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Kind words anyone?? HCV Type 6
Hello anyone who feels like helping me get uplifted. Update on my mom. She is 57yrs young and I can see her health slowly going down hill. She has had 5 plural effusions in 2yrs and a full hysterectomy in Feb. 2011. She is always tired and always feels nauseous. She has been diagnosed in 2003 with HCV. She has cirrhosis of the liver and is decompensated since 2009. We live in Texas and most of the liver doctors we have seen have never treated a person with geno type 6. They say its very similar to type 1. Right now she has a 30% chance of getting rid of the virus with interferon/ribo treatment. She first has to get cleared from her rheumatoid arthritis dr. before she can start treatment. If the treatment does not work or she cannot continue with the treatment, her next option would be transplant. She is against the transplant. She has 3 daughters willing to be the living donors if we match, but she feels like she is making us suffer with her if she takes apart of our liver.( my mom is a very old fashion Asian lady) It's hard seeing her like this everyday. I have heard of people living 10yrs after a transplant, but I have not found any stories to support that. I want my mom to see her grand kids. I think I just need some words of encouragement and so I can pass it on to my mom. I ask for extra strength everyday so that I can help her and others, but my own strength is weakening. Kind words would help.... :)
Well, I certainly didn't feel strong at the time. I felt weak and numb.
There was some determination to keep putting one foot in front of the other, but that was it.
My husband said it was up to me.
He'd stay by my side whatever I choose to do.
Just two months before my transplant, my son visited with my granddaughter who was 9 months. Practically in tears he told me how he couldn't imagine her growing up without knowing me.
Here I had my daughter willing to be my donor, my son in tears, this beautiful toddler who I was crazy about~ I had no choice but to try.
To top it off, since I had no insurance,( but had money in the bank) we flew to Taiwan to have the surgery.
My daughter said she'd rather fly to Taiwan and go through surgery than be attending my funeral.
I tell you my story to encourage you. Tell your mom how important it is to you, that she live. She has to want it. And sometimes, it takes someone outside ourselves to give us the desire to stay on the planet.
There was some determination to keep putting one foot in front of the other, but that was it.
My husband said it was up to me.
He'd stay by my side whatever I choose to do.
Just two months before my transplant, my son visited with my granddaughter who was 9 months. Practically in tears he told me how he couldn't imagine her growing up without knowing me.
Here I had my daughter willing to be my donor, my son in tears, this beautiful toddler who I was crazy about~ I had no choice but to try.
To top it off, since I had no insurance,( but had money in the bank) we flew to Taiwan to have the surgery.
My daughter said she'd rather fly to Taiwan and go through surgery than be attending my funeral.
I tell you my story to encourage you. Tell your mom how important it is to you, that she live. She has to want it. And sometimes, it takes someone outside ourselves to give us the desire to stay on the planet.
PS Please also tell your mother that whatever any one of her daughters might have to go through recovering from surgery is nothing compared to the pain of what it would be like watching her life and spirit be taken away slowly and painfully by end stage liver cirrhosis.
With daughters as caring and as dedicated as you, and young grandchildren to enjoy, your mother has every reason to pursue a longer life with every means possible. I hope your mother can come to view transplantation as a real option that may give her a chance to watch her grandchildren grow up to be adults. Her strength in raising good children, her surgeries, her courage in facing mortality with worsening cirrhosis -- these qualities show that she DOES have the strength to keep living -- and with strong caring daughters by her side she needs to believe that longer life IS possible.
As you can see from mikesimon and orphanedhawk, there ARE long-term survivors after both living and cadaver liver transplants doing quite well -- I also know from experience of going with my husband to his Transplant Center visits that liver transplantation can be very successful, and many patients do very well for many years. I hope your family can rally around the situation and help your mother reach an understanding that a liver transplant is a choice and the gift of life -- not only for her, but for the life of the family she cares about, too.
If your mother is able to treat her hepatitis successfully before transplant, there is good likelihood that it may prevent re-infection of the new liver; however, it is important to keep in mind that treatment can be dangerous in the setting a decompensated liver, so it would be wise to ensure your mother would accept a liver transplant in the rare event of further decompensation as a result of treatment.
