Ten years later…or how life can go Pear Shaped. Adventures with Hep C

Image Courtesy of Science Magazine

Some of the writing here may be uncomfortable to read…fair warning! I am, for the first time, going to discuss my travails with Hep C, and where I have gotten to on that complicated path. If any of you reading this are newly diagnosed with Hep C, I hope it will clarify some of the issues. If any of you are reading this are struggling with new disability, I hope that it will be a positive example of how to come through a challenging period and end up on a positive path.

I was diagnosed with Hep C a bit over 10 years ago… At the time, I had no idea I had been carrying the virus for several decades. I have always had a very strong immune system, and apparently it did a great job of suppressing the virus and keeping it hidden. Alas, like termites, though, simply because it was hiding in the dark did not mean it was not eroding my body away. The Virus managed to gain an upper hand because of stress. I had sold the family property, and my wife and I were working on moving to a better location, out in the country a bit. Alas, this required building a house, and since neither I, nor my wife, Lisa, are average, this turned into quite an interesting journey. More on that elsewhere…. The stress of finding a design that we both could live with, and getting the construction started was fairly major. Added to that was the reality that it was 2009 when the greedy bastards in the financial industry finally had inflated the housing market enough in their attempts to suck as much money as possible into their pockets, that the bubble burst. It was, to put it mildly, shocking to find that over a weekend, the investments we were planning to use to pay for the construction of the house had dropped in value by about 75%! We were in the middle of construction, and I was doing a LOT of work, with the crew I had hired from a local contractor. So, not only was I kind of vital to keeping costs down, we were at a point where we were too deeply invested to quit. All these stressful aspects of life worked together and built on each other, to lower my immune system to the point that the Virus began to win.

Over the 2009/2010 period, I had begun to feel increasingly bad. I did not have the endurance I used to. I did not realize it at the time, but, I was looking increasingly jaundiced. I hit a point where I had occasional vomiting spells, where I was ejecting fairly large amounts of blood. The first time or two this happened, I did not realize that was blood I was losing. Shortly before this started, I had made up a big batch of a very good fruit treat, called “Rote Grute“…which is made of ALL Red fruit! I thought I had a stomach bug, and the treat is what I was vomiting up. Of course, this loss of blood left me anemic, and so, I was also having issues with dizziness and an inability to concentrate.

Finally, one evening, I had a vomiting spell in the kitchen of the house we were renting…and I was dizzy enough afterwards that, although I did manage to clean most of it up, Lisa ended up putting me in the car, and transporting me to the Emergency Room. That was an interesting time, I have to say. I learned, that night, that if one wants to ensure that one will NOT be left sitting for hours in the waiting room, all that has to happen is to for one’s driver to walk into the ER and say “my passenger is vomiting up a lot of blood!” I was in a wheelchair, and rolled through there so quickly the skin on my face was pulled back a bit by the wind! (ok…slight exaggeration, but it was certainly immediate and very quick) They took me back to radiology, and asked me to stand with my back to a wall-mounted x-ray machine so they could get a picture. I was kind of unsteady, so when the tech asked me “Can you stand there for me?” I said “I will give it a whirl!” The last thing I remember was starting to tilt forwards, as I went unconscious. I have no idea if the tech and nurse managed to catch me or not.

Of course, because I kept insisting I was NOT an alcoholic, in spite of looking rather like I lived under a bridge, they tested me for Hep C. When I woke up the next afternoon, I found out that my issues came from the Hep C, and that I had a pretty heavy viral load. most of the current issues stemmed from the serious cirrhosis of the Liver that the Virus had caused. This damage caused blood pressure issues that popped up little blood blisters in my esophagus. It was these, bursting, that had generated the leakage that was the source of many of my problems. Well, the G.I. doctor who worked on me (a fellow named Rollhauser), had a way to fix these issues. Basically, they have a tool that expands a strong, rubber band and allows them to slip it over the varices. This clamps the base of the Esophageal varices causing the bleed, and in a fairly short period of time, the varices die, and the remaining wound heals over. It, though, is a short-term solution that simply stops the bleeding. Interestingly enough, I was familiar with this technique, as it happens to be the same process that bulls are castrated these days. Of course the tools are a bit larger for the cattle…but it is the same process. Dr. Rollhauser seemed a bit puzzled and amused when I mentioned this, as if he was wondering how in the world I knew about that!

