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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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  • 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

    • Subaka, sounds like you are doing great. You may not think so at times, but if you are handling your meds and figuring things out a day at a time, you are doing great. Remember, this is a fairly long journey so don’t expect much from yourself. Healthy food, very light exercise (walking) and don’t worry. Your body will tell you when to worry, trust me, Congratulations and thanks for including us on your journey.
    • How’s it going Subaka?  i know things get pretty busy when your first home. I hope things ar going good for you and that your caregiver is working out, Any questions just ask!  How’s the staples holding?  I hope you saw my message on keeping them as long as you can.   Report back when you can.  RC

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