If Baylor is providing the option to pursue living as well as cadaver donor, it is good to explore both possibilities. Although standard transplant listing can be pursued if your mother does not want to accept a living donor, most areas have such high demand for livers that folks get very very sick while waiting for new livers...also, some fall out of eligibility altogether for either living or cadaver donor transplant if other complications arise, as they did for my husband. Best wishes to you and your family. ~eureka
As you can see from mikesimon and orphanedhawk, there ARE long-term survivors after both living and cadaver liver transplants doing quite well -- I also know from experience of going with my husband to his Transplant Center visits that liver transplantation can be very successful, and many patients do very well for many years. I hope your family can rally around the situation and help your mother reach an understanding that a liver transplant is a choice and the gift of life -- not only for her, but for the life of the family she cares about, too.
If your mother is able to treat her hepatitis successfully before transplant, there is good likelihood that it may prevent re-infection of the new liver; however, it is important to keep in mind that treatment can be dangerous in the setting a decompensated liver, so it would be wise to ensure your mother would accept a liver transplant in the rare event of further decompensation as a result of treatment.
If Baylor is providing the option to pursue living as well as cadaver donor, it is good to explore both possibilities. Although standard transplant listing can be pursued if your mother does not want to accept a living donor, most areas have such high demand for livers that folks get very very sick while waiting for new livers...also, some fall out of eligibility altogether for either living or cadaver donor transplant if other complications arise, as they did for my husband. Best wishes to you and your family. ~eureka
Hi!
You know, I've told my mom your story and she says wow your a strong lady. I don't think she sees that she can be like that to yet...Thank you for your post! :)
You know, I've told my mom your story and she says wow your a strong lady. I don't think she sees that she can be like that to yet...Thank you for your post! :)
Hi Mike!
Wow! That is great news to hear! I can't wait to tell my mom! What a blessing it is to get a chance to live life again. I just hope my mom will see that. Thank you Mike for taking the time to read my post and to reply to me. :)
Wow! That is great news to hear! I can't wait to tell my mom! What a blessing it is to get a chance to live life again. I just hope my mom will see that. Thank you Mike for taking the time to read my post and to reply to me. :)
Thank you Hector for all the information! I appreciate every bit of advice! My mom does have fluid in her abdomen, but she gets most of it in her lungs. She has sever cramps in her legs and swelling. Her nose bleeds often. She has not been in a coma. She is being seen by the head director of liver transplant in Baylor of Dallas and they say she is able to try and treat her Hep. C but with only a 30% chance of success. They said most likely she will need a liver transplant either way. I think pretty soon here my family will have to have an intervention and give her all the facts. I've tried to tell her myself, but I think that if she has her whole family talking to her she might listen. I am very grateful to have found this website, you and a few others have helped me and my mom see things in a different light. I do believe that the way you think has a big effect on how you feel. She seems mentally strong. Thank you again for your post and helping me see that we are not alone in this fight.! And thank you for your courage it inspires me and makes me see how lucky I am.
I will be 12 years post transplant in June of this year.
And life is good.
Michael
And life is good.
Michael
Hi,
Reading your post, makes me remember how I felt before my live liver transplant
Slowly, my energy slipped away. I slept more and more as my condition worsened.
There are many people who have lived more than 10 years with a liver transplant. In fact one of them, is a member of this forum, though he doesn't post much anymore.
My daughter was my donor and I couldn't be more pleased, and I know she feels the same.
As Hector mentioned, you need to find a good transplant center and education yourself.
Good luck,
OH
Reading your post, makes me remember how I felt before my live liver transplant
Slowly, my energy slipped away. I slept more and more as my condition worsened.
There are many people who have lived more than 10 years with a liver transplant. In fact one of them, is a member of this forum, though he doesn't post much anymore.
My daughter was my donor and I couldn't be more pleased, and I know she feels the same.
As Hector mentioned, you need to find a good transplant center and education yourself.
Good luck,
OH
After rereading my posts I realized that the information may appear to be bleak at first. I could tell you that everything will be fine, don't worry, etc. but it would be dishonest to do so. The fact is that advance liver disease is a horrible disease to live with and once a patient progresses past a certain stage of disease the options come down to... allow the liver to fail in time or get a liver transplant. I am sorry there are no other options.
The good news is there are many of us in the same boat. (16,071 patients are waiting for a liver transplant as of today) Your mother is not going through this alone. I and a number of my friend are waiting for a life-saving transplant. If we don't get it we know the outcome. We want to live despite all the suffering each of us has gone through and will go through. One of the advantages of being treated at a large transplant center such as Baylor is, they have support groups for people waiting for a transplant. There is no substitute for us who are suffering pre-transplant than to meet others who have gotten their transplants and living their lives because someone was generous enough to think of others and to have donated their liver when they died. These meeting are for Caregivers like yourself too. You can learn from others how to best care for your mom during the entire process. The caregiver plays a vital role in the transplantation process. It can't be over stated.
