A Delicate Balance

by DAVID
(VICTORIA BC CANADA)

I’ve been meaning to write down my experience for a long time now and this gives me the opportunity to do so. My name is David and I suffered from Hepatitis C for over 20 years without knowing. When, on October 20, 1993 I experienced liver failure and an Oesophageal Hemorrhage. At the time I had know idea what was happening to me. I was 43 years old, a runner and general fitness buff, working for the same company for a dozen years with a wife and 4 children.



My wife took me to the hospital where I collapses on the gurney and didn’t wake up for 4 days. The diagnosis I received upon coming too was Hepatitis C and I had incurred such damage with only 10-15% functioning liver left that I was told to go home and “get my affairs in order.”

The Doc’s had a couple of options when they were working on me, i.e...placing a stint in my liver to allow unimpeded blood flow or just keep trying to stem the flow of blood through my Oesophageous. My Oesophageous exploded like a soaker hose and every time one hole was plugged, another would spring open. Let me say that I do remember coming too on the table for a brief moment and scanning the situation down the length of my body seeing that my skin was grey except for a bright red patch around my vital organs (which is normal in these situations.) I was too numb to feel fear.

After I returned home and getting the reassurances from the Gastro Enterologist that I could phone him any time for information, assistance or support I proceeded to settle in for my twilight years living a marginal existence on the fringes of the medical community and society in general. That’s what I thought. Needless to say, my Gastro Enterologist disappeared after his initial work of saving my life (which I, to this day recognize with great awe) being as he didn’t take the safe way by placing a stint which would have prevented me from having any future crucial treatments which as it will be revealed is the reason I’m still alive today. But I digress. I had never heard of Hep C. The medical community had just recently named non A non B Hepatitis precisely that and as I would find out later would be crucial in my own personal development as a human being.


Fast Forward to March 1994

I spent a very frustrating 4 months through Christmas and New Year trying to communicate with my specialists (2 to be precise and who were summarily fired due to their inability to put forward a definitive plan of action for any kind of treatment or options.) Except for my personal General Practitioner who along with my extremely forthright now former wife cadged our way into the Vancouver Canada Transplant Clinic without a referral from a specialist!! Don’t ask me how. I was too ill to know and one of the specialists said “why would you go to the Transplant Clinic, they’re just a bunch of kooks practicing Voodoo Medicine!”


This was the first of many turning points in my recovery. The first glimmer of hope in an otherwise bleak landscape of few options and NO guideposts.

It turned out that my only treatment option was a liver transplant. As long as I met the stringent criteria I could see myself enjoying a few more years of life however marginal it would be providing I could even obtain a transplant in time and that the transplant would work and I wouldn’t reject the liver or develop complications at any time in the future.

Then began the long torturous wait for all the hoops to be jumped through to that I could see myself clear to finally and proudly wearing my pager to wait for that fateful call. I received my pager at the beginning of December 1994, a mere 13 months after I’d been told I had only 2 years to live. Now I could see progression in my life for the first time, along with the terror of the unknown I had hope. Also, at that time I joined a fledgling support group for Hep C sufferers. The zeitgeist was slowly revealing itself to me!

Over this 13 month period my health was deteriorating noticeably. I lost 30 lbs., had blinding headaches, no energy and suffered from Encephalopathy, which is a brain fog brought on by the liver’s inability to metabolize protein. They took my license away! Now I was really in dire straits, on the days I felt well enough to drive I was forced to stay home. Also, my wife and I had separated and I was living by myself a few blocks away. I was depressed now on top of everything else I was experiencing. I felt guilt because my children were now not seeing me as often as I or they wanted and I was acutely aware of my mortality every day. I had to work through the whole living and dying experience and as a result turned to Buddhist tests to help me understand and assimilate my experience into some kind of positive context.

The spring and early summer of 1995 saw me deteriorate more rapidly. Now my work threw me a party and raised $10,000 for extra medical expenses and my wife and I temporarily reconciled, as I was too ill to liver by myself. I was finding solace in my reading but my eyesight worsened alarmingly during this time and my transplant team said there’s no point in getting new prescription glasses as my eyesight would improve after my transplant if I could receive one in time, now that was the elephant in the room!!

Normal procedure post transplant would be 3 months living close to the hospital for, at first daily checkups and then reducing them slowly week by week. So, we were fortunate in having a relative’s house to live in nearby. So, that was a blessing in disguise. We had to take a 4-hour trip form our city to Vancouver; split by a 2-hour ferry ride. Still, we had a pager and a plan for when that pager went off.

Mercifully that very thing happened on August 2, 1995; exactly 16 months after my initial blow out.

On August 1st my wife and I had checked in with our doctor in his office and he had devastating words for us to hear, “Dave, you won’t make it through the rest of the week!” he said sadly. My odyssey had become a part of him in a way as I was his first patient in a long distinguished career to experience this particular type of medical calamity. So now I had to finally come to terms with my life. In that one moment my life streaked before my eyes like looking out at the scenery from a train hurtling down the tracks.

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