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Anyone need a friend w/ CF??? I do...
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Date Joined Nov 2005
Total Posts : 1
Posted 11/9/2005 8:58 PM (GMT -6)
Hi Everyone, I'm just trying to find some people to relate to. My name is Mike, I'm 27 living with CF and have posted to this site before and have spoke to a few of you. It's been quite some time since I've last been online. I've spent the past few months trying to get my health in order, but things just won't get better. My lung function is down to 20% and I am awaiting a bi-lateral lung transplant. Although I was in denial of needing this for years, it has finally sunk in. Now I'm at a point that I'm actually anticipating the transplant, as I feel horrible every day now. Although I'm doing poorly physically, I've kept my spirits up mentally.
Most of us in this site either have CF, or know someone close with the disease. Hopefully we can all try and see the strength that it has given us, instead of feeling like it's a disablity. We've gone through some hard times in life, that have made us stronger people. We all have an added wisdom in life from the experiences we've had. Instead of dwelling on feeling physically ill, as I did for many years... I now want to use the strength I've gained from this illness to try and reach out to others. Many people out there just need someone to talk to, some to share their pain with. I hope that for those of you reading this, that may be in the negative slump I was once in... can reach inside yourself and realize that life can be better... if you allow it. Take away all the pain, and turn it into a positive lesson. Something that will make you feel proud and strong to have gone through so much. Many people don't have this opportunity in life. Especially those of us that will be getting a transplant some day. This gives us the chance to start life over again. To see the world through a body that can breathe clearly... something we all wish we could experience.
Personally, I know that for myself... once I get the transplant, I will be grateful to be alive. I vow to myself and all you people out there, that my life will be dedicated to trying to help others cope with this illness. There isn't much available for CF patients in terms of social, psychological and emotional help with dealing with Cystic Fibrosis. That doesn't have to be. We can all try and help one another in our times of need. Right now is a very hard time for me, I am just asked for a few of you to reach out to me. It's very gratifying when you can try and listen to someone else... allow them to vent to you. Although you may know personally know me... know that I am hear to listen if you would like to share your story. I would also be happy to share more of mine.
Well, I won't bore you all to death with too many words... hopefully some of you actually read to this point. It would be great to hear from someone, I respond to all of my emails... but when I'm a little sicker, it may take a little longer. I wish the best of health to all of you, with CF and without. Endulge in the good in life, not the bad. The key to happiness for me, was making peace with myself and accepting the life I've been given. I realized that all the hate I felt, the resentment and anger where actually myself feeling unhappy because of how my life was. The only way to change this, is to change the way you percieve life. If you think positive, you will feel much better about
yourself and those around you. I hope this messsage didn't sound too preachy. My intent is to try and reach out to those that seem unreachable.
I can be reached at "firstname.lastname@example.org" Please put CYSTIC FIBROSIS in the subject line... Thanks
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Date Joined Sep 2005
Total Posts : 318
Posted 11/11/2005 7:52 PM (GMT -6)
Thank you so much for posting. I need your words of encouragement right now. I am a mom with twins that have CF and they are 9 yrs old. My heart undoubtedly breaks for them. I am at a sense of loss with my pain I feel for them and for everyone who has CF to live with. Oh how my heart breaks.
Please keep posting so that I can continue to read your messages of hope!.
Kathy, mom to identical twin boys with CF (9yrs), daughter 20, grandaughter 2 1/2, one on the way!
If there is a
for Cystic Fibrosis this very moment and this is "
not soon enough
"...you would hear this twins mom "Across America" "
Moderator, Cystic Fibrosis.
"If there is questionable doubt, check it out"....with your healthcare provider!
. We are here to offer support, encouragement, and answer your questions as best we can. Don't hesitate to step on in and enjoy!.
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Date Joined Nov 2005
Total Posts : 36
Posted 11/24/2005 1:23 AM (GMT -6)
I can relate to you in many ways. sometimes you just need to know there is somone else out there who holds out home. an optomistic CF pashent seems to be hard to find theese days.
when I was younger I spend a lot of time in the hospital, I think that the nursses there rased me about
as much as my parents did. the hospital has become my home away from home, and the volenteers docters nurses, and RT's are my second family.
I have also come to know a lot of the other CFers. about
2 years ago a very good friend of mine with CF passed away. she had had a lung tranceplant 3 years earlyer, during those 3 years she did amazingly well and lived life for all it was worth.
after she died I asked my favorie nurse what she concidered a success for a lung tranceplant. I know that doctors don't concider it a full success untill 5 years. but I like the nurses ansore. she told me that if somone lives for just one day without the strugle for breath, if he or she can make one dream come true, even if that dream is to take in a full breath of air for the first time, then the tranceplant was a success.
that got me thinking about
my friend, she always had 2 goles in life, 1, to become a doctor, and 2, she always wanted to play soccer. she wasn't able to make her first dream come true, but she tole me when she was in the hospis that the seson of soccer she played after her tranceplant made everything she had ever been through worth it.
my friend was an insperation to me, and even though she is gone, she still is. she makes me remember that it is the little things that matter. like the feeling when you first get out of the hospital and your PFT's are back to your baceline, whatever that is, and you take a breath, that feeling that you can take on the world. that is what life is all about
, thats what you need to life for.
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