My transplant story

[Guest guest]

Well, here it is such as it is... I went through and added a few things,

and edited some too. A bit of family info just so you know who I'm

talking about... My Mom is called Mala-Mala by all her grandkids, so of

course the rest of us end up calling her that too, My brothers are Toby

and . Toby is a nurse and lives in Denver, and is a filmmaker

and college teacher. is my sister, and Shadya is my wife.

I wrote this in the style of a diary, and some of it was written on the

day that it happened, or the next morning. Some (especially the first

couple days for obvious reasons) were reconstructed after the fact, but

I wrote them as if I'd written them on that day to make the style

consistent.

Anyhow, here it is....

Day T-1 Sabbath: I know I may get a call for a transplant soon, so I

decided that I wanted to be anointed today, to ask for God’s will and

work of healing. It’s hard for me to let myself hope that I’ll actually

get the call and that everything will work out, so I guess I’ve been

preparing myself to be disappointed somehow. I just want to leave that

to God and trust him to work it out. I went to church so I could be

there for the anointing, even though felt pretty sick. I was glad that I

went though… the anointing was a real encouragement, and I feel like I

can handle things better now. Or at least I can let God handle them!

Day 0 – Sunday - The Call

Well, last night was pretty rough. I was very sick, and couldn’t sleep

well at all. I just can feel in my body that I’m reaching the end of the

road if I don’t get better soon. I don’t remember the night very

distinctly but I do remember asking God to please send me a transplant

soon. This morning I got up and felt a bit better… nights are always the

hardest. It was beautiful outside and warm enough that I wasn’t too

extremely cold out there, so we went out and had worship on the front

porch before eating breakfast. When we were done with worship, we came

back in and Shadya started making some food. For a while every time the

phone has rung I’ve kind of tensed up because I knew it could be a call

for transplant, so of course when the phone rang this morning I did the

same thing. Unlike all the other times though, this was the real thing!

The person on the other end told me that they thought they had a liver

for me and that I needed to head for Vanderbilt within an hour and a

half, that I shouldn’t eat today, and that something could happen to

cancel the transplant, but that they thought that this was most likely

going to be a go from all indications.

Boy! That really got my adrenaline going. I probably wouldn’t have

gotten much done today normally, but this did kick me into gear. We

called all the appropriate people to let them know, and started loading

the car with all the stuff we’d packed for this journey. Everything just

seemed to flow like it was pre-scripted, it was almost like I was

watching a movie I’d already seen a long time before. So that although I

didn’t know exactly what was coming next it wasn’t surprising when it

actually occurred.

We quickly called a few people who needed to know and who could spread

the word while we worked on getting to Vanderbilt. Then we loaded the

car, grabbed a few last minute things, stuck the kids in the car and

were off. They gave us an hour and a half before we needed to leave, and

we took about an hour and 15 minutes, but to me it seemed like 15

minutes total! Things just seemed to move so fast.

I didn’t think I could stand to just sit for the three hour drive, so I

drove. I was feeling relatively well, mainly due to adrenaline I think,

but by the time I been driving for about two and a half hours I was

starting to feel tired, so when we stopped for gas and a potty break, I

asked Shadya to take over for me, and just a few minutes later we pulled

into the Vanderbilt parking garage.

We went to admitting to be checked in, and there was one other couple in

the admitting area. When the woman heard that I was there for a liver

transplant, she asked if she could pray with me. She said she had a

friend who had gotten a liver transplant. I agreed of course, and she

said a nice prayer, and wished me well. It was a nice welcome to the

hospital!

After being admitted, we went up to 9 south, which is where all the

transplant patients end up after transplant. It was sort of strange

because the window of the room looked out at a building with mirrored

windows, and in the mirrors we could see the helicopters taking off and

landing. Pretty soon all the family people started arriving. and

Lori and their kids got there, and so did , and Mala-Mala. I was

very glad to have them there… it helped to pass the time, which was by

now moving very slowly.

I had to shower, and get into a hospital gown. Then they started an IV,

and drew some blood. The doctors came in and talked to us. They said

that some of the surgeons were in the air… going to get the donor liver.

