Aa
liver transplant needed w dad
Tons to type. Where do I start?
Long story short: dad had hep C for years, recently finished Harvoni and it's apparently gone but now there's 6 cm cancerous mass. stated options were RFA, resection, live donor (would be me, hopefully), transplant list. docs seem to state that RFA is only a "band-aid." dad leans toward resection, since he doesn't want to impact anyone else w transplant. his liver is cirrhotic according to the docs. we've contacted NYU to get the process started and await their contact. he's now thinking that resection is best bc he doesn't want it to spread while he waits for this transplant procedure to play out.
questions:
what are the survival rates with resection vs transplant (if he's able to get on the list and get one).
how can we expedite the process?
I have tons of labs and numbers that I can share, if that would be helpful. thanks in advance for any advice or suggestions. this resource is truly appreciated.
Long story short: dad had hep C for years, recently finished Harvoni and it's apparently gone but now there's 6 cm cancerous mass. stated options were RFA, resection, live donor (would be me, hopefully), transplant list. docs seem to state that RFA is only a "band-aid." dad leans toward resection, since he doesn't want to impact anyone else w transplant. his liver is cirrhotic according to the docs. we've contacted NYU to get the process started and await their contact. he's now thinking that resection is best bc he doesn't want it to spread while he waits for this transplant procedure to play out.
questions:
what are the survival rates with resection vs transplant (if he's able to get on the list and get one).
how can we expedite the process?
I have tons of labs and numbers that I can share, if that would be helpful. thanks in advance for any advice or suggestions. this resource is truly appreciated.
Regarding your question on statistics, based on a Cleveland Clinic study involving HCC patients, comparing live vs deceased donors, there is a long term survival advantage in using the live donor procedure. The two methods, live vs deceased, have the same survival rate up to 3 years after transplant. But the advantages of using live donors is around 5% after 5 years, and up to 10% after 10 years. Of course there is a risk to the donor that would not otherwise have been there, so this decision must be carefully thought through by both parties.
Some of the advantages to the live donor method do make it compelling. The obvious advantage is timing - both the reduced overall waiting time, and the ability of when to do the transplant based on the health status of the recipient, and not simply the sudden availability of an organ. Also, the time that the transplanted organ is cold and without blood (ischemia) is greatly reduced with live donor procedures. Lastly, the subtle detrimental effects of the cadaver donor's brain death can cause pathophysiologic changes to the liver.
So in short, the living donor transplantation procedure is the best strategy and can improving life expectancy by 4 to 5 years when compared to the deceased donor approach. Good luck to both of you and hoping for the best!
Some of the advantages to the live donor method do make it compelling. The obvious advantage is timing - both the reduced overall waiting time, and the ability of when to do the transplant based on the health status of the recipient, and not simply the sudden availability of an organ. Also, the time that the transplanted organ is cold and without blood (ischemia) is greatly reduced with live donor procedures. Lastly, the subtle detrimental effects of the cadaver donor's brain death can cause pathophysiologic changes to the liver.
So in short, the living donor transplantation procedure is the best strategy and can improving life expectancy by 4 to 5 years when compared to the deceased donor approach. Good luck to both of you and hoping for the best!
Just a few things to add and some clarification...
Yes, the goal is to get a MELD score high enough for him to be at the top of the waiting list to get a transplant. People that get exception points for HCC get additional points every three months as long as their cancer stays within transplant criteria. That is why the treatments are done, to keep the cancer under control. He will start with 22 MELD exception points as soon as he is officially on the transplant list. Please realize if he is list at one of the transplant centers in NYC he will need a MELD score in the 30s to get a transplant. Assuming he has the most common blood types either O or A, that means it will take him about 1 ½ years to get to the top of the list.
This is a huge difference from getting a living donor transplant where there is no wait list and the surgery is a schedule affair. The only wait is the evaluation of both the donor and recipient to make sure they are compatible once each person has been educated as to what they are getting into. This may take up to 6 months at least at my transplant center. Important note: Please be aware that only 1 in 3 people are typically compatible and able to be a living donor.
The other option used by many folks is to get a deceased donor transplant somewhere other than in California and New York City where the waiting time isn’t so long. In Florida for example a person can get a transplant with a MELD score in the mid 20s vs. mid 30s in NYC or Cali. To get that many MELD points for someone with HCC exception points, it can take an additional year of waiting. To wait an additional year can be risky because when someone develops HCC, they are prone to continue to develop tumors and it is possible for the cancer to get out of control, beyond being eligible for a transplant. If this happens there are no remaining options for that person.
Atlanta probably has less wait time than NYC. How different, you would have to research it. Florida is where a lot of our folks go who can’t wait and have the option with their insurance and situation so they can travel and have a caregiver come to a new state. There are also a couple of other transplant centers in other states around the country with short waiting lists as well. Your father should talk to his transplant doctor about the option of getting listed at a center where he can get a transplant sooner.
Please understand clearly liver transplant is the only cure for HCC in a person with cirrhosis. TACE, RFA, PEI are only palliative treatments, they buy additional time but are not curative. Once liver cancer has developed in someone with cirrhosis transplant is the only option to stay alive.
