Aa
It's starting
I am 51 and have been diagnosed with Hep C for around 25 years. I have been in stage 1 cirrhosis for around 6 years and now my doctor has said I am moving towards stage 2. I have had 4 flavors of dual interferon treatments and have completed 5 1/2 of them (from 6 to 12 months depending on the flavor). The Peg was just too much for me. I am starting to have severe fatigue, experience loss of memory, swollen legs, loss of appetite, falling asleep during meetings, etc. I have mild to strong pain on my left side. My ammonia level is in the low 200 and climbing. I also have Portal Hyperion and I a type 1 diabetic.
The reason I gave you some background is because from month to month my meld score goes from 9 to as high as 18. I have always bounced back quickly but the swings are much closer. My doctor said that the next big thing is a shunt or a tips procedure and as that proceedure becomes closer he will send me off to UAB for another evaluation.
He has also starting to talk about going on a leave of absence and filing for social security. I have been athletic all my like and because of my enlarge spleen I had to give all that up. I also have been a motorcycle biker for just about all of my life and my doctor is hinting around that it might be time to park it. That's talking away my last passion.
I know he is just doing what he feels is best for my well being but my quality of life as I know it is going down the tubes fast. Maybe he need in increase my Wilburton ;-).
Is this just a passing phase? Will a transplant give my back my positive outlook on life back? I have been so sick for so long I don't remember what it feels like to be well. I just want to enjoy life again.
I guess I'm just looking for some encouragement.
The reason I gave you some background is because from month to month my meld score goes from 9 to as high as 18. I have always bounced back quickly but the swings are much closer. My doctor said that the next big thing is a shunt or a tips procedure and as that proceedure becomes closer he will send me off to UAB for another evaluation.
He has also starting to talk about going on a leave of absence and filing for social security. I have been athletic all my like and because of my enlarge spleen I had to give all that up. I also have been a motorcycle biker for just about all of my life and my doctor is hinting around that it might be time to park it. That's talking away my last passion.
I know he is just doing what he feels is best for my well being but my quality of life as I know it is going down the tubes fast. Maybe he need in increase my Wilburton ;-).
Is this just a passing phase? Will a transplant give my back my positive outlook on life back? I have been so sick for so long I don't remember what it feels like to be well. I just want to enjoy life again.
I guess I'm just looking for some encouragement.
UAB is very good. I was being treated there for some benign tumors by Arguedas. I like that you can do everything in the same building. Its not only convenient, but I also don't get charged lab copays that way.
This time though, I chose to go to Huntsville because basically, I found a good doc there also who I could get in to see faster. Also, its a much shorter drive for me. Those appts at UAB are so far in the future sometimes, and I needed to make certain to get on treatment in a certain window of time. But I loved Kirkland. Even their machines are better. I thought I only had one tumor when I went there because of the poorer quality of catscan equipment I'd been sent through before, when actually, I had three. It's just that the equipment at UAB is so much better they were able to see what machines at the smaller hospital near my town missed. Good luck!
This time though, I chose to go to Huntsville because basically, I found a good doc there also who I could get in to see faster. Also, its a much shorter drive for me. Those appts at UAB are so far in the future sometimes, and I needed to make certain to get on treatment in a certain window of time. But I loved Kirkland. Even their machines are better. I thought I only had one tumor when I went there because of the poorer quality of catscan equipment I'd been sent through before, when actually, I had three. It's just that the equipment at UAB is so much better they were able to see what machines at the smaller hospital near my town missed. Good luck!
I hope your doc isn't a herpetologist--that's a snake doctor--(just teasing you---I fat finger type so much I'm mostly illegible myself)
As for the transplant----afterwards you probably will feel a lot better if you liver is so sick......but the HEP C is going to still be there, and the sad fact is, the very drugs that suppress rejection of the new liver also allow the HEP c to reign triumphant. My hubby had a liver transplant due to hepatocell carncinoma due to HCV in 9/06. People were shocked we weren't just ecstatic about the transplant (we were, we just knew what lay around the corner) and sure enough, 6 months after transplant, his VL had begun the climb upward and he had to start Interferon even tho he easn't even fully recovered from the surgery. Sounds like you have not responded well to tx in the past---so I wish you all the best. Transplant will give you a new lease on life but you will still need to deal with the HCV.
