This and That and Talk - My Transplant

@autoimmunecirr, Welcome to the Connect discussion about organ transplantation. I received a combined liver/kidney transplant in 2009 at the Mayo Clinic Rochester. Like you, I endured the struggle with energy along with other symptoms. It is my understanding that each one of us can exhibit a variety of different symptoms with liver disease (even if we have the same disease). Yes, it is hard to predict what could lie ahead. As patients our best option is to follow the advice of a good medical team, and to do everything in our own power to educate ourselves from reliable resources.
I was critically ill prior to my own transplant. Immediately after my transplant I began to feel better. It was as if someone had flipped a switch and everything began to work again. I count everyday as a blessing and I am forever thankful to my anonymous deceased donor.

I would like to share the link to the Connect Transplant Pages. No matter where you are in the transplant journey, this is an excellent link to information and resources. I refer to it often and especially enjoy the Newsfeed section.
https://connect.mayoclinic.org/page/transplant/

Since you are getting ready to undergo the pre transplant evaluation, I invite you to a discussion: Transplant Evaluation - What to Expect
https://connect.mayoclinic.org/discussion/transplant-evaluation-what-to-expect/

I will be looking forward to hearing more from you along the way. What are some questions that you would like to ask?

@abel

I had mine done out of my home state and i paid for travel, meals, hotel, etc then submitted a claim package to my health insurance company for reimbursement. Check with your insurer before to see if anything is covered or reimbursable. And to know what records to keep. Good luck. @abel

@autoimmunecirr I had my liver transplant in September 2016. It went great. Sure, some pain and discomfort in the first few days but I was doing very well quickly after that. When I went for my first post-transplant visit they were amazed at how well I looked, and I felt great too.
There is a profile of my experiences somewhere within this forum but frankly I am not sure how to get to it, maybe of the mentors could help with this. It goes into some detail about my pre-transplant and post-transplant experiences. If you have any specific questions though please feel free to ask.
For your MELD to be 27 so quickly is surprising. Do you know what caused this? My cirrhosis was caused by fatty liver (NASH). I am in the New England area, had my transplant at MGH in Boston. At that time the typical transplant was taking place in the low 30s but I was able to get a liver when my MELD was 28. From what I have read that is the typical MELD now for transplant in this region.
As a post-transplant patient the biggest problems are that the immunosuppressants cause me some lower digestive problems, and of course I have to be very careful of circumstances that could cause infections. In December of 2017, I caught Legionnaire's Disease, presumably at a function. I am sure that was because of my lower immunity since no one else was infected. As a result I am much more conscious of my vulnerability, and I try to be aware when we travel of where other transplant centers are, just in case. Hospitals that do transplants are more aware of the limitations of a post-transplant patient.
Overall though, I have to say "life is good". I feel great, and do everything.
JK

Here it is!

Member Q&A with JK
https://connect.mayoclinic.org/page/transplant/newsfeed/member-qa-with-jk/

@wendydvb - I see that you have recently joined Mayo Connect, and i want to say, "Welcome"!
Congratulations on your transplant. Your situation about 'out of home state' is what I also experienced. I had actually forgotten about the health insurance reimbursement that I received for the 1st year, until you mentioned it. My transplant (liver/kidney) was nearly 10 years ago, so maybe that is why it slipped my mind.
I was transported out of ICU from Kentucky to Rochester MN for treatment, and ultimately for my transplant. I return to MN annually for my checkup and now the payments are on me. My routine labs are drawn locally. My local doctor takes care of my routine care, and is a phone call away from Mayo if needed.

How are you doing?
What kind of organ transplant did you have?

@autoimmunecirr Here is the link I mentioned, thanks to Rosemary. Please keep us up on how you are doing and how you are progressing. I just re-read your post. I too was very tired all the time. I got to the point where I was taking two naps a day. My blood work was being done frequently and my hemoglobin and hematocrit were low so I am not sure if my fatigue from that, or simply from the cirrhosis, but whichever, it was tough. Near the end, I literally had to stop to take a breath when ascending the stairs.
https://connect.mayoclinic.org/page/transplant/newsfeed/member-qa-with-jk/

@rosemarya
Rosemary, how do I go about finding links like that?

JK

Do you see the magnifying glass top right? That to search for a topic.

@rosemarya I had a kidney TPX at Mayo in Rochester, MN too. 8/16/18. My sister was my live donor. Such a blessing. Feeling better overall but still have a lot of pain in my joints and muscles. Pretty sure its the meds, they are still adjusting the levels. I also get my labs done by my local dr. I'm going back for my 4 mo check up and biopsy in mid December. A little nervous about the biopsy. Had one a few years ago and it did not go well. Loved Mayo!

@wendydvb Congratulations on your transplant and how wonderful your sister was able to donate to you! What kind of a protocol you are on, is it non steroidal? Meaning no Prednisone as a medication. That is what my husband's transplant team used for the longest time and that is why they had to biopsy his new kidney. He has been on prednisone 2.5 mg once a day for the last several months due to low white blood count, but they will be titrating him off of that in the next few months. I think that muscle soreness and discomfort can be a normal sign due to your body getting used to activity again and the introduction of medications.
Ginger