I know it is frightening what your mom is going through. But the more you understand about End-Stage Liver Disease (ESLD) you will realize it doesn't have to be a death sentence. As I mentioned before I decompensated in 2009 and have been ill to various degrees since then. I can no longer work and my whole life has changed. 6 months ago I was diagnosed with liver cancer. One of the deathliest cancers there is. If I don't get a transplant before the cancer spreads or I develop too many tumors or if the tumors get too large my time will be short. I'm not giving up because things have gone from bad to worse for me. No. I plan on fighting this thing either until I get a transplant or my doctor tells me there is nothing they can do for me. Anyone with a fatal disease has to want to fight on to have a chance. Once a patient gives up mentally I'm afraid a person's health condition usually deteriorates accordingly. I am not saying this is a picnic or anything. I am just saying it can be done and there are many thousands of people alive today enjoying life that would not be with us if they didn't receive a transplant. I never use the word miracle. But when you see a person at death's door and then a few days after transplant they look human again it is quite shocking and amazing what current medicine can do.
I truly hope that as you and your mom learn more about transplant you will be able to look at it in a realistic light. The bottom line is it is a life saving procedure that can extend your mom's life years beyond the natural course that she, myself and so many are on.
I hope this helps you feel a little better. And realize there is hope out there and people that will do everything in their power to keep your mom alive as long as possible. That encourages me every day to do my part in the process and believe I will survive this somehow someway.
Here are some links to educate yourself about the liver transplant process that you and your mother may find helpful.
This is an excellent overview of organ transplant. It covers other types of transplant but does an excellent job of explaining the transplant process.
http://www.unos.org/docs/WEPNTK.pdf
The Patient’s Guide to Transplantation
http://www.unos.org/docs/PartneringWithTransplantTeam.pdf
Beaumont Transplant Office and Clinic Directory
http://www.beaumont.edu/files/imce/pdfs/Your%20Liver%20Transplant.pdf
For Transplant Candidates about Liver Allocation Policy
http://www.unos.org/docs/Liver_patient.pdf
What lies behind us and what lies before us are small matters compared to what lies within us.
– Ralph Waldo Emerson
Hector
The good news is there are many of us in the same boat. (16,071 patients are waiting for a liver transplant as of today) Your mother is not going through this alone. I and a number of my friend are waiting for a life-saving transplant. If we don't get it we know the outcome. We want to live despite all the suffering each of us has gone through and will go through. One of the advantages of being treated at a large transplant center such as Baylor is, they have support groups for people waiting for a transplant. There is no substitute for us who are suffering pre-transplant than to meet others who have gotten their transplants and living their lives because someone was generous enough to think of others and to have donated their liver when they died. These meeting are for Caregivers like yourself too. You can learn from others how to best care for your mom during the entire process. The caregiver plays a vital role in the transplantation process. It can't be over stated.
I know it is frightening what your mom is going through. But the more you understand about End-Stage Liver Disease (ESLD) you will realize it doesn't have to be a death sentence. As I mentioned before I decompensated in 2009 and have been ill to various degrees since then. I can no longer work and my whole life has changed. 6 months ago I was diagnosed with liver cancer. One of the deathliest cancers there is. If I don't get a transplant before the cancer spreads or I develop too many tumors or if the tumors get too large my time will be short. I'm not giving up because things have gone from bad to worse for me. No. I plan on fighting this thing either until I get a transplant or my doctor tells me there is nothing they can do for me. Anyone with a fatal disease has to want to fight on to have a chance. Once a patient gives up mentally I'm afraid a person's health condition usually deteriorates accordingly. I am not saying this is a picnic or anything. I am just saying it can be done and there are many thousands of people alive today enjoying life that would not be with us if they didn't receive a transplant. I never use the word miracle. But when you see a person at death's door and then a few days after transplant they look human again it is quite shocking and amazing what current medicine can do.
I truly hope that as you and your mom learn more about transplant you will be able to look at it in a realistic light. The bottom line is it is a life saving procedure that can extend your mom's life years beyond the natural course that she, myself and so many are on.
I hope this helps you feel a little better. And realize there is hope out there and people that will do everything in their power to keep your mom alive as long as possible. That encourages me every day to do my part in the process and believe I will survive this somehow someway.
