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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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  • So todays the BIG day.  Your in such good shape going into this that your outcome will be well above average.Your story mimics mine, I had C for 38 yrs, F4 and well compensated. I felt great with no complications and  failed 2 HCV treatments. My fibroscan was 37 and my MRI”s started showing 1.5 cm HCC tumors.  They just kept coming, we would RF them and we would TACE them and we would ablate them but new ones kept showing up. My team just kept killing them to keep me on the L/T list. Yes its going to be hard after L/T, Im 15 months post and just now feeling somewhat like I did the day before my transplant .Those first few days post L/T will go by so fast, there so much going on,they keep you medicated and comfortable. You made the right decision going ahead with the transplant. Ends stage liver failure is not a pretty picture.

    Wishing you the best of your new lease on life!    RC

  • All,

    As I read these latest replies I am lying in the hospital with my impending transplant operation about 8 hours from right now. I hope to keep you all posted tomorrow!

  •  The reason you’re meld score jumped up so high, is because if the tumor size reaches 5cm, you will be off the transplant list until three months after the tumors have shrunk. I believe that’s the structure that is set up for us in Florida. As far as trying to find someone to assist you, if you don’t have family, consider asking the hospital if there’s any post transplant’s that will Help you. Once you are well enough, many times there is transportation to and from the hospital for free. But it is true, one never knows what their needs will be as one never knows how the transplant will go.  With the tumor is growing as minded, it is a matter of time. My doctors explained that there are many tumors once they start growing however they are very tiny. But they will grow up. They will come. I know you feel well now and the tumors are not infringing on your life whatsoever that you don’t want to be in a position to Nnot be able to shrink tumors and be off the transplant list because they have grown too large. You may feel better now, than after the transplant, but you will be here for your children. If your children are young, this is a predicament but if they are older, they could be a great help. God bless you with your decision.

  • I just had my 19 year anniversary in October of my liver transplant and I spend a lot of time outdoors in all those years. I am 71 soon to be 72 but keep a positive attitude and an pro-active on things that keep me mobile and active. I play golf, sometime walking 9 holes. 

    One of my last, best friends has cancer + Hep-c and the VA refuses to give him the Hep-c treatment. Basically they are just waiting for him to die. So cheer up as thing could be much worse. You don't have to deal with the VA. ;-)

  • I am a transplant recipient as of 3.5 months ago.  I am 53 years old and did not have liver cancer.  But like you, I was in relativley good health.  My MELD score was 14 but slowly improving.  On the other hand, I had ascites and was getting drained 7-9 liters/week.  It's something I could have kept living with, but knowing I was never going appreciably improve and my overall health would likely get worse, I decided to get on with living.  And the only way to do that was to get a transplant.  If I had liver cancer, it would have made the decision to get the transplant even easier.

    You make a good point about lifestyle changes post-transplant.  It's absolutely true that things have to change.  But that's not always a bad thing...

     - Outdoor activities are much more of a challenge due to the immunosuppresants.  But that doesn't mean you can't enjoy the outdoors.  It just means you have to wear appropriate clothes/hats and become very imtimate with SPF 50+.  

     - Caregivers are vital, but the degree to which you will need one will can vary widely.  For me, I didn't need a whole lot of help.  But then again, I was only in the hospital for 5 nights, so my procdure went really well, and I had no rejection issues at all.  I did need my caregiver for a couple of weeks change the dressing on my drain holes daily and to taxi me around to the lab and doctor appointments.  Your transplant team has certainly told you that your caregiver needs to be around 24/7 for much longer than that.  They are right in telling you this.  Plan for the worst, hope for the best.  But my reality is that I needed 10 minutes of help 1x per day for 2 weeks.  I could have used Uber for the taxi service.

     - I had a dog prior to transplant and still have that dog today.  I have made absolutely no changes with regard to my pet, and it has not been an issue at all.

    A couple of other life changing things I've experienced...

     - As a transplant recipient and stuard of someone else's organ, nutrition and exercise are no longer an option  I now take them extremely seriously.  I should have been doing this all along, but I was not.

     - Also, in my opinion, strict adherence to medications in terms of what you take and when you take them vital.  Questioning what you are taking is fair game, but at the end of the day, your transplant team has just a bit more knowledge and experience than any of us.

    At the end of the day, I view/viewed the entire process as healing, starting with getting sick and ending with the post-transplant life.  The way I saw it and continue to see it, the process has been nothing but positive, and I think and hope I am a better person for it.  

    Best wishes to you.

    • Thank you very much for your reply. It does help to understand a liittle better what post-transplant life will really be about, even if we are all different in the way we react, heal, etc.  I have the longer term care giver team together and hope it will not be TOO long term as they all have lives and jobs and live out of town.

      • Hi Subaka, Its been a couple weeks since your transplant and I know how busy it can get. I hope your doing well and want 2019 to be your year of healing. When you feel up to it please check in and let us know how your doing.  RC

        • Subaka, I hope your doing ok- At last word you had HVG going on and we haven’t heard from you in several days. Thinking about you and just wondering how your doing.  RC

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