Re: Transplant Recipient Death in UK

[Guest guest]

Steve -- wishing you the best with being activated on the list

thanks for the article -- yes the docs do warn us about all sorts of complications with transplant

it can be a difficult choice -- what are the alternatives? what are the risks?

i went through all of this last year

"The tumor's growth was accelerated by the immuno-suppressive drugs Millington was taking to prevent his body rejecting the transplanted lungs, the inquest heard. " per article

I knew a lady from rehab who had 3 great years post transplant. She was an inspiration to me -- in fact i spoke to her before making my decision

After her death, her husband told me about the immunos and the growth of the tumors.

He did say that if she had to do it all over again, she would, because she had an improved quality of life for three years.

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Transplant Recipient Death in UKTo: Breathe-Support Date: Monday, October 12, 2009, 10:13 PM

A FaceBook friend of mine who grew up across the street from me posted the following link on my "Wall" today. Thought it would be of interest to the folks on this support group. It reports on the death of a UK war veteran who had a double lung transplant and then died after developing lung cancer post-transplant. After investigating, they found that he had received the lungs of a heavy smoker - someone who had smoked 50+ cigarettes a day!!! For what it's worth, the use of donor lungs from smokers was discussed in the monthly support group at Brigham and Women's Lung Transplant Program. The transplant surgeon said that lungs from smokers may be used, but only if there is NO significant damage to the lungs...and certainly NOT if there is any evidence at all of cancer. As I remember the conversation, it was also said that the recipient was told and had the option to not accept the lung/lungs.As someone who is now less than 48 hours from

his appointment at Brigham & Women's, where he may be activated on the list...it certainly caught my attention!http://www.cnn. com/2009/ HEALTH/10/ 12/soldier. lung.cancer. transplant/ index.htmlSteve aka...Knip UIP/IPF 9/07 VATS 12/0757 Plymouth, NH, USA

[Guest guest]

MB/Steve

I think that also speaks to the entire issue of matching and quality of

lungs. It has traditionally been looser in Europe than in the US. But it

also varies by US facility. I do not think most if any would use lungs

of a current smoker. However, saying it must be someone who never smoked

excludes a tremendous portion of the population. How long ago? How much?

Ultimately, they may not even know the answers to those questions. It

also brings us to the issue of allowing recipients to choose if they

want to take a chance on less that perfect matches.

Which is worse? A difference in one antibody or the fact its a 30 year

old who smoked half a pack a day? Maybe it even matters who the

recipient is. For instance, I'm 60 (well, close enough). A 30 year old

moderate smoker with no visible damage would at least expect their lung

issues not to manifest until 50 or so. Also, by then much of the damage

of smoking has reversed. So, if I got their lungs does that mean i'd

likely not be impacted by their smoking until 80 and then only a very

small percentage of the time?

I do think in the US they are very careful in the matching process. In

fact, I would think they tend to err more on the side of conservatism

than being too loose. But fact remains most of us don't know what caused

our lung disease and it wasn't apparent 10-15 years ago. So, we really

can't know all exposures of lung donors. Maybe we would have looked like

good donors at one time. All the doctors can know is the condition of

the lungs at the present and any other direct information they are

supplied that might be overriding.

>

> Steve,

> You're right this is most disturbing. I guess I just kind of assumed

(naively in retrospect) that lungs would not be taken from a donor who

was a smoker. My question for the doctor who said they would " certainly

NOT " take lungs if there were any sign of cancer. It's likely pretty

safe to assume that the surgeons in the UK would have said the same

thing. The problem is the damage from smoking isn't always visible.

That's why I find this so disturbing.

>

> Much food for thought here huh? Good luck with your appointment.

Please let us know how it goes. I look forward to knowing you are

listed!

>

> Beth

> Moderator

> Fibrotic NSIP 06/06 Dermatomyositis 11/08

>

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> ________________________________

> From: s_knip51 sknipstein@...

> To: Breathe-Support

> Sent: Mon, October 12, 2009 10:13:27 PM

> Subject: Transplant Recipient Death in UK

>

>

> A FaceBook friend of mine who grew up across the street from me posted

the following link on my " Wall " today. Thought it would be of interest

to the folks on this support group. It reports on the death of a UK war

veteran who had a double lung transplant and then died after developing

lung cancer post-transplant. After investigating, they found that he had

received the lungs of a heavy smoker - someone who had smoked 50+

cigarettes a day!!!

>

> For what it's worth, the use of donor lungs from smokers was discussed

in the monthly support group at Brigham and Women's Lung Transplant

Program. The transplant surgeon said that lungs from smokers may be

used, but only if there is NO significant damage to the lungs...and

certainly NOT if there is any evidence at all of cancer. As I remember

the conversation, it was also said that the recipient was told and had

the option to not accept the lung/lungs.

>

> As someone who is now less than 48 hours from his appointment at

Brigham & Women's, where he may be activated on the list...it certainly

caught my attention!

>

> http://www.cnn. com/2009/ HEALTH/10/ 12/soldier. lung.cancer.

transplant/ index.html

>

> Steve aka...Knip UIP/IPF 9/07 VATS 12/07

> 57 Plymouth, NH, USA

>