Yes he is on the transplant list. From my understanding since being treated for the liver cancer (hcc) points were added to his MELD score which has pushed him up on the list. Yes he has been experiencing this over a year now, I just wish he could get some relief from the pain.

@hogan_g1937, As a recipient, I know that my husband, also, struggled to see me getting sicker with the seemingly non-ending wait. There were many times when we just held on to each other, and cried. (and people told us how brave we were) But our time did come. Your time WILL come. Then you can begin to live "Happily ever after".
Is there anything that can be done for the pain while he is going thru this?
Rosemary

Hi @rosemarya he is prescribed pain meds tramadol that don't seem to be working well. They don't want to prescribe anything stronger in fear that it will harm the liver more. So for now he just deal with the pain best he can.

@hogan_g1937 Where is he on the list now? I too had malignant lesions in my liver. When they discovered them the doctor basically said it was good news and bad news. Good because it moved me up on the list by a few points, bad because I had to go through an ablation to get rid of them.
Thankfully the ablation seemed to take care of them, although they did discover some lingering malignancy when they dissected my liver so I will need to have MRIs for a while to make sure they did not metastasize. I choose to believe that they are all gone now.
JK

When he had his TACE done 12/27/17, it essentially removed one of the two cysts/tumors that he had, but one of them has a small amount of residual left that needs to be removed. The committee prescribed another procedure, called an RFA (radio frequency ablation) for this remaining portion of the tumor. That is what is going to be done. This radio frequency intervention essentially “burns” up what’s left. This residual being “left” after initial therapy happens in the process of getting rid of the tumors, it’s not an unusual event to have a patient go for further intervention(s) until it’s all removed. What ultimately happens is there is no residual left, and sometimes there is a small residual cavity present that can be seen on the scans. Yes he has been moved up but we don't know how far. I guess we will find out after this next procedure which is scheduled on the 27th of this month.

Good morning, his doctors stated that due to the HCC he was moved up on the list. We don't know where he is just yet. He is going in to have another procedure on the 27 of this month, When he had his TACE done 12/27/17, it essentially removed one of the two cysts/tumors that he had, but one of them has a small amount of residual left that needs to be removed. The committee prescribed another procedure, called an RFA (radio frequency ablation) for this remaining portion of the tumor. That is what is going to be done. This radio frequency intervention essentially “burns” up what’s left. This residual being “left” after initial therapy happens in the process of getting rid of the tumors, it’s not an unusual event to have a patient go for further intervention(s) until it’s all removed. What ultimately happens is there is no residual left, and sometimes there is a small residual cavity present that can be seen on the scans.

@hogan_g1937 RFA was what I had, they just referred to it as ablation though. My lesions were right at the wall of my liver so it made the ablation more difficult because they pump air (or water?) in to separate the liver from other organs. It made it a bit more painful after the ablation, generally they say most people have no pain.
JK

@contentandwell and @hogan_g1937 I asked where my husband was on the list when he was activated last month and all they would tell me was his score and that there were other people with higher scores than him. I think they may tell you when you are at the top, but before then they don't say much since it is so fluid.

@hogan_g1937 the list is dynamic so I don’t think they ever tell you exactly where you are. They could say #5 and people could come along in greater need putting you back. In August of 2016 I got two letters from two different people. One said my MELD was 18, the other said 28, so I called to find which was correct. The person I spoke to confirmed that it was now 28 and said I should have my bag packed and make arrangements for any pets or children because at that point it could be weeks or 2 or 3 months. It was just less than a month. Prior to transplant, at MGH, you are a patient of a hepatologist. When they found out that I had my transplant they were thrilled, they did not expect it to come so soon. They were so excited for me that I think they might have feared that I wasn’t going to make it, I had really gone downhill.
What is your husband’s MELD? Depending on your region and blood type the MELD at which you get called can vary a lot. If you are not on Facebook you may want to get on it just to get the updates fromCompare Transplant Centers, they are very helpful in keeping updates on the wait lists in different regions.
JK

@jodeej, I only knew my MELD score when I was first listed. My husband would often inquire about it, but I did not want to know because the thought of surgery scared me beyond belief. My transplant nurse did tell me to make sure that my bags were ready because I was (at that moment) top of list at that transplant center. Long story summary - it did not happen. I was flown to Mayo out of ICU with acute kidney failure and possible cholangiocarcinoma that could not be diagnosed at home.

At Mayo I had to be relisted and I never did know my MELD until I read my surgery summary many months afterwards. My doctors at Mayo assured my that I would get a transplant when there was a suitable match for me. They did tell us to stay in the immediate area and were happy that we told them we were already at Gift of Life.

There is really no way to know because there are so very many variables involved. It is not like waiting in line or holding a ticket. Yes, it is frustrating to have to live with uncertainties.
Just remember that you are in good care. Keep the communication going with your transplant team. Keep on following their instructions and appointment schedules.
Rosemary