@chattykathy, @hardaway3
Darlene, This sounds like a hopeful plan. Sometimes things just take a bit of time to get coordinated. I hope it goes well for you.
Ck, Thank you for your input. You advice is right on target. I appreciate your nephrologist input.

I do not have a local nephrologist because my kidney failure was acute due to my end stage liver failure. My local gastroenterologist (GI), however, has been in my life for a long time treating my liver disease. His practice is closing next month. With no one to replace him, there is no GI on staff at my local hospital. I am quite concerned in case something ever happens. He is going to meet with me and discuss a plan in a couple weeks. We do have several nephrologists, though.

Hugs and health to you,
Rosemary

When I fell out of trust with my first nephrologist, I asked around about one. I stated earlier that my brother was on dialysis in town where we both lived. I was seeing his nephrologist at first but, after my brother died, I became more sick and asked a lot more questions. I found a GI doctor first since I just learned about the liver disease then. When I saw the GI, he recommended a nephrologist for me. I actually wrote a letter of introduction to him and asked him if he would accept me as a patient. I was very fortunate to have found these two specialists. They are about 45 miles from where I live. The nephrologist travels to a branch office nearby and I see him there. They have been such a blessing in my life and continue to keep me well. They actually visit Mayo-Florida occasionally to learn about new advances in healthcare. We all have to be very proactive in our journey to good health.
Good luck and I hope you will be able to find a really good specialist to help with your aftercare.

God bless, CK.

My diagnosis for liver was NASH, but there was never a real diagnosis for the kidney disease. My Mayo nephrologist thought that since I was blind that the 3 diseases were related to Alstrom disease. I wanted genetic testing to discover if I had Alstroms, but Mayo did not perform that type of testing then.

I do not think there was a clear diagnosis for my brother's kidney disease either. He died after 12 years of dialysis and no liver disease was discovered. None of my other siblings (2 sisters, one oldest, one youngest) do not have any symptoms of kidney or liver disease.
Do any of you have siblings that are also struggling with the same type disease?
CK.

@chattykathy CK Thank you for this information. My current GI is actually moving to a hospital as an in-hospital care provider. Already he has referred my girlfriend to a GI who is 45 miles away for her liver condition. I will learn more in early May. I don't mind the 45 mile drive (that is where my original transplant hospital is) , but I am afraid because there is not any GI on our local town hospital staff. And with my past history with liver complications.....you know what? I don't have to explain this to you because I know that you know what I'm talking about.
I'll let you know how it goes,
Rosemary

@chattykathy My liver diagnosis was Primary Sclerosing Cholangitis (PSC). Progressive, no cure except transplant when it progressed. My PCP noticed irregularities in routine labs and referred me to GI. Tests, scans, biopsies, consults with liver specialist led to my diagnosis. This was around 2002. I was listed in Nov. 2008 at Univ.of Ky for liver but was inactivated from list Jan 2009 due to possible cancer in bile ducts. Referred to Mayo Rochester after unsuccessful attempt to get biopsy samples. 2 days before going to Rochester, I had to be transferred from my hometown ER to Univ of Ky for 5 days in ICU with sepsis and acute kidney failure. Emergency dialysis. Air ambulance flight to Mayo Rochester (800 miles) and 2 weeks in hospital. No cancer. Go ahead for liver transplant listing and evaluation. Now need kidney,too. Remain on dialysis until transplant. 11 weeks in Rochester. Received successful double transplant.

I am sorry for the loss of your brother. In addition to your grief, there must be a deep fear and questioning. It must be somewhat comforting to know that your sisters have no symptoms.
My disease, they think, has some possible autoimmune component. I have 4 brothers and 2 sons. None have any symptoms, as far as I know. My grandpa and my mom had some autoimmune things like psoriasis and vitiligo (nonpigmented white areas on skin). I have the vitiligo and that was one thing that caused suspicion about by my GI about this type of disease. We've been told that if any of them begin to have any liver problems, that they 'might' want to mention it to the doctor. The problem that I see is that , except for a special specialist, that the doctors don't know much about it.
Rosemary