Guest guest Posted November 19, 2003 Report Share Posted November 19, 2003 Hi Jackie, Life is no fun for an 18year old who is spending all their time in the hospital. What kind of medical service can they provide at home? I am surprised that he was evaluated for lung tx with an FEV1 of 39%. That is a bit high for considering lung transplant. Is your son on all the best meds? Like zithromax? Nebulized meds? Is he doing chest physiotherapy? Have the docs mentioned physical therapy? Often getting more fit, by walking, stair stepper, bike can increase lung function or at least make you feel better and stronger. I have an article that is excellent about those individuals who choose not to have a lung transplant. But there are different stages of that. Some say no and stick with it, others sort of go back and forth on the fence, others switch to yes when things get rough. Did your son share with you the reason he does not want a tx? Does he feel it is too expensive? He will be a burden? That life will end as he knows it ( it will and it will be a great time after). That the unknown is too hard to deal with? That he knows no one who had a lung tx and is doing well? Be sure that your son talks to you and his family, to his docs, to the tx team that evaluated him to get some new and updated info. Not sure when he had that evaluation. Also, some lung tx centers are not as experienced in CF lung tx. We are different, we do have different complications, so finding a center that is CF related more, is the best thing. And I think meeting with their tx team would be more reassuring to patient and family hearing their expeierences and success. I am going to email the article in a separate email, as I think it is very interesting reading for everyone and also insite into how CF patients facing lung transplant may react and how their CF team needs to respect that. I also will let you know that i had a lung tx 6 years ago, my sister 3 years ago. Life is totally different. Nothing the same as with CF lungs. It is wonderful, new goals, new adventures and happiness every day that I took that step. I also wrote a book. I will try to list that below. It is called Taking Flight: Inspirational Stories of Lung Transplantation. It has many CF stories and other lung illnesses patients who had a lung tx and what they are doing now and their thoughts on the process the surgery, the recovery and their donor family. V ery hard to put it down. Let me know if I can answer any queistions for you. Joanne Joanne M. Schum Cystic Fibrosis Bi-lateral Lung Transplant Recipient September 12, 1997 University of North Carolina Hospitals Chapel Hill Residence: Upstate New York email: luckylungsforjo@... Manager of: Transplant Support - Lung, Heart/Lung, Heart http://groups.msn.com/TransplantSupportLungHeartLungHeart " Taking Flight - Inspirational Stories of Lung Transplantation " Compiled by Joanne Schum Authored by lung recipients around the world http://www.trafford.com/robots/02-0497.html http://www.trafford.com/ > > Hello, > > I have a really hard question to ask, especially since so many members > seem to be newly diagnosed parents. My 18 (almost 19 ) yr old has had a rapid > decline in lung function these past 2 years, his FEV 1 is 39. (That's his > new baseline) I was wondering if anyone has ever had a significant rise in lung > function after bottoming out in this number range. I guess I've always been > an optimistic person, and I can only hope that the inevitable is not really > happening to my son. He has pleuresy so bad that he is on morphine during > hospital stays. He used to only use O2 at night, but is now relying on it pretty > much 24-7. After going through the entire evaluation process for a lung > transplant, he has decided it really isn't what he wants to do. His life has been > reduced to the hospital just about every 2 weeks, although we are now pushing > for home health, since there isn't much they can do in the hospital that > can't be done at home. And at least we don't have to " put up with " the > inconvienence of having roommates! ( I don't remember who posted it just > recently, but they were right, it's usually not the child that was the nusiance, > but the rest of the family!!) > Ok, I'm rambling now, so if anyone has had any experiance with where we're > at in this & %#@!!!! diseade, I'd love to hear about it! Thanks! > Jacki...mom to a wonderful 18 yr old cf'er Joanne M. Schum Cystic Fibrosis Bi-lateral Lung Transplant Recipient September 12, 1997 University of North Carolina Hospitals Chapel Hill Residence: Upstate New York email: luckylungsforjo@... Manager of: Transplant Support - Lung, Heart/Lung, Heart http://groups.msn.com/TransplantSupportLungHeartLungHeart " Taking Flight - Inspirational Stories of Lung Transplantation " Compiled by Joanne Schum Authored by lung recipients around the world http://www.trafford.com/robots/02-0497.html http://www.trafford.com/ Quote Link to comment Share on other sites More sharing options...
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