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TIPPS and transplant
Hey all! Today my husband and I met his new doctor, he doesn't want to treat him for hep c at this time because of all the complications his currhosis has caused. So instead he had scheduled an appointment for next month to have the TIPPS procedure. The banding is not working unfortunately. We've had several sessions (atleast 7) and has had to be banded everytime, usually 6-7 bands were put on at a time.
I'm very nervous about this procedure as I've read that is not an easy recovery but if that's what we have to do then we will get thru it. His varicies are very enlarged, there is a blockage in his portal vein.
Also he suggests he have a liver transplant instead of holding on to the possibility of patching his old up, it's in bad shape. We met with a social worker on transplant team and was given papers and a video to watch about having a transplant. In 2 months we have another appointment with her to start the evaluation process of getting listed. I am scared but at the same time a bit relieved knowing that things are getting done.
I know states transplant centers are differed and don't always require all the same things as each other but what are we looking at? How long will it actually take to get his name on the list after finishing the process? Average wait time on list?
I'm very nervous about this procedure as I've read that is not an easy recovery but if that's what we have to do then we will get thru it. His varicies are very enlarged, there is a blockage in his portal vein.
Also he suggests he have a liver transplant instead of holding on to the possibility of patching his old up, it's in bad shape. We met with a social worker on transplant team and was given papers and a video to watch about having a transplant. In 2 months we have another appointment with her to start the evaluation process of getting listed. I am scared but at the same time a bit relieved knowing that things are getting done.
I know states transplant centers are differed and don't always require all the same things as each other but what are we looking at? How long will it actually take to get his name on the list after finishing the process? Average wait time on list?
COMMUNITY LEADER
Brittney,
It sounds like your husband is in the right hands. I am very thankful for that. Having a hepatologist and a transplant team behind your loved one is the first and most vital step to a good outcome.
A MELD score of 15 is usually high enough to get on the waiting list for a liver transplant and I am sure with his worsening liver disease and complications he is now experiencing his MELD score is probably higher now then before so that should not be an issue. He appears to be ill enough to get listed.
I am very sorry to hear that he failed the hep C treatment and that therefore they were unable to stop his cirrhosis from progressing but I can assure you that with a new, health liver they should be able to cure his hep C after his transplant so his hep C will not be a future issue that he will need to worry about thankfully due to the advancements in hep C treatment.
As I said TIPS is a very common procedure and is something that can help him with the complications he is experiencing. It is all a matter of benefit vs. risk. If someone’s portal hypertension and it complications (ascites, varices, etc) are so serious as to be a danger to his health and life that is when a TIPS is considered as an option. It is one of many options that patients may need to manage their liver disease complications while they are awaiting transplant. Since people have to unfortunately get worse (have their liver fail more to get a higher MELD score to get a donor liver and transplant) before they get better it (have the transplant surgery) TIPS can help to manage and stabilize them while they wait.
A variceal bleed can be life-threatening and once you have a first bleed you are more likely to have future bleeds. So by having a TIPS the chances of a bleed will be reduced. A good thing.
Paracentesis (fluid tapped off) is also a very common procedure done at transplant centers when diet and diuretics can no longer control fluid build-up (ascites and edema). As with all procedures there is some risk but, besides the misery of carrying around all of that fluid and having problems breathing because the fluid is pressing on the diaphragm and lungs, there is also the risk of infection which can be very serious (life-threatening) in a person with advance cirrhosis because they have a compromised immune system.
All of these procedures must be looked at from the point of view of the patient’s overall survival. Unfortunately with a failing liver comes a lot of medical complications and suffering both physical and mental.
I have met probably 500-600 people that have had liver transplants over the last 5 years at my transplant center and dozens and dozens of folks that have had TIPS before their transplants. TIPS and many other procedures are used to keep people alive while they wait for transplant. It should be looked at in context. Liver failure is a life and death situation. We don’t have these things done, including our transplants, because we wanted them. We went through what we had to to stay alive. That is the bottom line. Similar to people with cancer who have to do chemotherapy, radiation or surgery. We do it to stay alive…when that is the only option we have. That is what liver transplantation is too. It is the FINAL option after all else fails. I am glad we have the option…which not too many years ago wasn’t an option for many of us. They didn’t give transplants to people with hepatitis C for example, or liver cancer (which is what I had plus hep C), and now even people with HIV can get liver transplants. Yes we are very lucky. Without these advances myself and many of my friends would no longer be here.
