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Non-A Non-B and Me

March 21, 1987: I stopped doing drugs and have been clean ever since. Somewhere in my using days I contracted the Hepatitis C virus. This is my story:

April 28, 1988: Called the doctor about my blood test. He said everything looked good except my liver. It looked a little messed up?

Two years later, more stuff was about to happen concerning my liver. It will continue for the next 30 years.

August 1, 1990: The Red Cross sent me a letter today telling me that they can no longer accept my blood donations. That the reason being is… At this point I dropped the letter on the floor. It would take me a couple hours to pick it back up. In my mind I was thinking it was going to tell me I have AIDS. At this time, there was a lot of that in NA, and the world. Instead it said I came up positive for Non A – Non B hepatitis? What the heck is that and where did that come from? Need to go see my doctor.

August 2, 1990: Talked to my sponsor about the Red Cross letter and he says he has it too. That it’s no big deal. I will feel more assured after I see my doctor.

August 7, 1990: I called in sick today. Went to the doctors. That was a waste. He has no info on Hep C. He read my letter from the Red Cross and repeated what it said. He did explain about antigens and antibodies. I came up positive for both B and C antibodies which means at some time or another I had/have B&C. He said the B I can’t pass on but he’s not sure about the C. When I arrived home, I called the National Institute for Health, who told me to call Johns Hopkins. The doctor I talked to asked me how I was feeling and when I told him ok, he said I should make an appointment to see him, but it would probably take a couple weeks. I will call for an appointment tomorrow.

August 9, 1990: Called out sick again. Called Hopkins and they said I could not use their library. I called the University of Md. and they said I could. Upon arriving, the guard would not let me in. Then the guy at the reference desk said I really shouldn’t be in there. That only doctors and med students are allowed; that I wouldn’t be able to understand what I was looking at. I explained what’s going on with me. The ref desk guy took me over to a computer and showed me how to use it. I found some journals on Hep C and made copies. I gave the computer a bad command and it froze on me, so I left.

August 31, 1990: Went to Johns Hopkins and talked to Dr. M. He wants me to get three different blood tests done. He said depending on what they find from these test, will determine what he will do next. Possibly a liver biopsy.

September 13, 1990: Dr. M called and said that I have the Hep. C antibodies, which means I have had it. The only thing is, they don’t know if I still have it or not. Or if I’m a carrier or what. My liver enzymes are normal, and I should come back in a year for some more tests.

January 22, 1992: Went to the Dr. for a follow up. My liver enzymes are normal.

After getting married in May of 1992, and then my daughter being born in 1993, someone told me that I needed to get life insurance, to help them financially if something should happen to me. Well, being in recovery and supposedly having to work an honest program, I told the different insurance companies about my liver disease. Of course, they all turned me down. The one company representative told me, “This disease may kill you in forty years. We don’t want to risk insuring you, knowing that.” What the hell!! I told the guy, “I’m surprised I stayed alive this long. I’m almost 40 years old. I’m pretty sure I’ll be dead by 80.”

Over the years I continued to have blood work done and my liver checked. My liver enzymes were mostly always elevated. Every time I saw a new doctor, he wanted to have a whole bunch of tests done. It started to feel like a bunch of bullshit. When I started attending a lot of NA meetings up in Harford County, I heard a lot of people share about Hep C. Most of them were on Interferon and most of them became depressed. They had to take anti-depressants. I didn’t want that happening to me. My body/addiction doesn’t know the difference between a prescribed medicine and street drugs –  if one makes me feel good, 1,000 will make me feel even better!

October 27, 2008: Went to get a sonogram of my liver done. The technician who did it was very informative as to what she was doing. She explained everything to me. My liver and spleen are both normal, healthy sizes (She explained the function of the spleen and what happens to it when the liver stops doing its job). My gall bladder, kidneys and aorta all look good she said. My gall bladder has a tiny polyp in it, but she said I shouldn’t be worried about it. All these years worrying about my liver and having hepatitis and what not, and my liver and insides are all fine. Now to see what the blood test results are. Same as usual – elevated enzymes.

March 26, 2009: Off work today. Had a doctor’s appointment with a specialist for my liver, Dr. H. He was finally going to go over my results from all the test that I had done back in September/October. When I first went in, I felt pretty good about everything. Especially after I talked to the lady who did my liver sonogram. By the time I left his office, I was feeling pretty shitty. This doctor swears that I need this Interferon treatment for my Hep C. Truthfully, I think he’s wrong. How can I go from having elevated liver enzymes in 1988 to normal in 1992 to needing treatment in 2009? It doesn’t make sense. When I asked him that, he said the new type of test that they do these days show that my liver is inflamed. So, it makes you wonder about testing. I told him that I didn’t want the treatment. That everyone I know in NA who was on it, gets really depressed and ends up on medication. I told him if that happened to me, I’d be afraid I’d start using (drugs) again. I will end up dying quicker from relapsing on drugs than I would from my liver killing me. He gave me this weird look and said, “Yea, I guess so.” He told me that I have until May, to make my mind up about treatment.

I eventually made the decision not to do anything about my Hep C, other than to monitor it. Nineteen years later and it hasn’t killed me yet.

