Transplant coming up

Hi all,

Things have progressed very rapidly for me recently. I’m scheduled to have a transplant 11/7. I have a donor lined up. The speed of preparation has caught me somewhat off guard. I’d be extremely grateful for any thoughts, tips, advice.

Thank you in advance,



I’m sorry to hear things are progressing more rapidly for you. I trust the transplant goes well and that you have a recovery without complications. If all goes well, you will start to feel better immediately after you wake up from surgery. Your eyes will probably be cleared up and very white, and over the days of recovery, a whole new you will emerge. Don’t be too fearful about the pain after transplant. Now every patient’s experience is different, but for me, I was only on the morphine pump for maybe a day or so then they switched me to pain pills. By the time we left the hospital after 5 days, I only took Tylenol extra strength 2 of them maybe three times a day. I rarely took another pain pill as you may be aware has it’s own set of complications, especially your GI tract.
One thing that may help you and your spouse if you are married, is to have a good packing list. Below is a list my wife compiled that we have shared with patients across the years since my transplant. I hope it will be a help to you as well. Please let us all know how things go after surgery.

Liver Transplant packing checklist

If your surgery is going to be somewhat far from home, pack as if you are going on vacation.

The caregiver/family who takes you should be prepared: *(Invest in a rolling storage bag ahead of time)

All current meds

Glasses case or contacts supplies

Camera to document the entire process, beginning to end

Journal or notebook

Blanket and pillow - overnight stay in a waiting room(?)

Overnight bag with everything…toothbrush, ear plugs, eye mask, or whatever you need to sleep, etc.

Change of clothes, hairbrush, etc. (I packed at least a week’s worth of clothes in the trunk of the car)

Reading or occupational materials, crafting, sewing, crossword puzzles, etc.

Familiar music or comforting book



Snacks, mints

Bottled water

Thank you notes, pen, return address stickers, stamps, address book if needed

Cell phone and CHARGER

Laundry detergent

The patient should pack:

All current meds, med list.

You will PROBABLY need your preferred laxative because of the pain med you will be on

Glasses case or contacts supplies

BIPAP machine, if applicable

Family photo

Lots of extra underclothes

Extra t-shirts, extra pajama pants

***IF THE INCISION LEAKS through the bandages, you will need someone to do extra laundry for you.

Robe (?)


Slippers or sandals or crocks

Toothbrush, toothpaste, comb, brush


*Chapstick - a fresh unopened tube

nail clippers

shaving cream, razor OR electric razor, charger, aftershave

hair dryer

favorite shampoo or hair styling products, if needed

Phone, charger, ipad, ipod, laptop, etc.

For the hotel: (We were away from home for about 3 weeks!)

Your favorite bath tissue

Your favorite kleenex

Box of baby wipes

hand sanitizer

Laundry bag

Ziplock bags, different sizes

Your own pillow

Some favorite kitchen “things”: sharp knife, cutting board, etc.

*I made my packing list and taped it to the inside of a kitchen cabinet. Only a few months later, I was so glad I could just grab it and pack up!

PSC 2011 / Transplant 2015

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Wow, Steve. Congrats on your impending transplant.

That was always a dilemma for me; do I hope for a long time before transplant or have one come quickly. Both have their strengths and weaknesses.

Thoughts at this point?

  1. Know where you will plan to spend most of your time. As your back will likely ache for several weeks, have several pillows ready. My sleep was horrible and pillows helped.
  2. Have some protein drinks each day, as it may be some time before you get your appetite back. Keep hydrated.
  3. Have someone stay with you 3 or so weeks. You won’t be able to drive, and will have quite a few followup visits and labs.
  4. For your stay, bring a robe-it’s a little more substantial than a flimsy gown, a small tube of vaseline for your lips, sugar free mints, phone, charger, toiletry kit, shorts/sweats, light reading.
  5. Go on several walks each day, in the hospital and after, but don’t overdo it.
  6. Eat small non-spicy meals until you know how your body has adjusted.
    7, When you can’t sleep at 2:00 AM, watching several episodes of South Park is a great way to spend some time.
  7. Don’t be too quick to see the incision. I saw small sections of the staples but it took a few days before I was ready for the full monty. It was a serious ick factor for me, as it brought back bad memories of when I had my large intestine taken out.
  8. Be prepared, mentally, for the finger sticks as they are checking your blood sugar. There is a small percentage of txers who will have to struggle with diabetes, either temporarily or permanent. I hated them, as my mom had to do those.

All for now.

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Best of luck for a speedy, complication free recovery. Start thinking about all the great things that await the new you!