I am 63, became disabled due to my advanced cirrhosis 6 years ago, then developed advanced liver cancer, during the 4 years I waited for my transplant, which almost prevented me from getting a liver transplant and I am still learning about liver disease and its affects on people and their lives. Which is why I volunteer at my transplant center to help others through the very difficult and life-changing process of liver transplantation.
If you have any particular questions along the way through the process feel free to ask. There is a lot to learn and it can seem overwhelming at times. This is normal. We all have felt overwhelmed. The main thing is that your husband is in good hands. This is what these doctors do day in and day out. They care for people with cirrhosis and its complications. This is their specialty. So ask questions and learn what you can from your husband’s medical team. They are there is get him well again. It may be a difficult journey, many ups and downs, but know that these people save people’s lives on a daily basis and they will help you both through the process.
Take care,
Hector
It sounds like your husband is in the right hands. I am very thankful for that. Having a hepatologist and a transplant team behind your loved one is the first and most vital step to a good outcome.
A MELD score of 15 is usually high enough to get on the waiting list for a liver transplant and I am sure with his worsening liver disease and complications he is now experiencing his MELD score is probably higher now then before so that should not be an issue. He appears to be ill enough to get listed.
I am very sorry to hear that he failed the hep C treatment and that therefore they were unable to stop his cirrhosis from progressing but I can assure you that with a new, health liver they should be able to cure his hep C after his transplant so his hep C will not be a future issue that he will need to worry about thankfully due to the advancements in hep C treatment.
As I said TIPS is a very common procedure and is something that can help him with the complications he is experiencing. It is all a matter of benefit vs. risk. If someone’s portal hypertension and it complications (ascites, varices, etc) are so serious as to be a danger to his health and life that is when a TIPS is considered as an option. It is one of many options that patients may need to manage their liver disease complications while they are awaiting transplant. Since people have to unfortunately get worse (have their liver fail more to get a higher MELD score to get a donor liver and transplant) before they get better it (have the transplant surgery) TIPS can help to manage and stabilize them while they wait.
A variceal bleed can be life-threatening and once you have a first bleed you are more likely to have future bleeds. So by having a TIPS the chances of a bleed will be reduced. A good thing.
Paracentesis (fluid tapped off) is also a very common procedure done at transplant centers when diet and diuretics can no longer control fluid build-up (ascites and edema). As with all procedures there is some risk but, besides the misery of carrying around all of that fluid and having problems breathing because the fluid is pressing on the diaphragm and lungs, there is also the risk of infection which can be very serious (life-threatening) in a person with advance cirrhosis because they have a compromised immune system.
All of these procedures must be looked at from the point of view of the patient’s overall survival. Unfortunately with a failing liver comes a lot of medical complications and suffering both physical and mental.
I have met probably 500-600 people that have had liver transplants over the last 5 years at my transplant center and dozens and dozens of folks that have had TIPS before their transplants. TIPS and many other procedures are used to keep people alive while they wait for transplant. It should be looked at in context. Liver failure is a life and death situation. We don’t have these things done, including our transplants, because we wanted them. We went through what we had to to stay alive. That is the bottom line. Similar to people with cancer who have to do chemotherapy, radiation or surgery. We do it to stay alive…when that is the only option we have. That is what liver transplantation is too. It is the FINAL option after all else fails. I am glad we have the option…which not too many years ago wasn’t an option for many of us. They didn’t give transplants to people with hepatitis C for example, or liver cancer (which is what I had plus hep C), and now even people with HIV can get liver transplants. Yes we are very lucky. Without these advances myself and many of my friends would no longer be here.
I am 63, became disabled due to my advanced cirrhosis 6 years ago, then developed advanced liver cancer, during the 4 years I waited for my transplant, which almost prevented me from getting a liver transplant and I am still learning about liver disease and its affects on people and their lives. Which is why I volunteer at my transplant center to help others through the very difficult and life-changing process of liver transplantation.
If you have any particular questions along the way through the process feel free to ask. There is a lot to learn and it can seem overwhelming at times. This is normal. We all have felt overwhelmed. The main thing is that your husband is in good hands. This is what these doctors do day in and day out. They care for people with cirrhosis and its complications. This is their specialty. So ask questions and learn what you can from your husband’s medical team. They are there is get him well again. It may be a difficult journey, many ups and downs, but know that these people save people’s lives on a daily basis and they will help you both through the process.
