I am Mad that we still have nothing but interferon for HCV
I have battled, as all of you have, with this virus forever , it seems.
I finally had a liver transplant this past Dec.with a meld of 18 feeling not real bad yet , just starting with edema and more than usual tiredness. Did very well post transplant for 2-3 months.
Then enzymes climbed and was hospitalized for rejection. Loaded up with more antirejection meds, developed severe diabetes and was so sick I could barely function. I am tough and was in good shape , thank God. Several weeks after discharge I was rehospitalized again and told I had not been in rejection, but it was HCV going rampant most likely due to my immune system being very low. I was extremely jaundiced as well. They lowered antirejection drugs and sent me home
.My Bilirubin stayed real high , it was the first time my eyes and skin were ever yellow, so I was rehospitalized to find a possible obstruction in my bile ducts. Went thru every test there is, some said yes there was an obstruction , others said none. The final test was extremely risky , an ace of a test to rule out abstruction and it was negative. So that ended that.
After discharge, and to the present, I have been allowed to rebuild my own immune system in hopes of it controlling more of the HCV. It had been working , my enzymes coming down and my bilirubin almost back to normal.I was so positive it was working and I'd have a break.
But a few days ago I got the dreaded call that the liver enzymes are back up so much that they want to start interferon.
I have had interferon several times pre transplant and I always ended up with the virus escaping and most likely mutating, causing disaster in my body. It usually took years for me to recuperate. I did use natural remedies for quite a long time in between and spent alot of money seeing the most reknown MD's who practice nutritional medicine up untill several years ago.
My plea is to be able to do something that would curb the virus atleast till we can get the DAA's ( direct antiviral agents ) or whatever comes up as a more efficient and safer antiviral FDA approved.
I am praying someone will work for me and all those others who are in a similar situation. We are so close yet many of us don't have the time to wait. There are meds out there that are working, not approved but in trial, but we are supposedly the last group to be able to use them as transplant patients.
Anyone who would like to comment or respond, PLEASE do
God bless.
I finally had a liver transplant this past Dec.with a meld of 18 feeling not real bad yet , just starting with edema and more than usual tiredness. Did very well post transplant for 2-3 months.
Then enzymes climbed and was hospitalized for rejection. Loaded up with more antirejection meds, developed severe diabetes and was so sick I could barely function. I am tough and was in good shape , thank God. Several weeks after discharge I was rehospitalized again and told I had not been in rejection, but it was HCV going rampant most likely due to my immune system being very low. I was extremely jaundiced as well. They lowered antirejection drugs and sent me home
.My Bilirubin stayed real high , it was the first time my eyes and skin were ever yellow, so I was rehospitalized to find a possible obstruction in my bile ducts. Went thru every test there is, some said yes there was an obstruction , others said none. The final test was extremely risky , an ace of a test to rule out abstruction and it was negative. So that ended that.
After discharge, and to the present, I have been allowed to rebuild my own immune system in hopes of it controlling more of the HCV. It had been working , my enzymes coming down and my bilirubin almost back to normal.I was so positive it was working and I'd have a break.
But a few days ago I got the dreaded call that the liver enzymes are back up so much that they want to start interferon.
I have had interferon several times pre transplant and I always ended up with the virus escaping and most likely mutating, causing disaster in my body. It usually took years for me to recuperate. I did use natural remedies for quite a long time in between and spent alot of money seeing the most reknown MD's who practice nutritional medicine up untill several years ago.
My plea is to be able to do something that would curb the virus atleast till we can get the DAA's ( direct antiviral agents ) or whatever comes up as a more efficient and safer antiviral FDA approved.
I am praying someone will work for me and all those others who are in a similar situation. We are so close yet many of us don't have the time to wait. There are meds out there that are working, not approved but in trial, but we are supposedly the last group to be able to use them as transplant patients.
Anyone who would like to comment or respond, PLEASE do
God bless.
Replies to This Discussion
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Permalink Reply by Gordon on -
I think I know what you mean. I had a liver transplant 12 years ago and my hep c returned 6 months ago, I was wondering how long it will take for this to be full blown again. They wont put me on interferon after having a transplant, so I don't know what other options I will have except another transplant on down the line. I am feeling fine so far. Hope everything works out for you. You will be in my prayers.
