Re:Liver Transplant Centers in the Minneapolis Area

[Guest guest]

I already go to the "Transplant Clinic" at the U, for over 3 years now. I went every 3 months then changed to every 6 months. I have always felt comfortable although the U of M (Minnesota) is a teaching hospital and you will get very tired of telling your story over and over to an intern/fellow until your doc comes in.I also the same show on Kare11 as you did. Concerned, sure. Especially considering the little girl was listed at the U for months/years until they moved to Kansas City (I think?). She received a transplant almost immediately after. Remember this program was about the kids. Does this make it even worse?I am not listed yet (thankfully or unthankfully), but I have never felt "uncared" for at the U. As you remember the little girl is back for her after care at the U since they moved back to the cities. I am sure that someone at the hospital saw this show too. It sounds like someone in the administration part of the program wasn't stepping up on the details (keeping track of patient status). Situation resolved? Time will tell.The medical director (my doc) is (or used to be) a co-chair for UNOS and I just don't feel they would forget about their patients. Especially the seriously ill ones. You will see. Even though there is a steady flow of patients in and out. They do very well. They get to know you and you them. I do have a good friend (actually my best friend's dad) that recently passed away from throat cancer. He had gone through a liver transplant with the same doc at the same transplant center. He was always happy with them and our doc. His family was very happy with the care he received as well. From the Doctors, Transplant co-ordinator ( J.), the nurses and schedulers. They take this burden very seriously. You will see the same faces over and over. From when you are jaundiced and feeling lousy, to the good times where you feel "why am I here?", "I am just fine". Tell them you saw the show and your new concerns. I have never felt intimidated asking a question to anyone there. I always get an explanation. They have drawn me pictures to help me understand. They give you a tour, introduce you around, they familiarize you with what happens in the process to make you feel more comfortable. http://www.fairviewtransplant.org/liver/Take a look at the wall to your left as you enter the clinic. They have a lot of stats right were you can read them.1964 - First human auxiliary liver transplant in the world1964 - First liver transplant in MinnesotaOne of the oldest liver transplant programs in the world1980 - First liver/kidney transplant in Minnesota1990 - First liver/pancreas transplant in Minnesota1990 - First liver/intestinal transplant in Minnesota 1996 - First living-donor liver transplant in Minnesota - 1996Living donor transplants performed in both pediatric and adult recipientsSmallest liver transplant recipient weighed 6kg at transplant So yes, going to the Mayo is also an option. Others on this group will tell you it is the best option. People come from all over the world to go to Mayo. A second opinion never hurts and we are lucky that we are only a few hours away. One thing that wont change unless you change it is the location. Check the numbers, see how many transplants occur at the U compared to other regions of the country. If you like the odds better in another region and think the road to transplant will be shorter, you can always move to another region. I am going to have to stay in this region for my kids to see their dad every week. My job is here. My house, my neighbors, my wife's family and a few other reasons too. I am here to stay and I am happy about that. I don't even know the recent transplants, although I did the research when I started this journey.I do have faith in the University Medical Center. I am just a patient, just like you. What has also helped me from when I was diagnosed was finding this site soon after being diagnosed. There are others (wise ones) like Arne (Minnesota too), Ian, Barb, and countless others that read and participate daily to help others that are in the same position as themselves or their family members.They talked me through the "panic" stages of being diagnosed with PSC. They still are. You have concerns, issues, fears, share them with everyone here. They can and will help you through this. Read and be a lurker if you are uncomfortable participating. Knowledge is power. Have a great day! Keep the faith! in Minnesota

[Guest guest]

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> in Minnesota

>

Thank you for the info – it means a lot. I was diagnosed with PSC when

I had my Colon removed in 2003 due to UC. The prospect of a Transplant

has always been there but with the meds, it has been pretty much free

of problems until the last 18 months. I was happy that Health Partners

was sending me the U of Minnesota but the story on KARE 11 did cause

concern. I will be asking lots of questions when I have my first

appointment at the U and will be an active member here. I think

finally hearing my Doc say it was time to start the process really

threw me for a loop. But the more I read, the easier it is becoming.

Thanks for your time and the response.

Jeff in Apple Valley

[Guest guest]

Hey Jeff, great to see you made it here and got an answer from

someone with experience! I think it's worth a trip to Mayo just to

see them, yanno? Second opinion and such, and let them know when

making your appointment that you are 'interviewing' them for the time

when (if!) transplant comes. Surely they would give you the tour and

introduce you to some transplant team folks, in that case.

Genevieve

UC 1983, J-Pouch 1999, PSC 12/07, CCA 10/08, in the waiting room for

my first chemo treatment RIGHT NOW. Tx next year after chemo and

radiation is finished.

>

> >

> > in Minnesota

> >

>

> Thank you for the info – it means a lot. I was diagnosed with PSC

when

> I had my Colon removed in 2003 due to UC. The prospect of a

Transplant

> has always been there but with the meds, it has been pretty much

free

> of problems until the last 18 months. I was happy that Health

Partners

> was sending me the U of Minnesota but the story on KARE 11 did cause

> concern. I will be asking lots of questions when I have my first

> appointment at the U and will be an active member here. I think

> finally hearing my Doc say it was time to start the process really

> threw me for a loop. But the more I read, the easier it is becoming.

>

> Thanks for your time and the response.

>

> Jeff in Apple Valley

>