Aa
Hepatitis and Hemophilia and More. . .
I have 2 brothers with Hemophilia , Hepatitis AB+C,
and HIV from a murderous blood transfusion, that many hemphiliacs
have already died from.
They are grown men.
It is a miracle that they are still here!
Doctors keep telling them to "go on a last big vacation
and have fun!" Then they bounce back. But each time is
at a different level of health. Now it is getting to a point
where they have to take interferon, or keep going down.
One wants to try interferon, the other won't.
I will be crushed when they are gone.
Do you think that Interferon, with all of its side
effects, is a good idea?
Can anyone relate to this ?
and HIV from a murderous blood transfusion, that many hemphiliacs
have already died from.
They are grown men.
It is a miracle that they are still here!
Doctors keep telling them to "go on a last big vacation
and have fun!" Then they bounce back. But each time is
at a different level of health. Now it is getting to a point
where they have to take interferon, or keep going down.
One wants to try interferon, the other won't.
I will be crushed when they are gone.
Do you think that Interferon, with all of its side
effects, is a good idea?
Can anyone relate to this ?
the next time you will hear about this situation,
it will be under a new heading. I will get my brothers
started on this site for Hepatitis. They do have a computer
at their house. I'll have to bookmark it.
I want them to feel free to write in private.
I will step off of that conversation.
This place is for them, most of all. Thank you, M.
it will be under a new heading. I will get my brothers
started on this site for Hepatitis. They do have a computer
at their house. I'll have to bookmark it.
I want them to feel free to write in private.
I will step off of that conversation.
This place is for them, most of all. Thank you, M.
I think that DJL is right, and that I should get
my brother over here, on my computer, to speak for himself.
I think he will within a week. He is the one who knows the
most about his own feelings. It was ver interesting to read
about the fact that during whole blood tranfusions, that the
DNA of other people were also being transferred. It is true,
that they have had alot of transfusions, before factor 8.
And between whole blood and factor 8 - they had something made from
pig blood! (closest to human)
I am a carrier. I was not going to have any children. But when I was only 20, I married an older guy who had total faith that
we would have healthy children. I have 2 daughters. One is a
carrier, and one is not. I have a little grandson, wonderful
in every way, like my brothers, but he has severe hemophilia.
What an amazing difference in his life, the new synthetic medicine, has made. I wilted every time he bumped or scraped himself. But he will never experience the vulnerability that
my own brothers have had to. Seeing that progress, from my
position on the sideline, has shown me that there are people
who care enough to get educated and work every day to find cures.
So, no, I won't give up hope. Not for anyone.
There has been alot of bitterness about those HIV loaded blood
transfusions. We even wondered if it wasn't intentional.
That is how lowly valued some hemophiliacs feel.
I have to go, for now.
Thanks for keeping up with me.
MAF
my brother over here, on my computer, to speak for himself.
I think he will within a week. He is the one who knows the
most about his own feelings. It was ver interesting to read
about the fact that during whole blood tranfusions, that the
DNA of other people were also being transferred. It is true,
that they have had alot of transfusions, before factor 8.
And between whole blood and factor 8 - they had something made from
pig blood! (closest to human)
I am a carrier. I was not going to have any children. But when I was only 20, I married an older guy who had total faith that
we would have healthy children. I have 2 daughters. One is a
carrier, and one is not. I have a little grandson, wonderful
in every way, like my brothers, but he has severe hemophilia.
What an amazing difference in his life, the new synthetic medicine, has made. I wilted every time he bumped or scraped himself. But he will never experience the vulnerability that
my own brothers have had to. Seeing that progress, from my
position on the sideline, has shown me that there are people
who care enough to get educated and work every day to find cures.
So, no, I won't give up hope. Not for anyone.
There has been alot of bitterness about those HIV loaded blood
transfusions. We even wondered if it wasn't intentional.
That is how lowly valued some hemophiliacs feel.
I have to go, for now.
Thanks for keeping up with me.
MAF
Years ago I was told by a Dr. Levine is Boston that the factor 8 replacement therapy that your brothers had would somehow effect your immune system with the result that you would become more resistant to viruses and infections. That might be the reason that your brother is so tough. I recall the rationale was that you would be exposed to all kinds of **** from the treatments. As you probably know, each one of those little vials your brothers used to take contained factor obtained from human blood that was dumped into vats. God knows how many persons dna was in each vial.
I think you may be able to track down Dr. Levine at either Mass General or, even likelier, Boston Children's. He was/is the guru on hemophilia and I'm sure he is up to date on HCV/HIV coinfection.
