I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: MelissaJean on August 28, 2006, 10:44:01 PM
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Double Lung Transplant:
I received a double lung transplant in November of 2001 (I was 19). I had both my lungs transplanted (as opposed to a lobe of a lung) by a cadaver from Oregon. Just like kidney transplants you are put on a list. I think that your placement on the list is classified by severity of lung disease, time on the list, and if you match. I was on the verge of getting very sick and without the lung transplant I probably wouldn't have made it past my 21st birthday. With kidney failure you can choose, dialysis or transplant. With lungs it is death or transplant. Some people are too sick to get a transplant because they won't survive the surgery, so they don't even have that option. The average wait is 2 years. I got three calls within 3 months.
When I was transplanted my survival rate to survive the surgery was 90% (as opposed to 99% with kidneys- at least at my transplant center). After one year I believe it was 75% and after five years there is a 50-60% survival rate. In November it will be my 5th year. When your body starts to reject your lungs you have a hard time breathing go back on oxygen, and either get another transplant or die. I do not know a lot about rejection because in this scenario I believe "ignorance is bliss." Some rejection is very slow, and can be stabilized with medicine. I had rejection in 2003, but they have stabilized my rejection with Sirolomus.
As for how I feel it is a mixed bag. My transplant doctor and surgeon make it seem like getting a kidney transplant is as easy as getting my wisdom teeth pulled. I highly doubt that. Honestly, I am pretty freaked out. I am grateful that I have made it this long with my lungs, but pissed off that I am hooked up to a machine for 9 hours in order to live. I don't plan on living for a really long time, but I still have hope that I will. Mostly I take it one day at a time and don't make any long term plans.
Hope I answered the questions well enough. Don't worry about asking. When I tell people I had a lung transplant many people don't even know that doctors could do that... so I am used to answering a lot of questions. I also used to go and speak to high school students and got some pretty interesting questions there.....
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I want to say congrats on getting the double lung transplant. We with kidney failure are lucky in that there is a machine that can keep us alive while we wait for a transplant.
Did you get the diabetes from the prednisone or the CF? I know that many folks with CF eventually get diabetes. I guess it doesn't really matter how you got it. You are stuck. Do you have an insulin pump? I would highly recommend one - it makes your life so much easier.
I can understand that you resent being on dialysis - you have had a very tough road. A kidney transplant, while not a piece of cake, is most likely easier than a double lung transplant. I would imagine that they need to go through your chest wall to get those in. The new kidney goes in the front and while they do have to go through some muscle, they don't have to cut through any bone. Some people are out of the hospital one week after the surgery.
I found that my transplant was such a blessing compared to dialysis. The nice thing for you is that you are already on anti-rejection meds and don't have to worry about side effects. From what I understand, you won't need a higher dose because solid organs reject less easily than things like lungs.
If you have any questions about kidney transplant, just let us know. And good luck to you.
Cora
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I dont blame you for being pissed off. Dialysis on top of a lung transplant, well I cant even imagine what that must be like. I got ill when I was very young as well and it just really messes things up. They say its better if it happens when you are younger because you are stronger, but I think its worse. I havent even lived my life properly yet and Im 27. Hang in there, we are here for you!
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My husband is going on the list for a kidney-pancreas transplant. Supposedly the wait is shorter when you get both, though I can't really understand why. ???
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Maybe the list is shorter because there are less people on the list for both? Or maybe the placement on the list is based on different Criteria... I'll see if I can find out for you.
Melissa
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Melissa, I have a question for you. Do you have to meet the same sort of criteria for a lung transplant that you do for a kidney transplant? Vasculitis has damaged my lungs as well as my kidneys, and my doctor told me that my lungs might not be strong enough for me to get a kidney transplant. But, he didn't say anything about a lung transplant, so I don't even know if that's an option. I just wondered.
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MelissaJean, you are one strong young woman and I admire your tenacity. I have to look at it this way: None of us know when we are going to go. People young and old taken in an automobile accident and were healthy never had the opportunity to cherish their days. Well, maybe they did, but not like us. We know our days are numbered, so we count them out very slowly and with meaning. Thank you for sharing your story.
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Melissa, I have a question for you. Do you have to meet the same sort of criteria for a lung transplant that you do for a kidney transplant? Vasculitis has damaged my lungs as well as my kidneys, and my doctor told me that my lungs might not be strong enough for me to get a kidney transplant. But, he didn't say anything about a lung transplant, so I don't even know if that's an option. I just wondered.
With a lung transplant there is a small window in which you are eligible to get a transplant, you have to be healthy enough to survive the surgery, but sick enough to benefit if you die after a year or so. With kidneys you might have dialysis to help your survival while you wait for a transplant, with lungs you hope and pray you don't get too sick so that you aren't eligible any more. At least that is my understanding...
MelissaJean, you are one strong young woman and I admire your tenacity. I have to look at it this way: None of us know when we are going to go. People young and old taken in an automobile accident and were healthy never had the opportunity to cherish their days. Well, maybe they did, but not like us. We know our days are numbered, so we count them out very slowly and with meaning. Thank you for sharing your story.
Rerun,
Thanks! And a great point... that made me feel better....