Take care,
Hector
Promise. So sorry regarding your husbands journey with liver disease. As Hector has explained TIPS can be a life saver.
I'm not a transplant candidate at the moment but with this disease you never know when the tide will change. The MELD score varies in different states as far as receiving a transplant. Just thought I would point out that you can do a duel listing if you feel your husband is getting worse and your state is a higher then average requirement. By duel, I mean listing and being evaluated in 2 states. I know of several people that have done this in hopes of getting a liver sooner then later.
Just thought I would mention this if you were not aware you could do this.
My best to you and your husband.
......Kim
I'm not a transplant candidate at the moment but with this disease you never know when the tide will change. The MELD score varies in different states as far as receiving a transplant. Just thought I would point out that you can do a duel listing if you feel your husband is getting worse and your state is a higher then average requirement. By duel, I mean listing and being evaluated in 2 states. I know of several people that have done this in hopes of getting a liver sooner then later.
Just thought I would mention this if you were not aware you could do this.
My best to you and your husband.
......Kim
Thank you so much for your knowledge, it helps tremendously.
The reason we have a new doctor is because our old doctor got offered a big position in New Jersey (we live in Oklahoma). So the new doctor took over our case. He's a hepatologist on the transplant team, he seems to be very knowledgable as he was the one who trained most of the other doctors on the team.
I'm not 100% sure what his MELD score is currently, about a year ago it was 15 but since then his health has deteriorated. HE has now begin to worsen and Varicies are getting more enlarged. Also his acites has began to worsen. At this time and stage where he is the doctor thinks this is out best option for him. He has failed treatment twice in last 3 years, first time 6 months of interferon/riba and then with Sovaldi for 12 weeks. Both times he was undetectable but after trearmenr stopped it came back. His genotype (2) is suppose to be easiest to cure (before Harvoni came out) but his liver is so bad its not curing the virus.
I've read so much about the TIPS mostly bad but if he's already threatened by the varicies possibly rupturing than it's worth it. They will also be beginning to draw fluid off his abdomen by needle. It's just crazy how fast this disease can deteriorate so quickly. 3 years ago you wouldn't have known he was even sick.
Thank you again so much for your information I just get so confused about this all and its nice to be able to talk to people who understand. I'm 25 years old so I have a lot to learn.
Thanks, Brittney
The reason we have a new doctor is because our old doctor got offered a big position in New Jersey (we live in Oklahoma). So the new doctor took over our case. He's a hepatologist on the transplant team, he seems to be very knowledgable as he was the one who trained most of the other doctors on the team.
I'm not 100% sure what his MELD score is currently, about a year ago it was 15 but since then his health has deteriorated. HE has now begin to worsen and Varicies are getting more enlarged. Also his acites has began to worsen. At this time and stage where he is the doctor thinks this is out best option for him. He has failed treatment twice in last 3 years, first time 6 months of interferon/riba and then with Sovaldi for 12 weeks. Both times he was undetectable but after trearmenr stopped it came back. His genotype (2) is suppose to be easiest to cure (before Harvoni came out) but his liver is so bad its not curing the virus.
I've read so much about the TIPS mostly bad but if he's already threatened by the varicies possibly rupturing than it's worth it. They will also be beginning to draw fluid off his abdomen by needle. It's just crazy how fast this disease can deteriorate so quickly. 3 years ago you wouldn't have known he was even sick.
Thank you again so much for your information I just get so confused about this all and its nice to be able to talk to people who understand. I'm 25 years old so I have a lot to learn.
Thanks, Brittney
COMMUNITY LEADER
Hi and thanks for writing.
You are asking a lot of questions which cover a lot of territory. The liver transplantation process is a very complex process but I will try as best I can to cover the basics which I hope will answer some of your questions.
First let me start which some basic information.
Who is this new doctor? A gastroenterologist, a hepatologist at a transplant center? What happened to the doctor would has been managing your husband's cirrhosis and his varices until now?
What is your husband’s current MELD score?
As far as the TIPS (Transjugular Intrahepatic Portosystemic Shunt) procedure…In cases where other treatments have failed or are not possible, radiologic or surgical shunt procedures may be used to reduce the flow of blood through the varices, reduce pressure within them.
