd help most by just keeping quiet and acting like we always have then I'd do that too - I just get the sense I should be playing it smarter.

 

[welshwitch]

Wow, you're a fantastic friend! And good for you for wanting to talk to him about it. It's never easy.

This is one of the hardest things for me. (I'm a 33 year old woman w. CF). I'll be honest. I HATE talking about it with friends and family. Oftentimes I can't really talk about it without crying. Is this my baggage? Yes. But I get the sense that my friends want to talk more about it. But they take cues from me. Which basically means it's not a topic for polite conversation

Every once in a while though I have a "heart to heart" with one of my friends about it....and they are just there to listen. I think they have all the facts.

Now, on to your questions:

"Should I treat every foreign holiday like it's one of the last he'll be able to be join in on?" Hell, no. People with CF just want to be treated like everyone else. They do NOT want to be treated like some sort of dying patient. Act normal. Enjoy it. He will too. Don't treat him different just because he has a health issue.

"Is this the sort of condition where treatment is improving so much that it's like HIV or something?" Hmm...comparing it to HIV isn't really what we like hearing, but as for your question on whether treatment is improving, the answer is yes. It's no longer the kind of disease where people die as kids. But, it's a nebulous thing. There are people who are adults in great health and live into their 50's, 60's 70's and 80's. But there are also adults in their 20's and 30's who have to get lung transplants. You say he's only been in the hospital once. Do you know how healthy he is? This could answer a lot of questions as to his condition.

"He's got to his mid-20s with only one month-long hospital stay - is that amazingly lucky or just delaying the inveitable?" Not sure. Do you know that his kung function is? That is one (but not the only) measure of how things are going with CF. People with a lung function of 80% or higher are generally doing well. When your lung function gets to 20% or so you are looking at a lung transplant. Is he working full time or in school? That should say a lot too. When people start getting really beat down by CF they oftentimes have to go on disability or something a long those lines.

"Is it true that he'll need to freeze sperm or never have a hope of family (is family just out of the question?)?" Anything is possible with modern technology. You are probably thinking of the fact that many men have trouble getting a woman pregnant naturally because their are some issues with the plumbing. But that doesn't mean he's infertile. Many men with CF have had kids with the help of reproductive technology, ie in vitro insemination. It's actually a common thing. So that's not impossible at all.

What I would do is make the door open to him -- let him know that if he ever wants to talk about it, you'll be here for him. But, don't force him to talk about it. For a lot of us, it's just too hard to talk about on a daily basis without some major emotional energy.

 

[CrisDopher]

It is helpful to have friends who dont' freak out at every new development as the years go by. By seeking out knowledge beforehand, you're prepared to be a rock-steady friend for him, when a complication arises it won't be the first you've ever heard of it.

 

[scarecrow]

If he's in his 20's and only in the hospital once then he must have a pretty good handle on things. As a friend I would say just encourage him to stay active and keep doing what he's doing.

 

[MichaelL]

Great responses above already. I'll try to add a few other comments. CF cases vary considerably from person-to-person. Some of the factors that can effect a person's health:
1) Which gene mutation they have -- there are many associated with CF. Some mutations cause more mild symptoms and some more serious.
2) The infections a person picks up in their lungs is also very important for their long-term health. There are many bugs out there that can give a person problems -- some more serious than others.
3) How well a person adheres to their medical routine. Routines can vary, but they are typically time consuming and some people decide to skip treatments to try to live a normal life.

Although not the only measure, lung function is a good indicator as to a person's current health. As stated above, if your friend is 80% or higher he can probably lead a pretty normal life other than his daily medical routine. If he's only been in the hospital once, he's likely in pretty good health right now.

Life expectancy varies widely, but has increased considerably in the last few decades. Median life expectancy in Canada is now up to 37. At least a couple people who post to this site are in their 70's.

I'm also one of those people who prefers not to talk about my health. I've been having health issues the last several years, so my friends always ask how I'm doing. For most friends, I usually give them a quick response and don't go into a lot of detail. However, I have a couple friends that I do tell them more about what's going on. I agree with the comment above -- let your friend know you are happy to discuss it when he wants to.

A very exciting recent development in CF treatment is Kalydeco. Although not a cure, people taking it find that a lot of their symptoms go away. If you haven't heard of it, look it up on this site or on the Internet. Currently, it only treats one particular gene mutation. However, there's hope that they'll be able to extend it to other mutations.

I don't know a lot about fertility, but like many other things this varies by mutation.

You sound like a great friend. I hope your mate is doing well.