Liver transplant - Let's support each other

Thanks Silverwoman. That is encouraging but I've talked to my Hepatologist about transplant and I have some heart issues that she felt were too risky. I've worked with my Cardiologist and have some of those issues treated. I was tumor free but now have another liver tumor that is causing tumor thrombosis in a branch of the left portal vein. I'll have Y90 again on the new tumor but am not clear on what they do about the tumor thrombosis. In discussions with the Hepatologist and Interventional Radiologist about treatment. I didn't want a transplant before but this is scaring me into wanting one if I can qualify. THanks, DIane

To all of you potential liver transplants who are talking about aging out: Good news! Stop worrying about aging out. I am 3+ years-post-liver transplant and when I first arrived at Mayo I, too, was of the belief that at 73 I was close to being too old to be considered as a good candidate for transplant. I also was worried that if I got a liver, that I might deprive a younger person awaiting a liver who might have longer to live after transplant and perhaps young children to raise. The Transplant Team in Jacksonville dispelled that fear. Basically they said, "That's not the way this works." The important factors in a patient's eligibility are physical condition and a lack of medical problems of such a serious nature that they would preclude a successful transplant. Post transplant, while I was recuperating at Gabriel House, I met at least one liver patient awaiting transplant who was over 80 at that time and who eventually got his new liver and did well. Perhaps this is a Mayo standard, but I don't think that the organizations who govern transplant selections are discriminating on the basis of age.

If you only have one tumor have you talked to them about Y90 embolization. I got rid of three of them that way.

Hello Diane,
I am in a similar situation. My MELD score is 8 and I being monitored for tumor growth although I have not yet had any treatment as my tumor is 2mm from qualifying me for transplant. I go for my MRI again next month and don’t know if it will be time to decide on some kind of treatment. I am also in my late 60’s and wonder about aging out. It is kind of nerve wracking to be constantly wondering what is next. I have shifted my focus to appreciating each day and I am so thankful for feeling reasonably well especially after reading what so many others are dealing with. I am glad to know you are going through a similar stage and feeling the same about aging out.
Susan

To all of you potential liver transplants who are talking about aging out: Good news! Stop worrying about aging out. I am 3+ years-post-liver transplant and when I first arrived at Mayo I, too, was of the belief that at 73 I was close to being too old to be considered as a good candidate for transplant. I also was worried that if I got a liver, that I might deprive a younger person awaiting a liver who might have longer to live after transplant and perhaps young children to raise. The Transplant Team in Jacksonville dispelled that fear. Basically they said, "That's not the way this works." The important factors in a patient's eligibility are physical condition and a lack of medical problems of such a serious nature that they would preclude a successful transplant. Post transplant, while I was recuperating at Gabriel House, I met at least one liver patient awaiting transplant who was over 80 at that time and who eventually got his new liver and did well. Perhaps this is a Mayo standard, but I don't think that the organizations who govern transplant selections are discriminating on the basis of age.

Thanks for keeping tabs on everyone Rosemary. I do think about these people and wonder how they are.

As for me I had a CT today to track the liver tumors. Praying all is still well, for almost a year now (since my 2nd Y90 shoot) they appear dead on the scans and no new ones popping up. I have liver labs on Thursday (CBC, MELD Score, AFP tumor marker). So far they are not recommending transplant saying they would do more harm than good. In fact I'd like to put this question out to the group. I'm a little worried because I turn 70 in August and at 70 you kind of age out. My liver enzymes are real normal, MELD score it 7, have small varices but no bleeds, ascites well controlled with meds. I could qualify for transplant because of the cirrhosis and cancer. But with all that said I would have to go for transplant now or never because of the age thing. Could it all go bad at next year. I kind of operate with the opinion as long as I don't do anything to further damage my liver it will all stay the same. I was able to clear the HEP C that caused the damage and quit what little drinking I was doing. Just wonder ... hum.

What regular labs are you having taken Rosemary and how often do you get them. Please let us know your results. Do you ever get over the frustration of testing then waiting on results? There's always a bit of fear waiting for the results. I do know my condition is in God's hands and do believe if faith, not fear and that helps.

Thanks again for checking in on everyone! You're so kind hearted.

Diane

Thanks for keeping tabs on everyone Rosemary. I do think about these people and wonder how they are.

As for me I had a CT today to track the liver tumors. Praying all is still well, for almost a year now (since my 2nd Y90 shoot) they appear dead on the scans and no new ones popping up. I have liver labs on Thursday (CBC, MELD Score, AFP tumor marker). So far they are not recommending transplant saying they would do more harm than good. In fact I'd like to put this question out to the group. I'm a little worried because I turn 70 in August and at 70 you kind of age out. My liver enzymes are real normal, MELD score it 7, have small varices but no bleeds, ascites well controlled with meds. I could qualify for transplant because of the cirrhosis and cancer. But with all that said I would have to go for transplant now or never because of the age thing. Could it all go bad at next year. I kind of operate with the opinion as long as I don't do anything to further damage my liver it will all stay the same. I was able to clear the HEP C that caused the damage and quit what little drinking I was doing. Just wonder ... hum.

What regular labs are you having taken Rosemary and how often do you get them. Please let us know your results. Do you ever get over the frustration of testing then waiting on results? There's always a bit of fear waiting for the results. I do know my condition is in God's hands and do believe if faith, not fear and that helps.

Thanks again for checking in on everyone! You're so kind hearted.

Diane

I am so happy that you survived that horrible ordeal. I do not mean to sound ungrateful in these posts, I am just very frustrated. I am aware that one of the main reason for a TIPS procedure is to combat varices and bleeding. That was not why I had mine, I have low blood pressure and had no sign of varices. The reason I had mine was because of large volume ascites. I was getting drained once a week of about 8 liters per week. (sometimes up to 10 liters) The transplant team decided that TIPS was my best option as it could stop the ascites completely. My frustration is that now I still have ascites plus edema that I did not have before.

I am so happy that you survived that horrible ordeal. I do not mean to sound ungrateful in these posts, I am just very frustrated. I am aware that one of the main reason for a TIPS procedure is to combat varices and bleeding. That was not why I had mine, I have low blood pressure and had no sign of varices. The reason I had mine was because of large volume ascites. I was getting drained once a week of about 8 liters per week. (sometimes up to 10 liters) The transplant team decided that TIPS was my best option as it could stop the ascites completely. My frustration is that now I still have ascites plus edema that I did not have before.

@cybele65, I nearly died from bursting varices that I had tied off. These were repaired. A day after I was released from the hospital they burst again. I was again helicoptered up to the regional hospital, intubated, and went through hours of surgery to try to stopped the upper GI bleed caused by cascading bursting varices. I was brought back to ICU and awakened long enough to be told I would bleed to death if I didn’t have the TIPS procedure.

The procedure saved my life. It does much more than divert fluid. It stops varices from forming in one’s esophagus that may burst and cause internal bleeding.