After that we watched the helicopters landing a lot more closely. We may

even have seen the one with the new liver land, but there was no way to

tell. They also kept pushing the time of the surgery back. At first it

was 7:00pm, then 9:00 and finally 11:00. The doctors assured us that

everything was fine and that everything was still a go, but it was still

rather nerve wracking.

shot some more footage on his video camera for his proposed

documentary about my transplant. Several doctors and nurses came in and

asked me lists of questions, many of which were the same that the others

had asked. They were all very nice though. One doctor (Dr. Marwan) even

signed my belly to indicate that he’d gone through the checklist with me!

Anyhow, they finally took me down to the surgery prep area at about

10:00pm. By then I was very ready to get going. I wanted to go to sleep

and let the surgeons work. I still didn’t have official word about

whether the donor liver was good, but I assumed that it must be since

they were still getting me ready for surgery. They let Shadya, ,

and come in for a few minutes, and then ’s pastor came in and

prayed with me.

After they had me sign a couple more release forms (for blood

transfusions etc) they finally wheeled me toward the OR. They must have

given me something in my IV, because by the time I got to the OR I was

pretty groggy. I remember seeing a very impressive array of lights above

me, and having the vague notion that various people were working on

various parts of me. Then someone told me I was going to go to sleep,

and I did!

Day 1 - Monday – When I woke up, I felt good. I still had a bit of doubt

in the back of my head, but I didn’t really believe it… Somehow I knew

that things had gone well. It may have been hours after that initial

consciousness, but it seemed almost immediately, when I realized that

Shadya and were there with me, talking to me. They told me that

the operation had gone extremely well, the new liver looked very good,

and that my old liver had not had any cancer on it. With that the last

shreds of doubt dissipated and pure golden happiness flooded through me.

I couldn’t talk, because of the breathing tube, but I did my best to

signal to people how happy I was. Looking back I must have seemed sort

of childish in my rather feeble enthusiasm, but it was the first moment

I dared to really start to expect the best.

The rest of the day I drowsed a lot. People came to visit and I talked

with them, but mostly I was in a comfortable, happy doze. Luckily for me

they took the breathing tube and the NG tube out while I was still

pretty groggy, so I didn’t have much problem with them.

Day 2 – Tuesday - Well Last night and this morning I had a Greek guy

named Bill as my nurse. Quite an interesting character. He kept me and

the other patient (a woman who’d fallen and hurt her face really bad)

awake and talking most of the night. He talked about food and cars and

vitamins and herbs. Just quite a character. He also kept pushing water

at me, and keeping very careful track of my Is & Os (ins and outs). It’s

interesting to see the different ways that different nurses do things.

When the new nurse came in this morning (a guy named ) he spent

about the first 45 minutes cleaning up clutter that Bill had left

behind, but he didn’t really pay very close attention to me.

Toby got here today and came in to visit for a while. It was really nice

to see him, especially since he was able to tell what was wrong when

started an IV going and it was burning like crazy. Toby saw that

he had it going to too fast, and hit the nurse call button. The charge

nurse came in and adjusted the rate of the IV… unfortunately she

adjusted it to twice as fast as it had been! That really hurt! I was

breaking out in a sweat and in really bad pain, so Toby clamped the tube

off. About that time showed up, and was kind of upset. He should

have been most upset about what the charge nurse did! was OK I

guess, but I was glad when Bill came back in this evening!

Day 3 – Wednesday - I finally made it into a private room! Last night I

had Bill as my nurse again, but this time he actually let me sleep after

about midnight. He did get me up and walking a little before I went to

sleep though. I walked about halfway around the loop there in the SICU,

but then my stomach muscles started to lighten up and hurt pretty bad,

so I went back to bed. In the middle of the night they switched me to

another room… I guess they had someone coming in who needed to be

stabilized before surgery, so they gave that person to Bill, and moved

me to another room which had one nurse watching me and two people in

another room. The nurse there was pretty nice too, but she was quite

busy with the other two people next door. They got me up in a chair, but

then left and I wasn’t quite up to getting myself back in bed. So I

ended up sitting in the chair for several hours and got pretty worn out

and chilled. I didn’t have my nurse call button in reach and I could see

them working rather frantically on one of the people next door. It

turned out that they were just getting him ready for discharge, but I

didn’t know that. For all I knew they were trying to save his life!

