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Post transplant 1/10/10, triple therapy TX yes/no??
My husband, 54, post transplant on 1/10/10, elevated ALT ans AST in April 2010, started dbl TX 135 pegasys and 600 riboviron, also Procrit 20,000 twice a week and Neupogen 300 once a week. He ended all treatment in December, 2011 as directed from MGH, as we had been referred to Mayo Clinic in AZ for triple therapy TX. MGH and our Vermont Hepatologist referred us to Dr. Hugo Vargus, at the Mayo Clinic in Phoenix, AZ in December, 2011. We decided to buy an RV and travel (bucket list style). We ended up here for our Apt at the Mayo Clinic, only to be told, they have never treated anyone post transplant that have not transplanted at the Mayo Clinic . . . Go figure!!! So the dbl tx ribo/peg was stopped in December, and Gary's labs blood wise have started to rise a bit, but his liver enzymes, BUN, alk phos, and viral load have gone up . . . VL is now 18 mil compared to 1 mil in December! We are trying to figure out if searching for another clinic to tx him with the triple therapy is a good idea or not. MGH is not using the triple therapy on their post transplant patients, don't know why, but they just are not....Any advise will be appreciated . . .
December 27, 2011 labs . . . VL 1.2 mil, Creat .9, BUN 10, Alk Phos 88, Mag 1.9, Pot 4.7, Alb 2.7, AST 31, ALT 23, Billi .3, HCrit 30.7, Hglobin 9.4, RBC 2.93, WBC 2.9, Plat 78.
March 8, 2012 labs . . . VL 18 mil, Creat 1.0, BUN 31, Alk Phos 160, Mag 1.7, Pot ?, Alb 3.9, AST 63, ALT 70, Billi .5, HCrit 41, Hglobin 13, RBC 4.1, WBC 3.9, Plat 85.
That is all I have . . . His mental status is slow, his ST memory is non existent, close to 10%, his irritability is high like a 8 out of 10, his insomnia is high, he sleeps maybe 4 hrs straight, if lucky (he takes Ambian CR 12.5 every night, Trazadone 100mg every night, and Remeron (Mirtazapine) every night) He still has insomnia . . . Gary is tired when ever you as ask him. He is eating more since stopping dbl TX. He also has had Type 2 diabetes since pre transplant, he is insulin dependent, He uses Novalog 70/30 mix twice a day, and regular Novalog short acting as needed.
Thanks to everyone who reads this and gives us their advice. We are feeling so unsure right now.
December 27, 2011 labs . . . VL 1.2 mil, Creat .9, BUN 10, Alk Phos 88, Mag 1.9, Pot 4.7, Alb 2.7, AST 31, ALT 23, Billi .3, HCrit 30.7, Hglobin 9.4, RBC 2.93, WBC 2.9, Plat 78.
March 8, 2012 labs . . . VL 18 mil, Creat 1.0, BUN 31, Alk Phos 160, Mag 1.7, Pot ?, Alb 3.9, AST 63, ALT 70, Billi .5, HCrit 41, Hglobin 13, RBC 4.1, WBC 3.9, Plat 85.
That is all I have . . . His mental status is slow, his ST memory is non existent, close to 10%, his irritability is high like a 8 out of 10, his insomnia is high, he sleeps maybe 4 hrs straight, if lucky (he takes Ambian CR 12.5 every night, Trazadone 100mg every night, and Remeron (Mirtazapine) every night) He still has insomnia . . . Gary is tired when ever you as ask him. He is eating more since stopping dbl TX. He also has had Type 2 diabetes since pre transplant, he is insulin dependent, He uses Novalog 70/30 mix twice a day, and regular Novalog short acting as needed.
Thanks to everyone who reads this and gives us their advice. We are feeling so unsure right now.
In the meantime, since you don't know what the outcome will be, if you haven't done so already, I think it would be a good idea to take care of things like updating your wills, making sure you have durable power of attorney for him, that he has an updated health care directive, and that you've talked about things like final wishes, etc. Please try to have that difficult conversation about end of life things such as resucitation and extraordinary measures. I don't mean to upset you or make it sound like I think that I believe that the end is near, but I do think that these are good things for everyone to have in place, and given his current status, even more so. I imagine that you both would want to look to his doctor(s) for guidance about whether or not to treat and whether or not to transplant again. Perhaps he is too ill to treat using triple therapy, as I believe it can cause people with decompensated livers to experience liver failure. I don't have any answers, but I do encourage you to have the difficult conversations. We are here for you, if we can help.
