Remembering dialysis

Today I happened to come upon the attached memo, something I routinely sent out to people who asked about my kidney illness before the transplant took place. The memo evolved during the two-year period I was on dialysis -- this may be the final form of it.

Jim

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Kidney illness update (as revised June 28, 2007)

Here are some of the questions friends have asked and brief responses...

>> What is the illness you have?

The gradual failure of my kidneys. Mine still are working, but at only about 9 or 10 percent of normal function.

Since January 2006, I have required dialysis (the filtering of my blood with an artificial kidney).

>> How sick are you?

Quite sick, but I don't feel sick. I'm far from a "worst case" patient. I was fortunate to become aware of the illness much earlier than is the case for many others thanks to blood tests several years ago. Because of early treatment, my kidneys are still working, though at a reduced capacity. My situation is fortunate. For many patients, by the time kidney illness is recognized, kidney function is close to zero. When that happens, daily liquid intake has to be drastically reduced. Patients may feel they're on an endless roller-coaster -- energy one day, following dialysis, then exhausted the next.

>> Is kidney illness painful?

Not really, at least not in my case. The insertion of the two hollow needles into my left arm when I have dialysis is not pain free, but the pain is usually over quickly.

>> What caused the kidney damage?

It's not certain, but most likely it had to do with high blood pressure.

>> Is kidney illness fatal?

Without treatment, indeed. But with dialysis, one can go on for many years, though with gradual deterioration as dialysis doesn't equal having a fully functional kidney. (Not long ago I witnessed a death in the dialysis clinic -- an 83-year-old patient who simply faded out. It seemed he had fallen asleep. As is often the case with dialysis patients, kidney failure was only one of the problems he was facing.)

>> Is there any cure?

Though there is work going on to develop an artificial kidney that can be implanted in the body, none exists so far. Perhaps in another generation?

The only cure to date is a kidney transplant. After many tests, it has been decided that I'm a suitable candidate for a transplant. Unless one find a kidney donor, the average waiting time is 54 months, and it can be as long as 72 months. A transplant can occur much more quickly if a living donor offers a kidney.

>> Do you have a kidney donor in sight?

Nancy is exploring the possibility of donating a kidney. She has had quite a few tests these past half year. So far she appears to be a good match (same blood type, in good physical condition, heart fine, etc.). We know from a renogram that both of her kidneys are working equally well, so that a) she will still have a kidney capable of doing all that it needs to do and b) the one she gives me will also be up to its task in my body. More recently she has had a CAT scan and another round of tissue matching tests.

Here are two web pages about kidney transplants:

http://www.kidney.ab.ca/treatments/transplant.html

http://www.answers.com/topic/kidney-transplantation

>> Is kidney donation a risk to the donor?

While any surgery involves risks, the risks are regarded as slight for kidney donors. People who have given a kidney go on to live normal lives. (One of the early tests for potential donors is a scan to see if you do in fact have two kidneys. Not every one does. One healthy kidney, however, is all you need.)

>> What is hardest about dialysis?

For me, mainly the time it takes -- three sessions a week. Altogether dialysis involves approximately 50 hours a month or 600 hours per year -- about a quarter of my former working time. I normally leave the house about 2:30 and get back home about 6:30, traveling by bike. The hospital is only a kilometer away, so travel time isn't a big factor.

>> Can you travel outside Holland?

Yes, but not easily. I can't go anywhere for more than three days without first arranging dialysis care locally. This turns out to be a very time-consuming process. If the local dialysis clinic has too many patients already, as may easily be the case, they will not accept me. I had a great deal of trouble finding a clinic with space for me in London last May. I ended up in a private clinic that mainly serves wealthy patients from the Middle East. Later the same month, with the help of French friends, I was able to arrange five sessions of dialysis in Perpignan while taking part in a Merton conference in Prades. I've since been on lecture trips in Italy, Canada Spain, the USA, Greece, and -- most recently -- Memphis, Tennessee, for a conference on Thomas Merton.

>> What does a dialysis machine look like?

There's a photo of me hooked up to a dialysis machine at the Alkmaar hospital here:

http://www.flickr.com/photos/jimforest/91857028/in/set-151995/

>> How does a dialysis machine work?

There are drawings with brief explanations on these two web pages:

http://en.wikipedia.org/wiki/Hemodialysis

http://www.davita.com/article/dialysis/181

>> How are the people who take care of you?

I'm impressed with the nurses. All of them are extremely good at what they do and are, no less important, caring, good- humored people. The majority are women but there are also a number of male nurses.

>> Can you write during dialysis?

No. I really have effective use of only my right arm, though, with care, I can do a little with the left hand (the arm connected to the dialysis machine. I'm able to manage books and magazines. Dialysis has become mainly a time of reading. On the occasions when I'm too tired to read, I have a small DVD player and so cnn watch films.

>> Have you written anything about being ill?

I've written a chapter on "The Pilgrimage of Illness" for a book that Orbis will publish later this year ("The Road to Emmaus: Pilgrimage as a Way of Life"). The chapter is posted at:

http://incommunion.org/forest-flier/jimsessays/the-pilgrimage-of-illness/

Please keep us in your prayers.

Jim

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photo: A maple leaf that was along my path in at the Antiochian Village in Pennsylvania last month, not quite two years after the kidney transplant.

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Two years on...

To celebrate the second anniversary of the kidney transplant (31 October 2007), at breakfast this morning I gave Nancy the new edition of the Van Gogh Letters. Given all the Van Gogh-related translation work that Nancy has done in the past two decades (currently she's working on a book about Van Gogh forgeries), it seemed doubly appropriate. Also the CD of the letters that comes with the set is likely to be a useful resource.

The book had a big launching at the Van Gogh Museum in Amsterdam the day before I flew to the US several weeks ago. Nancy went the next day with Diane Webb, one of the book's three English-language translators. Here's an extract from a letter Nancy sent me that evening:

"What a lovely day! Diane asked if I wanted to go with her to the Van Gogh Museum to see the new exhibition on the letters. She had been there the evening before for the opening (attended by the Queen), but so much else was happening that she didn't actually see the exhibition. She said all she saw was wine and canapes and lots of people. So we spent the rest of the day there. It was fabulous. The exhibition is definitely worth a visit. A selection of Van Gogh's letters are shown in glass cases, with the paintings and drawings he refers to on the walls. Breathtaking. You just can't believe what you're seeing. No catalogue, no matter how good the picture quality, comes close to being face to face with the real thing. And I saw the book -- or should I say books! Diane showed me the whole thing, including the part she did. I have a very serious book lust here. You wouldn't believe how beautiful the design and quality is. A six-volume boxed set. To get a glimpse, check out the museum site: http://www.vangoghmuseum.nl/vgm/index.jsp?page=200942

"The whole thing is copiously illustrated with everything that Vincent refers to in his letters -- his own paintings and sketches and paintings of other artists that he refers to. And the quality is superb. Each of the three translators is being given two copies. When you come back we really should try to see the exhibition."

It's an expensive set of books, but a substantial discount is offered by several online bookshops.

Two years on with Nancy's kidney, I seem more than ever aware of what a miracle it is to be really well, not to say no longer being a prisoner of dialysis.

There is a folder of transplant-related photos here:

http://www.flickr.com/photos/jimforest/sets/72157602782265033/

Jim

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