Aa
New Transplant Recipient
All,
I've been an occasional poster/responder and frequent reader of these forums since June 2007 when I was diagnosed with Hep C. Thanks to all who gave me guidance and support (Hector, JmJm, Niki, Child24Angel come to mind, there are many others). I did not know I had Hep C until my liver was already severely damaged and cirrhotic. Although I tried to do everything right to get the most out of my own liver, I started to really go down hill about 8 months ago. The first sign of de-compensation for me was significant edema, which was only moderately controlled by diuretics. This was followed by several episodes of Hepatic Encephalopathy and to make things even more interesting, I would recover from high ammonia levels and then get hit with dangerously low sodium levels (hyponatremia). In May I had one of my previously stable esophageal varicies rupture and required banding. By the time I finished the transplant screening, I was at the top of the list for my transplant center and region for my blood type but still waited two months before I received this precious gift from someone I will never know. I had no idea how sick I truly was. In fact, I was actually still working until just a couple of weeks before the transplant. My transplant surgery was filled with complications and I was re-listed for a new liver twice, I was in the ICU for nearly 2 weeks and it looked grim but the original donated liver started to show signs of improvement every time the transplant team and I was about to give up on it. Now, 7 weeks post-transplant I am starting to feel great and have a mental clarity and sharpness that I haven't felt in decades. My blood work numbers are all trending back to normal and I feel very optimistic about my future. I still have my little hitchhiker (Hep C), but so far it is does not seem to be very active. Hopefully I can keep it at bay until some of the new treatments in development are perfected. For now I'm learning to live with the interesting side effects of the anti-rejection meds. If anybody ever has any questions on the transplant process, please don't hesitate to ask. This board helped point me in the right direction for much of the research I did to educate myself on this disease and I'd like to give back to anyone who needs that kind of help from me.
Live well,
Bill
I've been an occasional poster/responder and frequent reader of these forums since June 2007 when I was diagnosed with Hep C. Thanks to all who gave me guidance and support (Hector, JmJm, Niki, Child24Angel come to mind, there are many others). I did not know I had Hep C until my liver was already severely damaged and cirrhotic. Although I tried to do everything right to get the most out of my own liver, I started to really go down hill about 8 months ago. The first sign of de-compensation for me was significant edema, which was only moderately controlled by diuretics. This was followed by several episodes of Hepatic Encephalopathy and to make things even more interesting, I would recover from high ammonia levels and then get hit with dangerously low sodium levels (hyponatremia). In May I had one of my previously stable esophageal varicies rupture and required banding. By the time I finished the transplant screening, I was at the top of the list for my transplant center and region for my blood type but still waited two months before I received this precious gift from someone I will never know. I had no idea how sick I truly was. In fact, I was actually still working until just a couple of weeks before the transplant. My transplant surgery was filled with complications and I was re-listed for a new liver twice, I was in the ICU for nearly 2 weeks and it looked grim but the original donated liver started to show signs of improvement every time the transplant team and I was about to give up on it. Now, 7 weeks post-transplant I am starting to feel great and have a mental clarity and sharpness that I haven't felt in decades. My blood work numbers are all trending back to normal and I feel very optimistic about my future. I still have my little hitchhiker (Hep C), but so far it is does not seem to be very active. Hopefully I can keep it at bay until some of the new treatments in development are perfected. For now I'm learning to live with the interesting side effects of the anti-rejection meds. If anybody ever has any questions on the transplant process, please don't hesitate to ask. This board helped point me in the right direction for much of the research I did to educate myself on this disease and I'd like to give back to anyone who needs that kind of help from me.
Live well,
Bill
Great news Bill!
I'm glad to hear you are on the road to recovery after some "bumps in the road" post-op. Glad to here your vitals are going back to norm and you are feeling better after being ill for so long.
I just got approved for the transplant list here in SF last week. Yeah!
Keep up the good work!
Hang in there and keep us posted on your progress.
I hope your story inspires others to be transplant donors and living donors so we don't have to be so close to death before receiving a new liver.
Hectorsf
I'm glad to hear you are on the road to recovery after some "bumps in the road" post-op. Glad to here your vitals are going back to norm and you are feeling better after being ill for so long.
I just got approved for the transplant list here in SF last week. Yeah!
Keep up the good work!
Hang in there and keep us posted on your progress.
I hope your story inspires others to be transplant donors and living donors so we don't have to be so close to death before receiving a new liver.
Hectorsf
Welcome back, and better than ever! My most heartfelt congratulations on your transplant, and best wishes for your continuing recovery. It's great to hear from you -- thanks for sharing your story! ~eureka
Great news. A second chance. And now you must make the best of it. One day at a time to put a value on the most important things in your life that you've been wanting to do. Do them and enjoy the gift. My prayers are with you for the best in your future...
