Update Month 2

[Guest guest]

Well, it's been two months now since 's liver transplant. Those who

said it would be a roller coaster ride were right. At least the roller

coaster us going up right now.

The past 3 weeks were spent fighting rejection, which turned out to be

steroid-resistant. The thymoglobulin seems to have worked, and the strange

side effects are subsiding. The doctor told that her immune system

would stay extra-supressed for about 6 weeks. So she is mainly trying to

stay away from possible infection sources, such as people.

spent Thanksgiving in the hospital (she was there as either inpatient

or outpatient for about 15 days in a row). Actually this was not so bad,

since the hospital actually had heat. This is more than I can say for our

house, where the furnace died the night before Thanksgiving. I got a new

furnace installed a few days later, and for a few days stayed at her

parents' house mainly to stay away from the dirt and dust. This was during

the period where she was extremely sensitive to light, so mainly she just

stayed in a dark room with sunglasses on.

Another interesting moment came one night when ran out of Neoral (it's

a long story why). Fortunately there is a 24 hour pharmacy in town and the

coordinator called in the refill prescription at about 11:00 PM.

Anyway, things are better now. She feels pretty good and still goes for a 1

to 2 mile walk every day. I don't know when she is going back to work. I

don't think she has the endurance to work a full day yet. Another person

who works in her building had a liver transplant and went back to work after

two months. Then they went into rejection or some other complication and

missed 3 more months.

I used to think it unusual when people like Jim Gleason talk about daily

encounters with transplant patients and donor families, but not any more. I

seem to run into them a lot. The man that came to fix the furnace noticed

all the drugs lying around the house and started talking about his wife who

had a liver transplant in April. Actually she had two. Unfortunately she

did not survive due to some complications. She went to the Mayo clinic.

The furnace man said that while he was there he met Walter Payton and I

think he said he saw King Hussein.

Of course the most frequent encounters with transplant patients are at the

clinic where goes for blood tests and such. They have had a lot of

donors in recent weeks and have done a lot more transplants than normal. I

think two livers in one day recently. Many of the medical people,

especially the surgeons, appear to work 7 days a week, and sometimes 24

hours a day. They seem very dedicated to their work.

Monday while waiting for the blood tests, we were talking with 3 women who

were just transplanted recently; two kidney patients and one liver patient.

The liver patient decided to show the kidney patients her incision, in the

middle of the waiting room. I think everyone was still hyper from the

Prednisone. The liver patient said she had to stay in the hospital for 13

days because she had a seizure problem that started around day 6. I guess

that was a side effect of the medications (?).

They have a support group for patients waiting for transplants. The leader

of the support group has had talk to some patients to tell them what

it was like to get a transplant.

All in all I'd say it's been pretty interesting and pretty stressful.

Thanks to everyone for advice, information, cards, prayers, and messages of

all kinds. The transplant coordinators say that once most patients get past

6 months, they have pretty smooth sailing after that. Hope they are right.

Thanks, Roy T.