Organ Transplants Support Group

It is overwhelming. My mother had a liver transplant. I can kind of give you an idea from that experience. In most cases you are in the ICU afterwards. Most patients do not remember the ICU. It is harder for the family. You will be disoriented. ICU can last from several days to over a week depending on your recovery. My mother was in for about 5 days. After she was put in a regular unit where other transplant patients were located. After a day or two she was up and about talking to other patients. They thought she was the welcoming committee ha ha. Others took longer to recover. Some had crazy dilusions(which is normal so don't panick). I will not tell you it is not hard. It is. I will tell you it is worth it. The more positive thoughts you have and the more you keep working while in the hospital the faster you will recover. If you do have a complication, don't worry remember it is just a bump in the road and you will get through it. Good luck. I hope and pray you will get your transplant sooner than later. *hugs*

Thank you so much for talking to me. I have been so nervous and it helps being able to talk to people that have been through it and seen it first hand. All my family and friends always tell me "Oh everything will be fine, You have nothing to worry about your in good hands." I just look at them and say "how do you know that." So it really helps me talking to all of you. THANK YOU!!!

My husband had a double lung tx July 06 he is not doing well; but his condition is a rare one to start with. We know a lady who had the same illness as you and she got her tx in May 06 and she is doing great. No real problems. The best advice we have heard is "The people you meet who are a long time out, are the exception and not the rule" Lung transplant is not like any other type of transplant. You can not compare any other type with Lungs. I will give you honest answers if you want them. No one really knows who will do good or bad. I can tell tell that over 50% of those we know that got transplants in 2006 lived less than a year. Don't get discouraged. The lady who had your problem is doing great. I can give you her email address if you are interested and she agrees. Get in shape and go to a good transplant hospital. We were at Duke. Being phsyically fit helps. Duke often requires pre-transplant that you be in a rehab or exercise program--so that you will be in the best shape possible before transplant.

My husband had a double lung tx July 06 he is not doing well; but his condition is a rare one to start with. We know a lady who had the same illness as you and she got her tx in May 06 and she is doing great. No real problems. The best advice we have heard is "The people you meet who are a long time out, are the exception and not the rule" Lung transplant is not like any other type of transplant. You can not compare any other type with Lungs. I will give you honest answers if you want them. No one really knows who will do good or bad. I can tell tell that over 50% of those we know that got transplants in 2006 lived less than a year. Don't get discouraged. The lady who had your problem is doing great. I can give you her email address if you are interested and she agrees. Get in shape and go to a good transplant hospital. We were at Duke. Being phsyically fit helps. Duke often requires pre-transplant that you be in a rehab or exercise program--so that you will be in the best shape possible before transplant.

From what I've heard here lung transplant doesn't sound like the best option unless there is no other way forward. I really hope it works for you Summerbell. My dr has asked me if I want to go on the list but I'm not on oxygen and although I spend many hours a day on treatment, I still get to do quite a lot in my life. Maybe it's a bit premature.

Summerbell, We meet a lady at Duke in 2006 who had the same problem. She got her lungs and is doing great. She got the lungs and has not looked back. She is a great inspiration. The choice is yours. What do you have to lose? My husband is fixing to celebrate his 3rd birthday of his new lungs. He has experienced a rough road; but his problems were different. May God grant you the wisdom to make the right decision.
Susan

I must admit that my experience was better then I expected. Don't get me wrong there were some tough...real tough times. I was not scared going in as I felt I was in God's hands and he knew what was best for me, plus I needed to trust the surgeons. If I didn't trust them, I shouldn't be there. I had a harder time dealing with the gift I was receiving, as my liver was a direct donation from a family member. Excited and greiving at the same time.

My hardest days were the first 3 after I got out of ICU. Probably since I don't remember much of ICU except my head was the clearest it had been in many years. (Due to encephalopathy)

I do think it was harder on my family, as they sat around the hospital and waited. The stress of caring for me during the years I was sick, during the surgery, at the hospital, and those first weeks at home. I say "Thank You" alot.

Know you are not alone.

I received my double lung transplant earlier this year and am doing great. Of course it is overwhelming and scary but when you come to the point of needing a transplant it is because it is the only option left. It is not easy, but well worth it. I am now 5 months out of transplant and although I have had some bumps in the road, I would not change my decision to go through with this for anything. As far as waking up after surgery, there is nothing to be scared of. This is your chance at a new life. I suggest you go for it. Just think of taking your first breath of air on your own. A new life is waiting for you!