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It's amazing how many ideas you can conjure up as a solution to your problems. The first thought I had, as do most people with kidney problems, was, Where can I get a transplant? But people line up, sometimes for years, waiting for a kidney. My doctor said that even if I got in line for a transplant, I'm not a good candidate because of my age and my blood pressure. Plus, the drugs to prevent rejection are risky for someone my age.My daughter-in-law, Tamara, offered to give me one of her kidneys. I, of course, refused. There is something strange about walking around with your daughter-in-law's kidney.
Dialysis is like being connected to a washing machine so that all the body's by-products are removed by a blood filtration machine. This means washing out all the toxins three times a week, five hours at a time.
I didn't think my kidneys would let me down, given our long relationship. But in fact, they steadily declined, and my doctors told me again that dialysis would soon be necessary. I got mad at my kidneys. I had treated them very well, and this was the gratitude they gave me? Eventually I agreed to dialysis, but I had a counteroffer. Could it wait until after summer?
So that was the plan.
Then, a few weeks after my wonderful 80th birthday party, I had a sudden onset of terrible pain in my right foot. I called my doctor, Michael Newman, who still makes house calls. He looked at my foot and said I probably had blood clots in the arteries, compromising the circulation. It was an emergency. He drove me to Georgetown University Hospital.
The doctors there tried hard to dissolve the clots and re-establish blood flow, but they weren't successful. I would lose my foot and part of my leg. I was not happy. Dr. Newman said if I didn't have my leg removed, I would die of gangrene -- a slow and painful death. It didn't sound very pleasant. As it turned out, the dye used to perform the angiogram added insult to injury. My failing kidneys had now totally failed. I would need to begin dialysis immediately in order to proceed with the amputation. Talk about a double whammy.
I was upset, angry and depressed. Still, I agreed to begin dialysis so that my foot and lower leg could be amputated. After surgery, I agreed to continue dialysis, as I was not getting much support from my loved ones for the dying option, which I personally thought was best. I tried dialysis 12 times and decided I didn't like it.
"That's it," I said. "I don't see a future in this and I don't want to do it anymore!" I'd discovered the idea of the hospice by then; I had an alternative.
Dr. Newman told me, "It's your choice."
I knew the entire family was against the idea of stopping dialysis. Without dialysis, I would last only a couple of weeks. I realized that by throwing in the towel, I would hurt a lot of people, particularly my children, Jennifer, Joel and Connie. There was tremendous pressure to take dialysis, and there were lots of tears when I broke the news that I was not going to do it.
Dr. Newman arranged for me to be transferred to the hospice. It's a nice place, but it's not easy to get into. It's like applying to Harvard.
No one gave me a clear idea about what might happen here. And no one mentioned that my condition might actually improve.
On February 7, 2006, I was given a room at the Washington Home and Community Hospices, which is on Upton Street, in northwest Washington, D.C. It's a busy street. As I tell visitors, dying is easy. Parking is impossible.
The hospice has 14 beds. The average stay here before you go to heaven is a few days to two weeks. If you're going downhill, Medicare pays for it. If your condition stays the same, Medicare may not pick up the tab.
The purpose of the hospice is to let you go with dignity and make death easier on you and your family. When a patient enters the hospice, an entire team sets to work to meet the family's needs -- a doctor, a team of nurses, a case manager, a social worker, a chaplain, a nursing assistant, a bereavement coordinator and, of course, the volunteers.
My hospice has a large sitting area for families, which I now call my salon. It's quite comfortable, with couches, tables, a library, a children's play area and an aquarium. There's also a large picture window overlooking a beautiful garden with flowers, trees and a fountain. I spend each day greeting friends, watching TV, reading and taking naps. At night, I return to my bedroom. It's very rare that patients ever come out of their bedrooms.
The family room is where I hold court and where I said goodbye to people before I realized I wasn't going anywhere just yet. I also use the couch for therapy sessions. My friends will start by talking about my problems but then switch immediately and start telling me about theirs. I charge only $75 an hour, because, after all, you don't want to make money in a hospice.
The nurses here do everything for me, including attaching and detaching my new leg. Nurse Jackie Lindsey gives me a bath each morning and dresses me so she won't be ashamed of me when I'm sitting in the salon.
Imagine, if you will, that you are a man who can't bathe himself. The person who does it wants you to be clean.
I told her once, "That's no fun."
Her reply was, "Someone has to do it."
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