DJL
I think you may be able to track down Dr. Levine at either Mass General or, even likelier, Boston Children's. He was/is the guru on hemophilia and I'm sure he is up to date on HCV/HIV coinfection.
DJL
I don't think we know what condition mmmooo's brother's liver is in. It could be that it is in pretty good shape and a transplant is not necessary. What concerns me is not really the HCV and xplant but rather the HIV and what will happen with it when the anti rejection drugs come online. I think the cocktail will keep the virus in check. If mmmooo's brother is eager to start tx, I say go for it if the Dr. says it is ok and get rid of the HCV. In fact, I would like to see mooo's brother(s) post here so's we can chat.
DJL
DJL
interesting that the post transplant hcv infection is discussed here, since just last month we had two posts on post transplant advancing hcv, within a year, sadly. It is a good idea to try the interferon, since they still have to be scored for transplant listing. They might not score "high" enough for it at this time and treating hcv might give the liver a reprieve.
I think lvdbygd had the link to the liver failure site, maybe a google search of liverfailure support groups can yield the url.
best to you and brothers
I think lvdbygd had the link to the liver failure site, maybe a google search of liverfailure support groups can yield the url.
best to you and brothers
All you can do is try and hope for the best. Hopefully, you'll be checking out transplant centers while your brother tries the inteferon. If inteferon proves too difficult, maybe they will go right to transplant and deal with the virus later. Not really sure on the procedure here.
It sounds like your brother has been suprising a lot of the doctors and hopefully he will continue doing just that and get better. And who knows what treatments will be avaliable in a few years.
All the best to your family and please keep in touch with any progress or questions.
You might also want to check out some liver failure support groups on the internet.
I'm not sure of the names, but I heard one mentioned over at the Janis Hep C site, so if you post over there, I'm sure someone can direct you. http://tinyurl.com/8eqdd
It's also an excellent site for information and you may be able to get additional feedback there.
-- Jim
It sounds like your brother has been suprising a lot of the doctors and hopefully he will continue doing just that and get better. And who knows what treatments will be avaliable in a few years.
All the best to your family and please keep in touch with any progress or questions.
You might also want to check out some liver failure support groups on the internet.
I'm not sure of the names, but I heard one mentioned over at the Janis Hep C site, so if you post over there, I'm sure someone can direct you. http://tinyurl.com/8eqdd
It's also an excellent site for information and you may be able to get additional feedback there.
-- Jim
thanks for all of the new information. Jim, you are very
perceptive. I did already know that hep and HIV can hurt a new
liver. The question will be, what is my brother willing to try.
He is 42. And, for Hemophiliacs, especially who became sicker
from the bad blood transfusions, it is striking. Their
doctors cannot believe they keep on going. Not that they don't have very bad stretches of time. They do. I took my Brother to a new park yesterday, and we walked for about 10 minutes. He wants
to have his first interferon, at the end of the week. It can be
hard for him to talk about his treatment. Like the new writer
on this question said, they are Factor 8 deficient, so they have
been sick all of their lives. There was no facor 8 replacement therapy when they were young. They would have to suffer and moan and yell through those joint bleeds. I have to try to understand
that they might give up fighting, if the treatment is too harsh.
I don't need to dramatize. It is already dramatic at the barest level. M.
perceptive. I did already know that hep and HIV can hurt a new
liver. The question will be, what is my brother willing to try.
He is 42. And, for Hemophiliacs, especially who became sicker
from the bad blood transfusions, it is striking. Their
doctors cannot believe they keep on going. Not that they don't have very bad stretches of time. They do. I took my Brother to a new park yesterday, and we walked for about 10 minutes. He wants
to have his first interferon, at the end of the week. It can be
hard for him to talk about his treatment. Like the new writer
on this question said, they are Factor 8 deficient, so they have
been sick all of their lives. There was no facor 8 replacement therapy when they were young. They would have to suffer and moan and yell through those joint bleeds. I have to try to understand
that they might give up fighting, if the treatment is too harsh.
I don't need to dramatize. It is already dramatic at the barest level. M.
Sorry about your own history with the disease.
Mmoo came here with a cloud of resignation regarding his two brothers and Dr. Dieterich offered them all a path of hope based on modern treatments. Hopefully, Mmoo will follow-up and seek consultation at a major hepatitis c treatment/transplant center and get his brothers re-evaulated.
