Transplant Question

[Blossom/Jackie W.]

I'm curious about something....

Why do some patients receive a single lung Tx and others a double lung?

Is it planned, or, is decided at the last minute. I.e. One of the donors lungs isn't usable perhaps?

[Deleted]

All I know is there was a man on the CI forum that had went in for a single lung TX and came out with a double lung TX, so you many be right in that it depends on the donor lungs. This man and his family were totally surprised that he had gotten a double TX.

I am sure someone that knows for sure why will be along shortly.

[wendyco]

I have heard it's because of lack of availablility of lungs...and you can dobetter on one good lung than two bad ones......

[sandy07]

There's a young man in his 20's with Cystic Fybrosis that had a lung transplant ( I think double). They were talking about him in Regina since he's my BIL's nephew. They said his lungs should last 12 - 15 yrs....which is longer than they give COPDers. I gather it's because of age?

[Blossom/Jackie W.]

But why "one" sometimes or why "two?" How do they come to that decision or when?

[wendyco]

not sure to be honest but if the donor lungs are good,the second could go to a second person......I really think it depends on need and what type of lung you need....you know,match......
WW, try asking this on CI,where several have had transplants and are always tlaking.....

[aero63]

I don't think they necessary split the donation between people. But, I may be wrong. I even forget why. My doctor said that they prefer two, but would take one if absolutely necessary. Maybe one lung is damaged if the donor was in accident. But, as to the 12 to 15 yrs is not necessarily the age factor. That is actually a very high number, from what I was told. No one knows how long the tx coulb be good for, that's why it is more for the quality of life for me.

That's all I have, but I am sure someone else has another reason that they were told. I guess it depends.

[shelley]

Based on what I was told during the transplant assessment, it is made at the time of transplant. When you go in, you may not know which is being done. It is not a matter of splitting the lungs for 2 transplants; at least not here in Ontario, not directly. However, sometimes, you get 2 that are in equal need and close to death and they may make that decision; just as you make get 2 that are in equal need and will do well with 1 each. I was told upfront that, if possible, they would do a double. Keep in mind that singles are much easier to recuperate from as they do not split the sternum among other things and there is less chance of rejection. Further, if rejected, there is still the native lung to work with. My experience with COPDers that have singles done is that longevity is about the same on the one but are candidates for a second single transplant on the native lung when the transplanted one "gives". I have a friend who is 18 years out on one and is currently listed for a 2nd transplant on his 'native' lung. CFers are whole different ball of wax; not only is their disease different but yes, they are younger, stronger and more resilient. I think we are still missing part of the equation on COPDers as we are still tending to look at the lungs as the disease where in fact the disease itself is probably more systemic than currently known. I find too that Canadian hospitals do not quite act like their American counterparts who seem to enjoy a rather rapid recovery after transplant. Here, it seems from what I've seen/heard, people spend much more time on the vent plus being in the hospital. Don't know what's good or bad on that one, it's just an observation. Transplant surgery is HUGE! And...a double is HUMONGEOUS! (sic) Think of it! They litterly split you in two (clamshell surgery), stop all natural function and put one on bypass, shove the heart to the side and replace the lungs one by one. It is quite the miracle of surgery. Needless to say recovery is not simple or short and based on what has been explained to me, one can expect the first year to be both the recovery and the hardest. Once you're past the first, it's live for each wonderful moment that you can breathe. New anti-rejection drugs are being developed and hopefully we will see many more live longer than 3-5 years post op. The post 5 year transplants are increasing in numbers but COPDers lag behind CFers on this too. However, most post ops develop diabetes or kidney disease within 3 years but it is usually manageable in one form or another as it is a result of the meds. As they say, you replace one disease with another...it's a personal and difficult choice. BTW, women do not do as well as men and there is a whole host of reasons why on that one. I'm still holding on to my natiive lungs and haven't quite decided as it's mostly up to me now whether to be listed but I encourage anyone who is given the opportunity to go for the assessment....don't close doors until it's too late to find out if you're a candidate. When you cross the curve into the less than 1L FEV1, the downward slope can be wonderfully slow or nightmarishly rapid and one has to be prepared.

[aero63]

Great input Shelley.

One thing I would like others aware of...

Cystic Fibrosis, although found mostly in young, is increasing in adults. I myself was tested for this, since it runs on my dad's side. I am not going to get into the carriers probabilties and relationships. But, I was tested for that first because it can manifest as an adult.

CF is as Shelley said, a whole different animal to deal with.

[shelley]

True Aero, I was tested for it too because when I was first diagnosed 21 years ago, I was only in my mid 30s and already with an FEV1 of less than 50%. At that time, COPD was seldom diagnosed in someone so young and when the Alpha 1 test came back negative, they were really confused! Oh well! Straight COPD - emphysema! However, there are a lot of unanswered questions, as there are for all of us.

[susanny]

Good question, Blossom, and some really great responses. Thanks everyone for your input. It is really helpful to me personally, too.

[Colleen-Pa]

I know that one of the main reasons for a double vs. a single is depending on what type of disease you have. If if is infection based they will do a double because the infection will spread from the native lung to the new one and it is basically a waste of a lung and time. They do this a lot w/ CF patients and IPF = idiopathic pulmonary fibrosis, this is a scarring of the lungs. There are many other diseases that require double.

As far as COPD goes, they base it on your over all health and age. I was told to expect a double because I was otherwise healthy and young so I would be a candidate for a double but if a single came along first I would be offered it. I was not going to be picky, single lungers do very well and live a normal life (as far as a transplant patient is concerned) so I would have been very satisfied with a single. Recovery is a bit easier for a single but lets face it, it is major surgery either way. I have not regretted a minute of my life since transplant and I have had a few bumps in the road. I had an episode of rejection last summer and I am currently trying to deal with gastric issues along with neuropathy of the feet, not fun, gets very painful and we are trying to find as drug that will make it more comfortable to walk and be on my feet for extended periods of time. But overall I am doing great and would recommend anyone with a low FEV1 to go and get tested, its worth it!!! But I also must point out that COPD patients wait longer because you can live a long time w/COPD and your fev1 usually has to be pretty low to get the call once your listed. Mine was down to about 12%. They won't put you on the list until your under 20% I believe, but DLCO is a factor also so this is why you need to be tested to see where you stand to get on the list.

[Colleen-Pa]

Also, I was on the vent less than 24 hrs. and out of ICU in 2 days. It all depends on how you do after surgery. I know of singles that were on the vent for weeks and in ICU for a month. Doesn't matter if its a single or double, all depends on how your body handles it and how sick you were @ the time of transplant. I also know of a girl that was in the hospital for 75 days, she is now 14 years out and doing well. Others came out of the hospital within 2 weeks and didn't make it a year.......everyone is different so you can't go by what happens to others. Keep a positive attitude and go for it!!!! Your mind is a very powerful tool....have to keep the negatives at a distance at all times...this is how I fought COPD and went in to transplant with all good thoughts.

[Blossom/Jackie W.]

Thanks ladies..... some really good input and info there. Makes sense.

Colleen; I wish you continued good breathing and hopefully you'll get your other health issues cleared up very soon. And; to those of you getting listed, or are listed...... we wish you all the very, very best!

[bobbioh]

Pretty much what I was told on my first visit. Great input!!! Thanks Bobbi