Here are some links to educate yourself about the liver transplant process that you and your mother may find helpful.
This is an excellent overview of organ transplant. It covers other types of transplant but does an excellent job of explaining the transplant process.
http://www.unos.org/docs/WEPNTK.pdf
The Patient’s Guide to Transplantation
http://www.unos.org/docs/PartneringWithTransplantTeam.pdf
Beaumont Transplant Office and Clinic Directory
http://www.beaumont.edu/files/imce/pdfs/Your%20Liver%20Transplant.pdf
For Transplant Candidates about Liver Allocation Policy
http://www.unos.org/docs/Liver_patient.pdf
What lies behind us and what lies before us are small matters compared to what lies within us.
– Ralph Waldo Emerson
Hector
I am very sorry to hear about your mother's condition. It is really up to your mother to decide what happens. No one except the patient can decide if they want to be treated and what they till do and not do. I know this must be very difficult for your and your sisters.
In order for your mom to have the best chance of living she needs to be treated at a large transplant center near you. There work with patients with cirrhosis everyday and can provide the best care possible. Baylor University Medical Center is the best in your area. I hope this is where she is going. Baylor info 214-820-2050. There have been doing transplants for ten years.
Baylor Dallas' 3-year liver transplant patient survival rate is an impressive 83.13% which exceeds the expected rate of 78.99%.
There are a few things that don't make sense to me so if you could clarify I can be more helpful.
"She has cirrhosis of the liver and is decompensated since 2009."
Is your mother decompensated? Meaning does she experience bloating of the abdomen and low legs, ankles and feet? Does she have enlarged veins in her esophagus? Has she ever vomited blood? Does she have mental symptoms such as disorientation, forgetting where she is, stubbing around and going into a coma?
What is her MELD score?
The doctor that is treating her is a hepatologist at a transplant center? Yes?
If you mother is decompensated in the vast majority of cases she is too ill to have her hepatitis treated. So when you says she decompensated in 2009 and the doctor still wants to treat her... doesn't really make sense.
"most of the liver doctors we have seen have never treated a person with geno type 6. They say its very similar to type 1."
Not sure who told you this but they are mistaken. If she is compensated than the chances of cure are very high unlike genotype 1. 62% to 92%. So it would be more toward the 62% which is very high with only interferon and ribavirin.
"Patients infected with HCV genotype 6 can expect higher SVR compared with patients with HCV genotype 1 and their SVR to [pegylated interferon] and [ribavirin] is probably similar to that of patients with HCV genotypes 2 and 3," they continued. "SVR rates also appear to be similar in patients with HCV genotype 6 who receive 24 weeks of [pegylated interferon] and [ribavirin] and those who receive 48 weeks of therapy, though additional studies are needed to recommend 24 weeks as the optimal treatment duration for these patients."
T Chao, K Abe, and MH Nguyen. Systematic review: epidemiology of hepatitis C genotype 6 and its management. Alimentary Pharmacology and Therapeutics34(3): 286-296 August 2011.
I am sorry but based on the information you have provided if your mother refuses to have a transplant in time the outcome is inevitable. She doesn't need to risk her daughters health. She can wait until she is very sick and she will be able to get a cadaver liver like most liver transplant patients. As long as she has no other major medical conditions and is healthy enough to survive a transplant operation.
She needs to realize that in order to continue to live she must have a liver transplant. She will only get sicker and sicker and suffer more as time goes on.
After her transplant she can be treated for her hepatitis C. If she can be cured it she will have a longer life than if she can't be cured of hep C. There is no predicting how long someone will live after a transplant. I know many people who have survived 5-10-15 and a few 20 years. Everyone is unique. But without a transplant the chance of surviving is 0%.
Your mom needs to want to live and needs to want to have a transplant. There are thousands of people waiting for a liver right now. Most of us will go through whatever we have to to get that life-giving gift. If someone doesn't want to live they are not qualified for a transplant according to the rules of being listed for a transplant. People die every day waiting for a transplant. So livers are not given to those that won't take care of a new liver. A transplant is a lifetime commitment all transplant recipients must make. A transplant recipient must take there medicine very day for the rest of there lives and have periodic tests to make sure their new liver says healthy.
So unless you can chance your mother's mind I'm afraid her prognosis is not good.
Educate yourself about advanced liver disease and liver transplant (there are many great resources online. If you need some suggestions I can provide them to you) and hopefully you can change her mind. You mother is still young. Doesn't she realize it is going to hurt everyone if she gives up and decides to die?
