CF is a very scarey illness. I too hid it for many years, people would ask, I would say "I have allergies".
At the end of high school, I came to my senses and said "I have it, I will let others know.". I did and so glad I was able to do it. I discovered others who had family members with CF, or knew someone.
I am not sure what is so embarrassing about it. The cough? The poop? Well everyone coughs and poops. Taking meds was hard for me. Embaressed. I did not like my thin frame and also that I had no boobs. All things that are important to a person at those teen year and young adult.
I survived it!!! And survive I have done. I am now 46. My sister who has CF was 10 years older than me.
I had a double lung transplant in 1997. 12 years of life has been so wonderful. I can enjoy my family, they can enjoy me.
Lung transplant is not for everyone, and often when you don't need it, you say to yourself "I will not do that. A person who died, and I got their lungs. Weird"
But I would say the majority of us will get them. I read all the posts and realized that most of you all think about "the end". How and when will it happen. Very normal feelings. Talking about death is an important topic that everyone in our society should do with more ease. In the USA we are not good about talking about our own future death, or the death of loved ones.
Going into transplant is a long process, and I hope your doctors are on the ball enough to mention it when you are in need. I actually have encountered a couple doctors who refused to bring the topic up, because either their own fears, or they don't believe in it. Ethically, that is not what a doctor should be doing.
I would suggest just bringing it up with your CF doctor. See what they say. Remember, they are not the ones to decide if you will get on the waiting list. It is a lung transplant team, at a lung transplant hospital. I think there are about 100 centers in the USA now.
Much has changed with the whole lung transplant surgery, the meds, the rules of life after since I got my transplant.
So just step forward and say the words to your CF team, and talk about it with your family as well. Organ donation is still not something that many do not know much about. It is a wonderful step to take when a loved one is brain dead. Knowing your families wishes of donating or not, is important to know for each family member.
My sister Mary Lou had her double lung transplant in 2001. She for some awful reason got ovarian cancer 4 years later and thank goodness it was a rare and fast type of cancer and she did not have to suffer long. I miss her so much. We could talk about CF lungs, and then transplanted lungs and we knew what the other one felt.
If you like to email me anytime. Please do.
I also have a web site and chat room for lung illness and lung transplant that you are more than welcome to check out. I am just growing the site, as MSN shut down the old site I had and there were 1500 members.
Bi-lateral Lung Transplant, Sept 12, 1997,due to CF
University of North Carolina, Chapel Hill
...Edited to remove links...
Post Edited By Moderator (Darkies Gem) : 9/1/2009 3:40:43 PM (GMT-6)