While Dr. Rollhauser was there, he explained about the Hep C, of course, and asked some questions to see if he could figure out where I had gotten it. The general opinion, at the time, was that it was passed through contaminated needles shared by IV drug users. I never did that scene, though, but did recall that my dentist had, one day, shown up on the front of the newspaper, as being heavily involved in the drug scene in Knoxville. Apparently he had been using his abilities to prescribe to get various drugs for folks, and doing it in large enough quantities that it caught the notice of the locals. Thinking back, I recall him being a bit twitchy at times, so I had to wonder if he had not been a user also, had used his dentistry needles for drug use, and not cleaned them properly afterwards. The only other option was that I had been in hospital once for wisdom teeth being removed. There was a small chance I had been infected then, as I believe I got some blood products and the operation was fairly complicated. Either one was quite possible, as this was back in the late 1970s, and Hep C was not even identified before the early 90s.

As a side note, it turned out, once I started researching the disease, that a fairly huge percentage of people born between 1949 and 1965 had been infected. It is such a slow moving disease that most folks, like me, might never have an idea that they had it until decades after they were infected. Also, because of the fact it was unknown for so long, it turns out that IV Drug use was NOT an important factor in spreading this disease.

Dr. Rollhauser had pictures of the varices he had banded off, and, I have to say, they were interesting. They looked like little, pink, grapes, stuck to the wall of my gut, with a little arc of bright, red, blood spraying out the top. While it was a bit of a challenge to get information out of him (I suspect he was used to patients that did not understand, or want to know what was going on) we had an interesting conversation. It was during this chat that he was up front, and explained how serious this issue was. The diagnostic term was “Long term Hep C with end stage liver disease) Dr. Rollhauser was clear in explaining that a person at my point of the disease cycle had rather less than a 50/50 chance of living more than four years. Well, being Old and German/Lutheran, I thought to myself “Screw you buddy”…and as time progressed made some lifestyle changes to improve my chances.

Thanks to some medication issues, and the advanced state of my disease, I did end up in hospital a couple more times. The second trip was a re-run of the first, although not as messy. Lisa drove me to the ER, and, once again, I hit the floor in x-ray. I had more varices blow out, alas. To keep this from happening again (at this point in time I had no insurance, so, they were not happy to see me again), the surgeons installed a bypass between the major artery and vein in my liver, so about 70% of the blood flowing through it was diverted away from the liver and simply goes back into circulation. In time, all my blood gets filtered, but it takes longer. The reason for this is that this drops the blood pressure on the major arteries running directly from the liver to the esophagus, and cuts back on the chances of blow outs. This, by the by, has worked great, as I have had no more bleeding issues. Nothing is free, though… The fact that only 30% of my blood is being filtered through the liver at any time means that toxins, including ammonia, can build up in it. The ammonia is the worst problem, as it causes serious neurological issues, including severe tremors, and, in some cases black outs and other mental issues. One fellow I made contact with when I was researching my condition said that he had been fine one day, and then had wakened in a completely different city, several weeks later, with no idea how he had gotten there, or what he had been doing. While I did have some similar issues, I have never gotten that bad. This time in hospital had added interest, too, as I ended up on a respirator, in a coma for around 5 days. Dr. Rollhauser and his crew had a great deal of difficulty tracking down the places I was bleeding out from on this trip, and felt it was better to keep me asleep. It was also a time when my wife and family had to face the reality that the doctors were going to do the best they could, but, there was a very high chance that I would not make it.

Lisa said that she knew I was going to be ok, though, when, several days into this period, the nurse brought me closer to the surface, to make sure I was still there, and said “now we are going to wipe your tushy now.” I raised a hand a bit, and rotated my index finger in the air, as if I was saying “YEA!!!!” While I have never feared death, I have to say that this brush with it certainly has calmed my mind even more. I was aware of what was going on around me for much of the time, except when the doctors were actually working on me…and I remember thinking ” I am at a crossroads here. Do I want to take the branch that leads to my wakening and living on? Or do I want to take the path of rest?” It was an interesting state of mind to be in, and I suppose it was a good sign that I took the road of diving back into the Veil of Tears.

