I’m going to try something unusual for RBC: publishing something more personal than policy-oriented.
Here’s the background:
Sometime in 1999 I got seriously ill, but my physicians didn’t have a clue as to what it was. My old friend Gary Emmett (after making what turned out to be the correct diagnosis based on nothing more than a telephone call) suggested that I could spare my voice and my emotional energy by typing up notes about what was happening to me and emailing them do a list of friends. That would avoid starting every conversation with a recitation of symptoms. As the weeks progressed, the notes turned into something like a personal journal. A number of friends said they found it fun to read; after at long last I got a diagnosis (of Hodgkin’s Lymphoma) and been cured, I thought about publishing the email archive under the title The Dr. Hodgkins Diet: How Lost 40 Pounds Without Ever Going Hungry, but failed to find a publisher.
Here’s a somewhat modified version of the longest of those notes, about fear of dying, and another reflecting on the mind-body problem in medical care.
Flash forward 17 years. I got sick again, this time starting with a persistent cough that turned out to be a cancer on the vocal fold plus (apparently unrelated) declining kidney function. By the fall of last year, my nephrologist gave me the bad news: within no more than a year, I was either going to need a kidney transplant or have to go on dialysis. I didn’t keep this a secret from family, friends, and co-workers, but I didn’t see any point in shouting it from the rooftops. Still the number of people who knew was large enough that I decided to revive the medical journal, for those who wanted to follow the play-by-play.
Now that I’m through the worst of it – thanks to a brilliant surgical team and my sister Kelly, who donated a kidney – and in remarkably good shape, considering, I’m going to take up the suggestion of some of the readers of those accounts and publish that journal. Having once again failed to find a commercial outlet, I’m going to take advantage of my RBC connection to put it all up here, as a serial, with a post each day covering a single update (which came about twice a week). The first installment is below. In addition to whatever human interest it might have, a patient’s-eye view might be of some value to people engaged in health care and healthcare policy.