“I Urge You to Get Tested”

chronicles-william It was 1983, I was 41 years old and I was starting to feel like I was 70. I was tired all the time, my joints were stiff, my stomach felt bloated, my eyes tired easily and I was having erectile dysfunction.

I was not one to go running off to a doctor for the least little ache; however I went to a doctor in Terrace, BC, regarding my eyesight and erectile dysfunction. He referred me to specialists, one prescribed glasses, the other testosterone shots. My condition did not get better, it worsened. I was told to take 6 months off work. Instead I worked from home, thanks to an understanding boss. Finally, I went to my GP, Dr. Eastwood. He wanted to know every little problem that I had that I would not necessarily take to the doctor. At the end of that session, he sent me to the lab for a ferritin test. The very next day I was on a plane to Vancouver for a liver biopsy where it was confirmed that I had a very advanced stage of hemochromatosis and that my ferritin count was up in the thousands.

The only reason my doctor picked it up was because just months before, he had a new patient come to him with the disease. He would never have heard of it otherwise. He told me that I needed treatment immediately if I was going to survive more than a year.

Back to Vancouver again to meet with a liver specialist who put me through a regime of twice weekly phlebotomies. I thought I was tired before, think again. They wanted my hemoglobin count down to approximately 10 to leech the iron out of my system. At this time I was told that because of the effects of hemochromatosis, one testicle had atrophied and I would need testosterone injections for the rest of my life; that I needed to be treated for arthritis; that iron deposits had lodged in the muscles of my eye so I would need glasses; and that my liver was badly compromised.

As my ferritin levels dropped over the next couple of years, the frequency of the phlebotomies gradually reduced to weekly, bi-weekly, monthly, and finally a maintenance frequency of every three months. Years went by with me continually having phlebotomies and blood tests with periodic visits to a specialist for ultrasounds and blood work to keep check on the condition of my liver. Most nurses or doctors I visited had never heard of hemochromatosis and the few that did had questions like “do you eat out of iron pots?”

In January of 2008 I suffered a major gastric bleed and nearly died on the way to the hospital with dangerously low blood pressure due to loss of blood.

it was finally determined that my liver was poisoned by the many years of taking Diclofenac, an anti-inflammatory drug used to treat hemochromatosis induced arthritis. The poison in my liver also caused me to be delusional. Once my liver was flushed out and I went off Diclofenac and onto morphine, my health improved but I was tired and weak and had lost 34lbs.

While undergoing CT scans and MRI’s to determine the cause of the bleed, several small cancerous tumors in my liver were discovered. A PET scan in November 2008 reported that the cancer in my liver had metastasized to my lung, negating conventional treatment. I was put on an experimental chemo drug that caused me to be weak, tired, not wanting to eat, and nauseous. In March 2009 further tests showed the cancer was still growing and the experimental chemo drug was not working. There was nothing more to be done except enjoy what life I had left.
It has been made clear by the doctors that the root cause of my problems is hemochromatosis.

The question was asked “how has hemochromatosis affected my life?” the answer would have to be that it has affected me profoundly; emotionally, financially, physically and sexually.

Living with a disease that very little was known about in the early 80’s, and the effects of the disease restricting the activities that should be normal for one in their early 40’s – my mortality was ever present in my mind. My life was controlled by this disease, hospital/ doctor visitations, phlebotomy schedules, lab work, and physical restrictions.

One of the worst emotional problems to deal with was the loss of my virility. It affected my previous marriage and it affected my self esteem because I had to use enhancements such as penile injections, or recently Viagra.

It has been a financial drain for 25 years with the cost of pharmaceutical treatments for the side effects of the disease, plus the cost and time of travel for phlebotomies and test, ambulance charges, work time loss, hospital stays and walkers etc.

Hemochromatosis has been attributed as the root cause of my impending demise from cancer, so to anyone who may suspect they have the disease, I urge you to get tested. If you have it, get your family tested. If a family member had it, get yourself tested. One of my siblings is currently under treatment and past members of our family are suspected of having it.

If detected early, treated and maintained with phlebotomies, one can live a long and healthy life.

William died shortly after writing his story. He wanted CHS to ensure that as many people as possible would hear his story and become aware of the devastating and life limiting effects of hemochromatosis. Please donate today in memory of William so that his message can be spread to more people whose lives are at risk of this treatable condition.