There is a medication, called Lactulose, a synthetic sugar, that is specifically designed to absorb the ammonia as it goes through the gut, keeping the levels down to a manageable point. So, of course, I was prescribed this stuff, and sent home. It certainly worked, but it was some of the worst tasting stuff I had ever ingested. The suggestion was to drink a glass of orange juice after taking it to get the taste out of my mouth. That did help, but, not entirely. Fortunately, over the years, the pharmacist has found flavorings that, while not great, help a lot. In spite of the Lactulose, though, this episode of surgery and the new medication had an interesting side effect…that put me in hospital yet again. I did not have an ambulance ride on my bucket list, but at least I can add it, and mark it “done” now.

The prescribed dosage of Lactulose, as it turned out was far too small. So, about 3 weeks after the last trip, I started slipping into an altered mental state. Lisa had headed out a couple of days before to go see (and take pictures at) an ice skating event some distance away, so I was alone in the house. When she left, I was fine. However, because of the low dose of Lactulose, I crashed rather suddenly. I was in the chair in the living room, and was pretty non-responsive when my landlord, and neighbor checked on me. So after some complications, the cops, the fire department, and the ambulance showed up. My state of mind was very odd, in that it was as if I was looking at reality from a very great difference. I could not, for example, say my landlord’s name, although I knew it. I was not all that good at moving on my own, as I was very, very unsteady. I was just disconnected from reality, and found it difficult to take ANY action. I, for example, had realized the Lactulose I had taken was moving me to get to the bathroom ( it does have that effect), I made it in there, but, I had forgotten to pull down my pants. I am not at all sure how long I had been sitting there when the firemen popped a window, gained entry to the house, and walked me out to the front porch, where I was laid out on a gurney. Not only were the EMT’s not happy about my having soiled myself ( I got to listen to them grousing about having to wash down the bus after transporting me), but, I got stripped, scrubbed and sprayed with a hose of warm water when I got to the ER. It took two days of showers to get the smell off me. Well, the good news was that with a sufficiently increased dose of Lactulose I was fine, and only spent a couple of days in hospital.

After I got stabilized, though, I had to start looking for options to prolong my life (or not, as the case might be). It was a pretty low time for me, I am sorry to say. I have always struggled with Depression and suicidal thoughts, and this setback had really kicked up the volume on them. I did manage to make it through though, but it was a challenge for a while.

On the positive side, I was amazingly lucky in my timing of being diagnosed and having the disease rear its ugly head. While I was sick, I was far from being without hope as I was apparently a LOT healthier than most of the people that are found to have Hep C. There is an index, whose name I cannot bring to mind right now, that measures how close one is to dying. It runs from something like 45 to 5. The smaller the number the smaller one’s chances of living another month. At this point in time – around 2012 – my number was 35 or so. Not good, but WAY better than it could be.

One of the options I looked into was treatment with the classic, Interferon based medications. Dr. Rollhauser told me it would be a waste of time for several reasons.

  1. Hep C, it turns out, has three, distinct strains. They had run tests and found that the genotype of the infection I had was, of course, the one that rarely responded at ALL to the Interferon treatment.
  2. The treatment requires weekly shots for a year, as well as daily pills. The major side effect of this chemical mixture is that I would have the symptoms of the worst head cold I had ever had in my life…for the entire year. In my condition, he felt it would be unlikely that I would even be able to finish the treatment.
  3. Of course, there is the money issue. Since, at the time, I was still without insurance, there was no way I could pay for this fairly expensive cycle of drugs.

Although I was rather disheartened about this, and had just about decided to live as long as I could with whatever drugs would improve the time, my wife and family talked me into exploring the option of getting a liver transplant. While that would not eliminate the virus, it would improve my quality of life for my remaining time, and, would, perhaps, lengthen that period a bit. We happen to have one of the premier transplant hospitals in America here in Tennessee, so, with the help of my younger sister, we arranged an evaluation. The major down side to this, up front, was that (upon the pressure from Lisa and my sister), I got my hair cut to a conservative length, and my beard shaved off. They made the fairly valid point that if I showed up looking like a street person, it would likely hurt my chances of being put on the transplant list as most of the doctors in the area are rather Conservative. It was kind of strange, though, to look in the mirror in the morning, and see my older brother looking out at me. We not only sound VERY much alike (which was always useful for jerking around his kids), but we look a LOT alike.

