Re: Barbara UK

[Guest guest]

to all these responses you've been gathering, barbara, and after reading one point darin made to you ("...they even gave my wife a hard time when she had to leave early due to a meeting at work..."), i would add (from jim's and my evaluation experience at two different tx centers) that your ability to KEEP appointments (as in not canceling or forgetting them) and your ability to be ON TIME for your appointments both factor into your evaluation as well... not greatly, but to a slight degree they certainly can. people don't always give this a thought, but i was informed (on the QT) by one of the appointment schedulers that it is indeed quite true, at least at that particular hospital!

ironic -- it's perfectly acceptable for the doctors/hospital to keep you waiting, sometimes for horrible lengths of time, or for someone at the hospital to call you up at the last minute to cancel/reschedule your appointment... but YOU are expected to always be at the right place at the right time. okay, so go ahead and call this "jumping through the hoops." and yes, to an extent, precious organs do seem to go to people who are able to successfully jump through hoops... e.g., people who (to quote steve) pass the "wallet biopsy," people who can boast an adequate support system, people who come across to the right people as being a good risk, are compliant, etc.

in our particular case, the psychologists, social workers, transplant coordinators, doctors, etc, all came across at the end as being VERY enthusiastic to recommend jim for transplant... in their words, we (as in jim, yours truly and our children) were an intact family... jim and i were high school sweethearts married over 25 years, with 3 children, and it was extremely rare that they would encounter such a patient... very frequently we heard comments from the "Almighty Decision Makers" about how they wished they had more candidates like jim... (really? as opposed to what? meaning a single, divorced or widowed person can't have the same kind of support system in place? i thought these rhetorical questions to myself, but just kept my mouth shut and smiled. at that point, after 3 months' worth of various tx evaluation appointments, i was pretty good at Playing The Game).

post-tx drugs were discussed, and i remember feeling horrified at the amount of steroids jim would have to experience. remember, i'm an asthmatic, and i know steroids very well... but steroids to halt any possibility of organ rejection is another matter entirely!

also discussed was the possibility of a blood drive to benefit jim. autologous blood donation wasn't possible, since jim was extremely anemic and couldn't put his own blood up for himself. we had the option, however, of our daughters, many of our friends, certain relatives, even myself donating blood on jim's behalf. (side note -- i found out the costs for processing this donated blood would be quite expensive and not covered by insurance -- as "regular" blood would be, if that ended up being a necessity -- so don't assume a blood drive would necessarily be the cheapest way to go... it may not be!) also, i found out from our san diego blood bank that if it turns out you CAN actually go the autologous blood donation route (and put up your own blood for yourself, prior to your surgery) ...and you end up NOT needing it... then the blood ends up going to waste!

as it turned out that the tx center we chose to go with prided themselves in bloodless liver transplantation (using a cell cept device which captured/processed/returned blood back into the body, thus minimizing blood loss), we didn't think this would be as much of an issue for jim, so we opted to not pursue a blood drive (our decision was affirmed when we found out only regular transfusions would be covered by insurance!). in all liver transplants at our tx center, they boasted there was only one man who ended up needing a transfusion. well, folks, jim was their second... his blood was in very bad shape going in. later we were told if they had to do it over again, they would have considered having jim build up his blood supply prior to the surgery. not only did jim need to be transfused during the surgery, he needed transfusing afterwards as well. despite jim holding the record as needing the most blood for a liver tx at this tx center, nevertheless, he didn't end up needing anywhere NEAR the massive amounts of units i've heard others describe. so cell-cept is definitely the way to go. so make sure you specifically ask if your tx center uses one!

darin wasn't kidding about out-of-pocket costs that insurance companies don't necessarily reimburse... jim's insurance policy had *just* changed over to covering living accommodations 200 miles away from home, to greater than 250 miles away. so we *just* missed out on our hotel bill being partially covered by insurance (*sigh*), which means we went out-of-pocket thousands of dollars for our hotel room alone. food was extra, but we brought as much food as possible from our house up to los angeles and tried to do most of our own cooking. we were exceptionally blessed later, when jim's mom insisted on paying our hotel bill.

darin mentioned post-tx costs for meds, etc. jim's chemical cocktail upon hospital discharge ran close to $1,700/month, street value (meaning without insurance)... fortunately we have an excellent drug plan, so it ran us a very small fraction of that amount. then later, doses of certain drugs would lessen (or be eliminated altogether), further lessening the amount we pay each month to our pharmacy.

keep your questions coming -- it may all be a very different experience for you in the UK, but i am sure this back-and-forth stuff is an education for those wanting/needing the information.

maureen (wife of jim: UC '84; "small-duct" unstentable PSC '96; LRLTx 12/7/01, thanks to our living donor [right lobe hepatectomy] son, jason, now 24)