Again, the fact that a transplanted liver gradually can become re-infected with hepatitis c does not mean these transplants are unsuccessful. To the contrary, they offer very good outcomes both in terms of quality of life and increased longevity.
I think that's all that is important.
-- Jim
Mmoo came here with a cloud of resignation regarding his two brothers and Dr. Dieterich offered them all a path of hope based on modern treatments. Hopefully, Mmoo will follow-up and seek consultation at a major hepatitis c treatment/transplant center and get his brothers re-evaulated.
Again, the fact that a transplanted liver gradually can become re-infected with hepatitis c does not mean these transplants are unsuccessful. To the contrary, they offer very good outcomes both in terms of quality of life and increased longevity.
I think that's all that is important.
-- Jim
Dr. Dieterich replied. He said that a Liver Transplant
would cure both the Hepatitis AND the Hemophilia,
That stunned me! My parents had 11 children. Of the 8
boys, 5 had Hemophilia. Three are "passed." All the
years that they have been doing transplants, I cannot believe that I never heard that a liver transplant was a cure.
I am changing my focus to THAT path, and already talked to my brother about it, last night. Thank you so much for your advice.
It opened up a brand new door. M.
would cure both the Hepatitis AND the Hemophilia,
That stunned me! My parents had 11 children. Of the 8
boys, 5 had Hemophilia. Three are "passed." All the
years that they have been doing transplants, I cannot believe that I never heard that a liver transplant was a cure.
I am changing my focus to THAT path, and already talked to my brother about it, last night. Thank you so much for your advice.
It opened up a brand new door. M.
That is good news! I just read Dieterich's reply.
It appears he's suggesting a try at treatment with liver transplant as a back up.
Because your brother's cases are complex, you really need to work with sophisticated doctors who treat hep c at a major transplant center. If you don't have one in your area, you might have to travel at least for an initial consult. There is liver transplant forum but I don't know its name. Maybe some others here might.
Good luck and keep us posted.
-- Jim
It appears he's suggesting a try at treatment with liver transplant as a back up.
Because your brother's cases are complex, you really need to work with sophisticated doctors who treat hep c at a major transplant center. If you don't have one in your area, you might have to travel at least for an initial consult. There is liver transplant forum but I don't know its name. Maybe some others here might.
Good luck and keep us posted.
-- Jim
My post was based on 39 years of experience with a factor 8 deficiency. Luckily, I do not have the severe form of the disease, but I was able to contract hep c (which thankfully now is gone) from the clotting factor.
As far as an "overly gloomy picture," all I can say is that I went to summer camp in the 1970's with a bunch of kids who had various forms of hemophilia. By 1995, over 90 percent of us were dead, mainly due to AIDS. These dead people were 10 year old kids running around and playing in 1974. Every single kid there had hep C by 1995. It does get pretty gloomy, for that you can thank the Red Cross and their tainted blood. There was a secret, you see. I got medicine from Baxter Labs. Baxter heat-treated their medicine as a matter of course. Heat treating killed HIV, buy HCV is tougher than HIV. Thus, I may have contracted HCV, but not HIV. Fair trade, seems to me.
Now the medicine is synthetic.
DJL
As far as an "overly gloomy picture," all I can say is that I went to summer camp in the 1970's with a bunch of kids who had various forms of hemophilia. By 1995, over 90 percent of us were dead, mainly due to AIDS. These dead people were 10 year old kids running around and playing in 1974. Every single kid there had hep C by 1995. It does get pretty gloomy, for that you can thank the Red Cross and their tainted blood. There was a secret, you see. I got medicine from Baxter Labs. Baxter heat-treated their medicine as a matter of course. Heat treating killed HIV, buy HCV is tougher than HIV. Thus, I may have contracted HCV, but not HIV. Fair trade, seems to me.
Now the medicine is synthetic.
DJL
Rifleman,
I think you're taking Dr. Dieterich's reply too literally, and are perhaps unintentionally painting an overly gloomy picture in the case of mmooo's brothers.
Yes, liver transplant does not "cure" hepatitis c in the literal sense. (And then again some studies show that applies to all of us as well.) However, post-transplant prognosis is good in most cases without major damage to the liver.
You say, "the new liver will be likely be infected with hepatitis c in short order". Yes, but again that's only part of the story. In most cases, the liver only *gradually* becomes infected with hepatitis c post-transplant. That means there's time to still treat either with current or newer treatments still to come. Hepatitis c infection severe enough to cause post-transplant failure is not the norm.