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Thank you very much Mark. This is extremely helpful. We’ll be heading from TN to PA for the surgery. So will be up there 4-5 weeks post surgery, unless my recovery is speedy.

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Hi Jeff,
Thanks for the encouragement. I was diagnosed in 2005. So fairly fortunate I’ve had a long run without many complications. But the past year has seen a steep decline. I appreciate your suggestions. Especially about looking at the incision. Hadn’t really thought that through.



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Steve - Sorry to hear that your PSC has advanced to a transplant. But glad to hear that you are lined up with a donor.

I had a transplant in January 2021, after being diagnosed in 2012. I was originally told about 10 years max before my liver would give out, and made it 9 years so can’t complain.

I can share some of the things that helped, and those that concerned me during and after my transplant, and hope they will prepare you for the process.

  1. Line up help! I’m a Marine, so asking relatives and friends for help was pretty foreign to me. Actually, my ex-wife insisted I have my 21-year-old son come here to live with me (St. Louis) about two months before my liver gave out, and for about a month and a half after the transplant. Just having someone there was such a relief after being released from the hospital!

  2. Don’t freak out on the meds, and task someone competent to help you line up the pills you will be taking several times a day. When I first got released, I was taking a total of 64 pills divided up between 0700, 0900, 1800 and 2100. Even if you are good at doing it yourself now, your mind is going to be really confused when you are recovering. Even my son was confused on the meds, so we ended up making flip charts of each medicine, both common and brand name, dosage, and how many pills at what time of the day. Also make sure you order your pills in advance so you don’t run out, as that will stress you as well. Once your mind starts functioning again you will realize some of the pills, even if you missed them, would not have made a huge difference, but right after your mind will tend to exaggerate circumstances.

  3. Let the mind games pass. It will be pretty freaky once you get home from the hospital. I normally weigh about 180 pounds. While my liver was declining, I dropped to about 155 pounds. After I got out of the hospital I weighed 114 pounds. I felt so tiny back in my house that it was like I was a ghost. Really a trippy feeling, but just push it back and say to yourself I’m OK.

  4. Another mind game I was hit with was me, versus “the liver”. When I was talking to someone about the transplant, thinking about health, ordering meds etc., I kept referring to medicine for me, and medicine for “the liver”. It took me a good month to process the donor liver was now “me”, and part of me, not a separate entity.

  5. If you have a job you are taking FMLA (short then long-term disability), use it all! I rushed to get back to work, only using my short-term and none of my long-term leave. I got the new liver at the end of January and went back to work in early June. Once back there was someone that had been hired with my job title, basically making two of us. I was told not to worry and that they realized two departments I covered should be split up so I would still control one, and the new guy the other. As soon as the mandatory six months were up after my return to work, they let me go and kept him with his assuming both departments. Don’t trust your employer as they are going to look at you differently and assume you are going to be a risk to be sick all the time now. Take all the time you need to concentrate on healing yourself!

  6. Remember things will get better, thus keep telling yourself that. Start walking as soon as they send in a rehab specialist to get you back on your feet. The earlier you push yourself, the quicker you will heal! I am back to being me now and can’t be happier with the success of the procedure. All my liver functions are normal, as are all my other lab panels. Remember that others have gone through what you are going to go through in a few days, and they’ve done great with some members here having had transplants decades ago, and still going strong. Also reach out for advice if you need it. Mark and Jeff were both really helpful in my recovery and I’m grateful for the assistance.



Thank you very much for both the encouragement and the helpful ideas. I appreciate the idea of the med chart as well as being aware of the mind thoughts. I’ve got a tee shirt ready to wear that says: Powered by Recycled Parts with a picture of liver on it. Gift from the wife. Hoping to embrace the experience. Feeling much more at peace now than I had been.
That’s quite the weight loss! I haven’t lost quite the percentage you did, but for my original weight it’s been dramatic.

I totally get the “hard to ask for help” idea. I’ve been playing with that for the past 1 1/2 years. Intentionally asking. But still this has been hard to do. Fortunately I have a great network of family, friends, church friends who are all helping in some way. Plus this community.

Will keep you all updated.



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What great replies, everyone. I had my live donor liver transplant 11.5 years ago and am very healthy today. I enjoyed reading all the advice people have offered. Much better than what I could have done. I felt ready for the world after 6 months. It took a full year before I felt completely healed.

Best wishes,


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Hi Paul,

11.5 years! congrats. That’s been one of my questions, will this be worth it. Not that there’s a lot of choice but still. That’s very helpful to hear.
Right now I feel like I’m ready to start a long adventure race. Looking forward to see how I do.