TIPS is a very commonly done procedure at liver transplant centers for people whose portal hypertension and the resulting varices or ascites has become uncontrollable and dangerous. TIPS is only done when the complications of the advanced cirrhosis have been very serious and possibly life-threatening. While it is no a procedure without risks, all procedures have risks, the risks are low and the benefit of him surviving to get a transplant are better. Many if not most of the people I know that have had liver transplants for liver disease had a TIPS procedure to stabilize their liver disease complications before they got their transplants. Also relative to a liver transplant, a TIPS procedure, like is a very minor procedure.
Only a liver transplant team of doctor’s should decide if someone’s liver disease has become too advanced to have their hepatitis C treated. Since then the only option remaining will be a liver transplant and then their hepatitis C will be treated after the transplant.
The good news is that curing hepatitis C after transplant is very easy to do (cure rates in the 94%+ range) so there is no reason to have to worry about the hep C destroying the new liver as was a common occurrence only a few years ago when we didn’t have the treatments we do now. I treated twice before my transplant and failed treatment and was cure with 12 weeks of treatment after my transplant.
The requirements for a liver transplant vary from one transplant center to another so you will have to talk with the people at your transplant center to find out what their requirements to be listed for transplant are.
There is a liver transplant evaluation process that involves lots of medical testing and also interviews with folks in many different departments of the center to determine if the person meets all of the requirements to receive a new liver. The process can take days to weeks to months depending on the urgency of the situation.
To estimate how long a person may wait for a liver transplant at any particular liver transplant center you will have to talk to the transplant center folks to find out at what MELD score number they typically transplant people with your husband’s blood type. The sickest person gets the next available liver. So the person with the highest MELD score (a number computed from 3 different blood tests for liver disease) (this is how the need for transplant is determined) with a compatible blood type will get the liver. I waited 4 years for my liver and had a MELD score of 36 when I got my liver with blood type O.
I hope this helps in your understanding of the liver transplantation process.
Hector
You are asking a lot of questions which cover a lot of territory. The liver transplantation process is a very complex process but I will try as best I can to cover the basics which I hope will answer some of your questions.
First let me start which some basic information.
Who is this new doctor? A gastroenterologist, a hepatologist at a transplant center? What happened to the doctor would has been managing your husband's cirrhosis and his varices until now?
What is your husband’s current MELD score?
As far as the TIPS (Transjugular Intrahepatic Portosystemic Shunt) procedure…In cases where other treatments have failed or are not possible, radiologic or surgical shunt procedures may be used to reduce the flow of blood through the varices, reduce pressure within them.
TIPS is a very commonly done procedure at liver transplant centers for people whose portal hypertension and the resulting varices or ascites has become uncontrollable and dangerous. TIPS is only done when the complications of the advanced cirrhosis have been very serious and possibly life-threatening. While it is no a procedure without risks, all procedures have risks, the risks are low and the benefit of him surviving to get a transplant are better. Many if not most of the people I know that have had liver transplants for liver disease had a TIPS procedure to stabilize their liver disease complications before they got their transplants. Also relative to a liver transplant, a TIPS procedure, like is a very minor procedure.
Only a liver transplant team of doctor’s should decide if someone’s liver disease has become too advanced to have their hepatitis C treated. Since then the only option remaining will be a liver transplant and then their hepatitis C will be treated after the transplant.
The good news is that curing hepatitis C after transplant is very easy to do (cure rates in the 94%+ range) so there is no reason to have to worry about the hep C destroying the new liver as was a common occurrence only a few years ago when we didn’t have the treatments we do now. I treated twice before my transplant and failed treatment and was cure with 12 weeks of treatment after my transplant.
The requirements for a liver transplant vary from one transplant center to another so you will have to talk with the people at your transplant center to find out what their requirements to be listed for transplant are.
There is a liver transplant evaluation process that involves lots of medical testing and also interviews with folks in many different departments of the center to determine if the person meets all of the requirements to receive a new liver. The process can take days to weeks to months depending on the urgency of the situation.
To estimate how long a person may wait for a liver transplant at any particular liver transplant center you will have to talk to the transplant center folks to find out at what MELD score number they typically transplant people with your husband’s blood type. The sickest person gets the next available liver. So the person with the highest MELD score (a number computed from 3 different blood tests for liver disease) (this is how the need for transplant is determined) with a compatible blood type will get the liver. I waited 4 years for my liver and had a MELD score of 36 when I got my liver with blood type O.
I hope this helps in your understanding of the liver transplantation process.
Hector
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