Advocate1955
Advocate1955
Hi Hector, Thank you so much for your response. It was so kind of you to give us so much personal information. Your time and effort we very much appreciate. Gary's MELD score hovered around 18 during the fall of 2009. Then he stated to bleed internally and ascites got bad, fluid taken off abdomen, then the coma then his score rose to above 48 and he was getting dialysis and they found a liver, but the surgeon was not able to pass it for transplant, 2 days later another liver was available and the surgeon passed it for transplant. He received the transplant in January 2010. We do know he will need a new liver, but we have also been told by his transplant team in Boston, that he will not be eligable for another transplant, as he barely survived the first one and since he is not clearing hep C and it has been over a year since his first one, they do not believe it would be worth while, for lack of better words. (his surgeon did give us more detailed information) So that is why we are scurrying to get rid of the hep c. If he clears, then they will consider a 2nd transplant. . . Gary's case is complicated. We do know what the outcome could be. But if we can find a doctor that would help him with clearing the hep c, then we believe he may have a chance. But all in the same breathe, do we want to spend the last years of his life, searching for a cure that may never happen, or do we want to just enjoy our last years together? It is a hard decision to make. It feels like giving up . . . it is VERY difficult.
Hi, he has had several brain MRI's and we have been told they do not see anything abnormal. So I do not know. His new liver is stage 3 fibrosis. As far as I know, his ammonia levels are not elevated. I did have them checked in December. There was a small 1.3 cm carcinoma on his original liver, but as far as we know, he does not have cancer anywhere now. I suppose that could be a possibility . . . We have rested quite a bit this weekend, and we are hoping to find some positive things this week. I have to do all the legwork, all the phone calls and appointment settings. There are some rough days, but I somehow seem to make it. : )
I don't know very much about transplants or post transplant complications, but OH and HectorSF have answered above, and they will be good resources for you. I too am wondering what else might be going on? Did something else happen neurologically during the surgery or in recovery after the surgery (e.g. a stroke or a hemorrhage)? What is the state of his new liver?
Advocate1955
Advocate1955
Hi, thanks for your input. Our Doctor at Mass General did talk to Mayo and forwarded all Gary's records to them. This is very strange to us too. I also talked to Mayo at least 6 times before our appointment . . . I don't get it either. Mass General's only choice for Gary was to continue using the dbl tx. His Hepatologist is in his 80's in VT, a very great man and Dr., his recommendation was Dr. Hugo Vargus at the Mayo Clinic. We went with what we were told.
His TP center, MGH, does follow him as we do labs every month. We lived in Vermont and the climate there was just too difficult for Gary, the weather is so cold and he was miserable all the time, so heading to a warmer climate was actually something that he was greatly looking forward to.
I do not know what went wrong, MGH was ok with us doing this, so if they had said no, then we would not have gone . . .
His symptoms arose from the dbl tx, although he never gained much strength. Pre transplant, he had hepatic encephalopathy bad, being treated with Lactalose and the antibiotic Xifaxan. 20 days before his transplant, he went into a coma and was on life support. His kidneys were failing, he was getting dialysis, and there was more, it was very traumatic. So after his transplant, he continued on breathing tube, feeding tube, all outgoing tubes, and he did not come out of the coma for at least 20 more days, then he was in and out of consciousness for another 20 days or so. This started Christmas day 2009. He finally was able to leave Mass General hospital at the beginning of March, then was transferred to a Rehab facility in Boston for 3 more weeks. We did not return to our home until the first of April. Then home health nurses came to help us monitor him and provided PT and OT in our home for 6-8 months. He never fully recovered from this. . .
He was a very strong man, ALL man before this took place. He now has turned into an old weak man that has very little life . . . I am not pleased, but I do love him and want the best for him. I am just reaching out for help at this point, as I am feeling defeated . . .
Thanks again for any input.
Peace-Hope-Trust . . .
His TP center, MGH, does follow him as we do labs every month. We lived in Vermont and the climate there was just too difficult for Gary, the weather is so cold and he was miserable all the time, so heading to a warmer climate was actually something that he was greatly looking forward to.
I do not know what went wrong, MGH was ok with us doing this, so if they had said no, then we would not have gone . . .
His symptoms arose from the dbl tx, although he never gained much strength. Pre transplant, he had hepatic encephalopathy bad, being treated with Lactalose and the antibiotic Xifaxan. 20 days before his transplant, he went into a coma and was on life support. His kidneys were failing, he was getting dialysis, and there was more, it was very traumatic. So after his transplant, he continued on breathing tube, feeding tube, all outgoing tubes, and he did not come out of the coma for at least 20 more days, then he was in and out of consciousness for another 20 days or so. This started Christmas day 2009. He finally was able to leave Mass General hospital at the beginning of March, then was transferred to a Rehab facility in Boston for 3 more weeks. We did not return to our home until the first of April. Then home health nurses came to help us monitor him and provided PT and OT in our home for 6-8 months. He never fully recovered from this. . .
He was a very strong man, ALL man before this took place. He now has turned into an old weak man that has very little life . . . I am not pleased, but I do love him and want the best for him. I am just reaching out for help at this point, as I am feeling defeated . . .
Thanks again for any input.
Peace-Hope-Trust . . .