Dr. Dieterich is offering mmooo's brothers hope and a path to that hope. Liver transplant is not perfect, but it seems the right option to explore for mmooo's brothers should they not be able to treat the virus beforehand.
-- Jim
I think you're taking Dr. Dieterich's reply too literally, and are perhaps unintentionally painting an overly gloomy picture in the case of mmooo's brothers.
Yes, liver transplant does not "cure" hepatitis c in the literal sense. (And then again some studies show that applies to all of us as well.) However, post-transplant prognosis is good in most cases without major damage to the liver.
You say, "the new liver will be likely be infected with hepatitis c in short order". Yes, but again that's only part of the story. In most cases, the liver only *gradually* becomes infected with hepatitis c post-transplant. That means there's time to still treat either with current or newer treatments still to come. Hepatitis c infection severe enough to cause post-transplant failure is not the norm.
Dr. Dieterich is offering mmooo's brothers hope and a path to that hope. Liver transplant is not perfect, but it seems the right option to explore for mmooo's brothers should they not be able to treat the virus beforehand.
-- Jim
Hemophilia is caused by a defective clotting factor, of which there are many. Your brothers are likely factor 8 deficient. These proteins are produced by the liver, but are abnormal because of genetic issues. Replace the liver with a normal liver and you cure the problem.
Will a liver xplant cure hemophilia? Yes. Will it cure hep c? No. The new liver will likely be infected with hep c in short order.
Back in the early 80's Dr.s learned that a liver transplant could cure hemophilia so they went ahead and did some. This was in the early days of AIDS before it was known that HIV was transmitted by blood products (I believe it was called "Gay Related Immune Deficiency," or GRID, at the time). In any event, the transplanted people had HIV infection, but nobody knew it. With the anti-rejection drugs they had to take, the HIV went wild and all of the recipients died in a matter of weeks.
How old are your brothers. I'm guessing that they were born in the 50's due to the comment that they were only expected to live to 12. Damn scary disease before they learned how to replace the missing protein. I think they used to do whole-blood transfusions to treat bleeding.
DJL
Will a liver xplant cure hemophilia? Yes. Will it cure hep c? No. The new liver will likely be infected with hep c in short order.
Back in the early 80's Dr.s learned that a liver transplant could cure hemophilia so they went ahead and did some. This was in the early days of AIDS before it was known that HIV was transmitted by blood products (I believe it was called "Gay Related Immune Deficiency," or GRID, at the time). In any event, the transplanted people had HIV infection, but nobody knew it. With the anti-rejection drugs they had to take, the HIV went wild and all of the recipients died in a matter of weeks.
How old are your brothers. I'm guessing that they were born in the 50's due to the comment that they were only expected to live to 12. Damn scary disease before they learned how to replace the missing protein. I think they used to do whole-blood transfusions to treat bleeding.
DJL
I typed a question to Dr. D. In New York,
but there is no response yet.
More details...well they live at my Mom's
house, now. There is no structure to their day.
They get up midafternoon, and my Mom is 81, so she
doesn't cook much. Her latest comment to me, when I talked about their health was, "They were not supposed to live
past 12." She is no help. Problems of her own.
I try to get them over here,
to my place, where it is sunny, and we split
food from restraunts, because they are so cautious
about germs. It is wierd, because they are living in that
110 year old house (not kidding) and it is going to just
implode someday. It is difficult
for me to even go inside. So much old drama.
I wish that there was a house they could go to, where
other people share their situation, but I have
been already told that they can't
go to a place like that, until they are 6 weeks from death.
Their Medical care is being headed by
a Hematoligist. She send them around to to other doctors
in Indiana. They ramble through time with humor, (out of space... )
but there is no response yet.
More details...well they live at my Mom's
house, now. There is no structure to their day.
They get up midafternoon, and my Mom is 81, so she
doesn't cook much. Her latest comment to me, when I talked about their health was, "They were not supposed to live
past 12." She is no help. Problems of her own.
I try to get them over here,
to my place, where it is sunny, and we split
food from restraunts, because they are so cautious
about germs. It is wierd, because they are living in that
110 year old house (not kidding) and it is going to just
implode someday. It is difficult
for me to even go inside. So much old drama.
I wish that there was a house they could go to, where
other people share their situation, but I have
been already told that they can't
go to a place like that, until they are 6 weeks from death.
Their Medical care is being headed by
a Hematoligist. She send them around to to other doctors
in Indiana. They ramble through time with humor, (out of space... )
I typed a question to Dr. D. In New York,
but there is no response yet.
