My Disease

My story is a long one, so here is a brief synopsis.

I suffered from this illness and the side effects that come with it for nearly 24 years. It began with some commonly known symptoms – fatigue, which I attributed to some hard physical work. Physical work I was not accustomed to. Another symptom I had was itching which I attributed to dry skin, humidity, or even the soap I was using at the time. If that was the extent of the symptoms, why would I go to the doctor? Going to the doctor never crossed my mind. In fact, it would be an awkward discussion, I thought.

Me: “Hey Doc, I’ve got itching going on!”

Doc: “Anything else?”

Me: “I’m tired – probably from all of the physical work I’ve been doing. My church is constructing a new building.”

Doc: “Try this cream and get some rest.”

That would be my summation about it all, and that ‘s how I handled it. Twenty years ago, I think that’s what we’d all do but had I gone to the doctor and had he discovered an underlying cause (PSC), perhaps my health issues would have taken a different route altogether. I’ll never know. But, I now know this; if you or anyone you know has the slightest health issue, whether it’s a cough or a subtle discomfort – get to the doctor. Have you heard that before? That’s how things have changed since I contracted PSC twenty-eight years ago.

The symptoms got worse. The itching intensified, the fatigue became overwhelming and someone finally recognized jaundice. Off to the doctor I went. After several visits and blood tests, the doctor came out of his office with a five-inch-thick medical dictionary. He pointed out one four-inch paragraph and said, “I think you have this!”

To abbreviate, it culminated with a successful third transplant at New England Medical Center in Boston, Massachusetts, now called Tufts Medical Center.

The disease is called Primary Sclerosing Cholangitis. It is defined by – the narrowing of the bile ducts connected to and within the liver and digestive system. This disease, PSC, was rare in the 1980s and found mostly in women. It is common today and very treatable, though in many cases transplantation is the only cure.

After four years from contracting the disease and taking many medications, I needed a liver transplant. I waited over two years for the transplant (1994) and was hospitalized for three months due to complications. For the next several years, I struggled with the effects of the disease and the medications that came with it. Things were getting better, I was able to do some work, and life seemed to be on the rebound. Then I suffered a major setback (1998) and I was put back on the transplant list for another liver. I waited almost 4 years for the second liver transplant (2002).

In December of 2005, I once again became very ill and was rushed to NEMC. After many tests, it was determined that I had cancer – Plasma Blastic Tumor Syndrome, a form of Non-Hodgkin’s lymphoma. I immediately received chemotherapy which was very effective in eliminating the cancer. In July of 2006, I was in complete remission and have been ever since.

But, due to the chemo and the medication for the PSC, I suffered kidney failure in the following months. In January of 2007, I began kidney dialysis and was put on another transplant list – this time for a kidney. As I waited, three years passed. In November of 2010, I received my kidney transplant. My brother donated his kidney to someone in St. Louis, MO. as I received a kidney from someone in Baltimore, Maryland. There was a total of four individuals that received kidneys that day from four separate donors.

Today, by the grace of God and through excellent doctors, I have very few health issues. There are still some current health issues that prohibit me from doing some things but I am active and blessed, and I enjoy my life today. Through this experience, I have come to know who my God is and I have discovered that He is sovereign and controls it all.

I plan to tell my story, as God leads, in written form in the near future – My Illness, His Glory. This story is incomplete, simply because I cannot describe what happened about My Illness without giving testimony to His Glory; what God did and what He is doing.

Please take a look at my other pages; Who Am I,  My Testimony, and My Life Today.


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