is it better to have friends with cf?

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red emily
New Member


Date Joined Nov 2006
Total Posts : 5
   Posted 11/19/2006 6:18 PM (GMT -7)   
hello everyone!
i don't have cf, but my boyfriend does. He s 23 and he s been quite ill recently. one of the things he finds really hard is that he feels like no one really knows what it's like. He s never met anyone with cf, and i was wondering whether knowing other people with cf might help. what does everyone think? i'd love to hear your experiences..
thanks!

THome
New Member


Date Joined Jan 2007
Total Posts : 2
   Posted 1/3/2007 12:11 AM (GMT -7)   
It can be good and bad.  I'm 27 now and growing up with CF I myself have found at times that no one can understand what its like on a day to day basis, especially when times are tougher.  For the most part I have lived a healthy life and only in the past year or two have I run into greater struggles.  Like I started out saying though, there can be postives and negatives to interacting with more people with CF.  On the good side you can share your similar experiences, seeing that there are in fact others that are going through the same trials and tribulations you go through.  Interacting directly with other people with Cf can be iffy, from a bacteria perspective not only could you be exposing yourself to harmful bacteria they may have, but also you could be exposing them.  The most obvious physical risk if he was looking at directly interacting with other CF patients would be to make sure your boyfriend is neither MSRA or Cepacia positive and that the CF patients he does interact with are not either.  I'm not sure how strict they are on this in other places but at the hospital I go to they are very careful to keep patients separated especially those that are MSRA and Cepacia.
Since you asked I will say that for myself it was almost more painful than pleasant.  The first time I had to stay in hospital I was 14 years old and staying in a teen ward at the local children's hospital where there where a number of other CF patients.  On the good side the other children with CF were very helpful towards me, most were aware it was my first stay and did there best to help me, and I'll always remember and cherish that fact.  However, in the grim reality side of things, of the 8 CF patients that I met in that stay all have since passed on which was a very difficult thing to deal with.

red emily
New Member


Date Joined Nov 2006
Total Posts : 5
   Posted 1/8/2007 3:23 PM (GMT -7)   
thank you for replying, and for being honest. I'm really sorry about the friend's you've lost. My boyfriend has got MRSA, so i suppose that means he doesn't have much choice, which is perhaps a good thing. It is really helpful for me to hear your experiences though, so that I can understand cf better.
x red emily

survivinwithCF
New Member


Date Joined Jan 2007
Total Posts : 4
   Posted 1/18/2007 7:23 PM (GMT -7)   
i think that this talkin to each other thing is really cool, im new so im not use to it yet but i'll get there. my brother has Cf and he dosnt have it hard at all his lung fuctions are so good and mine are pretty bad and he dosnt even understand what it feels like and he has the same disease as i do, he smokes regulary and dosnt do the things he needs to, so i guess that not always people with the same disease would no how we feel. but im up for questions if you or your boyfriend want to talk.
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