Liver Transplant

Posted by Karen51 @karen51, Mar 18, 2012

I am approaching the year anniversary of my liver transplant. It took two months for me to get well enough to go home. Previous to my transplant on May 4th 2011 I had broken my back and then my hip. Still had stitches in hip when I went in for the transplant. 2011 started with a long stay at Mayo, from Jan. to the end of Jun I was in my home for only about three weeks total. I still get tired easy and still have a low platelet count. BUT thanks to my exemplary transplant surgeons and staff I am alive!

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Happy Transplant Anniversary!!
I share your joy and your respect for the transplant surgeons, and the entire transplant staff at Mayo. I am about to celebrate my 3rd transplant anniversary.
I, too was unable to be active prior to transplant, but I found that the further out I moved from the surgery, the stronger I became. This continued even after my 1st year.
Sounds like you have been through a lot in addition to your transplant. But now are home!! WOW! Now you can start to actually plan to have future…Do something special to celebrate your transplant anniversary!

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Congrats!!! As someone newly diagnosed with the need for a transplant, I look forward to the day that I’ll have my one year anniversary, too. Blessings to you.

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Yea for you! I too was at the Mayo for months after my liver transplant. Transplanted May 24, 2008. Went home at the end of August. Unfortunately, I was so sick at the time of my transplant I was in the hospital for 2 months before the transplant. Meld score of 43. (The additional 3 points were given because of hepital -renal syndrome – my liver caused my kidneys to fail. )
I had to rehab for a month to walk again and then was treated for the kidney failure.
I am back to most of my old activities again. I work a full day and have started singing in a mixed chorus to raise money for various charitable organizations.
I still have chronic kidney failure, not bad, not on dialysis, and doesn’t interfere with anything I want to do!

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So how serious was your case, what stage were you? How long we’re you waiting on the transplant list for?

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The reason I ask is because I am a college student and my father has had liver cancer for over 7 years stage 4. On the transplant list and doesn’t know what will happen next. The doctors can never make any promises. It’s nice to know some people that have stories

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@anon68359010

The reason I ask is because I am a college student and my father has had liver cancer for over 7 years stage 4. On the transplant list and doesn’t know what will happen next. The doctors can never make any promises. It’s nice to know some people that have stories

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It did not take very long for Mayo to find a liver for me, just a couple of months. That said I was willing to accept different options. My donor liver was involved in a criminal activity that made it a high risk liver. There are other reasons a donor liver can be considered high risk. I was also willing to do several different types of transplants. Mayo can explain better than me what those are, I would liked to have done a partial transplant but all my siblings were just a year or so to old. I was very lucky it happened so fast, it is usually a longer wait. I was stage 4.

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@anon68359010

The reason I ask is because I am a college student and my father has had liver cancer for over 7 years stage 4. On the transplant list and doesn’t know what will happen next. The doctors can never make any promises. It’s nice to know some people that have stories

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Oh….good luck to your Dad! I know he will be just find under the remarkable teams at Mayo.

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@anon68359010

The reason I ask is because I am a college student and my father has had liver cancer for over 7 years stage 4. On the transplant list and doesn’t know what will happen next. The doctors can never make any promises. It’s nice to know some people that have stories

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Thank you so much for your information. It’s hard to understand at this age. My dad kinda acts like there’s nothing they can do anymore so it can be discouraging. But I appreciate your words of wisdom. Hope you are doing well

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@anon68359010

The reason I ask is because I am a college student and my father has had liver cancer for over 7 years stage 4. On the transplant list and doesn’t know what will happen next. The doctors can never make any promises. It’s nice to know some people that have stories

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You are welcome. There is a point where there is not a lot medication can do. I was diagnosed with end stage liver disease in 1997. I kept on going for almost 14 years thanks to great medicine and great care. Starting in late 2010 my liver began to quickly fail. I was going to mayo ever week for paracentesis. My Meld score was increasing. Mayo usually waits to one reaches a particular Meld score before activitily seeking a transplant. If your dad has talked to Mayo transplant surgeons he should know all this and you should too. I know they will do every thing they can for him.

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@anon68359010

The reason I ask is because I am a college student and my father has had liver cancer for over 7 years stage 4. On the transplant list and doesn’t know what will happen next. The doctors can never make any promises. It’s nice to know some people that have stories

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Waiting, being sick, and facing uncertainty are physically, mentally, and spiritually exhausting. Know that I will pray for strength for your dad and for you as you make this journey.
Rosemary

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I have been told I need a liver transplant. I have been diagnosed with G.A.V.E Disease last month before that I was diagnosed with fatty liver and starting of cirrhosis back in 2016. When I started throwing up blood in May they put a shunt and tips in my liver. They have referred me to a transplant hospital, but they haven't sent my paperwork from here. I want to get a second opinion but I don't know where to go. Any suggestions

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@tmmmrlts

I have been told I need a liver transplant. I have been diagnosed with G.A.V.E Disease last month before that I was diagnosed with fatty liver and starting of cirrhosis back in 2016. When I started throwing up blood in May they put a shunt and tips in my liver. They have referred me to a transplant hospital, but they haven't sent my paperwork from here. I want to get a second opinion but I don't know where to go. Any suggestions

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@tmmmrlts, I want you to get the best care that is available to you.
I was able to be evaluated and listed at my regional transplant center in central KY for my liver transplant in 2008. And then, when I needed specialized care, it was the director of the transplant center who contacted and arranged for me to be transferred to the Mayo Clinic in Rochester MN, where I was treated and where I got my transplant. I would recommend the Mayo Clinic to anybody who is looking for the best transplant center. However, distance would have been a barrier for me if not for the emergency/life-death status of my condition.

Have you been successful in tracking down the status for who is sending your your medical records? It is highly possible that someone has sent them and they are 'lost' in the cyber world. It is also possible that they did not get sent. I suggest that you make a personal visit to the records department of your medical center and get paper copies of everything so you can hand deliver if necessary.

I have located this Blog post > Transplant>Three Reasons Why Getting a Second Opinion Is Worth It
Here are Three Reasons Why Getting a Second Opinion Is Worth It from the Transplant Blog on Mayo Connect.
1-To make sure you have the right diagnosis.
2-To get another potential chance if you were turned down.
3-To be at a center of expertise for your specific condition.
Here is the link to the full article:
https://connect.mayoclinic.org/blog/transplant/newsfeed-post/three-reasons-why-getting-a-second-opinion-is-worth-it/
You can also contact the Mayo Clinic Transplant Center for more information about getting second opinion there-
Contact information for Transplant Center FL. MN. AZ
https://www.mayoclinic.org/departments-centers/transplant-center/contact-us/
What is your current doctor doing to support you?

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