Anyhow, Shadya and Toby and Mala-Mala showed up after a while, and got

me back in bed. Then a little later the nurses finally took me up to a

room on 9 south which is the wing they usually put the transplant people

on, so I was where I was supposed to be,! All the nurses here are used

to dealing with transplantees and all their weird meds etc. It’s also

very nice to have my own room with my own bathroom! The doctors have

been very anxious about my bowels… they keep asking if anything has

happened with them yet, but really it’s hard to do anything when all you

have is one of those portable seat pots to try on, and nurses are coming

in to check this or that every few minutes! Now I can go in the bathroom

and sit on a real potty as long as necessary!

Day 4 – Thursday – This has been a relatively uneventful day. The nurses

here in 9 South are very nice, and have been teaching us about my meds

and how to care for my incision. My nurses last night (or actually a

nurse and a “care provider”) were Tequita and Dee, or Tee and Dee for

short. Tee wrote up a sheet with all my meds, so I could start learning

them, and she showed Shadya how to clean my incision and apply iodine to

disinfect it. Toby and Shadya were here most of the day and that was

nice. We talked and watched some TV together and played some cards…

Shadya taught Toby to play Basra and he really liked it. I was a bit out

of it from all the meds so I didn’t play very well… I just couldn’t get

into the game very well. The meds are starting to be a little bit of a

pain. I’m starting to be able to distinguish the side effects from the

general discomfort from the incision. My hands are pretty shaky and feel

sort of weak, and things look a little strange to me. I’m not worried or

paranoid about them, but everyithing seems to take on a personality and

I see faces in every indistinct shape around me. It sort of weird, but

not too worrying. I have also had a really hard time sleeping. Actually

I go to sleep easily and wake up feeling quite refreshed and ready for a

new day. Then I look at the clock and realize that I only slept for 30

minutes or so. Then I’m awake for a while--30 minutes or an hour--and

the process repeats. Tonight it’s especially bad, because for some

reason I’m having to pee every few minutes. I keep filling up the urinal

(they’re still keeping track of how much I pee to make sure my kidneys

are working OK), and having to call the nurse to refill it. I also end

up watching a lot of TV in the middle of the night. Luckily they have

the science channel and the discover channel both of which have some

pretty interesting shows on them.

Day 5– Friday -- Quite an exciting (and slightly worrying at times) day.

First of all, I realized early this morning that all the water I’d been

retaining was gone. That’s what all the peeing last night was about. So

that’s nice even if I didn’t sleep much. Then a little later this

morning when the doctors made their rounds they said my labs had taken a

very slight turn for the worse. They said it might be rejection showing

up, but that this was really earlier than they’d expect rejection, so

they were worried that the blood supply for my new liver may have

clotted off. Dr. Marwan (who I should have mentioned earlier, he’s the

member of the transplant team who seems to be in charge or “making

things happen” for me. He’s the one who interviewed me before the

transplant, and he usually updates us on how blood work etc. is going

before the more senior surgeons come in.) came in and grabbed a

wheelchair and wheeled me down to ultrasound to check out my blood flow

etc. Then he pulled some strings to get me in to a room with an

ultrasound tech right away instead of having to wait my turn! He even

stayed in the room with me so he could get the results immediately when

they were done. He went out with the tech and discussed the results and

when he came back in he gave me a big grin and a thumbs up. He said

everything looked great, which was really good news because if it hadn’t

they probably would have had to go back in and do more surgery to

correct it.

Later in the day (about lunchtime) I had just started lunch and Dr.

Marwan rushed into the room and saw my lunch and said “Don’t eat that!”

