Operation Live

Transplant surgeon Mirza Idu, nephrologist Frederike Bemelman and Dink Legemate, another transplant surgeon. On the right TV presenter Charles Groenhuijsen.

Yesterday was the fifth anniversary of the kidney transplant, and -- amazingly -- there was a program on Dutch TV last night called "Operation Live" that featured a live kidney transplant. Non-Dutch speakers won't be able to make much of the dialogue, but the operation itself is breathtaking. It was performed last night at the same Amsterdam hospital that we went to (the AMC), and by the same surgeon who did our operation, Dr. Mirza Idu. At a certain point in the discussion one of the doctors in the studio says that removing a live kidney from the donor is considered "top sport" in surgery, and that Dr. Idu is their "top athlete". Nice to know this! When Dr. Idu is interviewed he says he has performed 600 kidney removals and 400 transplants in his career.

The entire operation takes five hours, and this program is only an hour and a half long, so the part they show is part 2, the actual transplant. By this time the donor is in the recovery room and doing nicely.

The donor and recipient are two women, both named Mariane, who have been lifelong friends.

Also during the program is a short interview with Jacintha Jenniskens, the AMC transplant psychologist who interviewed me during the screening process. She talks about the book that was recently published by the Kidney Foundation that features 20 double portraits of live kidney donations. Jim and I are one of the portraits.

http://www.operatielive.nl/31-10-2012/niertransplantatie

or

http://www.nederland1.nl/gemist/45921?flash=true

Nancy

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A new book on kidney donation

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Just to note that a first-rate book on live donations of kidneys -- 20 Dubbelportretten nierdonatie bij leven ("20 Double Portraits of Kidney Donations by Living Donors" -- was published two days ago by the Dutch Kidney Doundaton (Nierstichting Nederland). Photos of the book’s presentation are in this folder:

http://www.flickr.com/photos/jimforest/sets/72157631698247579/

Nancy and I are among those who were interviewed.

The book has been published in two formats, small (A6) and large (A4). The text is the same in both. To order copies of the large-format edition: 

www.nierstichting.nl/folders/boekbestellen?execution=e4s1

-- Jim

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Three years!

For many people, today is Halloween. For Nancy and me it’s the third anniversary of the relocation of one of her kidney’s into my abdomen where it has dwelt happily and efficiently ever since. Three years! If I had a bottle of champagne in the house, this would be the right day to open it.

My first words today were addressed to the donor: “Thank you, Nancy.”

For nearly two years the backbone of my life in so many ways was the dialysis. Everything had to be arranged around those three weekly sessions of blood filtering. Normally this was at the local hospital, but, if I were traveling, sometimes in hospitals or clinics in other countries: Greece, Spain, Italy, England, France, Canada and the US.

Ever since the transplant, I have felt something like Lazarus after being brought back to life by his friend Jesus three days after being placed in his tomb. Of course I had no real death experience, but kidney illness is, even in these days, a close encounter with death.

In case you have never read it, I recommend something Nancy wrote about deciding to make that donation, “Saying Yes” -- see: http://www.jimandnancyforest.com/2009/07/29/saying_yes/

Jim

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.

* * *

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

* * *

When you're smiling -- the transplant, one year on

Yesterday it was one year since the transplant, and we went out to our favorite Alkmaar restaurant to celebrate. We began talking about what it had been like one year before -- coming out of the anesthesia, trying to eat a little bouillon -- and my strongest memory was of just lying there in my hospital room, fresh from the operation, with a smile on my face. There was a purity of happiness during those days that still makes me smile.

What was it about that happiness that was so pure and joyful? At first I thought it was simply a matter of coming out of major surgery and knowing that I was still alive and that nothing had gone wrong, that all the weeks and months of stress and anxiety were over. But it was more than that. I’ve been deeply relieved before (when the SATs were over, for instance, or when I got my driver’s license), but I didn’t find myself just lying in bed with a smile of pure happiness. Then I thought it had to do with the joy of giving, the feeling you have when you give someone a big present, when you make a grand gesture. I’ve done that before, too, and it does make you feel good. But if you examine your good feelings about making grand gestures, there’s always that nagging sense that you’ve done the thing partly out of a sense of egoism -- if I make this gesture, people will nod and say, “How generous she is.” Even if you don’t act from such a motivation, it’s always there, muddying up the waters.

