Transplant News Again

[MikeD]

Well, I *almost* snagged another pancreas today.

I got a call on Christmas eve for a pancreas offer but was out of town
with my phone turned off and didn't respond within the allotted hour so
I missed out on that one. Turns out it was in bad shape so no one got it.

Then, on Christmas day I got another call but was fourth on the list
behind three kidney/pancreas recipients and still out of town so I
didn't rush to the hospital. I joked with the transplant co-ordinator
that I would wait for her call the next day. She said "Well, it is the
busy season."

Today, at 2:30 am, I got another call. I was primary. I went to the
hospital, got an IV and started doing what I always do in the hospital:
wait. I got a chest X-ray and an EKG. Then came the nurse holding a
phone. I said it's never good news when they come in holding the phone.
It wasn't, the pancreas had a hematoma, which I think is a bruise, and
couldn't be used. The transplant co-ordinator was really upset that she
had to tell me this bad news a second time. I just laughed and said "Oh
no, not again!" She sounded like she was going to cry. She explained a
bunch of stuff about how this is fairly common with pancreases and
reminded me that I was obviously at the top of the list.

There was another guy there in a different room waiting for a kidney
from the same donor and we think he was OK and probably is getting the
transplant right now.

Interestingly, my nurse was really nice. I could just tell something
about her. We talked about how she had two jobs and how important it
was to save for retirement. She never mentioned kids or asked my wife
how many she had. Finally I just outright asked her if she had any
kids. She said "Only my dog Jack." Then we talked alot about all the trips we took and how we made special
accomodations for our dogs.

I am really tired.

Mike D.

[Meadbh]

Bummer! It must be awful to have your hopes raised and dashed to many times, MikeD. I hope 2007 is a better year for you.

[Rich_in_Tampa]

Originally Posted by Meadbh

Bummer! It must be awful to have your hopes raised and dashed to many times, MikeD. I hope 2007 is a better year for you.

What Meadbh said. Thanks for keeping us current. Pretty safe assumption that we're all pulling for you.

[Tracy42]

Where are you listed? My husband is currently listed for a kidney/pancreas at the U of Wisconsin (4th on list). He had his 1st transplant in 1995 (K/P). The pancreas worked about a year. He had that one done a the U of Chicago, then got on the pancreas only transplant list there and we had a couple similar close calls, but, I think they must have suspended their program (and didn't tell us, by the way!) So nothing happened for quite awhile. Meanwhile his kidney function started to decline, so we elected to wait until that got bad enough that he would need a 2nd kidney transplant, then go for the double transplant again.

We finally re-listed in April of this year, and he has moved up from 9 to 4. Should happen in 2007 for us as well.

We are 8 hours by car from the U of Wisconsin, so we are looking at chartering a plane when our call comes. I think it has just hit me in the last few weeks that this is really goingg to happen for us again--and soon.

He did REALLY well when insulin free. I don't think either of us really appreciated how much of an impact diabetes had on his personality before he was insulin free. We never found out what caused the rejection of the pancreas but not the kidney. 12 years later, I know they have made some good advancements with immunosuppressive therapy. I wish you the best of luck!

[MikeD]

It's not really a bummer or an ordeal. It's sorta like something good didn't happen. Like not winning the lottery. I am at the top of the list so I will be getting another call soon. Lemme tell ya, having a working pancreas is a wonderful thing. You non diabetics don't know how lucky you are!

I am on the pancreas transplant list at Faifax Hospital in Northern Virginia. I, too, has a K/P transplant but in '96. My pancreas lasted 8.5 good years. Apparently they are fragile organs. The transplant surgeon told me they expect them to last 12 to 15 years but mine only lasted 8.5. He was unfazed.

The waiting time for just a kidney transplant is something like 6 years but the time for a K/P transplant is less than a year so I would try the double transplant route if I were you.

Being far away from the transplant hospital is less of a concern than it used to be back in the '90s. They seem to give a lot more notice now.
Have you made the plans to charter a plan in advance. Most transplant opportunities seem to come in the middle of the night and the charter place might not answer their phone at 3:15 am!

Good luck to you.

Mike D.

[Tracy42]

Good point about no one there to answer the phone...He's just getting around now to getting the particulars lined up. It seemed pretty distant before, but it can move fast once you get to # 4. The last time around, we were in a whole different place in our lives and had the flexibility (and insurance benefits!) for him to move to Chicago when he got to be # 2 on the list. The call came and he drove across town that time.

Have you had any issues with skin cancers due to the immunosuppressives? He's probably had 40 + of them. Many they were able to freeze off, but 15 or more have been surgically removed. He had a misspent youth as a lifeguard--no sunscreen of course. Shoot, that was when we were still mixing iodine with baby oil and frying ourselves (girls, anyway).

I'll tell him about your 8.5 years! That seems like a dream come true about now.