Wild Ride

By kathyd

3 min read

My Story - Precocious Child

I've always been active, friendly, inquisitive to do, learn & ready for adventure. Ate well, enjoyed sports, hiking, camping etc.

DOB: February 14

Infected: Early 70's perhaps

In 1983, I started a new job. It was an exciting job with many possibilities. My first order of business was working in the NATO Seasparrow Missile and Radar Department terminating & installing shipboard cable and connectors. I also was given the responsibility of rolling the different cables to type and length and supplying the rolled up cables to the other EMA's to install the connectors after terminating the wires. It was physically demanding and I was good at it. Promoted to another Department after completion. Storekeeper & Buyer of electrical/mechanical material. Basically a sit down position.

My point of the above work history was I started experiencing health problems.

Anxiety- Psychiatrist (Xanax) weight loss, short temper, fatigue, frequent urination and intermittent high blood pressure. (Me not the Psych Guy) :-)

In 1984, I was diagnosed with type 1 diabetes and hypothyroidism. I was on Novalog 70/30 Insulin and 1mg Synthroid with Lisinopril 20mg.

Fast forward to early 2003:

My Husband, Greg, had been complaining of fatigue and a Doctor we both saw decided to run a hepatitis C antibody test on him. He was positive. I made an appointment for the test and I was positive. We started out seeking a Gastroenterology clinic. They gave us Colonoscopy exams and I gave a pint of blood due to genetic Hemochromatosis. Greg's PCR showed 2.5 Million V/L, Geno 1A and I was a tad under 1 Million V/L, Geno 1B.

The Gastroenterologist agreed to continue treating Greg but wanted me to seek more testing and treatment elsewhere. He recommended VCU in Richmond, VA.

Away we went, I had many tests, upper Endoscopy, Scans and of course lots of various Labs. I have Stage 4 cirrhosis, Grade 1 after a liver biopsy.

The Gastro & Hepatologist ordered our Meds. All would be shipped to our door, 3-month supply at a time. We would be doing the standard 48 weeks of Pegylated Interferon and Ribavirin. Greg was taking 1200mg of Riba split and I was on 1000mg split. each riba pill was 200mg.

Once the meds arrived, we stashed the Peg in a mini fridge. We both decided to do the Peg on Friday so September 2004 treatment began. That Saturday & Sunday, we didn't feel too much different. Monday I went to work but didn't feel in tip top shape. I made an appointment with H/R to inquire about paperwork needed in case I'd need to go out on intermittent FMLA and also inquired about the Short Term Disability I had. By Wednesday the Riba was starting to seriously affect my stamina. After 4 weeks, I went back to Richmond for tests. I was told to wait for the results. In 2 hours, I was called back to see the PA, Sarah. She said I'm terribly sorry but your hemoglobin count has dropped and we need to stop treatment. I cried almost all the way home. Four weeks of treatment and this wimp couldn't hack it! In November 2004, Sarah called me at work and left a voice mail that I had dropped 2 logs. Wow! In 4 weeks, dropping 2 logs was miraculous. 10,000 yowzer!

Sarah ordered a medication called Aranesp to be injected once a week or maybe it was bi-monthly (some things are a blur) to stimulate my bone marrow. I took Aranesp for 3 months. Greg was 3 months ahead of me. He had 8 months left of this Treatment. Greg at the final 3 months started Neupogen (low white count) to stimulate his bone marrow (good thing I had the foresight to have that mini fridge).

January 2005:

I began rreatment again with a lower dose of Ribavirin. When my HGB would start to drop, they lowered the Riba. They put me on 400mg of Ribavirin, my final 3months. Gee- I detested that crap. I also was still taking Aranesp and of course had frequent lab draws. Luckily I could have them drawn in Virginia Beach and They sent the results to Richmond. My last 6 months were FMLA for 12 weeks and then I took a 12 week Short Term Disability.

Begun 1st TX, September 2004
2 Log Drop November 2004
Undetected Viral Load February 2005
End of Treatment (EOT) December 16, 2005
Back to Work: January 2, 2006.
WHAT A WILD RIDE!! 52 Freaking Weeks!!

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kathyd Member
Of course I joined a Support Forum to learn and to rally others on this type of treatment. Helping other, meeting others battling with this same disease was therapeutic. Now in most places they have these new Direct-Acting Antivirals that luckily are more successful then the Peg/Riba with far less side effects. I do understand those that have treated and the virus didn't respond will need to add Ribavirin to the DAA. Think of Riba as the prime kicker! Here's a couple of wise words of advise I was told and believe it was good advise. "Never make any financial decisions while on treatment" & "Bite your tongue and think before allowing anyone's comments to cause distress" Kathy D. had a bad case of road rage so stopped driving.
wildflower66 Member
I'm so glad you were cured and thats all behind you. I too saw Sarah but also Drs. Luketic & Shiffman at MCV in the early 2000s. I moved to the Blue Ridge Mountains and started going to UVA but wasn't as satisfied with my doctors there. I was elated to find that both Sarah and Dr. Shiffman were still working together but they're at The Liver Institute of Virginia in Richmond. I began seeing them again almost 2 yrs ago.She's fantastic and he's a genius. (The smartest man I've ever met.) I'm in end stage liver failure, or 4 as they call it, but I'm going to start treatment with newer direct antivirals I think they're called. I hope to be cured soon as well. I was undiagnosed almost 15 yrs and have had the virus almost 30 yrs. I'm so grateful for the research and new medication because interferon treatments were never an option for me as my platelets were already down in the low 40Ks & treatment may very well have killed me. You and I are very blessed. I just wanted to share. 😀
1. kathyd Member
 Thanks for sharing Wildflower!! Yep, those new DAA's are something else and the treatment time is shorter to boot! Dr Shiffman practices at Bon Secours aka Liver Institute of VA along with Sarah Hubbard. Yeah, I probably had HCV for close to 30 years before diagnosed in 2003. When you say end stage, you'll treat the HCV and then go on the TP list? I had Stage 4 but the grade was 1 so my Liver was able to heal and it has. My prayers that soon you kick that Dragon to the curb!
myofb1 Member
Yep that's a wild ride for sure. You will hate me when I tell you mine. One pill a day for 8 weeks. No side effects etc. and I am cured. Harvoni is a miracle drug to say the least. Thank god for it because I don't think I could have went through what you and many others had to go through. I caught mine in time before any liver problems so I'm was blessed twice. Good luck to you.
1. kathyd Member
 Myofb1, Yes, been keeping up with the new Direct-Acting antivirals. You must have Geno 1 or 4? Outstanding you only treated for 8 weeks! Most treat for 12 weeks but have heard some treat 4 weeks less depending on response. When was your end of treatment (EOT)? Curious when you found out you were non-detected (ND) Good luck to you! I celebrated my 11th year EOT 12/16/16 but remember I also was ND February 2005.