But this was pure. There was no mud in the waters at all. I can’t remember when I’ve ever felt a happiness like this. And I think it has less to do with the gesture itself, the gift, than with happiness at having been given the opportunity to make the gesture in the first place. Before the operation I didn’t feel it so intensely. I remember at the beginning, when I first offered to give my kidney, how thrilled I was to learn that our blood types were the same, and with every test I was equally glad to learn that no problems or anomalies had been found. But there was a complexity of other feelings, too: anxiety about the operation, about how it would affect me to have only one kidney, about how long it would take to recover. I had crossed the threshold and had said my yes, but I still felt that I was moving relentlessly towards a great unknown.

Last night during dinner Jim and I talked about what it had been like the day before the operation, when we were being prepped in the hospital. Neither one of us was nervous. We remembered taking the early morning train to the AMC with our packed bags, traveling first class (which we rarely do), smiles all over our faces. At that point you’ve placed yourself into other hands -- the hospital is waiting for you, the bed is ready, the surgeon has you down on his list and all you have to do is show up. Early the next morning, just before the operation, the nurse asked if I would like a pill to calm me down, and even though I didn’t feel apprehensive, my legs were shaking uncontrollably and I said yes. It was half of a little blue pill, and it was very effective. I don’t remember being wheeled into the operating room at all. By the time I got there I was out cold. Several weeks after the operation, a translation colleague who also works as an OR nurse at the AMC sent me an e-mail in which she said she had seen my name on the daily operation roster. She told me she had come up to my bed in the recovery room and quietly said, “Nancy,” and that I had opened my eyes and given her a “lovely smile” and gone right back to sleep. I don’t remember this.

The happiness of having been given the opportunity to do something out of love. That’s what it is. It’s gratitude. It’s gratitude that everything just happened to turn out right: the right blood types, the right tissue matches, the right outcomes on all the tests. It’s gratitude that the medical people in Alkmaar and Amsterdam were all so kind and supportive, and so incredibly skilled. But it’s also gratitude for the strength to cross the line to yes. Freedom is a very mysterious thing. Acting in freedom is not acting in a vacuum. Every yes or no we utter is the product of a lifetime of being exposed to examples, of being taught certain things and of having been loved -- or not. Yet each yes or no is not predetermined by these things, and we’re responsible for every decision we make. We’re not doomed by our past to make decisions in a certain way, nor can we get away with taking the easy way out and pointing to our past as the rationale. Contexts are terribly important, and it’s important to give your children good examples and to tell them stories of courage and selflessness. Yet every yes or no we say is uttered, as it were, in eternity, and though it may be shaped by the past, it’s not inevitable. “Love without freedom is slavery,” said our friend Fr. Meletios Webber. Gestures of love must be made in freedom. And to be given the opportunity to make such a gesture is a great thing.

I think that’s what the smile was all about.

Eight months later: launching a new blog

Yesterday -- the last day of June -- marked the passage of eight months since one of Nancy’s kidneys made a journey from her body to Jim’s. All has gone amazingly well, as was confirmed just yesterday morning when Jim saw one of the nephrologists (a word which once upon a time meant absolutely nothing to either of us) at the Amsterdam Medical Center.

As it seems there only minor additions can be made to this blog that have something to do with kidney transplants, perhaps the moment has come to leave the old postings as they are and do our occasional journaling on a new one: On Pilgrimage at http://jimandnancyonpilgrimage.blogspot.com/.

We look forward to meeting you there!

[photo: This reproduction of an ancient sculpture of an owl was found while we were in Rome and now inhabits Nancy’s desk.]