Transplant or not - rolling the dice

I was recommended for liver transplant due to two liver tumors, each around 1.5-2cm in size, and a liver cancer diagnosis. I had HEP C for maybe 30 years and have some cirrhosis. After nearly two years and taking all the qualifying tests TWICE I made the list February of this year. I have a MELD of 7 and thus a normally functioning liver at this time, but still have one tumor out of an original two that is only reducing very slightly in size after two procedures (the first of which did nothing). At the end of this month my exception points will come into effect and my MELD will be a 28 which would probably result in transplant offers within 90 days or so if the SRTR transplant calculator is accurate.

After such a difficult and long road to be listed, I should be happy, but find myself rather reluctant as it seems the "afterlife" of a transplant pretty much limits one in many ways - especially someone like me that has always been outdoors and lived around animals. Added to that, the hospital has these rules for "caregivers" such that are nearly impossible for a single working person like myself to meet.

I have researched the "odds" and it certainly does look like taking a chance on treating the cancer would be much diminished probability for a longer life expectancy than having a transplant.

I wondered if anyone on here matched my conditions somewhat as far as being in relative good health at the time with signs of liver cancer.

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    • @RobertsMax - So sorry to be away from the board for so long!

      I have been doing well with a few side things that were holding me back. Went back to work 3 days a week the beginning of April and have been back full time since beginning of May - complete with 60 mile round trip commute! I will start a new thread with my current status/challenges, but really have been the "poster child" of the transplant clinic. my last round of appointments was my 6 month and I was told by the surgeon that I'm doing better than just about anybody he has seen. 

      I am very fortunate to have a world class team at the clinic, my friends and family, this discussion board, and not to forget the good lord!

      • Really Nice to hear  from you Jacob!. Last i knew you had a bought with GVH and then you went quiet. Sounds like your team jumped into action and put the squash on the gvh. Your very fortunate to have beat that!  Sounds like things are rolling along nicely, VERY happy for you.   RC


  • Hi Subaka, Its been a couple weeks since we have heard from you. I know the first couple months after the transplant are hard and hoping your doing well.  2019 will be your year of recovery! When you feel up to it please check in and let us know how your doing.   RC

    • @rc. Thanks for your concern and sorry to drop off the grid. 3 days after returning home feeling great I developed grafvhost and have been back in since then. I hoping to return home next week.

      • Hi Jacob, Im very sorry to hear about your GVHD.  As it only occurs in .5 to 2% after L/T  the fact that it was diagnosed so soon is to your advantage. Can you tell us if it has affected your bone marrow,gut, or skin?   Did your team stop all immunosuppressive drugs?   Do you know what course of action they are taking?  How are you feeling? RC

        • To my knowledge it has only effected my skin with a big rash that is no longer inflamed. A few days after they diagnosed it the did a test revealing 95℅ of my own antibodies vs. 5℅ of the liver antibodies. I feel much better than when first readmitted but have some problem with tiny ulcers on my tongue. I am hopefully going home Monday-wednesday.

          • That’s GOOD news Jacob. Full blown GVH can be 25% host and 75% graft. Sounds like you dodged a bullet . Do you know if they adjusted your rejection meds (lower)to allow your immune system to fight the GVH ?  I”m glad your feeling better now and hope for continued improvement.  Hang in there buddy.  RC

            • Hi Jacob, Are you home yet? Hope things are going well for you. RC

  • Hi, I had a Clinical trial Transplant of encapsulated stem cells in my stomach and left arm on 8/1/18 at Johns Hopkins hospital Baltimore MD.I have lived with Type 1 diabetes for 30+ years and hypoglycemic unawareness was killing me.The surgeon was and is Incredible brilliant adept & thoughtful.Was I hesitant? Yes.Am I concerned taking medicine that may cause cancer?Yes.BUT Implants are very very important to medical communities and they WILL make sure your blood is taken often ti check for changes in white/red blood cells watching for cancer or other things.Youll have physicals looking at skin nails hair often and they will take care of you thoroughly.Was the surgery pain tough? Yes but it goes away. Don't let Fear Stop You.Balance the fear with the great outcome.Physicians and their transplant teams are with you.You are Not Alone.Doctors Don't Transplant to Fail.They do it for Your Successful Outcome.Best,Jeanne

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