Each person awaiting transplant has to decide if they will take a liver donor liver. It is a moral decision that only the person can make. Having someone else donate a part of their liver is a risk. Liver donation is a major surgery make no mistake about it. So both people need to go into it understanding and being able to live with the consequences. Each person also needs their own caregiver. So both you and your father will need a person to take care of you after the surgery. That can get complex for a family. I know 3-4 families who have had living donor liver transplants. It can be tough but it is doable. I personally couldn’t have dealt with my 21 year old nephew being hurt and having health problems because of my liver cancer so I would not accept a living donor offer. All people are different so you know to work it out assuming you dad with accept your offer and that you are compatible.
There is a difference between a cadaver liver and a living donor liver. The difference between getting a whole or part of a liver. There is a higher risk of certain complications to the recipient because the connections are different. But no sense thinking about that now. One step at a time.
Remember nothing in liver transplant happens fast. Things take time. Often months. With your father TACE treatment he will need to recover from the procedure and then in a month he will have a CT or MRI to see how effective the treatment was. Hopefully they got all of it. Somethings they have to repeat the procedure to get what is remaining. Once this tumor has been stopped he will continued to be monitored probably every 3 months now to see if any other arise so they can get them early when they are most treatable. Like most cancers, catch it early and the outcomes are best.
Take care.
Hector
8 HCC treatments and liver transplant at UCSF 11/16/2013
Yes, the goal is to get a MELD score high enough for him to be at the top of the waiting list to get a transplant. People that get exception points for HCC get additional points every three months as long as their cancer stays within transplant criteria. That is why the treatments are done, to keep the cancer under control. He will start with 22 MELD exception points as soon as he is officially on the transplant list. Please realize if he is list at one of the transplant centers in NYC he will need a MELD score in the 30s to get a transplant. Assuming he has the most common blood types either O or A, that means it will take him about 1 ½ years to get to the top of the list.
This is a huge difference from getting a living donor transplant where there is no wait list and the surgery is a schedule affair. The only wait is the evaluation of both the donor and recipient to make sure they are compatible once each person has been educated as to what they are getting into. This may take up to 6 months at least at my transplant center. Important note: Please be aware that only 1 in 3 people are typically compatible and able to be a living donor.
The other option used by many folks is to get a deceased donor transplant somewhere other than in California and New York City where the waiting time isn’t so long. In Florida for example a person can get a transplant with a MELD score in the mid 20s vs. mid 30s in NYC or Cali. To get that many MELD points for someone with HCC exception points, it can take an additional year of waiting. To wait an additional year can be risky because when someone develops HCC, they are prone to continue to develop tumors and it is possible for the cancer to get out of control, beyond being eligible for a transplant. If this happens there are no remaining options for that person.
Atlanta probably has less wait time than NYC. How different, you would have to research it. Florida is where a lot of our folks go who can’t wait and have the option with their insurance and situation so they can travel and have a caregiver come to a new state. There are also a couple of other transplant centers in other states around the country with short waiting lists as well. Your father should talk to his transplant doctor about the option of getting listed at a center where he can get a transplant sooner.
Please understand clearly liver transplant is the only cure for HCC in a person with cirrhosis. TACE, RFA, PEI are only palliative treatments, they buy additional time but are not curative. Once liver cancer has developed in someone with cirrhosis transplant is the only option to stay alive.
Each person awaiting transplant has to decide if they will take a liver donor liver. It is a moral decision that only the person can make. Having someone else donate a part of their liver is a risk. Liver donation is a major surgery make no mistake about it. So both people need to go into it understanding and being able to live with the consequences. Each person also needs their own caregiver. So both you and your father will need a person to take care of you after the surgery. That can get complex for a family. I know 3-4 families who have had living donor liver transplants. It can be tough but it is doable. I personally couldn’t have dealt with my 21 year old nephew being hurt and having health problems because of my liver cancer so I would not accept a living donor offer. All people are different so you know to work it out assuming you dad with accept your offer and that you are compatible.
There is a difference between a cadaver liver and a living donor liver. The difference between getting a whole or part of a liver. There is a higher risk of certain complications to the recipient because the connections are different. But no sense thinking about that now. One step at a time.
Remember nothing in liver transplant happens fast. Things take time. Often months. With your father TACE treatment he will need to recover from the procedure and then in a month he will have a CT or MRI to see how effective the treatment was. Hopefully they got all of it. Somethings they have to repeat the procedure to get what is remaining. Once this tumor has been stopped he will continued to be monitored probably every 3 months now to see if any other arise so they can get them early when they are most treatable. Like most cancers, catch it early and the outcomes are best.
Take care.
Hector
8 HCC treatments and liver transplant at UCSF 11/16/2013
First off, he has no more time. The longer he waits, then the chances increase that the HCC may spread. And if it gets outside of his liver, then the transplant may very well not be an option anymore. It's wonderful that his doctors have been able to slow things down, and they bought him some additional short term time, but it's not a curative solution.
