3 weeks post liver transplant: when will I feel better?

@ajdo129
You have a great attitude! I'm 5 monthsvpost liver and what you said resonates with me. Thank you for the reminder that exercise is important. I do water aerobics as well. I vacuumed for the first time yesterday and needed a nap, boy was I in pain. But today is better. Do you have constant pain over your liver? I had low wht blood cells and had an Neupogen shot, OUCH! I still ache in my bones from it. But it worked. I too have other issues from the transplant mostly GI as my donor had 3 ducts so ine got put into my intestine. But I am alive and today is a good day. 👍

Ajdo, I absolutely love your outlook on your recovery. I too was in complete end stage liver disease, dx. 2020 had a new liver by 10/20 so very blessed💚💙.
I like the way u explain our new normal, that is what I am dealing w/right now. I have had some 👍👎 but I know I will get better and stronger again, that part of TP.
Thanks again wishing you the best and it sounds like u have a good support husband, that makes a difference.
Living our best life’s.

Hi to the many responders and thanks for the hugs and likes. (FYI I have never been married, no children and I live alone, so my support is from friends, neighbors and local area cousins and not a husband.) To answer your questions:
1. I have had to return to Mayo several times because 4 times my liver enzymes (ALT. AST & Alkaline Phosphates) spiked to a concerning level. Mayo has now discovered that my enzymes have an odd but not life threatening way to spike in waves. When 1 or 2 enzyme markers spike they are no longer as concerned. When all 3 spike I am off to Mayo. The last 8 tests and recent PET scan say liver is okay.
2. Another anomaly I have is roving soft tissue areas. I just had a PET scan to rule out pancreatic cancer and it was ruled out. Now there is an area near the duodenum. I and Mayo seem to discover anomalies that are no threat so far. Originally before we discovered bile duct cancer, I had one month of blocked bile ducts and zero jaundice, I have learned that I am just a plain old anomaly!
3. I am off to Mayo again for another ERCP and EUS. Even though I have reconstructed bile ducts that connect to my new liver, a bile duct is dilated. (Go figure!) So when they explore and probably stent the bile duct I suspect they will check out the duodenum. So that is why I call my relationship with Mayo as "Mayo-pause". I plan my life as much as I can, then regroup when Mayo calls. Life is still good and keeps me on my toes.

@rosemarya
Hi Rosemary,
My name is Elaine and today is my 30 Year Anniversary of having my Liver Transplant❤️🙏🏻❤️God blessed me with a new liver on May 29th, 1993 at Emory University Hospital in Atlanta, Ga. I am very happy to be alive and you will be too once you get through a few more months and decide you aren't a freak and you are actually going to live. You may look & feel different now but things will go back to mostly normal or a “New Normal” sometime soon !! You’ve been thru major life altering surgery and the more you work at being better, the better you’ll start to get😊
Liver Transplants hadn’t been around for too long when I had mine and people didn’t know what to say or do when they found out I’d had a Liver Transplant. It was so nice once I started going to the Transplant Clinic because I was able to sit and talk to other Post Liver Transplant Patients. It helped immensely to see how they were doing and ask questions to someone who new first hand. It was also nice to see they had and were recovering like the doctors said. One person told me that I would not feel normal until after One Year. I wondered if that could be true, but he was close. I wasn’t yellow any longer and I had lost a lot of the puffiness, but I still had chipmunk cheeks 😉 It took me a while to accept the new me! However, I was alive and I was able to be with my children, husband and family and they helped me find the new me 😉 Once I started to do my daily walk around the neighborhood, I started talking to people and reconnecting with old friends and making new friends. They were all amazed at how well I was doing and wanted to know more about who gave me the liver etc.

@ehs6855 Good Morning, Elaine and Happy Belated Liver Transplant Birthday! Congratulations on 30 years of life to enjoy with your family and loved ones. I can definitely see that you are a living example what is meant by the term, "Gift of Life".

I think that you intended this response to someone else. I had my liver/kidney transplant 14 years ago at Mayo Clinic in Rochester after a transfer from UofKY due to complications. However your message is a vital one for anyone who is undergoing a liver transplant. You are an inspiration for me and I look forward to my own 30th anniversary someday. Thank-you for sharing

I especially like what you said, "...Once I started to do my daily walk around the neighborhood, I started talking to people and reconnecting with old friends and making new friends. They were all amazed at how well I was doing and wanted to know more about who gave me the liver etc." That is similar to what I experienced. And one of my greatest honor was when people told me (and still do) that they decided to register as an organ donor because of what they witnessed through my Miracle of organ transplant.

Elaine, What are some changes that you have seen in the transplant process since your transplant 30 years ago?

Hi Elaine, Happy Happy 30 year with your LTP. I am almost 3yrs. and am doing well, I had a rejection last October so I am on more rejections meds than I like.
After 30 years ru still having to take a lot of prograf/celcept? Have you had any setbacks after 30 yrs. Just curious..
Well you give all of us TP hope to know that u can live a long active life💚❤️ thanks for sharing.

just be patient you will feel better I had 3 years with liver transplant and few month later I feel better just follow your doctors guide

Eso es lo importante sentirse viva solo camine lo más q pueda no exagere en ejercicio su cuerpo solito lo pide a mi después de 3 días de mi transplante me mandaron a caminar y pues así lo hice y poco a poco fui extendiendo el tiempo de caminar a las dos semanas en Arizona Mayo se sorprendieron de la recuperación regrese a California y seguí caminando solamente eso ayuda mucho de ahí hasta el día de hoy he subido peso pero controlando RECUERDE su vida ya no será la misma NO ES SU HÍGADO es un órgano implantado y necesita tiempo así que CUÍDELO a mi en febrero de este año me dijeron que mi hígado transplantado está empezando con CIRROSIS de nuevo pero yo sigo peleando hasta q DIOS PERMITA que el hígado aguante y pues esperare un segundo transplante si DIOS ME LO PERMITE pero sigo agradecido

@arqui02000, I can see that you are following the good advice of your doctor, and that you have a positive outlook and a strong spiritual connection. I trust that your determination and gratitude will carry you forward as you adjust to the recent diagnosis of cirrhosis. I wish that you were not in this current situation.

Are you having any symptoms of the cirrhosis? Are you currently on the transplant list?

I will pray for your 2nd chance.

@myfablife, HOPE is a beautiful word! We transplant patients know it well, and rely on the power that we get from chatting and sharing with each other.

You mentioned being on more meds due to rejection in February. Will these be long term for you? How are you being monitored?