Lung Transplants

[anonymous]

Hi. I was wondering if those of you who have been through a transplant can tell me about it? I want to know all the little details, like what it feels like to have that tube down your throat after surgery (can you talk, does it hurt or feel awful?), how long it takes to eat and walk and exercise, when you can finally "feel" your new lungs, how long you need home nursing for, how your life changes? I'm not at the transplant point yet. My Fev1 lingers in the 40's and it's the worst b/c I'm not sick enough for a transplant, yet I'm totally tight and congested.Also, can anyone tell me how long a transplant is good for? Say you do well, how long is your life expectancy? Does it make a difference if your lungs are from a live donor?Thanks for all the info.

 

[RadChevy]

Hi, Great questions!! I had a lung tx over 6 years ago, and my sister had her tx 3 years ago. So I have been on both sides, the receiving end and being a caretaker for someone. Both difficult roles!Also I have a web site you might want to check out that is called Transplant Support - Lung, Heart/Lung, Heart that has many resources, stories from people who had a tx, pre and post tx hints, etc. In fact tonite - December 10th, at 9:00pm EST we are having a special chat session devoted to CF!!1 You might like to attend. Here is the web site address: http://groups.msn.com/TransplantSupportLungHeartLungHeartI will try to answer your questions as best I can, but please feel free to email me directly with your questions too. My email is luckylungsforjo@aol.comWhen you have the vent in, you are on meds - pain killers, and amnesia meds. You will not remember this time post tx, and if you do remember, you probably have it slightly mixed up. From what I can "remember" the vent was not a big deal. It was my biggest fear, but it turned out to be that--- a fear, unfounded--. I did not choke or gag like I thought. Can you talk with it? No. You resort to writing boards, alphabets, pointing, and in my case getting mad when people could not understand what I wanted.. how dare they not understand someone who is drugged silly and knows what they want!!!! LOL People vary on time that they have the vent. Some come out of surgery with it already removed, others may take a few days. As to your progress in eating and walking and exercise. That will depend on the progress, but I guarantee you they will have you out of bed FAST!!! I was up the next day, with the vent attached. They do not want you laying around and you will probably protest they want you up. They will have exercising within days, slowly, but exercise. Feel your new lungs... not sure what you mean by that. The support you will need post tx will be dictated on your progress and also the rules of the center. Most centers require you not drive for a certain period and that you cannot be lifting heavy items, so you are going to need help for at least 6 weeks. How does life change? Anyway you want it. New ambitions, dreams, adventures are all there for you. I have done more in 6 years than I have in my entire life.What CF therapies are you doing now? Azithromycin, chest physiotherapy, TOBI, Pulmozmye, Colistin, exercise? All of those help you clear your lungs and make you feel just a little better. I think it is great you are asking about tx at this early stage. It gets your mind ready and easier to accept when the doc says lung transplant to you.Lung transplants at this point are said to be good for about 5-7 years. The stats say 5 years out, 50% are still alive. This varies with center and lung illness, as they all experience different success rates. But I know many people who are over 10 years out and doing great. But yes, people do die. Just like life. But there are scientists working daiily to find new drugs, ways to improve and that is how you will benefit by not needing a tx today.Living lung lobar tx success is about the same as cadeveric. I am not definite on the stats of them as of today. At first they were saying they did better, last I read they said they are even in success. Living lobar has been around since 1990 so the stats are still coming in. Lung tx has been around successfully since 1987 and I have a friend who had his tx in 1987.Hope this helpsJoanne Schumluckylungsforjo@aol.com

 

[anonymous]

This may be a silly question, but when you have a lung transplant, does that automatically mean a heart-lung transplant? I always thought that a lung transplant was simply that, but other people have told me no!

 

[RadChevy]

For those with CF, the majority have a double lung transplant. There are a few who get heart/lung, due to some obvious damage to the heart. There are people waiting for heart transplant and they don't want to "waste" an organ if possible. There is domino transplant where someone who gets a heart/lung transplant, whos heart is fine, that heart is then given to a person needing a heart tx. I don't think this is performed very often anymore.When lung tx first began, it was heart and lungs. The connections were so great and just easier to do the "block". However in the United Kingdom there are still some tx centers who do heart/lung for those with CF.Hope that helps.Joanne Schumluckylungsforjo@aol.com

 

[anonymous]

I had a transplant in Nov 2000. I know what you are going through. There are so many questions in your mind. And I had the same ones. The life expectancy is less than 50% at the 5 year mark. My theory is I would rather live five years of breathing well than 5 years of hardly breathing at all. But that is me. Transplantation is a choice for each individual. The hardest part I found, was the emotional toll I paid. Physically it was trying but you just have to think that soon the pain will subside and the living will begin. Because if you are like I was, you are to the point were breathing is a real hard job and doing alot of the things you enjoyed in life is difficult. There are alot of other small things to overcome. The frequent blood draws, I have had some slight kidney problems. The possibility of rejection is always in the back of your mind. But for me it was worth it. The main thing is taking care of yourself. I had a friend who underwent the same thing and he was faced with alot of emotional problems that got in the way of him living healthy wich took it's toll and ultimately ended his young life. So you cant let things get in the way of doing what you need to do to stay healthy. The breathing tube well it's not fun. But it is not that terrible. You cant talk with it in. But if everything goes well it will be out very soon. Mine was out in a matter of hours. Well good luck to you hope everything works out . Live well and stay well.