Liver transplant - Let's support each other

Yes and I also did a sleep study. I'm trying to find a doctor that can do virtual visits.

@warrio202105, Welcome to Connect. I am sorry to read that you are being left on your own to deal with fatigue after your transplant. In reading that you are also affected with narcolepsy. I am not familiar with narcolepsy myself, but did have a student once who suffered with it. And he fell behind in class work. Once he received the diagnosis and the right treatment his life in the classroom changed dramatically.

Here is information about Narcolepsy from Mayo Clinic. I hope that it provides some helpful information.
https://www.mayoclinic.org/diseases-conditions/narcolepsy/diagnosis-treatment/drc-20375503

Have you ever seen a Sleep Specialist?

Hi @tinamarie10, I thought I'd check in. How is your mom doing this week? Are the stomach issues subsiding? What has helped if anything?

Fatigue is common with transplants. Dr. Kenneth Miller at Tufts Medical Center said that it can go away but it also can last forever. He has several ways to help his patients with fatigue. Google him. I am two years post and I am still suffering from fatigue. I was always very active before my unexpected liver transplant but not anymore I don't go or do anything because being fatigue. I also have narcolepsy, my primary care doctor manages my narcolepsy and I have spoken to him numerous times. He refuses to help me he said that I need to talk to my transplant team. I discussed it with my liver specialist he said that with everything he has to do that he doesn't have the time. I agreed with him I told him that my primary care doctor should be the one that takes care of it. Now I have to find a new primary care doctor but that's okay I really didn't like him. Has anyone got any help for fatigue if so what was it? Thanks

I really can't say a great deal about the waiting process. I was a 0.001 percent chance. A blessing of God, in that I got placed on the list at 3pm and got "the call" at 7 pm. and was out of surgery by noon the next day.
I had gone through all of the preliminary stuff for about 6 months. However, when I got bad, I got really bad and my MELD wentfrom mid 20's to 34 virtually over night. I am not a patient person so I am truly doubly blessed by not having to wait. I was teaching two weeks prior to transplant.
With that being said, I would advise anyone to trust the process. These people are the best in the world. Try to keep your strength and body mass (you will need it). Last but not least have a caregiver that you trust and is patient with you. You will need them and they will definately need patience with you.

@kearly, Good Morning, and Welcome to Connect! This is a great question that many many transplant patients have asked. I felt so poorly prior to transplant that my hair was very low on my list of concerns. It makes me happy to know that your loved one is feeling good enough to consider this!
Here is discussion that I want to share with you. Read, and ask your question there so that others with a similar experience will see it in the Daily Digest and be able to reply.
- Can I color my hair after transplant?
https://connect.mayoclinic.org/discussion/hair-dye-after-transplant/

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Is your bride pending an evaluation for liver transplant? or Is your bride pending (waiting) for a liver transplant? What questions do you have as caregiver?

@hdillon7, Congratulations on your recent liver transplant. I know that you are thrilled about the good labs and test results!
My transplant was 14 years ago at Mayo Rochester. I had to laugh at your comment... "please don't tell then that I have been "through a major surgery. I know that;..." I remember that one quite well! The one that I get now is, "You mean you still have to take those medicines? You look so well?"
Related to your pain, I notice that any slight twinge of pain or even a twitch in the area of my liver transplant or my kidney transplant draws my attention. Currently, I am post cataract surgery and my full attention is on anything that is left eye or vision related. You are absolutely correct about listening to your body! I learned real quickly that over-doing meant discomfort, pain, or tiredness. I also learned since my transplant that healing, for me, took longer than pretransplant. For instance, if I get a cold, or a cut, or a bruise, or a sprain,...it takes me longer to heal. If doctor says 10 days, I can plan on 2 weeks. I hope that your pain which is likely part of healing will become less. I hope that one day you will suddenly realize that you don't hurt anymore!

Your rambling is good! I like to call it, "Sharing your experience" .
What is something you would like to share with someone who is currently waiting for a liver transplant?

I don't know what is 'mandatory' but can share our experience. We moved to Arizona from California once he was listed. Within 10 days were were blessed with a transplant. Two months after transplant, and a pretty easy recovery, we were told we could go home. He gets weekly blood tests done, which I print out and send to Mayo Clinic, via their patient portal. We returned to Arizona for one day of tests and appointments five months after transplant. There have been a number of zoom video sessions, a ton of messages back and forth and a number of phone calls, some after hours due to continuing bumps in the road to recovery.
Mayo has been there for us whenever we need them. We will be returning to Arizona, for a one year follow-up in January.
We considered transferring his care to a local transplant clinic, something they were willing to do, but decided to stay with Mayo Clinic. It has been a challenge at times with the need to have ultrasounds and low white blood count required injections. We are blessed with a wonderful local dr willing to help with these needs.

I am at nearing 6 months post LT and I'm similar to several others on here. I have basically had a great recovery since my transplant in April. I have had great labs (with a couple of scary outliers) and have remained active throughout. I have had a wonderful wife as my caregiver along with support from family and friends,

However, I developed pain down my right side. This has continued and moves through the area below my scar. Ultrasounds show no internal problems. They say that it is probably from the cutting of the tissue. I understand that it takes time and I am trying to take it as slowly as they want me too. However, please don't tell then that I have been "through a major surgery." I know that; and if I forget, my body will let me know in a hurry.

Im sorry for rambling!! I have great labs, good color, to much of an appetite, don't drink and try to maintain a positive outlook. However, it is discouraging when you hurt (at different places and different times) and no one really understands.
I want to thank everyone on this forum for their support. We will get through this together. God Bless you and our donor's families.

Hi Parmcat. Thank you for sharing ur joirney. My husband is told to be prepared for liver transplant due to his liver cancer. We didnt yet apply to waiting list. My question now is how often do you have to visit clinic after transplant is done. Is there like mandatory observation, tests u have to do every week, month or some in clinic procedures?! My husband is USA citizen, but we live in a different country. So my concern now do we have to stay in USA all the time or after transplant we can go back.