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I will try to make some comments on your new recent posts so that you can understand what is "normal" and what is "not normal" meaning “typical” both pre and post transplant. We must remember each of us is a unique individual and will have out own path through liver disease and transplant.
“Pretransplant, he had hepatic encephalopathy bad, being treated with Lactalose and the antibiotic Xifaxan. 20 days before his transplant, he went into a coma and was on life support. His kidneys were failing, he was getting dialysis, and there was more, it was very traumatic.”
* Many transplant patients go through what your husband did. A very good friend of mine had the exact same experience. He had a MELD score of 43.
What was your husband’s MELD score pretransplant?
“So after his transplant, he continued on breathing tube, feeding tube, all outgoing tubes, and he did not come out of the coma for at least 20 more days, then he was in and out of consciousness for another 20 days or so. This started Christmas day 2009.”
* This is not normal. He had a difficult transplant. At the TP center I go to the mean time stay in the hospital is about 5-6 days after transplant. Your husband had very serious complications from his liver disease and transplant. The mean time in ICU is less than a day at my TP center. So complications must have arisen.
“He finally was able to leave Mass General hospital at the beginning of March, then was transferred to a Rehab facility in Boston for 3 more weeks. We did not return to our home until the first of April. Then home health nurses came to help us monitor him and provided PT and OT in our home for 6-8 months. He never fully recovered from this. . .”
* Yes, it is typical that he would need rehab (physical therapy, etc) after being in the hospital that long and being bed ridden for so long. To have taken so long to recover and then go to rehab indicates he had to adjust physically to the real world after going through the complications he suffered.
"He was a very strong man, ALL man before this took place. He now has turned into an old weak man that has very little life"
* I am very sorry to hear that your husband never appears to have recovered from his initial liver damage.
"His new liver is stage 3 fibrosis. As far as I know, his ammonia levels are not elevated. I did have them checked in December. There was a small 1.3 cm carcinoma on his original liver, but as far as we know, he does not have cancer anywhere now. I suppose that could be a possibility . . ."
* I guess you are very aware that your husband's donor liver is now being damaged very quickly by an aggressive form of hepatitis C? This is usually in good part do to high dosages of anti-rejection meds that he has taken to keep his body from rejecting his donor liver. That is why they are trying to treat is hep C. Unfortunately he will need another transplant in the near future if he can't clear the hep C. This is a terrible position to be in.
* Ammonia levels are a complication of End-Stage Liver Disease (decompensated cirrhosis) only. Not Stage 3. So that is not affecting him.
* Liver cancer does not appear until stage 4, cirrhosis not at stage 3 and has no symptoms until it is in its final stage. So again it has nothing to do with your husband's condition.
We must keep in mind that although we always want to have a transplant patient return to their old healthy selves post transplant the main purpose of transplant is to allow the patient to gain extra time that they wouldn’t have if they didn’t have a transplant.
In summary, your husband had serious complications before and after transplant that is why he never recovered from transplant. I am very sorry to hear that you are both burdened by this. My heart goes out to you both. The only way to understand what is happening with your husband now and to understand what happened before, during and after transplant. You must talk to his surgeon or hepatologist who managed his care during the transplant. They know the answers. It is just that the both of you don't. Formulate questions and make sure they communicate to you so you can understand it in terms that make sense to you. Don't be intimidated. It is their job to communicate his condition to your husband and yourself. Of course you have to ask first to get answers. This is the most important thing you can do! To understand where you are now and what you both are facing in the future. It sounds like you need concrete answers as you as speculating without the basic facts.
Advanced liver disease and transplantation are very complex issues. Not something anyone but a hepatologist at a transplant center could truly understand in all its complexities. What I know is basic on my own health status having hep C, End-Stage Liver Disease and liver cancer and all I know about transplants from my many friends who have had liver transplants.
So make an appointment with your husband's hepatologist at the transplant center and ask all the questions that are on my mind. I think you both will feel better knowing your husband's current health status and be better able to make the best choices for the both of you in the future.
NOTE: Some people do not want to really know what is happening as they would rather not know and just let the docs do their thing. Nothing has it's downsides too. When the issue is advanced liver disease and transplant it is never a bed of roses as I am sure you are aware. But I just want to warn you, you must be prepared to here bad news. Well as much as any one can be prepared for things we wish were not true. So please be sure that you do want to know. This is based on my own experience. For example the relationship between myself and my hepatologist is one of complete honesty no matter have harsh the reality. When she told be that I had to wait and get MELD exception points for my liver cancer or I would be dead within 2 years at most it was a horrible moment for me. Of course I lost it and starting crying in her office but she comforted me saying she would do everything in her power to keep me alive another year so I can get a transplant. I am sure you both have experienced your own the roller coaster of emotions as things tend to flip between hope and despair so many times.
My best goes out to the both of you.
Try to stay positive and strong when you can. Take it one day at a time.
Hector