Transplant question for a friend

[serendipity730]

Hi all!
I have a friend who isn't doing well, but his dr said he wasn't a transplant candidate. His FEV1 hovers in the upper 20's, he does not grow cepacia, and had no other complicating factors I know of. So, I guess I am asking are there other criteria I don't know about? Is it a jugdement call on the part of the Dr.?

 

[JennifersHope]

I don't know for sure but I do know that they take the whole bodys general health into consideration.... So maybe they don't think that they will survive transplant... I know if your bones are shot.. osteoporosis can be a red flag in transplant if it is combined with other diseases...I also know some hospitals won't transplant if you culture MRSA... etc....

To me though... if someone is not going to live without a transplant.. I can't see why they would not be willing to take the chance and do it.. I know it is a fine line and that they want to be sure since their is such a lack of organs available that they give it to someone who has a decent chance of survival...

 

[JazzysMom]

Your weight is a major factor & because of the different meds required after tx if you are having any liver or kidney problems that would be a red flag since the tx meds would be an additional burden to those organs. My understanding of the process itself also considers your mental/emiotional health. Of course the doctors input is much also.

 

[bdchevy]

Hello,

Another issue that the transplant team considers is how complient you are with your meds and treatments you are on now. In other words , if you are not taking care of yourself now.. ie: not taking meds, aresols, etc now , would you take the meds and such after your transplant. They do not want to waste time and the lungs on a person who does not bother to take care of themselves pre or post tx.

This prob sounds harsh to some but its the truth. I have seen/ heard it in person at my center. This person was SUPPOSE to be on o2 and wasn't using it. The coordnators more or less got in their face and told her if she didn't use it and follow the centers orders they were not going to waste the time on her. After she left room , the patients husband had lil talk with her and asked her if being so vain in public was worth it now. I'm not sure how that story turned out , I hope she learned her lesson.

I'm sure there are many other criteria the tx team makes in their decisions and in some cases not always an easy one, being its a person life they are deciding on. I wouldn't want to be in their shoes at times.

Barry 44cf , tx in 1996 UPMC Pittsburgh

 

[mustangmousa]

When my doctor said I was ready for a transplant, they looked at alot of things which includes all the stuff in the previous posts. But the one major thing they asked me was how was my quality of life. If your chained to an o2 tank 24/7, can't climb stairs, can't take walks and your life just plain sucks, then ya, I think it's time. They also look at your PFT's, the number of times you are hopitalized, and your o2 requirements. I think they prefer to do transplants when your life expectancy is about 2 years. They don't want you too sick, but they don't want to transplant you too soon either. It's a fine line and even when you're really sick, you question whether or not it's time. I hope things go well for your friend.

Martha CF, 30

 

[anonymous]

Mary,

Your friend needs to seek help from another doctor.

The reason I say this.... I am not sure they are seeing a CF doctor, or is it a pulmo doc... but there are some... surprisingly CF doctors and pulmos, who THINK they know when you are a candidate, or they are personally AGAINST tx, so they say what they feel to their paitients, there by misguiding them.. .Highly unethical, but it does happen.

Also, CF doctors may think they know what qualifies you for transplant..... but they don't know all the criteria, and only a lung transplant center can make that decision. The surgeon is the final word, and no CF doctor can do that.

My suggestion... you or your friend call a lung tx center... and talk to someone about having an evaluation. They will be the ones to know the real facts. Also if there is a CF center other than where they go now, have them give an opinion.

Very few people are turned down for tx anymore.. so I can't imagine your friend not qualifying.. What did the doctor say was the deciding factor they were not a good candiate??? Get the scoop.

Let me know if I can be of help.

Joanne Schum
luckylungsforjo@aol.com

 

[kybert]

wow joanne i never thought about that. i guess when you live in such a populated place like the US there are so many docs with so many opinions. here there is only 1 doc and 1 opinion [which is a good one thankfully].