Hep C, Giant Plush Microbe

As it turned out, though, I could have saved my efforts. We made the trip to Vanderbilt one day and had an interesting and educational consult with one of the doctors on the transplant evaluation team there. The bottom line was that they were turning me down for a liver transplant. There were two, major reasons for this. On the positive side, the doctor explained that I was simply WAY too healthy to qualify. They do not even begin to consider a candidate until their index gets down to the low 20s. On the negative side, as the doctor put it “I had a sociological problem”. The total cost of the transplant and follow up care was in the vicinity of $500,000.00, and I had neither cash nor insurance to pay for it. This was ironical, since I have been an advocate for Universal health care, as every other industrialized country in the world has, for decades now. So, we thanked him for his honesty and the time and education he provided, and hit the road. I chose to focus on the “too healthy” part of the diagnosis, as that was something I might be able to control. The drive down, with my sister, Cathy and her husband Dave, was quite pleasant, as it was good to visit. Also, when we were in the waiting room at Vanderbilt, Cathy pulled out a great, little gift to commemorate the challenges. There is a company, called Giant Microbes, that makes plush replicas of a wide variety of micro-organisms. I already had the Streptococcus and Yeast cells that reminded me of Dad’s fields of research…so I was most amused when she handed over a “Hep C” plush. Alas, the doctor there did not seem that impressed, but he was trying to be very serious.

Dr. Rollhauser, in my first discussion with him in hospital had been blunt about the reality that I would not be able to work again. He recommended that I start the process of applying for Social Security Disability. Being a skeptic, I tried to push on for a bit, but, after several months of less than satisfactory results, admitted the truth of what he had told me. So, after shutting down the business, I moved on to struggle with Social Security. That journey turned out to be slow, complicated, and very frustrating at times. I, foolishly, thought that since “Long term Hep C, with end stage liver disease” was around the third thing on the list they had on the Social Security Website, that was an automatic qualification for Disability, that it would be a straight foreward process. It was not. It took me over two years of interactions with Social Security, and, Finally, getting one of my Senator’s staff involved to get the process moving in a positive direction. (Thanks, Keith Alexander…still appreciate your hard work and care). Finally, after getting yet another stack of forms asking me the same questions I had answered at least three times before, I called Keith up, and said that while I hated to do this, but, it seemed to me that it was time for me to get a lawyer involved… He did ask me to hold off for a little bit, so he could see what he could do. I am SURE it is a coincidence, but less than two weeks later, I got an approval letter from Social Security. I was just glad to have some support as the cost of medications was hurting, and I needed them to stay functional. I have to say that during that period of struggling with Social Security, I came to believe that they were trying to delay long enough for me to die, and stop being their problem.

Interestingly enough, not more than a month or so after I was approved for Disability, the news came out that Medicare (which I was still griping about because of the hoops I had to jump through get approved), lost a lawsuit to a guy in California, over covering the cost of the new, cutting edge anti-virals designed to treat Hep C. For me, this was important because it forced Medicare to cover the cost of treatment with the newly released, Sovosbur based anti-virals (Sovaldi/Harvoni are two of the brand names). They were WELL out of my reach, in America, as Gilead Labs charged $1000/pill for the treatment. This, by the by, was kind of obscene profiteering, as it cost them about $75 to make the pills. Also I had a great advocate at my doctor’s office, who managed to get me on the list of people in Tennessee to be treated with these drugs (Turns out that only 30% of the people applying were being approved in this state). So, after $200,000 worth of medications, and 6 months of daily pills, I ended up virus free. My total cost? a $300 co-pay!)

The Sovaldi treatment had done a great job of wiping out the virus in my body. So, at least, the continuing damage was halted. The down side though, was that I was still left with serious cirrhosis of the Liver, neurological issues, and a couple of other complications, all of which made it impossible for me to go back to working. Most employers are not interested in hiring a 55 year old guy, in the first place, and add to that the reality that at the time I was good for an hour or two a day, and some days, not at all…made my marketability fairly low. Luckily, between the Social Security Disability checks, and Lisa’s job, we had enough coming in to keep the wolf from the door.

