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Needing help for first appointment
My baby brother (47years old) was just diagnosed with stage 4 cirrhosis and he is HCV positive. He has his first appointment with a specialist on the 18th of this month. We are trying to absorb this news and come up with our questions but we are all in such a state of shock at this point we don't even know where to start. Can any of you please help me to compile a relevant list of questions? I am assuming a liver transplant is his only option but what questions do I have about that? Would a living donor be better than waiting? How much time do we have to wait? What are our best chances? Is it even possible for him to treat the HCV now with his liver in the conditions it currently is? If the HCV isn't cleared from his system what will the chances be for the new liver to stay healthy? Any and all help you can give us would be deeply appreciated.
Thank you in advance for your guidance. <3
Thank you in advance for your guidance. <3
It looks like Dr. Trotter is a transplant doctor with the Baylor system - a good place. Gosh, he looks young (I googled him) but that is good. The young hepatologists are staying on top of the field. I treated for Hep C in Dallas at the Liver Institute at Methodist Hospital with Dr Mubarak.
Your brother is young.and I am going to guess he has not yet had a biopsy. There are ways the doctors can tell a little about the state of the liver from an examination or blood test, but the best way is through a biospy which is relatively painless (I have had 3). Unless he has advanced cirrhosis and the doctor thinks it would be dangerous, he will probably have him get one.
Since he has been having cognitive problems, it could be that he is decompensated, but maybe there are some other issues. I know the mind makes up a lot of stuff when you first get diagnosed. I knew I had hep C since about 1993 but never had a biopsy until 2005 or so. I did not reach cirrhosis until 2011 - at least that was the biopsy that showed it. I treated in 2011-12 for the hep C and am cured (SVR - sustained viral response).
Yes, your brother is in the right place. Just because he was sent to a transplant doctor does not mean he will have to have a transplant. At least you have not said enough yet to lead me to believe he will. Your brother should have a long and healthy and happy life. Cirrhosis, if he does have it, is not a death sentence.
welcome to the forum, frijole
Your brother is young.and I am going to guess he has not yet had a biopsy. There are ways the doctors can tell a little about the state of the liver from an examination or blood test, but the best way is through a biospy which is relatively painless (I have had 3). Unless he has advanced cirrhosis and the doctor thinks it would be dangerous, he will probably have him get one.
Since he has been having cognitive problems, it could be that he is decompensated, but maybe there are some other issues. I know the mind makes up a lot of stuff when you first get diagnosed. I knew I had hep C since about 1993 but never had a biopsy until 2005 or so. I did not reach cirrhosis until 2011 - at least that was the biopsy that showed it. I treated in 2011-12 for the hep C and am cured (SVR - sustained viral response).
Yes, your brother is in the right place. Just because he was sent to a transplant doctor does not mean he will have to have a transplant. At least you have not said enough yet to lead me to believe he will. Your brother should have a long and healthy and happy life. Cirrhosis, if he does have it, is not a death sentence.
welcome to the forum, frijole
You did come to the right spot. What a great sis you are. I know he appreciates it. It is so hard to remember all this stuff when you are diagnosed so having someone be your "brain" is a great gift.
A lot of caregivers are regulars here and on the hep c forum. I'm laughing under my breath because when those who are sick and treating get confused, they keep it straight.
Have an awesome dr visit. Write everything down. Ask lots of questions. Slowly, it starts to make sense. There is hope.
Karen:)
A lot of caregivers are regulars here and on the hep c forum. I'm laughing under my breath because when those who are sick and treating get confused, they keep it straight.
Have an awesome dr visit. Write everything down. Ask lots of questions. Slowly, it starts to make sense. There is hope.
Karen:)
Asle,
Thank you for your reply. I am not sure of his genotype as he doesn't have a copy of his records but he intends to get them at this appointment. I will certainly post my question on the Hepatitis C board as soon as I get home from work.
You are an amazing group of people.
Thank you for your reply. I am not sure of his genotype as he doesn't have a copy of his records but he intends to get them at this appointment. I will certainly post my question on the Hepatitis C board as soon as I get home from work.
You are an amazing group of people.
Hi there. And welcome to the forum.
It may help to post your question in the Hepatitis C forum. It is visited by more people, and as your question needs to have a response pretty quickly, I suggest you do that as well as checking here.
In order to help you better, it will be necessary to find out what Geno subtype he is. Also, Stage 4 on the Metavir scale for fibrosis, doesn't let us know how cirrhotic his liver is. A biopsy will need to be done to give a more accurate reading.
As mzkity mentions, is his liver compensated or decompensated?