More details...well they live at my Mom's
house, now. There is no structure to their day.
They get up midafternoon, and my Mom is 81, so she
doesn't cook much. Her latest comment to me, when I talked about their health was, "They were not supposed to live
past 12." She is no help. Problems of her own.
I try to get them over here,
to my place, where it is sunny, and we split
food from restraunts, because they are so cautious
about germs. It is wierd, because they are living in that
110 year old house (not kidding) and it is going to just
implode someday. It is difficult
for me to even go inside. So much old drama.
I wish that there was a house they could go to, where
other people share their situation, but I have
been already told that they can't
go to a place like that, until they are 6 weeks from death.
Their Medical care is being headed by
a Hematoligist. She send them around to to other doctors
in Indiana. They ramble through time with humor, (out of space... )
but there is no response yet.
More details...well they live at my Mom's
house, now. There is no structure to their day.
They get up midafternoon, and my Mom is 81, so she
doesn't cook much. Her latest comment to me, when I talked about their health was, "They were not supposed to live
past 12." She is no help. Problems of her own.
I try to get them over here,
to my place, where it is sunny, and we split
food from restraunts, because they are so cautious
about germs. It is wierd, because they are living in that
110 year old house (not kidding) and it is going to just
implode someday. It is difficult
for me to even go inside. So much old drama.
I wish that there was a house they could go to, where
other people share their situation, but I have
been already told that they can't
go to a place like that, until they are 6 weeks from death.
Their Medical care is being headed by
a Hematoligist. She send them around to to other doctors
in Indiana. They ramble through time with humor, (out of space... )
Sometimes it takes a while to get an answer on that forum.
You could try calling Dietrich's office at New York's Mt Sinai hospital. Maybe you could speak to him on the phone, or they would give you his email address.
If you can't get hold of him, he probably has an assistant or nurse practioner who might get on the phone or via email. Just plead your case and emphasize how sick both your brothers are and the fact they're co-infected HIV/HCV.
You're in Indiana. Maybe others can recommend a doctor closer who can help.
-- Jim
You could try calling Dietrich's office at New York's Mt Sinai hospital. Maybe you could speak to him on the phone, or they would give you his email address.
If you can't get hold of him, he probably has an assistant or nurse practioner who might get on the phone or via email. Just plead your case and emphasize how sick both your brothers are and the fact they're co-infected HIV/HCV.
You're in Indiana. Maybe others can recommend a doctor closer who can help.
-- Jim
Hey guys. :)
mmmooo...Let us know how things work out. Besides posting your question -- try and give a few more details if you can -- also spend some time looking through the archives on the web site.
But at some point soon, your brothers really need to see a specialist. If you live near New York City, try Dieterch, or consider just coming up for a single consultation, and after that maybe he could work with your regular doctor.
You could also call his office and ask for a recommendation of a specilist near where you live although not sure how many doctors specialize in co-infected patients. His phone number is on some of his answers but if you have to look it up, he works at Mt Sinai Hospital, New York City.
-- Jim
mmmooo...Let us know how things work out. Besides posting your question -- try and give a few more details if you can -- also spend some time looking through the archives on the web site.
But at some point soon, your brothers really need to see a specialist. If you live near New York City, try Dieterch, or consider just coming up for a single consultation, and after that maybe he could work with your regular doctor.
You could also call his office and ask for a recommendation of a specilist near where you live although not sure how many doctors specialize in co-infected patients. His phone number is on some of his answers but if you have to look it up, he works at Mt Sinai Hospital, New York City.
-- Jim
Hepatitis c progresses faster in HIV co-infected patients. But the good news is that can both be treated.
Ignore what "doctors" are saying. Your brothers should be evaluated by someone who is knowlegeable in HCV/HIV co-infections.
You might post a similar question at this web site:
http://www.thebody.com/Forums/AIDS/Hepatitis/
Dr. Dieterich specializes in HepC/HIV co-infected patients.
Try and get your brothers to some doctors that understand the options. Your brothers are lucky to have you in their corner. It's obvious you really care.
-- Jim
Ignore what "doctors" are saying. Your brothers should be evaluated by someone who is knowlegeable in HCV/HIV co-infections.
You might post a similar question at this web site:
http://www.thebody.com/Forums/AIDS/Hepatitis/
Dr. Dieterich specializes in HepC/HIV co-infected patients.
Try and get your brothers to some doctors that understand the options. Your brothers are lucky to have you in their corner. It's obvious you really care.
-- Jim
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