June 23, 2010: I ran into Dr. M, my doctor from when I first got Hep C back in 1989 and he said there is a new cure coming out next year that isn’t interferon, that it’s 3 pills for 6 months with a 75% cure rate. I told him I will come talk to him in a year from now.

2010: LK died on Christmas. His body rejected the liver he received a couple months ago. He was one of the people I knew that was on the Interferon and who got really depressed. Apparently, the meds didn’t work and he went to Greece to get a new liver.

February 3, 2016: Doctor’s appointment with my primary care physician for a yearly physical. He set me up for blood work and referrals for a colonoscopy and a new Hep C doctor. I really don’t like how doctors now just go thru motions during a visit. Hardly any eye contact while they are busy typing into a computer. I do like the website called MyChart, where I can see everything and stay in touch with my care team. It all just seems so impersonal though.

March 22, 2016: Work and then to a new Hep C doctor. Young woman whose name I forget. Trying very hard to push a new Hep C drug on me. Harvoni. It has a 94-98% success rate. It also costs $94,000.00 for 12 weeks’ worth! Left her office and went to get blood samples drawn – lots of blood. I need to get an ultra-sound next. Tried to get it done while there but they would not take a walk-in.

April 1, 2016: After work I went for my ultrasound. Girl said everything looked normal. I think my doctor is disappointed, but she said she is still going to try and get the meds for me?? It made me wonder if she gets some kind of kick-back from the pharmaceutical company? My Rx insurance, through my job, said they would not cover the cost of the Harvoni.

November 16, 2017: Doctor’s appointment at Johns Hopkins Hospital. Another new Hep C doctor. She doesn’t understand why my insurance wouldn’t cover the Harvoni for my Hep C. She is going to re-submit and make sure I get it. She also told me there are other treatments these days for Hep C. I will be cured before I retire she said. More blood work done – HIV Screening (came back negative) and a comprehensive Hep C test (elevated).

December 14, 2017: Went to Hopkins to see my Hep C doctor. She was all flustered about this, that and the other. She mentioned that I needed another sonogram because of my cirrhosis? What cirrhosis I asked? First time since 1989 that someone said I had that! She looked at me all crazy and said, “oh, well we need to do a fiber scan and we can do that now”. So, I went into another room and another doctor did this thing with some sort of pulse on my liver, handed me the printout and sent me back to my doctor. No cirrhosis detected – none, nada, zilch. She says, “well good, we still have you approved for the Harvoni”. I’m thinking someone fudged some numbers or a report just to get the insurance company to pay for the meds. My levels from my blood test did increase by one million points since 2016. So, I went with a nurse to the pharmacy and was given a bottle of Harvoni. Instead of paying a $30 copay, it was only $5.

December 15, 2017: Started my meds this morning. One pill a day for 12 weeks. They only give out 28 pills at a time. $30,000/28 pills = $1,071/pill.

January 5, 2018: JHH Pharmacy called me about my refill. Lots of bullshit going on with this. All because my insurance changed on January 1st. I told the doctor and pharmacy and nurse about my concerns of starting the meds for a month and then my insurance changing. They all said not to worry!

January 9, 2018: Was supposed to get my next batch of 28 pills but the insurance stuff was all messed up. I did get my bloodwork done though. I only have a few pills left. Here is my bloodwork to date:

……………………………….. 3/22/16      11/16/17      1/9/18    Standard

HCV RNA By Rt-PCR:  4,800,000       5,660,000        21         <15 [IU]/mL

HCV RNA Log Value:        6.68                6.75         1.32        <1.18

That is one helluva drop in numbers! (Although I’m not sure what these numbers and abbreviations mean!)

January 11, 2018: I picked up my meds today at CVS Pharmacy in Parkville. $31,185/28 pills = $1,113/pill

February 5, 2018: Picked up final 28 pills at CVS. Same price as above. They gave me a $30 discount, so my co-pay was only $5.

Grand total for insurance companies was $92,370 or $1,099.64/pill. Unbelievable!

March 8, 2018: Last pill.

March 14, 2018: Dr. visit and bloodwork. Visit went well, and we discussed a lot of the numbers and what they mean. Most are just markers, like the ones above. These numbers are checked to see if the patient is still taking the Harvoni (or any other med) continuously. Which I have. Never missed a dose. There are a lot of factors that the doctors look at, to determine whether I am clear and cured of Hep C. I go back April 12th for a follow up and then June 1st for another blood test, followed by my last visit to see my doctor on June 13.

March 21, 2018: Clean 31 years and my final blood test results are listed. As I stated earlier, I am not sure what all the numbers mean, I just know that they all fall in the standard range. Cured of Hep C? Most likely (Next blood test should tell). Cured of addiction? Never will be.

And with that, I leave you with this:

And may I not with great propriety ask myself From whence have these daily and long continued mercies been received? By whom? And by what source have they been administered unto me, And thereby enabled me to take my pen, and answer these solemn, and important questions? Let me truly, and faithfully Answer, From my Savior and my God. And most grate fully do I acknowledge his goodness for every Blessing granted unto me; humbly praying, that every error, that I may have committed or incurred, in my passed life may be blotted out and forgiven and that the few remaining days that may yet be allotted unto me, may be passed in preparing to appear in the presence of my Savior and my God.

John Davis, Water Engineer. Hagerstown, Md. January 1851.