I’ve read this board for a while and special thanks for putting it up for us PSC patients.
I’m currently in late stage 4 liver disease (cirrhosis), raging chronic cholengitis (daily pain and lethargy), no cancer with an overall meld of 20. I was 185lbs 2 years ago and now I’m 139 at 6 feet tall. Kidney and clotting factor are normal, but everything else is a disaster.
I’m terrified about post surgery and recovery, being 50 and still wanting to live life with vitality.
Fighting PSC for the last three years and then having to fight hard for another year following transplant seems so daunting, but it’s better than dying.
All that said, I’m so very grateful my wife was cleared as a living donor and we have our surgery date scheduled at the end of June.
Today, the living donor surgeon said that she will be taking my wife’s right lobe. I’ve also read other people having the left lobe of the donor patient being used.
What is the clinical differences between the left and right lobes and are their benefits to having one vs the other. And are there benefits?
I’m open for any of others experiences, good or bad. I’ve had the honor of talking to a few on the phone to learn more about them and their PSC path via the transplant program I’m in.
Will,
Hi. Thanks for your post today. I can understand your concerns about transplants but I want to encourage you today that life with a transplant is 1000’s of time better than life without a needed transplant. I know every patient’s situation is different, but I had my liver transplant at age 51. This summer will be 6 years. Although it is very major surgery, they cut so many nerves in your abdomen to get your liver old liver out that the pain I experienced was really quite minimal. I was only on the strong narcotics for just 4 or 5 days post-transplant then switched to Tylenol. I felt so much better. One of the first things I asked for when I woke up was a mirror. I wanted to see the whites of my eyes. They were white as the driven snow. They had been so yellow and ugly for so long and I looked like death warmed over. Don’t be discouraged, you will make it and your dear wife will do fine as well. I think it is more typical to take the right lobe of the liver than the left. There are so many factors they have to consider, location of blood vessels around your wife’s liver, etc. They will do what is safest for her to ensure she has continued good health. Both of your livers will grow back to full size within I believe it’s 3 months although each of you will only have one set of main hepatic ducts now. I do hope they route the ducts for your new liver into your colon instead of connecting back to the main hepatic duct. That greatly reduces the possibility of recurrent PSC.
If you need to talk with anyone I am certainly glad to speak with you by phone. Just private message me your phone number and we’ll set up a time. I wish you and your wife the very best with the surgeries. Take care.
Thanks Mark. They are connecting my biliary duct to my small intestines. The existing ducts are nuked during surgery as far as I know and what has been told to me.
How was your post surgery? Were you able to get around and do things in a reasonable amount of time? Any weird complications?
Sorry you’re having to face such a challenging road. I’ve heard one transplant surgeon describe it as trading one disease for another disease - in this case, PSC for the disease of post transplant. But you are definitely trading up, so wishing you the best through it all. Take care.
Will,
Regarding post surgery. Yes, I was able to get around. I found that even a week after transplant when we were staying at a nearby hotel for a month after surgery that if I walked 15-30 minutes a day it made a big difference in controlling scar tissue pain. Before the month was out my wife and I were taking 30-45 minute walks in the surrounding neighborhood. Actually I was starting to get bored in the hotel and thankfully I had made sure my VPN to my work computer was up and running prior to surgery. I was able to have my associate in the office send me some stacks of things to do and I worked from the hotel room a little every day. I was actually back in the office for 2 hours a day a month after my transplant. Then I would go home and work from home some as well. Over the next several months I got back to a 40 hour work week. Of course eveyone does different forms of labor so it depends on your job. Keep in mind after surgery that you will not be able to lift more than 5 pounds for 3 months. A gallon of milk weighs 8 pounds to give you some perspective. Whatever you do, listen to the post transplant instructions and follow them to the tee. The last thing you want is to have to go back in and fix something you busted with carelessness.
A final note, in my opinion, I do NOT view post transplant as a disease. It’s a new lease on life a wonderful gift of life that can carry you the rest of your life if you take care of it. I encourage both you and your dear wife, that things will get better, life will go on and you will see your grandchildren and hopefully their children as well! All the best.
Hey everyone, I had a transplant in 2017 since then liver has been ok but stomach has been a mess. Back and forth between cdiff and colitis. They have thrown fecal transplants at me tons of biologicals and the only thing that works is vancomycin. I take four a day and it also improves liver numbers. I’ve been off and on vancomycin for the last 2-3 years and it is the only thing that seems to give me a normal quality of life. I don’t want to become immune to it because it’s the only thing that helps. Anyone else have similar issues??
No you will not become immune to vancomycin. Many patients have been on vancomycin for years, some more than 20 years. My daughter has been taking 2000mg/day for almost 9 years. private message me if you want more information.
Hi. My name is Kim. My husband who is 60 had his transplant 10 months ago. He is doing great!!! He feels like he has his life back. He exercises everyday to build up strength and basically can do everything now. He is back to his old self. The first week after transplant was in his words not as bad as he thought it would be. Obviously a bit of pain and he needed to build strength back but he said after being sick for so long he felt it was an actual miracle to feel so good now. You would never know he had a transplant. I think the weight loss he had and the extreme fatigue was so life sucking that now he feels he has a new lease on life. You can pm us and I know he would love to talk to you. He has some good tips for after surgery etc. it’s very scary going through this for you but you will come out of it so much better. Lots of positivity coming your way.
He was a cadaver liver. His bile ducts and liver were also stage 4. Any questions you have at all we can answer either here or on the phone. What hospital will you have your liver transplant?
Hi WQC,
The right lobe is much larger than the left lobe. They are roughly 2/3rds for the right and 1/3 for the left. I asked a similar a question when I had my transplant from a living donor 9 years ago. The doctor explained that they give the larger piece to the person with disease to help them with a recovery. The healthy donor will do fine on just 1/3rd.
My donor was my daughter’s friend. She never had any surgical procedure before this. Her recovery was quick. She was out of the hospital in about a week and continued resting at home before resuming normal activities after a month. My doctor said her liver will grow to full size in two months, while my recovery was about five months. After that, it took more than a year for me to regain normal activity.
Receiving a living donor vs a cadaver liver is different. Getting a full cadaver liver comes “on-line” immediately, baring any complications. They are up and around much quicker than someone receiving a living donor. That is because the liver is smaller and it is using most of the body’s energy to grow as well as function as your liver. In my case, I was transplanted when I had Stage IV liver cirrhosis from PSC and my health had deteriorated to just barely above too risky for surgery. Like you, I had cholengitis attacks with liver failure six times before transplant. All that ended with my transplant and I am doing fine 9 years later.
I am glad you will get a transplant soon. Life with PSC is an excellent thing to have in your rear view mirror.
With recovery from a transplant, I think the rule of thumb is that the sicker your are pre-tx, the greater the chance of a tougher recovery.
My transplant was 4 years ago, and I had no complications. Going for 5-6 mile walks within two months. My meds have been adjusted several times, but that is normal. I think the only lingering effect is that my appetite is about half of what it was pre-PSC, but I can live with that.
I wish you and your wife a quick recovery.
Jeff
Jeff
Hi cactus girl
My name is Charmaine and my son has psc and uc . My son has been taking vancomycin
For 4 years and is doing very well.
We live in Canada and I wanted to ask if if you pay out of pocket for this ?
Thanks Charmaine
