This and That and Talk - My Transplant

I am going for a liver consult that same week. Liver transplant and disease is not new to my family. Also a good friend received a pancreas/kidney a year ago. I am not a medical professional but I can lend you an ear or a helping hand. I live about six hours from Rochester so we are driving up that Sunday. The best caregivers have patience, let their partner vent, and just be there for them. It is a different journey for everyone. I plan to have my husband join me for some of the meetings but I don’t think he needs to sit in the hallway while I have a test. Listen to your wife- be there when she wants you to but give her space sometimes. Don’t burn yourself out. This isn’t a sprint but a marathon. we can compare appts and if any of ours coiincide I would be glad to sit with her until we get called. You are not alone. If you haven’t downloaded the app do it if you can. Make your hotel arrangements. Look atthe map in the packet.

My wife got diagnosed with PH1, there is no cure and LKT is only option.
We have evaluations and registration appointments coming up in Mar-12, 2018 at Rochester. We live north of LA.
We are scared and I am super nervous about how I can do the best as caregiver. Looking forward to you and this group to show me the path and help along the way.

@huffman1835, I want to re-welcome you to Connect. And I am especially thrilled to read in the Kidney Bladder Group that you received your kidney transplant in 2013!
I would like to invite you to join in any of our conversations. I especially welcome you in anything related to kidney transplant. I could really use your 'expertise ' in that area.
I have a liver/kidney transplant (2009). Liver took out the kidney in acute kidney failure. So I have a concern to share with you. I never had uti's before my transplant that I can remember. And now, since my transplant I have had several. In fact getting over one now.
What is your experience about this?
Rosemary

@keggebraaten, Amazing!

@rose999, Thank you for sharing this. And continued blessings to your son and the baby who share an amazing history.

I am happy to hear that you have an appointment next month at Mayo. I hope that you find the answers you are seeking. Let us know if you have any questions for us as you prepare for your visit.
Rosemary

@rose999
Thanks for the great info and for the question. At Mayo we do perform domino transplants occasionally. Split liver transplants are also performed, but our surgical director tells me that nationwide, these only account for less than 1% of all liver transplants. UNOS has donor criteria that needs to be met before the doctors can consider splitting the liver from the donor, and both pieces of the liver have to be large enough to be safe for both recipients.
I wish you the best with your evaluation. You are right - exciting times are ahead!
-Kristin

I have an appt coming up in March at Mayo. I received some interesting literature yesterday. I had never heard of a domino liver transplant. Short explanation: a person has Familial amyloidosis that csuses their liver to put out a protein that long term causes problems. When they get a transplant an older person could receive their faulty liver because the protein doesn’t cause problems for several years. So that starts other questions: my son received 1/2 liver with an 8 month old baby receiving the other 1/2. Their recovery has been amazing- do they do split liver procedures often? Last-research is underway for an artificial liver. At first it will be a bridge to a transplant. Exciting times ahead.

@italygirl330 I am impressed that your doctors diagnosed cirrhosis with so few symptoms. I had those two, plus some HE episodes, was always cold, and my hands were shaky yet it took a year and a half to get a diagnosis! Did your symptoms lead to the biopsy? My definite diagnosis was made after a CT scan which was done when they discovered high ammonia levels in my blood. My fatty liver was never diagnosed before that.
I presume the referral you are referring to is to a hepatologist. That was my next step after diagnosis. She figured that I had cirrhosis for about 10 years. Some hospitals operate differently and you are immediately referred to the transplant area.
After seeing the hepatologist I was rated and put on the list to be a transplant candidate. Frankly I was not sure that I wanted a transplant, it sounded scary, but eventually I felt less well so when the opportunity came and they had a liver for me I was happy about it. I had the surgery, had a rapid recovery, and felt great in a relatively short amount of time. Sure, there are some inconveniences from the immunosuppressants but they are all manageable and not too bad at all.
I hope when you do see the next doctor that you will end up as a candidate and eventually have a transplant, assuming it is cirrhosis and there are no other options. I live in NH about 55 miles from Boston so I used Mass General as my transplant center. They were great but I understand that Boston is an area of high demand so the MELD score (you will be given a MELD when you see the transplant doctor or the hepatologist) generally has to be in the 30s before transplant occurs but I was fortunate, mine was 28. There is a service, “Compare Transplant Centers” that will help people find a center where they might be able to get a transplant with a lower MELD than in their home area. I did not use them but did my own research and was about to reach out to Mayo to get listed but happily I didn’t end up needing to. I had already spoken to them and it sounded promising. Compare Transplant Centers posts a lot on Facebook so if you are on there you might want to sign on to get their posts.
SRTR is also a site that has statistics on every transplant center so it is worth looking at.
I hope things work out well for you. Please keep us posted, and if you have any questions feel free to ask.
By the way I like your name. We have been to Italy two times and hope to go one more time. My husband’s father came from there.
JK

@italygirl330, I would like to welcome you to Mayo Connect. I see that you have joined today. We are happy to have you be part of our conversation. On Connect, we are also patients, and we will do our best to support each other and answer questions based on our own experiences. We are not medical providers and cannot diagnose, but we can direct you to reliable medical resources. It is perfectly normal to be scared and fearful about prognosis. I want to urge you to focus on whatever positive steps might be available to you to provide the best possible outcome
I want to share this link to Mayo Clinic's educational information about fatty liver disease.
https://www.mayoclinic.org/diseases-conditions/nonalcoholic-fatty-liver-disease/symptoms-causes/syc-20354567
I would like to introduce you to @contentandwell who also had fatty liver disease.

What kind of referrals are you are you considering? and When?

I look forward to learning more about your condition, and hopefully being able to provide some helpful input.
Rosemary

I just was diagnosed with cirrhosis.
My tests had showed prior elevated enzymes. Not to bad. The biopsy I had gave me stage 4/4. Only symptom I have is fatigue with low platelet reading.
I had a fatty liver. For many years. And just kept an eye on it. With my type 2 diabetes.
I am in the process of referrals.
Scared I will be told I do not have a good prognosis. I am almost 48. I have many years to live and I have fun. So Scared.