re: Living Donor death aprox .15 to .2% i.e. 1.5 to 2 deaths/1000

[Guest guest]

I'll unlurk to comment on this very worthy topic of discussion, and then

likely go back to lurk mode (life is CRAZY right now, sorry!).

Trotter is nothing short of a brilliant, brilliant guy, & I sit up & pay

attention to anything with his name affixed. LOL, we've actually never met

him (!), BUT he/Colorado is who/where we were initially referred, by Jim's

local hepatologist, who we trust implicitly (who had recently been there),

so bowled-over impressed was he by Trotter, Trotter's gang, Colorado's

facilities, everything. We actually initiated the Living Donor Liver

Transplant evaluation process & they were QUICK to set it up...

however...

....well, it's in our group archives, but the ( Harvey " rest of the

story " ) is that our then-insurance, California Blue Cross, put the brakes on

us leaving California (aargh!) We of course contemplated launching an

appeal, but Jim was so darned sick at the time, time was of the essence

(don't you just hate bureaucracy sometimes?!). So we formulated a Plan B:

find what we, Jim & I personally, considered " the best place " in CA for

adult-to-adult right lobe hepatectomy. We contacted EVERY transplant center

in California. Based on # of surgeries notched on their surgical belt, we

opted for USC in Los Angeles, who had done far & above more than any other

CA tx center ( & yet, Jim & were only their 36th such surgery! In a

word, EGADS!). Of course, had Jim been a pediatric case, we'd have opted

for UCLA, without question -- based on our same criteria, we decided, back

at the time, they were " the best " for adult-to-child hepatectomy.

Along the way (in our process), we learned the value in opting, if possible,

toward transplant centers/surgeons with as much " experience " as possible...

opting " away " from just-becoming-established LDLTx programs. Which brings

me to my next point:

I really have to wonder, upon reading Von's posting of the article below,

how MUCH of this anecdotal stuff (okay, okay! Comprehensive medical

survery!) regarding 19 donor deaths, plus 1 in a chronic vegetative state

may have come from " fledgling " or " semi-new " LRLTx programs? I'd like to

propose that if some info DID, then THAT would definitely skew these stats

(IMHO). For instance, a tx center here in San Diego (we're talking a time

juuussstttt prior to MELD becoming official) was attempting to launch their

(adult-to-adult) living donor liver transplant program... & they spent

significant time & effort carefully selecting the " Great & Powerful Oz, Top

Gun " surgeon (to mix my film metaphors!) as head. This guy, in turn, spent

a huge chunk of time selecting a candidate for his " 1st " such surgery at

this tx center... someone who, along w/their living donor, would be a

slam-dunk surgical success. Anyhoo, in Jim's eval process, I asked this guy

how many such adult-to-adult LDLTx surgeries he'd actually performed to

date... he shocked me when he answered eleven. 11?!? Okay, it was a rare

surgery back then (it's STILL far from a run-of-the-mill surgery). But

11?!?

Finally, he chose the " perfect " candidate & living donor, who happened to be

sisters (YOUNG sisters). Side note: I pulled strings & got people to

arrange, behind-the-scenes, for (for those new in the group reading

this, is my husband Jim's donor, our now 29 y.o. son) to speak w/the

donor, in MY effort for to make a fully-informed medical decision.

So, what happened? According to inside sources, what " should " have been a

straightforward LDLTx surgery " scared the crap " out of them (the medical

people, the hospital administrators) when things took 22 hours. 22 hours!

The hospital bureaucrats then immediately pulled the plug on their program.

Not long after, I was told (as Jim's advocate) we should pursue his LDLTx

elsewhere, if we wanted our best shot at saving Jim... as he'd likely die

waiting for cadaveric surgery at that particular hospital, given his

particular blood type, how many were listed above him, etctera.

So, high-volume tx centers w/surgeons boasting beaucoup adult-to-adult LDLTx

experience... this bodes better, in our opinion.

Maureen (wife of Jim: UC & elevated LFTs '84; PSC '96; LRLTx # 36 on 12/7/01

at USC in CA; donor son doing well; post-tx incisional hernia surgical

repair 1/03; multiple post-tx skin cancer issues presenting 18 months out;

sporadic post-tx UC issues -- which means Jim sees his dermatologist every

90 days & undergoes colonoscopy every 24 weeks; in a new learning curve for

possible future colectomy?); ecstatic empty nesters & delighted doters to

grandsons Stryder & Indiana... who'll get a baby SISTER this Thanksgiving!)

-----Original Message-----

From: [mailto: ] On

Behalf Of jumputah; Sent: Monday, September 24, 2007 8:15 PM

To:

Living Donor death aprox .15 to .2% i.e. 1.5 to 2 deaths/1000

The most comprehensive article I've seen is below. It was sobering to

read the cause of death of each of the 13 donors identified in the

article. Documented deaths of hepatic lobe donors for living donor liver

transplantation. Liver Transpl. 2006; 12(10):1485-8 (ISSN: 1527-6465)

below is a copy of the first part of the article.

Trotter JF; Adam R; Lo CM; Kenison J

University of Colorado Health Sciences Center, Denver, CO 80262, USA.

james.trotter@...

The actual risk of death in hepatic lobe donors for living donor

liver transplantation (LDLT) is unknown because of the lack of a

comprehensive database. In the absence of a definitive estimate of

the risk of donor death, the medical literature has become replete

with anecdotal reports of donor deaths, many of which cannot be

substantiated. Because donor death is one of the most important

outcomes of LDLT, we performed a comprehensive survey of the medical

and lay literature to provide a referenced source of worldwide donor

deaths. We reviewed all published articles from the medical

literature on LDLT and searched the lay literature for donor deaths

from 1989 to February 2006. We classified each death

as " definitely, " " possibly, " or " unlikely " related to donor surgery.

We identified 19 donor deaths (and one additional donor in a chronic

vegetative state). Thirteen deaths and the vegetative donor

were " definitely, " 2 were " possibly, " and 4 were " unlikely " related

to donor surgery. The estimated rate of donor death " definitely "

related to donor surgery is 0.15%. The rate of donor death which

is " definitely " or " possibly " related to the donor surgery is 0.20%.