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SVR12
Hi all, I got the word today. After finishing 12 weeks of Sovaldi/Ribavirin on April 22 I am undetected 12 weeks later.
Genotype 2, treatment naive, F2-3 fibrosis, viral load 125,000 at the beginning of treatment. My doc says there will be viral tests at 6 months and a year but this can be considered SVR!
15 months from diagnosis to SVR, no symptoms from the virus, no side effects from the treatment. To say I had it pretty easy is an understatement to say the least. Thanks to everyone here for your support!
Genotype 2, treatment naive, F2-3 fibrosis, viral load 125,000 at the beginning of treatment. My doc says there will be viral tests at 6 months and a year but this can be considered SVR!
15 months from diagnosis to SVR, no symptoms from the virus, no side effects from the treatment. To say I had it pretty easy is an understatement to say the least. Thanks to everyone here for your support!
Your story is proof on how one must be proactive in his/her own healthcare and not just rely on the doctors to take care of you. For everyone out there reading this, doctors are way to busy and don't always have the answers for individual patients. Being on this forum is an important step. Here you will get the support and real life experience of others going through the same thing.
Congratulations, Klonny! You did it!
Nan
Congratulations, Klonny! You did it!
Nan
Wow what an fantastic personal story, that I hope will help inspire and educate allot of people
Congratulations on you SVR !
I hope to follow in your footsteps, am doing final EOT SVR labs in 2weeks (12 week S/O)
Xox CH
Congratulations on you SVR !
I hope to follow in your footsteps, am doing final EOT SVR labs in 2weeks (12 week S/O)
Xox CH
Hi Kim, Thanks for that, yes about 35 lbs.
I'm going to try and encapsulate my experience the last 15 months here in case it is of help to others.
In March 2103 I went to my primary care for a physical. I weighed in at 255#. I had been a professional mountain biker in the late 80's and early 90's but had fallen off the exercise wagon because of unexpected financial problems (remember 2008?) and had to start a new business from scratch, turning our home of 15 years into a bed and breakfast. I also began to drink a lot more than I ever did.
I knew that I couldn't continue in this way so I finally went to the doctor after 5 or more years of staying away. I was scolded about my weight and drinking. My blood work came back with elevated liver enzymes. something like AST 78 and ALT 200. My PCP said it was probably from the drinking and if I quit they would go back to normal. I mentioned that I had been told for years by various doctors that my liver enzymes were "a little' high but no one ever told me what that meant or followed up on it. I then did some reading on the subject and found out about enzymes and Hep C. I went back to the doctor and asked for a test. She said it was unlikely I had Hep C since I had no symptoms. I insisted on getting the test anyway which obviously came back positive.
This was a tremendous shock so after composing myself I went into heavy duty research mode. I never did IV drugs but did snort some coke in the 80's and was also an EMT in the days before universal precautions.
So then my primary care tells me I am probably just a "carrier" and since my viral load was so low (48,000) that I didn't need to treat, especially since treatment was so difficult.
I looked into this and found out otherwise so insisted on a referral to a hepatologist at a major teaching hospital about an hour from me, Dartmouth Hitchcock in Lebanon NH.
Once in the care of the hepatology team there everything changed, I learned about the new treatments in the pipeline, that there is no such thing as a carrier, and after some tests I learned I was genotype 2b.
I had stopped drinking entirely after the high enzyme results and now was back on the bike with a vengeance. I read somewhere that one should prepare for treatment as if you were training for a marathon. Not just a metaphorical marathon like prepare for a long difficult effort, but a literal one like get in the best physical shape possible.
I had my biopsy (F2-3) in June 2013 and was told that the team at Dartmouth was not treating any geno 2's period until the new meds were out.
Then it was the waiting game for sovaldi to be approved, which it was in December of 2013. Meanwhile with Obama Care newly enacted I was able to enroll in the medicaid expansion program in my state, Vermont, effective January 1, 2014.
On January 6 I was on my way to Dartmouth for my appointment to have the prescription written. There was an ice storm that morning and a huge accident on the interstate that delayed my by over an hour. I called and was told I would have to re-schedule. I said no way I was coming and would be seen. I realized that getting approval was not a sure thing and if I was put off for three weeks I might not get approval at all.
