Meet Patti: 3 time null responder, liver transplant recepient, now post transplant and on treatment, and avid baseball fan

Name: Patti
Age Diagnosed:  20
Current Age: 47
Sex: Female
From:  Keller, Texas
Genotype:  1a
Acute or Chronic:  chronic
Treatment Naive: 3 time non responder
Date Cured Hep C: Currently 37 weeks in
Treatment Length: 48 weeks
Treatment used: Interferon, Ribavirin, Incivek



I was an IV drug user.  Trying to "fit in" with the wrong crowd.  At the time, I could have told you the date that I got infected, but not anymore.  "It was 1985 & I was 20 years old.  I turned yellow, so my mom took me to the doctor".  I was diagnosed as having non-a, non-b, possibly mono.  I had to have blood work for quite a while afterwards.  Maybe a year or so, I don't really remember anymore.  Then the doc said that my numbers were fine & I didn't have to come back.  I had no idea what that meant.  Met my husband in 1988, got married in 1989.

Fast forward 20 years.  "I went to my ob/gyn for my annual check-up.  He ran blood work which showed that my liver enzymes were elevated".  He sent me to my primary, who sent me to a hepatologist.  Multiple tests and 2 biopsies later, I was told that I was in stage 4 & had 3 lesions on my liver.  That was the reason for the 2nd biopsy.  "The doctor gave me 3-5 years if I did not have a transplant".  I told her "I'm 40 years old & I still have things I want to do so how do I sign up?"  That was December 5, 2005.  In March 2006, I started treatment, Interferon & Ribavirin.  I lasted until the 12 week viral load.  I was not responding.   "On July 9, 2006 I received the gift of life".  My husband overheard that my donor was an 18 year old female.  I know she died in Dallas County.  I have written & gotten no response, but that's not what this is about.

In February 2007, my liver enzymes started going up again, so here I go again for another biopsy.  I ended up having 5 in 6 months.  I was back in stage 2.  My kidneys were only functioning at 24% so I was not eligible for treatment again.  I had to wait on my kidneys to get stronger, or I would never treat again.  I got another doctor out of the deal too.  A nephrologist.  Yay!

I started treating again in August 2010.  I lasted until the 12 week viral load.  Treatment was stopped.  I was not responding.  Right after that, they started me on Infergen & Ribavirin.  Said it was a last resort.  I made it until the 12 week viral load.  Treatment was stopped.  That was January 2011.  July 2011, I went in to the hospital for my annual biopsy & was told that I was stage 3, grade 4
The new protease inhibitors came out in May 2011.  They are FDA approved for pre-transplant patients only.  "I had already told my doctor that I was willing to be a guinea pig".  I have nothing to lose at this point.

I was supposed to start treatment in October 2011.  I would have been the first post-transplant patient, on the Immunosuppresant Rapamune, to use Incivek in the country.  Three days before I was to start tx, I went to the dentist for my 6 month cleaning.  He found several spots on the bottom side of my tongue.  He sent me to an oral surgeon for a biopsy.  It came back as squamous cell carcinoma.  A form of skin cancer in my mouth.  Needless to say, tx was postponed.  I was sent to an Ear, Nose & Throat doctor to handle it because the oral surgeon didn't know much about cancer.  I had the rest of the cancer cut out of my mouth & my throat scoped to make sure that the cancer hadn't spread.  Thankfully it hadn't.

I started tx on December 30, 2011.  The first 4 weeks were Interferon & Ribavirin.  For the first time ever, I had a 2 log drop. January 30, 2012  I had to have a picc line put in.  I had to drive 45 miles miles each way to go to the hospital every day for labs.   "Thankfully, I have FMLA coverage to protect my job".  I went in afterwards, but I missed a couple of hours each morning.  Since I am post-transplant I had to have daily blood work so they could make sure that I wasn't rejecting. For 3 weeks.  The same day I started the Incivek.  "I had my viral load done at week 4 of the Incivek.  For the first time ever, I was UD".  As of this story, I'm 37 weeks in.

"I can say that I'm one of the lucky people who has very few side effects".  I've been able to work through treatment.  I've missed a few days for doctor's appointments and a few because I haven't felt good, but not too bad.  I was anemic before I started treatment, so I've had one transfusion & my Ribavirin has been lowered & raised several times.  I'll take it compared to some I've heard about.

If you need/want any more information, just let me know.