Talking about CF and life...

farbeyond1

New member
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 "farbeyond1@cox.net" Please put CYSTIC FIBROSIS in the subject line... Thanks )

Take care,
Mike
 

anonymous

New member
Mike,
My thoughts and prayers are with you now and for your upcoming transplant. I hope that you have a wonderful Thanksgiving. You reminded me tonight even moreso, how thankful I am and should be every day. Joanne
 

anonymous

New member
Mike,
My name is Missy..I am a single mom with two boys who are 7 & 10..I was told December 12th that my 10yoa son may have CF..We are going on January 9th to have a sweat test done...His name is Austin...he is little..but he has had asthma since he was 16 months old and has always been in and out of the hospital...he had RSV 3x as a baby and in the last 2 years has had pneumonia 3x...his last say in the hopsital was the first of October when his left lung collapsed..that was the 2nd time this year the same lung collapsed..so they sent me to a specialist who blind sided me with this...I havent told Austin what it is exactly cause right now I am just trying to figure out how to deal with it...We dont know for sure yet and I am holding out hope but when you look at all of his history and they symptoms you read on the internet I would be suprised if he didnt...I guess what I need to know is if at 10yoa do u think if he does have it that I should tell him everything about it or what exactly I should tell him...he is used to doctors and medicines and hospital stays but how do u tell your son that he has something that there is no cure for...I read your letter and it seemed so sincere and I will pray for you as I do austin..I just dont have anyone I can talk to about this that understands the fear I am going thru..Everyone says oh he will be ok and I'm sure he will but I have to prepare myself to deal with if he isnt...thank you for listening...Missy
 
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