Liver transplant - Let's support each other

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

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.

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

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

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 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

Mr best wishes to your husband on getting the TIPS procedure. Please let us know how things go for him. And, thank you for being a wonderful caregiver!

2022 has already been busy in this group. I might need to add some extra chairs around our virtual table chat!
This morning, I decided to bring you who posted in January together to meet each other and to extend invitation to anybody reading this! You are always Welcome.

@btg, How's the planning for testing going? Has it been scheduled yet?

@marinab, Your husband was in the process of deciding on the TIPS procedure. Has he made any decision? How is he doing?

@lcd, Just checking in to say, Hi. Thanks for the positive vibes! Any updates that you want to share?

@digibson, I hope that you are doing okay. What is the transplant team saying about a liver transplant in your future?

@cybele65, How are you feeling after your recent TIPS procedure? Are you noticing any decrease in ascites

@lauraloo81, I'm happy that you have recently joined us on Connect! Do you have anything fun planned for today?

@athenalee, Thanks for sharing your wisdom and positivity to the discussion.

Me - What am I up to: I had my routine labs drawn yesterday. A treat that my husband and I allow ourselves is a stop at local bakery!! Yummy way to start yesterday Valentine's Day. Did you know that yesterday was Donor Appreciation Day?

Hi Rosemary, sorry so long to get back to you. I have two tests here left at home as well as some dental crowns to be finished. After, we’ll meet with my liver Doc here and see where are. Hope to set sail for Mayo in April, God willing! I feel great, which is good. The other good news is that with all the tests I’ve already been through I am otherwise very healthy. Strong heart, lungs and kidneys are great. Hope this weighs in my favor but I have no idea. We shall see!!

Thank you for reaching out, very much appreciated.

Bryan