The exception points should have raised his MELD score into the upper 20's to 30's range. New York does require a bit higher MELD score in comparison to the lower MELD score in other transplant regions. But keep in mind that he gets additional exception points for every additional 3 months that he remains on the transplant list. Also, some patients have moved (temporarily) to get further up the transplant list, into the lower MELD regions. But, you can do a dual listing in two regions as well - I would go with this option, you have many different opportunities this way.
Being a living donor is not without it's risks. It's wonderful that you are offering such a special gift but it can come at a price. It's something that only you and your dad can discuss. I'm in a similar condition myself, and I have family and friends offering. My current decision is to go with the deceased donor route, far less risky for my living donor, due to my extra biliary requirements because of my particular liver disease, PSC.
Another thing you need to watch for is his kidney status. This is a wild card of sorts, and can suddenly cause trouble, completely unexpectedly. I'm sure his doctors are on top of things but this is a very complex disease process.
Here's a site that you can search to obtain additional information: http://optn.transplant.hrsa.gov/
Please touch base with us anytime you like, we're here for you. Take care!
The exception points should have raised his MELD score into the upper 20's to 30's range. New York does require a bit higher MELD score in comparison to the lower MELD score in other transplant regions. But keep in mind that he gets additional exception points for every additional 3 months that he remains on the transplant list. Also, some patients have moved (temporarily) to get further up the transplant list, into the lower MELD regions. But, you can do a dual listing in two regions as well - I would go with this option, you have many different opportunities this way.
Being a living donor is not without it's risks. It's wonderful that you are offering such a special gift but it can come at a price. It's something that only you and your dad can discuss. I'm in a similar condition myself, and I have family and friends offering. My current decision is to go with the deceased donor route, far less risky for my living donor, due to my extra biliary requirements because of my particular liver disease, PSC.
Another thing you need to watch for is his kidney status. This is a wild card of sorts, and can suddenly cause trouble, completely unexpectedly. I'm sure his doctors are on top of things but this is a very complex disease process.
Here's a site that you can search to obtain additional information: http://optn.transplant.hrsa.gov/
Please touch base with us anytime you like, we're here for you. Take care!
Thanks a million for that prompt response. Things seem to have played out exactly as per your forecast:
1. We've been told that the goal is to increase his MELD score via the Exception Points.
2. We'll need to get him on "the list" even before the live donor option can even be considered.
3. As we "speak" my dad is right now undergoing the TACE procedure (trans-aterial chemoembilization) and plans are to follow this up w RFA in a few weeks after the exact impacts of the TACE have been determined. These are done to manage the cancer, remove the mass, etc. so as to better make him ready for transplant (exactly as you suggested).
4. He has had all clearances done (ekg, echo, stress, mri, ct, etc.) and the Transplant Coordination Team (for lack of better terminology) will meet either this Friday or next Friday to determine whether he is a candidate for the list.
My questions now are:
1. What do the statistics say for people on the transplant list as opposed to those who have a live donor ready. I'm beginning to see my dad becoming increasingly nervous about the risks to me were we to go through this live donor procedure, especially now that the post-TACE/RFA liver seems to be one whereby the cancer has less of a chance to spread. That is: he thinks this will buy him more time.
2. I'm told that people have more chances of getting a liver from "the List" down south (Florida specifically) just because of lifestyle and demographics. I wonder how we might list in Atlanta (where I live) as well as New York (where my dad lives).
Thanks again to all who contribute to this valuable information resource.
1. We've been told that the goal is to increase his MELD score via the Exception Points.
2. We'll need to get him on "the list" even before the live donor option can even be considered.
3. As we "speak" my dad is right now undergoing the TACE procedure (trans-aterial chemoembilization) and plans are to follow this up w RFA in a few weeks after the exact impacts of the TACE have been determined. These are done to manage the cancer, remove the mass, etc. so as to better make him ready for transplant (exactly as you suggested).
4. He has had all clearances done (ekg, echo, stress, mri, ct, etc.) and the Transplant Coordination Team (for lack of better terminology) will meet either this Friday or next Friday to determine whether he is a candidate for the list.
My questions now are:
1. What do the statistics say for people on the transplant list as opposed to those who have a live donor ready. I'm beginning to see my dad becoming increasingly nervous about the risks to me were we to go through this live donor procedure, especially now that the post-TACE/RFA liver seems to be one whereby the cancer has less of a chance to spread. That is: he thinks this will buy him more time.
2. I'm told that people have more chances of getting a liver from "the List" down south (Florida specifically) just because of lifestyle and demographics. I wonder how we might list in Atlanta (where I live) as well as New York (where my dad lives).
Thanks again to all who contribute to this valuable information resource.
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It's great that his Hep-C has been cured, but a liver in end-stage cirrhosis will not likely re-normalize, recuperation is limited by the nodular fibrosis. However, livers that haven't crossed the end-stage threshold (or just entered) might be recovered. But most doctors and procedures will not be able to distinguish the difference, near this transition. Fully cirrhotic livers though are easy to assess.
You might cross post in the "Cirrhosis of the Liver Community" as well. Hector is a leader there and has a great deal of experience in this area. We will all try and help you through this difficult time. Take care.