Aa
final update--SVR!!!
Been a long time since I gave any follow up on my situation.
Had 24 week SVR in December. Hepatologist said cured of HCV but still need MRI liver surveillance every year b/c of cirrhosis (compensated and asymptomatic).
I've been to hell and back fighting one life threatening illness after another. Lost a lot of weight, quality time with my kids and lost my marriage during treatment. No pity party here though. In better shape now than when I was in my 20's (44 now), physically feel better than ever, HIV undetectable, and hematologist encouraging me to participate in gene therapy trial for hemophilia cure. Addition by subtraction spouse-wise. I learned who I can count on in tough times and she was not one of them.
If you are spooked by the thought of treating, I had all the odds stacked against me. failed attempt, HIV, cirrhosis, bleeding disorder, low platelets etc. I had a rough time, but it could have been much worse. Devise a pretreatment strategy and stick to it. Play psychological games with yourself like..."week 10 now in double digits", "week 12, done w/ telaprevir, 25%done(i did 48 weeks)", "week 36 75% done", then count backwards.
Visit Medhelp for support, confide in a friend, family member and coworker.
I'll check back from time to time as I owe this group so much for the support.
Best,
Robo
Had 24 week SVR in December. Hepatologist said cured of HCV but still need MRI liver surveillance every year b/c of cirrhosis (compensated and asymptomatic).
I've been to hell and back fighting one life threatening illness after another. Lost a lot of weight, quality time with my kids and lost my marriage during treatment. No pity party here though. In better shape now than when I was in my 20's (44 now), physically feel better than ever, HIV undetectable, and hematologist encouraging me to participate in gene therapy trial for hemophilia cure. Addition by subtraction spouse-wise. I learned who I can count on in tough times and she was not one of them.
If you are spooked by the thought of treating, I had all the odds stacked against me. failed attempt, HIV, cirrhosis, bleeding disorder, low platelets etc. I had a rough time, but it could have been much worse. Devise a pretreatment strategy and stick to it. Play psychological games with yourself like..."week 10 now in double digits", "week 12, done w/ telaprevir, 25%done(i did 48 weeks)", "week 36 75% done", then count backwards.
Visit Medhelp for support, confide in a friend, family member and coworker.
I'll check back from time to time as I owe this group so much for the support.
Best,
Robo
Best Answer
Congratulations! I am so glad to hear your good news! Thank you so much for coming back to post.
Positive posts like yours are a Godsend.
Dee
Positive posts like yours are a Godsend.
Dee
Two down, one to go... congratulations, so great to hear that you are SVR!
Thank you for the update, robo, and do keep us posted... you are on your way to talking all three of the Triple H's down to the ground. You endured the losses and came out healthier, wealthier and wiser :). Best wishes.
~eureka
Thank you for the update, robo, and do keep us posted... you are on your way to talking all three of the Triple H's down to the ground. You endured the losses and came out healthier, wealthier and wiser :). Best wishes.
~eureka
I am very happy to read this news. Congrats to you for fighting for a healthy life.
You've got it righto! Beat the mental game and the drugs will do their work! Congratulations! Karen:)
Way to go for hanging in there. So many people with co-existing conditions come on here with little or no hope - it is sure encouraging to someone beat the odds. I hope you post again some time & let us know how your other treatment goes (if you participate).
How wonderful. Sorry about the marriage. This is a true test of a relationship for sure. I hope there is something to this gene therapy for hemophilia because that would be very exciting. You are inspirational. Thanks for posting.
frijole
frijole
Robo, Fanfreakentastic!!!
This is the best news i have heard in some time.
凸 (^_^) 凸
Nothing but net!!!
With hope and determination we can accomplish amazing things. I am so happy you are a fighter and fought on when things looked bleak. You have overcome so much. Be proud of yourself and your accomplishments. May it serve you in all areas of your life. And remember ..our greatest achievements in life are when we overcome our greatest challenges. Rewards are great when the stakes are high. Nothing worthwhile comes easy.
Continue HCC surveillance as a routine precautionary measure. But you have, achieved SVR your chances of the development of HCC is reduced tremendously. Since you had asymptomatic cirrhosis your liver should be able to heal itself so that you will never have to experience complications of advanced life disease.
I am sorry about the lose of your marriage but crises tend to clarify who is really with us and who isn't. Though it is difficult at the time it is better we know who really cares for us and who doesn't. I think you have probably lost people in your life because of your illness but you have also found the people that really love you and developed deeper and more meaningful relationships. Fighting serious illnesses tends to clarify many ambiguities in life.
Good luck with your hemophilia. Remember progress is being made every day so always keep you inner strenghr and hope alive.
Well done!!!!
Enjoy a long and healthy life!
Hector
This is the best news i have heard in some time.
凸 (^_^) 凸
Nothing but net!!!
With hope and determination we can accomplish amazing things. I am so happy you are a fighter and fought on when things looked bleak. You have overcome so much. Be proud of yourself and your accomplishments. May it serve you in all areas of your life. And remember ..our greatest achievements in life are when we overcome our greatest challenges. Rewards are great when the stakes are high. Nothing worthwhile comes easy.
Continue HCC surveillance as a routine precautionary measure. But you have, achieved SVR your chances of the development of HCC is reduced tremendously. Since you had asymptomatic cirrhosis your liver should be able to heal itself so that you will never have to experience complications of advanced life disease.
I am sorry about the lose of your marriage but crises tend to clarify who is really with us and who isn't. Though it is difficult at the time it is better we know who really cares for us and who doesn't. I think you have probably lost people in your life because of your illness but you have also found the people that really love you and developed deeper and more meaningful relationships. Fighting serious illnesses tends to clarify many ambiguities in life.
Good luck with your hemophilia. Remember progress is being made every day so always keep you inner strenghr and hope alive.
Well done!!!!
Enjoy a long and healthy life!
Hector
I am new to this and read your post you are a light of encourgement and God Be With You. Thanks and Hope I have a better run of this like you
Congratulations! This is fantastic news, Robo. I am so happy for you. You had a tough row to hoe, but you did it. Best of wishes going forward.
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wonderful news!! You did it, like I knew you would!
My son participated in a Gene therapy trial Phase one and two
then they ran out of funds at tha time. Well but then that is how
we found out about hiss HCV.
In the future , it may prove beneficial to so many other Hemophiliacs
and that is truly amazing.
As you know, be prepared to let them draw lots of blood during the trial.
You are an amazing person!!
Lots of hugs
Elaine