Peggy - TIPS ON PACKING FOR TRANSPLANT SURGERY

[Guest guest]

In 2001 I started a “Transplant

Packing List” culled from e-mails in several different liver groups. Most are written in their own words. Don’t know how many of these “tips”

will happen to you or even if these still hold true today (the medical challenges

of tx change so quickly) but, here it is ….. if

anyone who has had a transplant wants to add to the list, please just let me know. I think I have more tips some place, I’ll

keep looking for them.

HTH Barb in Texas

Tips for those waiting for a transplant

Here's

one for the men:

Doesn't happen to everyone BUT my scrotum swelled up

to about the size of two baseballs. Man did that hurt and was really uncomfortable.

Bring an athletic supporter and get a lot of ice. This lasted for about two

weeks. After I came home(8 days after surgery) I could only sleep in a hospital

bed or in a recliner on my back. This was hard for me as I never sleep on my

back.

The following tips are applicable to both men and women:

* DO expect to be so very swollen and filled with fluids post transplant that

you are as big as a 6 month pregnant woman. I was not expecting that - be sure

you have some clothes you can wear that are that big, you will surely need

them.

* DO NOT buy costly 4 x 4 gauze squares or any other type of bandages. Plain

old Kotex make the best bandages and two of them , one on each side, cover your

incision better than any custom bandage you can make. They are cheap, and

individually wrapped for sterility.

* DO NOT rely to much on that anti-bacterial soap that is waterless. It dries

your hands out quicker than you can believe, mine were bleeding after using it

about 10 times. There are special antibacterial hand wipes, individually

wrapped that are much better. Wet Ones is one, and Wash-Up by Clinipad is

another one. Much better than the waterless soap. You have to wash your hands

so much that plain soap and water will get to be impossible, I highly recommend

these hand wipes.

* DO bring LOTS of your favorite kind of lotion to have in the hospital. Your

skin will be so dried out you wont believe it - and in real odd spots. I

believe this is from the position you are in while on the operating

table. It's little things that make a huge difference. Like slippers,

bring slip on ones. You do not want to bend over to put on your slippers!! It's

a big ouch.

I had more back pain than any other pain, my surgery was also 14 hours. I wish

I had a heating pad, and an egg crate to put on the bed. Tapes or CD's to play,

the hospital is noisy. Chap stick, your lips are sooooooooooo dry from

breathing tube.

I had my laptop computer with me also. It kept me entertained for hours at a

time! I just unplugged the hospital phone, plugged in my modem and read and

sent email and browsed my favorite web sites. Right after surgery you will have

a large breathing tube and another tube through your nose both of these go down

your throat. The big one usually comes out within hours or the first day

depending on how you are doing. I finally got some chlorispetic spray after the

big one was removed. I asked for the cherry but all they had was the green

(YUCK) This helped the pain in the throat a lot. It also seemed to break up the

phlegm and made it easier to swallow. The stuff the hospital normally used made

me want to cough and boy did that hurt, but the choloriseptic worked great.

While you are in the hospital don't be afraid to ask for whatever you need. My

nursing staff was great.

Also concerning clothes make sure to bring oversize underwear. My 38 inch waist

went to a 42-44 I gained about 20+ lbs in water weight.

Buy a pill container which has 7 days and at least 4 containers per day. This

makes it much easier to organize your many meds. You will probably be a little

spacey from everything for a couple of weeks at least, and this really helps.

Even today I still forget my meds sometimes but when I do I realize it because

the slot is still full.

Also after transplant your docs will want you to take your blood pressure,

temperature, and weight daily. Buy one of those ear thermometers. The blood pressure cuff my wife bought

goes over the arm, and measures blood pressure and pulse, but there are some new ones

that fit over your finger. Buy a good scale that has numbers that are easy to

read. We did not know we needed these things until I was in the hospital and my

wife had to run out and get them at the last minute so you will have more

options if you look around before you go.

Pill container?

I use a fishing tackle box, it has bigger slots. I

couldn't find any pill containers that would hold all my meds and vitamins. The

tackle box works perfect. I believe I got it at Walmart for about $5.00. I put

a label on each slot for the day, AM and PM. As others have stated, it is

easy to forget if you took your meds or not. I can look at the tackle box and

easily see if I did or didn't take my meds. I fill it up once a week. Works

great. Wish I had all these tips last year.

I have 4

pill boxes, (7 days) I have 2 labeled P.M. and 2 labeled A.M. one of each goes

in my purse, that way if I'm out at 8 I have pills with me. I definitely have

them all counted out. Since I would be constantly forgetting I also bought a

watch with a timer, I have it set on the 8 P.M. since I have the hardest time remembering then.