Best wishes-Liz
As for the transplant----afterwards you probably will feel a lot better if you liver is so sick......but the HEP C is going to still be there, and the sad fact is, the very drugs that suppress rejection of the new liver also allow the HEP c to reign triumphant. My hubby had a liver transplant due to hepatocell carncinoma due to HCV in 9/06. People were shocked we weren't just ecstatic about the transplant (we were, we just knew what lay around the corner) and sure enough, 6 months after transplant, his VL had begun the climb upward and he had to start Interferon even tho he easn't even fully recovered from the surgery. Sounds like you have not responded well to tx in the past---so I wish you all the best. Transplant will give you a new lease on life but you will still need to deal with the HCV.
Best wishes-Liz
I guess I am lucky be cause my doctor is a leading herpetologist. I have been under his care for around 5 years. UAB is short for University of Alabama Hospital System. They do the most liver transplant in my region which covers I think 6 states. They have already put together a transplant team because I had an an evaluation a couple of years ago I go to UAB every six months. Typically they want do a transplant until a meld score is between 21-24. I didn't list all of my systems because I was getting depressed. ;-). The plan is to prolong my liver degeneration for as long as possible so we can take advantage of the new treatments coming down the road which I might add my Doctor is very excited about.. The transplant is the last resort. What I am figuring out is once you do the tips then you the time is near.
Thanks for you input, I look forward to conversing with everyone.
Thanks for you input, I look forward to conversing with everyone.
I have always had a positive attitude and I consider this just another living experience. It's just I have never fought this type of fight before and I am felling a little intimidated about my progression. But I will win. After all of the drugs I have taken over the years somehow I new this day would come. I can't deny the systems any longer. One thing I really like about my doc is he is truthful and will not hold back if I ask him a direct question. So when I asked him today how bad is it going to get before I get the transplant he said that if he to pick between a hart attack, a stroke, or end stages of cirrhosis he said he would take the hart attack. Then he said it is going to get much worse before it gets better and his job was to keep me as comfortable as possible until the transplant. Then he smiled and said he would like to think he was real good at his job. So I guess that kind of got to me. But in the morning I just going to keep on keeping on and try to have a positive outlook.
I don't know much about it but I've heard that TIPS may be giving way to sclerotherapy. You might Google either and bone up on the procedure.
HCV tends to be progressive and so the damage and symptoms tend to get worse and worse. Having either th TIPs or sclerotherapy will help with varices (but you didn't mention having them) but won't help with your other issues that I'm aware of.
I don't know what UAB is (a local hospital?) but you are entering a point that you will need a good hepatologist/ clinic and transplant center.
One question I have is how how long do you have before you need a transplant? Can you do anything to lower or stabilize those meld scores? Might you be able to hang together long enough to be able to treat with a new compound (it would likely have to be post trial TX) and possibly not need a transplant? Some people also are able to treat and experience some improvement in their liver function. I think you'll need a specialist to be able to answer those questions.
By the way......I know a guy who has had a replacement liver for 10 years as of October 8. This board also has a member who has a transplant and who cleared with treatment. There is much to be hopeful about; we live in a great age.
best,
willy
HCV tends to be progressive and so the damage and symptoms tend to get worse and worse. Having either th TIPs or sclerotherapy will help with varices (but you didn't mention having them) but won't help with your other issues that I'm aware of.
I don't know what UAB is (a local hospital?) but you are entering a point that you will need a good hepatologist/ clinic and transplant center.
One question I have is how how long do you have before you need a transplant? Can you do anything to lower or stabilize those meld scores? Might you be able to hang together long enough to be able to treat with a new compound (it would likely have to be post trial TX) and possibly not need a transplant? Some people also are able to treat and experience some improvement in their liver function. I think you'll need a specialist to be able to answer those questions.
By the way......I know a guy who has had a replacement liver for 10 years as of October 8. This board also has a member who has a transplant and who cleared with treatment. There is much to be hopeful about; we live in a great age.
best,
willy
I know a few people that have had transplants and they are amazed at the quality of life they now have and how good they feel.
You are just a bit down heartened at the moment, keep your chin up, things will get better.
Cheers
You are just a bit down heartened at the moment, keep your chin up, things will get better.
Cheers
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