Best of luck to you! You are in a very difficult position.
Hector
In order for your mom to have the best chance of living she needs to be treated at a large transplant center near you. There work with patients with cirrhosis everyday and can provide the best care possible. Baylor University Medical Center is the best in your area. I hope this is where she is going. Baylor info 214-820-2050. There have been doing transplants for ten years.
Baylor Dallas' 3-year liver transplant patient survival rate is an impressive 83.13% which exceeds the expected rate of 78.99%.
There are a few things that don't make sense to me so if you could clarify I can be more helpful.
"She has cirrhosis of the liver and is decompensated since 2009."
Is your mother decompensated? Meaning does she experience bloating of the abdomen and low legs, ankles and feet? Does she have enlarged veins in her esophagus? Has she ever vomited blood? Does she have mental symptoms such as disorientation, forgetting where she is, stubbing around and going into a coma?
What is her MELD score?
The doctor that is treating her is a hepatologist at a transplant center? Yes?
If you mother is decompensated in the vast majority of cases she is too ill to have her hepatitis treated. So when you says she decompensated in 2009 and the doctor still wants to treat her... doesn't really make sense.
"most of the liver doctors we have seen have never treated a person with geno type 6. They say its very similar to type 1."
Not sure who told you this but they are mistaken. If she is compensated than the chances of cure are very high unlike genotype 1. 62% to 92%. So it would be more toward the 62% which is very high with only interferon and ribavirin.
"Patients infected with HCV genotype 6 can expect higher SVR compared with patients with HCV genotype 1 and their SVR to [pegylated interferon] and [ribavirin] is probably similar to that of patients with HCV genotypes 2 and 3," they continued. "SVR rates also appear to be similar in patients with HCV genotype 6 who receive 24 weeks of [pegylated interferon] and [ribavirin] and those who receive 48 weeks of therapy, though additional studies are needed to recommend 24 weeks as the optimal treatment duration for these patients."
T Chao, K Abe, and MH Nguyen. Systematic review: epidemiology of hepatitis C genotype 6 and its management. Alimentary Pharmacology and Therapeutics34(3): 286-296 August 2011.
I am sorry but based on the information you have provided if your mother refuses to have a transplant in time the outcome is inevitable. She doesn't need to risk her daughters health. She can wait until she is very sick and she will be able to get a cadaver liver like most liver transplant patients. As long as she has no other major medical conditions and is healthy enough to survive a transplant operation.
She needs to realize that in order to continue to live she must have a liver transplant. She will only get sicker and sicker and suffer more as time goes on.
After her transplant she can be treated for her hepatitis C. If she can be cured it she will have a longer life than if she can't be cured of hep C. There is no predicting how long someone will live after a transplant. I know many people who have survived 5-10-15 and a few 20 years. Everyone is unique. But without a transplant the chance of surviving is 0%.
Your mom needs to want to live and needs to want to have a transplant. There are thousands of people waiting for a liver right now. Most of us will go through whatever we have to to get that life-giving gift. If someone doesn't want to live they are not qualified for a transplant according to the rules of being listed for a transplant. People die every day waiting for a transplant. So livers are not given to those that won't take care of a new liver. A transplant is a lifetime commitment all transplant recipients must make. A transplant recipient must take there medicine very day for the rest of there lives and have periodic tests to make sure their new liver says healthy.
So unless you can chance your mother's mind I'm afraid her prognosis is not good.
Educate yourself about advanced liver disease and liver transplant (there are many great resources online. If you need some suggestions I can provide them to you) and hopefully you can change her mind. You mother is still young. Doesn't she realize it is going to hurt everyone if she gives up and decides to die?
Best of luck to you! You are in a very difficult position.
Hector
Hi there, sorry to hear about your mothers health, its sounds like she is lucky by having such caring daughters. Yeah genotype 6 is very rare around here. I think this is the first time i've heard someone with it.
We have several here that has been thru a liver TP, one of those is longtime member Mikesimon. He is well past the 10 year mark and the last i heard he is doing great and living a full life. You might flag him down, i'm sure he would be happy to answer any concerns you all might have... Mikes a good guy.
Wishing you all the very best,
cando
We have several here that has been thru a liver TP, one of those is longtime member Mikesimon. He is well past the 10 year mark and the last i heard he is doing great and living a full life. You might flag him down, i'm sure he would be happy to answer any concerns you all might have... Mikes a good guy.
Wishing you all the very best,
cando
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