I arrived at reception ad was told to go home and come back in three weeks. I said no I'll wait here, given the weather I'm sure there will be a cancellation, which there was and I did get in. The prescription was written and submitted for prior approval. A week or so later I was told it was denied. The team asked for a re-consideration and surprisingly it was approved. Soon after receiving the meds the whole flap about the cost of the meds heated up and medicaid shut down all approvals. If I had not sat in the reception area insisting to be seen I would not be telling you all about my SVR today, I would still be waiting!
Treatment went like a breeze. I exercised all during treatment, backcountry skiing and cycling. I am now 35 lbs lighter and Hep C free!
Sorry for the huge post here but it helps me to put it down in words and maybe there's something here that can help others.
I can't tell you all how important this forum has been to me. THANKS to you all and please, please persevere in your efforts to get the right treatment and get your SVR. Learn everything you can, don't take anyone's word for anything , including your doctor, check and re-check the information. Ask for help here. There's so much going on with new treatments. We will all lick this thing one way or another I know it!
Best, Dave
I'm going to try and encapsulate my experience the last 15 months here in case it is of help to others.
In March 2103 I went to my primary care for a physical. I weighed in at 255#. I had been a professional mountain biker in the late 80's and early 90's but had fallen off the exercise wagon because of unexpected financial problems (remember 2008?) and had to start a new business from scratch, turning our home of 15 years into a bed and breakfast. I also began to drink a lot more than I ever did.
I knew that I couldn't continue in this way so I finally went to the doctor after 5 or more years of staying away. I was scolded about my weight and drinking. My blood work came back with elevated liver enzymes. something like AST 78 and ALT 200. My PCP said it was probably from the drinking and if I quit they would go back to normal. I mentioned that I had been told for years by various doctors that my liver enzymes were "a little' high but no one ever told me what that meant or followed up on it. I then did some reading on the subject and found out about enzymes and Hep C. I went back to the doctor and asked for a test. She said it was unlikely I had Hep C since I had no symptoms. I insisted on getting the test anyway which obviously came back positive.
This was a tremendous shock so after composing myself I went into heavy duty research mode. I never did IV drugs but did snort some coke in the 80's and was also an EMT in the days before universal precautions.
So then my primary care tells me I am probably just a "carrier" and since my viral load was so low (48,000) that I didn't need to treat, especially since treatment was so difficult.
I looked into this and found out otherwise so insisted on a referral to a hepatologist at a major teaching hospital about an hour from me, Dartmouth Hitchcock in Lebanon NH.
Once in the care of the hepatology team there everything changed, I learned about the new treatments in the pipeline, that there is no such thing as a carrier, and after some tests I learned I was genotype 2b.
I had stopped drinking entirely after the high enzyme results and now was back on the bike with a vengeance. I read somewhere that one should prepare for treatment as if you were training for a marathon. Not just a metaphorical marathon like prepare for a long difficult effort, but a literal one like get in the best physical shape possible.
I had my biopsy (F2-3) in June 2013 and was told that the team at Dartmouth was not treating any geno 2's period until the new meds were out.
Then it was the waiting game for sovaldi to be approved, which it was in December of 2013. Meanwhile with Obama Care newly enacted I was able to enroll in the medicaid expansion program in my state, Vermont, effective January 1, 2014.
On January 6 I was on my way to Dartmouth for my appointment to have the prescription written. There was an ice storm that morning and a huge accident on the interstate that delayed my by over an hour. I called and was told I would have to re-schedule. I said no way I was coming and would be seen. I realized that getting approval was not a sure thing and if I was put off for three weeks I might not get approval at all.
I arrived at reception ad was told to go home and come back in three weeks. I said no I'll wait here, given the weather I'm sure there will be a cancellation, which there was and I did get in. The prescription was written and submitted for prior approval. A week or so later I was told it was denied. The team asked for a re-consideration and surprisingly it was approved. Soon after receiving the meds the whole flap about the cost of the meds heated up and medicaid shut down all approvals. If I had not sat in the reception area insisting to be seen I would not be telling you all about my SVR today, I would still be waiting!
Treatment went like a breeze. I exercised all during treatment, backcountry skiing and cycling. I am now 35 lbs lighter and Hep C free!
Sorry for the huge post here but it helps me to put it down in words and maybe there's something here that can help others.
I can't tell you all how important this forum has been to me. THANKS to you all and please, please persevere in your efforts to get the right treatment and get your SVR. Learn everything you can, don't take anyone's word for anything , including your doctor, check and re-check the information. Ask for help here. There's so much going on with new treatments. We will all lick this thing one way or another I know it!
Best, Dave
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