How my Family And I Survived Castleman's Disease

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The year it happened was 2005; I was a happily married 35-year-old with a small, growing family, a picket fence, a sports car and PTA meetings to attend. My parents’ family ran a restaurant and I was an important partner in the business; my life could not have been better. The funny thing about it was, I had never been the sickly type at all. Except for a bout of asthma around the time I was 10, my medical history was remarkable only in the way there was nothing to report. All of that ended though in early spring that year. I went to bed at night expecting fully to wake up to a nice lazy Sunday morning and maybe play softball in the yard. Sunday morning was anything but lazy though; it was about 4 AM when I awoke to a terribly painful clutching at my chest. My wife had her sister take care of the kids, and drove me to the emergency room right away for all the standard tests that needed to be done. I feared something terrible – a heart attack may be, and I was fairly relieved when they found in the end that I only had an infection of the lungs, and maybe a pneumonia. That was pretty good, I thought; all I needed were a few antibiotics, and I’d be right as rain.

That was actually only the start of a long year of repeated misdiagnoses one on top of the other. I never got better on the antibiotics, and the clutching pain came back only a week later; I weakened steadily so much so I couldn’t take a walk around the park without breaking out into a sweat. I went to specialist after specialist, and they diagnosed me with lymphoma, thymoma, mediastinis, and a bunch of other Greek or Latin words we didn’t really know what to do with. When there is a disease you’re dealing with that isn’t among the most common ones that your doctor gets to deal with, you had better prepare yourself for the long haul. And then we took a trip to New York, for a consultation with this hot shot high-level surgeon who was a family friend. It was closing in on six months now since I had first fallen ill; we were desperate. This doctor finally came up with a real clue to what I had – Multicentric Castleman’s Disease.

Most of the diseases I had been diagnosed with earlier, as strange as they were, at least had a cure; Castleman’s disease we learned, was one of the incurable puzzles left to medical science. They quickly put me on a course of thalidomide and steroids, but the prognosis they said wasn’t great. My sister though, wasn’t really sure that we should buy any diagnosis without a second opinion. She called and made an appointment with a specialist all the way in Arkansas, and booked me for a full week at the hospital submitting to tests. I had had enough of all the poking and prodding, but my wife made me go, and today I’m glad I did.

There have been so many advances over the past five years in the treatment of Castleman disease though, and I’m here to tell my tale today. The thing about any rare disease is that you can’t just trust in the experts. You have to become an expert yourself more or less to be able to weigh your options properly. Talk to anyone who’s had a rare diagnosis, and you’ll hear a tale much like mine. If you are reading this, you probably know what Castleman’s disease is all about; it is a condition where the body for no reasonand out of the blue, grows tumors and other diseases throughout the body, all in the lymph nodes around.

Treatment for Castleman’s disease is all symptomatic. Since they don’t really know what causes the disease in the first place, there isn’t anything that can get to the root of the problem that you have. They give you drugs like MRA, an anti-interleukin-6 drug, and what it does to you can be quite terrible. You get chemotherapy like you would with cancer, you get strong antiviral drugs, and you get debilitating corticosteroids. But in the end, if you have a strong support system in your family, the way it did, you can only come out on top.


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