Really I agree take very comfortable loose clothes with elastic waist band,

even you gentlemen, I immediately put on 17 lbs. If any one has to stay over as

an outpatient do take one nice thing and some make up, in a coupe of weeks it

makes you feel more normal.

If you smoke really try quitting. Walk as much as you can, just start off

slowly. And go to physical therapy if they offer it, you feel better after, it

helps get rid of fluid, and you meet lots of new friends. Benadryl good for

sleep. My nurses told me to get some. Probably the prednisone, but you do have

weird sleep habits for weeks. everyday I would

practice sleeping on my side, by putting a pillow behind me, and one in front

to help with the support, by day 5,

I was really getting there, I hate sleeping on my back.

If you

have a propensity towards diabetis or are now diabetic, it will be much worse

initially when you are on high doses of Prednisone and the IV form -

Solumendryl. Right after transplant, they put you on Solumendryl and your

glucose levels will go right through the ceiling - the tx

staff will be monitoring you closely for this (among a million other

things).

OH, one

other thing - the main immune suppressant you will probably be on is Prograf.

My center makes me take Prograf on an empty stomach and it is a real pain

timing your insulin, eating time, fasting time for meds, etc.....Play close

attention to how they time this in the hospital since you will have to follow

that same schedule when you get home. It is almost as bad as military boot camp

for the first couple of months - you have to really time all those meds to the

dot when you throw insulin in the mix. I start my first meds at 6:00 AM and have to be done eating by 7:00 AM to keep to the eating/fasting schedule.

It sort of sucks........ but you gotta do what you gotta do!

I thought I would tell all of you waiting that if you use Stadtlanders as your

pharmacy (it is a mail order pharmacy that specializes in transplant patients),

they GIVE you the extremely large pillbox you will definitely need, a

thermometer, and a blood pressure monitor. So, don't buy this stuff if you plan

to use Stadtlanders. If you would like to " pre-register " with them,

the number is 1-. The inpatient transplant coordinator should get

your drugs for you that you need on your release, and if it is through

Stadtlanders, they will send it to the hospital so you can take all of that

paraphernalia home

with you.

More tips for

those waiting for a transplant.

Take a back brush with you. The pain medication will make

you itch all over. The brush is long enough to reach all over and is soft

enough that it will not cut your skin.

Get as many pillows as you can stand. Use one under your

belly for support. You can turn slightly on your side and have someone stuff

them under your back. This helps you sleep on your side some. Put one between

your knees to help with the back pain. Also you will need one to help you

cough. You can get them from the hospital most of the time if you ask.

It would not hurt to get a book on sign language. Just

learn small phrases like I hurt, need water, or just learn the ABC`s. If you

have the breathing tube in for longer then you expect, then you can communicate

if you need to. I did this and it helped so much. It is hard to write with

shaky hands.

Take some cards or even the little travel games to play to

pass the time. For those of us who do not have a laptop.

Bring something to put your hair up with or get it cut. It

is a hassle when you don't feel good.

Bring socks for your feet. I was cold one minute and hot

the next. Socks can make you warm again or be taken off if you are hot.

Stationary for passing time. Pictures for mental

support.

I had a piece of poster board so people could write

messages for me when they came to visit. That way you can send out thank you

cards if you want. Plus I slept a lot and missed some visits.

Make sure that people know to dress warm. I had to have my

room like an icebox. The thermostat was on 50 the whole time. But I had an

electric blanket on me. My family froze to death. You need to get electric

objects approved from the hospital. This can be done before surgery.

Make sure no one visits with kids if they have a cold. Or

if they have one don't come up. You have no idea how many people do not realize

this.

Also be ready for mood swings. I

yelled so much when I really did not mean too. The solumedrol is the main

reason for this.

I could not stand the feel of anything touching my skin

except for the sheet. I was nude for most of my stay. Be prepared for things

like this. It happens a lot.

Also I did not need a bra. I lost every thing I had so

there was nothing to put in a bra. But it does come back.

The biggest thing for me was the incisions I had. They did

not tell me that I would be cut under my arm and on my leg. I had no idea and

some hospitals do not tell you about it. I ripped out 4 stitches in my leg when

I scratched.

Bring sugarless gum to help with dry mouth.

The best types of clothes to bring are button up ones.

Pull ons don't work well with the IV.

Vitamin E oil will help minimize scars. You can rub it on

the incision the first time you take your bandages off. I put it on every time

I took a shower or changed bandages. It works wonders and helps with itching.

1st. They wouldn't allow me to have

Chloroseptic spray due to the sugar since they were taking daily glucose

levels. 2nd. A

portable fan. The hot flashes from

the prednisone are horrible. I

don't know if menopause is like that, but if it is I have a greater respect and

compassion for what women go through. 3rd. GOOD TOILET PAPER. Nothing worse than

getting a raw behind when the bowels start working at full strength.