Magnum
Magnum
I didn't really have the opportunity to use any of the new drugs. I was really hoping to get a shot at the Protease Inhibitors, but I my liver didn't last long enough. I underwent the SOC treatment with Pegasys and Ribavirin in the fall of 2007. That was when the first Egyptian study of Alinia came out and I quickly convinced my doc to add it to the mix so I was an early Alinia test case albeit not utilizing the pre-dosing that the trials have been using. We also tossed in a statin and Ursodiol as well as there were indications that those may have an impact of HCV viral load. I didn't have any success with that treatment and before too long I was too ill to try a second round. With Cirrhosis in the picture my odds weren't that good anyway. Now I hope to get some time free of HCV damage to the liver. I'll have a biopsy in a couple of months and at regular intervals after that. I am eager to rid myself of the virus but I think the best treatments are still in early stages of development and if I am fortunate to keep my new liver healthy I will wait to see if a non-interferon option becomes available in the future. I dream of a world where this virus is wiped out by a single shot. Until then, if I see the slightest hint of recurrent HCV damage I'll aggressively jump on the new PIs. I have already spoken to the Hepatologist on my transplant team and they support that but obviously want to see a few months of solid liver function first. So far they tell me that HCV is not impacting my liver at all.
When I was in the ICU and things were just not working out, I was re-listed for another transplant as a Status 1 candidate (meaning I had less than a week to live), my MELD score was 36 and it was looking bleak. I had to go on dialysis because my renal system started to crash and they tried a procedure called Plasmapheresis to clean the toxins from my blood while pumping me full of fresh donated plasma. Somehow, against all odds I started to improve. After 11 days in the ICU much of my new liver was functioning and I was taken off the transplant list. The only part of my new liver that wasn't doing well was the duct system (both hepatic and common bile duct) and they put a stent in my Common Bile Duct. This was when my Bilirubin was heading upwards everyday. At one point I had a bilirubin over 15, a GGT at 1800 (yep 1800!) and an AP of nearly 600. And get this- I was feeling well enough to go home with those numbers. I was about to have another biopsy to determine how much time I had before needing a second transplant when things started to turn around. It was a great day when the Bilirubin stabilized and started to go down and we all were able to breathe a sigh of relief that maybe, just maybe this thing would work. After several consecutive blood draws showing constantly improving Liver Panels and CBCs things are looking good. The bizarre thing is that from the time I regained the ability to actually think and talk consistently (about 10 days post-transplant) I have felt better everyday. I never needed a single dose of pain medication. I had blood tests showing I was near death, but like I said I felt better each day. Positive attitude? Prayers from hundreds of friends and family members? I don't know what made the difference but I did know I was going to make it even when the numbers showed otherwise.
Bill
When I was in the ICU and things were just not working out, I was re-listed for another transplant as a Status 1 candidate (meaning I had less than a week to live), my MELD score was 36 and it was looking bleak. I had to go on dialysis because my renal system started to crash and they tried a procedure called Plasmapheresis to clean the toxins from my blood while pumping me full of fresh donated plasma. Somehow, against all odds I started to improve. After 11 days in the ICU much of my new liver was functioning and I was taken off the transplant list. The only part of my new liver that wasn't doing well was the duct system (both hepatic and common bile duct) and they put a stent in my Common Bile Duct. This was when my Bilirubin was heading upwards everyday. At one point I had a bilirubin over 15, a GGT at 1800 (yep 1800!) and an AP of nearly 600. And get this- I was feeling well enough to go home with those numbers. I was about to have another biopsy to determine how much time I had before needing a second transplant when things started to turn around. It was a great day when the Bilirubin stabilized and started to go down and we all were able to breathe a sigh of relief that maybe, just maybe this thing would work. After several consecutive blood draws showing constantly improving Liver Panels and CBCs things are looking good. The bizarre thing is that from the time I regained the ability to actually think and talk consistently (about 10 days post-transplant) I have felt better everyday. I never needed a single dose of pain medication. I had blood tests showing I was near death, but like I said I felt better each day. Positive attitude? Prayers from hundreds of friends and family members? I don't know what made the difference but I did know I was going to make it even when the numbers showed otherwise.
Bill
Good hearing from you as well. You have always been there with your support, prayers, and love. I'll keep you posted.
Bill
Bill
HUGE HUGS AND CONGRATS !! you made it !!!!!!
I wish you the very best moving forward...and you will !!
I'm very, very happy for you !!!! a long journey...but you made it !!
Congrats again dear friend.