Thanks! Gordon H. Walton, Ky -
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Permalink Reply by Connie Austin on -
Gordon, you've been really lucky to have 12 good years before hep C made itself known again. In my case, one month after transplant I had the hep C fatigue and my enzymes have been climbing week after week. My viral load was 10 million in early Jan. However, Mayo won't do treatment until the numbers get much higher. When I do have it, it will be the new 3-drug treatment with Telaprevir, which I've heard is a real bear.. I've been dealing with hep C symptoms since '91. I haven't had a chance to really appreciate my new liver and being alive, as I am dragging around and would rather sleep than do anything else. I force myself to get up and do things every day. I've also had post-surgical complications that I'm still dealing with, including a very large hernia. They won't repair it now, as I'm only 3 mos. out from TP; however, at some point they will have to open me up again.
There was also the question of whether I was rejecting or it was just the hep C, so they did a biopsy and determined that it wasn't rejection, but HCV. However, my liver is still clean--no fibrosis.
Most folks think that once one gets a transplant, everything is just hunky-dorie. That might be true in some cases, but not for those with active hep C!
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Permalink Reply by Jan Ward on -
Gordon:
If you're with docs who won't give you treatment for the Hep C post-TX, I would recommend moving on. Unless you've got some serious blood disease, there is nothing I'm aware of that would be contraindicative to your use of the interferon/ribavirin therapies. They ain't pleasant but they tend to work for a lot.
Best
Jan -
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Permalink Reply by Connie Austin on
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I would want to know why he couldn't have the 3-drug treatment or even the one in trial that eliminates interferon from the mix.
Six months post transplant, my labs jump around. They want to do another biopsy soon (last one was in Jan.), which is not my favorite thing, but that's how Mayo seems to determine the need for treatment. I've had more complications in recent months, necessitating being opened up again to repair an opening that never healed. After that surgery, I ballooned up to 170 (I'm 4'11") and huge water and blood blisters developed around my ankles and feet, along with a large hematoma on my shin, which was lanced and is quite deep and long. Home health is treating it, but it looks like it's going to take months. I understand your frustration.
Hugs,
Connie
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Permalink Reply by terry hunt on -
I know where you are coming from. I had my TX two years ago and am now in stage 4 liver failure due to HCV. they put me on pegasys and rib and i had anemia so bad I was in the hospital for 6 days. I have had 6 transfusions, with no help. I am now off of treatment and the doc says hopefully something new will become avalible. The best time line i have seen is 5 to 10 years i can't waite that long. I'm thankfull for the extra time the transplant has bought me. but i wont go through that again. the worst part was the encephalopathy that was scary. so I pray and leave it in Gods hands. I'm going to enjoy this summer the best I can. Peace and Love to all
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Permalink Reply by kathy nuss on
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OMG, our stories are so very similar! I just had my transplant a little over 2 months ago and I am now diabetic, Ive had stints placed in my bile ducts which caused pancreatits, my bilirubin is high and won't budge so we are now considering Hep C tx. again because it is back with a vengeance. Very very scary! I am a strong woman with tons of hope and faith, love and support, but I am so ready to feel good again and live a relatively normal life with my family. I thing it's the overwhelming fears that get me the most.
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Permalink Reply by A. Front on -
Hep C is responsible for the majority of liver transplants in the US.
The good news is the new interferon free meds in clinical trials are proving very successful.
My friend is on the tranpslant list and is in a small trial with these meds ( 7977 and ribaririn)
As a null responder to interferon, but despite having decompensated cirrhosis, he was undetected with the new meds, at week 2 !!
The idea is he will have a transplant within the next couple of months and not have to undergo treatment afterwords.
These new meds are moving quickly towards being the treatment of the future. Kathy, I'd encourage you to speak to your hepatologist about the new orals and see if there are any trials coming up for people who are newly transplanted.
In the meantime, drink lots of coffee, if you can, and hang in there ! -
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