They wanted to do a biopsy with conscious sedation and didn’t want to

give me the sedative if I’d eaten recently. Well, as it turned out they

ended up doing the biopsy without the sedation, but it actually didn’t

hurt at all so that was OK. It did ache a bit afterward, but the only

really unpleasant thing about it was to lying on my side for two hours

afterward! It’s supposed to help keep the biopsy site from bleeding

internally. So at the end of the day, I still don’t know for sure what’s

wrong. They don’t have results from the biopsy yet, but at least I know

it’s not the really bad possibility (blood clots). I’m still feeling

better every day, and the doctors seem to think that that is a genuinely

positive sign too. They’d probably be more worried now if I were feeling

really sick.

I did get to see the kids for a couple minutes this evening. Mala-Mala

brought them up when she came up to get the key to the hotel room

(Shadya finally got a room in the Guesthouse Inn). It was nice to see

them for the first time in nearly a week! They thought my incision (I

called in my zipper) was pretty impressive!

Day 6 – Sabbath – Results are back from the biopsy. They say it looks

like a mild case of acute rejection. That’s probably good news really,

because it should be possible to control it with a bit more immune

suppression. On the negative side of things, they apparently found some

bacterial infection of some kind in my new liver (the culture results

came back yesterday) and so now they’ve got me on IV Vancomycin which is

a real pain… literally. It burns my vein like crazy when they put it in.

I think it wouldn’t be as bad but the nurse who started my IV had a

pretty hard time, and used one of my smaller veins. It just seems to not

be going in right. Anyway, if it causes problems again I’ll ask the

nurse to do something about it.

The kids are here, but they both seem to have a mild cold, so I probably

won’t get to see them much. Mala-Mala came over though, and has spent

most of the day with me.

Day 7 – Sunday – I’m finally out of the hospital! After being in there

for what seemed like an awfully long time, it’s nice to be out, but I’ll

have to admit that I will miss some things. The people there were

awfully nice, and it’s sort of reassuring to have the whole medical

support system that’s built into the hospital right there. I am

definitely ready and very happy to be out and one step closer to home.

The first half of the day was mostly waiting for lab results and the

final order for discharge. Mala-Mala was there in the room most of the

day, and Shadya was with the kids getting them cleaned and disinfected

so I wouldn’t catch the kids colds. When the order for discharge finally

came, everyone was down at the cafeteria getting food for a picnic

lunch, so I hobbled around as best I could and packed up my stuff so I’d

be ready to go when people got here to take me to the hotel. After

people got back from lunch and they were getting all my final discharge

paperwork together the nurse asked if I had all my prescriptions. Well,

no one had given me any prescriptions. I had assumed I’d get them along

with my discharge paperwork. In the end, Dr. Marwan came through again,

and wrote up all the prescriptions I’d need. He just really helped us

out so much throughout the hospital stay that it was sort of fitting

that the stay ended with him helping out once again!

After what seemed like an awful lot of time and hassle getting all my

bags hauled to the car and waiting for the transport person to come and

wheel me down in a wheelchair, I was finally out. We decided we should

try to get my prescriptions filled first, so we stopped by a couple

pharmacies. Neither of them had what we needed, and I started to get a

bit worried that we wouldn’t be able to find what we needed.

By that time though, the kids and Mala-Mala were needing to start back

home pretty soon, so we went to the park for our picnic. It was nice to

be able to get outside, and nice to finally have some real time with the

kids. I’d only seen them for a few minutes since last Sunday. After

sitting on the ground for a little while, my incision started to get

pretty painful, and I was having a kind of hard time, so we packed up

and headed back to the hotel. By the time we finally got there I was

pretty worn out. I had to sit down on the floor in the hall while Shadya

ran down to the front desk and got her key card reactivated (the doors

in the hospital deactivate them somehow). We did eventually get in the

room, and I was able to lie down. Mala Mala and the kids packed up their

stuff, and headed for home. Then Shadya called around to some pharmacies

and found a Walgreens pretty near by that carried all the meds I needed,

so she ran out to get those. By the time she got back it was getting

late in the evening, but I was feeling a little better. My first day out

of the hospital has been quite eventful, quite tiring, but overall good.

I’m looking forward to doing more and getting better!