Many Hugs sent your way
Elaine
I wish you the very best moving forward...and you will !!
I'm very, very happy for you !!!! a long journey...but you made it !!
Congrats again dear friend.
Many Hugs sent your way
Elaine
wow Bill, that's great news, it gives us all hope, and it's so good to hear you got an organ...
hang in there...you are doing GREAT!!! It's good to hear that something turned it around for you...those labs are astounding.
Do you or your doctors attribute the turn around to any one of the new drugs in particular??
Where did your TP get done, if you don't mind me asking.
hang in there...you are doing GREAT!!! It's good to hear that something turned it around for you...those labs are astounding.
Do you or your doctors attribute the turn around to any one of the new drugs in particular??
Where did your TP get done, if you don't mind me asking.
Thanks for the kind words and encouragment. It has been a crazy ride. From the days in ICU where it looked like this wonderful, healthy liver just wasn't going to work and I was sure I wasn't going to make it to the way I feel today. I feel much better than I did pre-transplant and I feel better with each passing day. It is an amazing and wonderful feeling. My ALT and AST are correcting toward normal and are a fraction of what they were 6 months ago. My platelet count has gone from a low near 30 to over 350. My INR is at 1.0 after having been over 2.5 for months pre-transplant. So far the only numbers slow to correct are my bilirubin which reached a high of 15.1 (yeah you read that right!) just 3 weeks ago to less than 6 now. It's coming down as are my GGT and AP enzyme levels which indicates that the duct system is starting to function. That was the last hurdle for me, hopefully those numbers continue to go down. As for meds, here's my list:
Prograf, Myfortic, Prednisone, Flconazole, Valcyte, Septra, Omeprazole, Calcium supplement, Vitamin D supplement, Ursodiol, Magnesium supplement, and to top it all off, the drugs have made me diabetic and so I'm on Lispro and Glargine insulin as well. Worth very hassle. I am getting used to the side effects and they have really not been that severe for me. All in all I feel fantastic. Hopefully I stay free of any rejection episodes. I'll keep every one posted. Fight the good fight one and all and get the most out of every day.
Bill
Prograf, Myfortic, Prednisone, Flconazole, Valcyte, Septra, Omeprazole, Calcium supplement, Vitamin D supplement, Ursodiol, Magnesium supplement, and to top it all off, the drugs have made me diabetic and so I'm on Lispro and Glargine insulin as well. Worth very hassle. I am getting used to the side effects and they have really not been that severe for me. All in all I feel fantastic. Hopefully I stay free of any rejection episodes. I'll keep every one posted. Fight the good fight one and all and get the most out of every day.
Bill
Congratulations on getting a new liver and a new life. I hope that your new liver functions well and never gets attacked by this evil virus. I did a research with medical records of liver transplant patients, and there were several cases where patients lived with the new liver for decades without hepatitis C attacking it., and still do. They had normal AST/ALT and everything else, and felt great. I was searching for the explanation of this fact, but could not find one.
Please, let us know how you are doing.
Please, let us know how you are doing.
Oops sorry. My last post was supposed to be directed to you, brain failure today.
DoxieMom04
DoxieMom04
Congratulations on getting your life back. What a blessing.
There is a lady in my support group that had a liver transplant 1 year ago and just started HCV tx as it was damaging the new liver.
Hugs,
DoxieMom04
There is a lady in my support group that had a liver transplant 1 year ago and just started HCV tx as it was damaging the new liver.
Hugs,
DoxieMom04
Although I did not talk to you earlier, I would like to wish you smooth recovery and keep your attitude right where it is now. Alex
Oooh, man; glad to hear you made it; I remember you well from those days, good to see you in here again. As you know, there are a number of transplant survivors besides yourself in here; hopefully some of them will comment soon.
It’s wonderful you’re able to get in here and write so soon; only seven weeks out of surgery, huh?
I doubt your transplant team will push for antiviral therapy too soon, eh? I imagine they’ll want to watch for any further rejection episodes and make sure you demonstrate stability for a while first?
What sort of meds are you currently using? Prednisone? Cellcept? It’s wonderful your head has cleared and the encephalopathy is no longer an issue. What a miracle, huh?
Great to see you back in circulation; take care,
Bill
It’s wonderful you’re able to get in here and write so soon; only seven weeks out of surgery, huh?
I doubt your transplant team will push for antiviral therapy too soon, eh? I imagine they’ll want to watch for any further rejection episodes and make sure you demonstrate stability for a while first?
What sort of meds are you currently using? Prednisone? Cellcept? It’s wonderful your head has cleared and the encephalopathy is no longer an issue. What a miracle, huh?
Great to see you back in circulation; take care,
Bill
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