You have only a week to go till he sees this Dr Trotter. Is he a hepatologist or a gastroenterologist? No matter. You are going to see a specialist which is the first step.
DO post in the Hepatitis C forum. You are bound to get more replies at this stage.
Good luck.
It may help to post your question in the Hepatitis C forum. It is visited by more people, and as your question needs to have a response pretty quickly, I suggest you do that as well as checking here.
In order to help you better, it will be necessary to find out what Geno subtype he is. Also, Stage 4 on the Metavir scale for fibrosis, doesn't let us know how cirrhotic his liver is. A biopsy will need to be done to give a more accurate reading.
As mzkity mentions, is his liver compensated or decompensated?
You have only a week to go till he sees this Dr Trotter. Is he a hepatologist or a gastroenterologist? No matter. You are going to see a specialist which is the first step.
DO post in the Hepatitis C forum. You are bound to get more replies at this stage.
Good luck.
This is a very good place to come for those things. :) I know these wonderful people have been nothing but a blessing to me and many others,. And thank you for your well wishes :)
Shelley
Shelley
Thank you Shelley, I pray that you are one of the success stories too.
I know a few people just in my small town who have received the gift of life and I am hopeful that my brother will also receive that gift.
I will be sure to let you know how his appointment goes. I have a feeling I will be back here often looking for answers, advice, support and prayers.
Lisa
I know a few people just in my small town who have received the gift of life and I am hopeful that my brother will also receive that gift.
I will be sure to let you know how his appointment goes. I have a feeling I will be back here often looking for answers, advice, support and prayers.
Lisa
Welcome to the forum. There are a lot of very knowledgeable and wonderful people here that can help you far better than I. I am recently diagnosed so I am still learning. If he is already going to a liver doctor at a transplant center that is the best place for him to be. They will be able to give him all of the information and best treatment.
I do want to say however, don't count this as a death sentence. I know it's real scary to hear the diagnosis, but many people live a long time before they ever need a transplant. And many years after that with a transplant. So take a deep breath and try to relax. There is a lot to take in.
My thoughts and prayers are with you. Please let us know how his appointment goes.
Shelley
I do want to say however, don't count this as a death sentence. I know it's real scary to hear the diagnosis, but many people live a long time before they ever need a transplant. And many years after that with a transplant. So take a deep breath and try to relax. There is a lot to take in.
My thoughts and prayers are with you. Please let us know how his appointment goes.
Shelley
Thank you.
I am not sure about many of the questions. My brother just told me all of this news and I am still searching for what questions to even ask him. He is in Dallas Texas and I am in Pennsylvania. He is going to see a Dr. Trotter in Dallas on the 18th of this month. I was told Dr. Trotter is a liver doctor and a transplant doctor so hopefully he will get a lot of answers at his appointment. But it would really be nice to have him go in there with the right questions. He says that he is already having a difficult time with his cognitive ability and although he is an intelligent man he is struggling just to research so I am trying to help him out. I am not sure if that means that he is dealing with an uncompensated liver since he is symptomatic or not. I am so out of my element here. I will ask him if he knows the type of HCV he has and see if he can answer that or not.
Thanks for your reply ! :).
I am not sure about many of the questions. My brother just told me all of this news and I am still searching for what questions to even ask him. He is in Dallas Texas and I am in Pennsylvania. He is going to see a Dr. Trotter in Dallas on the 18th of this month. I was told Dr. Trotter is a liver doctor and a transplant doctor so hopefully he will get a lot of answers at his appointment. But it would really be nice to have him go in there with the right questions. He says that he is already having a difficult time with his cognitive ability and although he is an intelligent man he is struggling just to research so I am trying to help him out. I am not sure if that means that he is dealing with an uncompensated liver since he is symptomatic or not. I am so out of my element here. I will ask him if he knows the type of HCV he has and see if he can answer that or not.
Thanks for your reply ! :).
Hi there, welcome! I can't give to many suggestions except it would help to get more info.
Is his liver decompensated or compensated?
Do you know what geno type his HCV is?
What type of specialist is he seeing?
Sometimes it helps if you you can ad more to your profile, possibly the state your from. (Seems to be more important in the liver forum than other forums)
I'm sure someone will come along and give you some good info. This forum can run a little slower than others, so hang tight!! Good luck!
Is his liver decompensated or compensated?
Do you know what geno type his HCV is?
What type of specialist is he seeing?
Sometimes it helps if you you can ad more to your profile, possibly the state your from. (Seems to be more important in the liver forum than other forums)
I'm sure someone will come along and give you some good info. This forum can run a little slower than others, so hang tight!! Good luck!
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