Update Week 2

[Guest guest]

is still doing well after two weeks. She went back to the transplant

center for her scheduled maintenance which I guess they are going to do

weekly for a while. She gets blood tests done twice a week.

In the waiting room met a couple of other transplant patients,

including a kidney recipient who was transplanted the same day, maybe from

the same donor (?). He seemed to be doing really well. He was from a

different state and was staying in his RV parked a few miles from the

hospital. He is planning to stick around for another month or so before

moving on.

The transplant center people are pretty happy with most of her blood test

results. Still tweaking the medications. Her bilirubin is still a little

high (2.1) but all the other liver function tests are very good. Kidney

function is very good. They put her back on actigall to see if that will

help the bilirubin. I think that gets her medications count up to 11 or 12.

They have already tapered the prednisone down to 10 mg per day which is

probably a low enough dose to avoid a lot of side effects. They expect that

she will be off it in 3 months. If all goes as planned the only liftetime

drug might be the Neoral.

Earlier this week she was getting the gancyclovir by IV at home twice a day,

but the IV line in her arm was causing some problems. So after a few days

they just took it out and told her to switch to the pill version, which was

the plan anyway for after two weeks.

The surgeon took out some stitches and a few of the staples today but left

most of the rest in. I think the total staple count was about 54.

Got a ton of cards in the mail including several from members of the

internet group (thanks!). We have also had many food donations so we are

eating quite well.

Today the hospital bill arrived. It was 6 figures. Fortunately I think

insurance will pay for most of it

wrote a short note to the donor family and gave it to the transplant

coordinator for delivery via the OPO.

I have been able to go to work most of this week. Other people have offered

to come stay with at home for some of the day. 13 year old daughter

Elaine is helping out also, but of course she has to go to school and has a

lot of other activities.

One of the people at work came by my desk this week and signed his organ

donor card (actually his driver's license) and had me witness it.

feels pretty good but is just tired and sore, especially her back.

They want her to walk, which she is doing some....walked about a half of a

round trip around the block tonight.

So all in all I'd say things are going very well.

Thanks again to everyone for your interest and support.

Roy T.