I had mentioned, early on, that we had started building a house when all these challenges hit. Well, no surprise, I am sure, the plan of that house changed radically thanks to my illness and subsequent loss of income, combined with the financial shenanigans going on and the almost totally crashed economy that it produced. The original plan is memorialized in a set of architectural drawings I have tucked away. I had designed and built most of a large shop, though, before the Hep C knocked me out, so, we reworked the plan for that, and added a bit to it, leaving us with a good place that was interesting, but, certainly much more limited than we had planned.

Since my exciting times in hospital, I have seen some liver regeneration, but, the neurological issues (some holes in my memory, and permanent tremors) have remained. I still am taking the medications I needed for support, as without them, I DO deteriorate quite a bit. However, with many breaks to catch my breath, I can do a lot more than I could in the early days of my disease. The tremors are probably the most annoying aspect though, as I am a bit of an artist (here are some examples of my recent work) and the tremors make it a challenge to paint as I did before. There are days when the best thing I can do is put the brush down and walk away, as fine details are beyond me. The neurological issues tend to manifest themselves in difficulties typing (I do not always spell as well as I would like), and forgetfulness. As an example of the forgetfulness issue…up to this year, I had never failed to get all the groceries from the cart into the car. This year, twice, I have walked off and left a gallon of milk on the bottom shelf of the cart. SOME of this may have to do with the stress and chaos of the past four years, though, and the stress I am dealing with right now, wondering what shenanigans the current occupant of the Oval Office may pull in his attempts to trigger a coup and turn America into a fascist dictatorship.

If it had not been for the Hep C issues, I would have really enjoyed my time in hospital. I met a wide range of very interesting, caring people who, all treated me as a human, not a broken piece of machinery to be patched up. I had some great interactions with the nursing staff and doctors there. I am a bit different then most, so, I was focused on interacting with them as people, not just service providers. I also surprised them a bit. Every time I was in hospital, I bounced back from my difficulties with amazing speed. For example, a few hours after I woke from the coma and the nurses finished taking all the tubes out (NOT by the by, something I would recommend as an adventure), I had to hit the bathroom. So, since the nurses had threatened me with putting the tubes back in if I did not call them to help me do this, I pushed the call button and explained my situation. Shortly thereafter, a young man showed up. He was going to be hands on, but, I told him to hang loose, and pick me up if I hit the floor. I was a bit slow getting moving, it being the first trip out of bed on my own in five or six days, but, I made it vertical and got walking. About my third step, he looked at me, and said “you REALLY do not need help…but call me if you do” and left. They were really not used to having a guy come in looking like death warmed over, and within a day or two, be ready to roll again.

Why was I able to spring back so rapidly from being on the edge of death (or so it seemed) one day, to walking around on my own the next? At that point I had been doing Tai Chi for about 10 years. I know that this made a huge difference in my ability to focus mind, body, and energy, to walk a healing path. I am going to take a moment here to add a shout out to my multiple instructors who moved me, patiently, on the Path, and my good friend and Elder Brother from another mother, Jim Perdue, who is very encouraging and patient in keeping me focused. I strongly recommend taking up Taoist Tai Chi to everyone that holds still long enough, as it is a huge mental and physical benefit, and, can be done by anyone, no matter what their issues.

Another factor that I have to point out as improving my recovery has been the support from family, spouse and friends. I would be in a far worse place without that unrequested help. I am still not good at asking for help…but, I have come to accept that other people get the same positive feelings that I get when I help others…so, while I am not as good as I should be at accepting their help, I certainly appreciate it. Part of that help was being willing to sit down with me, and have some tough discussions about the future. I have always valued truth, and, Lord Knows, my support network is VERY willing to give it to me! EVEN if I may not want to hear it. So, y’all reading this…realize that accepting help is not a sign of weakness. It is honoring the gift that your friends and family are giving you.

Today, some 11 years later, I am much better than I was. I still have bad days, and those can be very, very bad. but even with the disability left from the ravages of the disease, my good days are far more common. There is hope, but, as I had to learn and accept…”normal” may be different from the way we remember it. It can be as good as we can make it, but, our abilities and limitations may change.

God Protect Us…be safe, wear your mask, practice social distancing and extra hand-washing…

Bee Man Dave

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