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,
Steve
Steve,
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.
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
Slippers
Cash
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 (?)
Socks
Slippers or sandals or crocks
Toothbrush, toothpaste, comb, brush
Mints
*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!
Mark
PSC 2011 / Transplant 2015
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?
All for now.
Jeff
Steve,
Best of luck for a speedy, complication free recovery. Start thinking about all the great things that await the new you!
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.
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.
Warmly,
Steve
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.
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!
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.
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.
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.
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!
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.
Stephen
Stephen,
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.
Warmly,
Steve
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,
Paul
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.
Warmly,
Steve
Hi All,
Transplant went well, new liver functions are very good. Unfortunately I had an expected set back after the staples were removed. Apparently the underlying skin wasn’t fully healed and so everything burst out. Quite the trauma! Fortunately they got me right into OR, put back together etc. But, it is a setback.
Finally home. And I’m honestly amazed at how much muscle I’ve lost, and how hard it is to walk!
All the comments in preparation were very helpful. If anyone has thoughts on navigating the recovery, I’m all ears.
Warmly,
Steve
Steve,
Welcome to the club! It is common to have a setback or two post-tx. Glad you’re back home.
For being so close to transplant, there are some good suggestions/recommendation above that can still help you. Do you have any specific things that are worrying you?
Jeff
“worrying you?” Spot on with the question Jeff. Yes, I guess I’m worried I won’t again my weight/muscle back, worried I won’t be able to get back to where I was physically and activity wise.
Perhaps its just the reality sinking in that its a longer road than I anticipated.
Thanks for the openness.
Steve
Steve,
Congratulations on your successful transplant and as Jeff said welcome to the family of PSC patients who have received that precious gift of life. Sorry that you had a rough start after the staples were removed. Recovery will take time, it’s a day-by-day process. Take it slow at first but try to get a little walking in each day. Don’t overdo it like I did the first week after transplant. It might only be 10 to 15 minutes at first, but you’ll work up to more. This will help with the scar tissue pain to keep walking each day. Hopefully by now you are off the strong pain medication and just taking something like Tylenol. One thing to watch out for is being on prednisone you will have a voracious appetite. I gained 20 lbs. that first year post transplant and I really need those 20 pounds back off 8 years later. We wish you well in your recovery and as life moves on may it bring you hope and joy with those you love. Wishing you a very Merry Christmas and New Year.
Mark
PSC 2011 / Transplant 2015
Thanks Mark for the good counsel. Yes, walking 10-15 minutes a day. One day at a time. Have a blessed Christmas as well.
Steve