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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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.]

Home from Rome

Our blog postings are getting less and less frequent, and less and less focused on kidneys, but some brief account of our recent two-week stay in Rome deserves a place in this journal, as one of our reasons for going to Rome was to celebrate the kidney transplant. (That we were able to go to Rome or anywhere for so long was thanks to our daughter Anne, who moved into our house in our absence and gave a helping hand to Lorraine, Nancy’s 91-year-old mother.)

This was our first extended time away from home since May 2006, when we went to Prades, France, Thomas Merton’s birth place, to take part in a Merton conference. On that occasion, Nancy and I made many long drives from Prades to Perpignan, location of the nearest dialysis center. I am happy to say that, while in Rome, not a minute was spent at a hospital.

Merton again had a role in our going to Rome rather than various other places we might have been tempted to visit. As in Prades, we were participants in a pilgrimage group organized by the Canadian Merton Society. Rome had been chosen because it was there that Merton, then eighteen years old, first began to find his round-about way to Christianity, following the deep religious estrangement that surrounded his father’s death when he was seventeen.

In his autobiography, The Seven Storey Mountain, Merton vividly described the impact of his stay in Rome in 1933. It was not the usual tourist sights that moved him. He found much of the city’s ancient statuary and monuments “vapid and boring” and was equally unimpressed with the art and ecclesiastical monuments of the Renaissance and Counter-Reformation.

What truly astonished him were the city’s most ancient churches, in which so much of the iconography of Christianity’s first millennium was still to be seen.

“I was fascinated by these Byzantine mosaics,” he wrote. “I began to haunt the churches where they were to be found, and ... all the other churches [among them Saints Cosmas and Damian, Santa Maria Maggiore, Santa Sabina, San Giovanni in Laterano, San Prassede, Santa Constanza, Santa Agnese, Santa Cecilia and others] that were more or less of the same period.... Without knowing anything about it, I became a pilgrim.”

Eager to understand the iconography of the mosaics, he bought a Bible. “I read more and more of the Gospels, and my love for the old churches and their mosaics grew from day to day.”

On one memorable day, Merton climbed the Aventine Hill to visit Santa Sabina, one of Rome’s oldest and least modified churches. He decided it was time to pray and to do so on his knees, yet prayer in a public place was intensely embarrassing. “That day in Santa Sabina, although the church was almost empty, I walked across the stone floor mortally afraid that a poor devout old Italian woman was following me with suspicious eyes.” Despite his self-consciousness, he managed to cross himself with blessed water as he entered the church and then, kneeling at the communion rail, to recite the Our Father over and over again.

As you might expect, one of the first churches we visited was Santa Sabina, walking there from the hospice where we were staying a few kilometers away. (Another of the ancient churches we visited was San Teodoro, on the west edge of the Forum, not far from Santa Sabina, but probably this is one Merton didn’t enter, as I doubt it was open to visitors back in 1933. In the year 2000, Pope John Paul II gave it to the Orthodox Church. Following restoration, it was opened in 2004. Nancy and took part in the Liturgy there on our last Sunday in Rome.)

Happily, there was plenty of time for many unscheduled and unhurried walks, as the ten-day Merton Society program was light: breakfast together each day, lectures on four mornings either by Michael Higgins or Donald Grayston, a get-together every evening on the hospice roof, and two shared suppers. Together we also attended Pope Benedicts’s weekly audience, at which we were among the groups introduced to the pope (he waved at us and we waved back). We also went as a group to the Trappist Abbey of Tre Fontane (which stands where St Paul was beheaded in 67 AD), then to the catacomb of San Callisto, along the Appian Way to the southeast of Rome, and finally to San Paulo Fuori le Mura (St Paul’s Outside the Walls), where Paul was buried.

If you have an interest in seeing the photos taken during our time in Rome, they are here:

http://www.flickr.com/photos/jimforest/sets/72157605352157251/

There’s also an account of our visit to another of Rome’s best preserved ancient churches, the Basilica of San Lorenzo Fuori le Mura (St Laurence Outside the Walls):

http://incommunion.org/forest-flier/jimsessays/rome/

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Photo: a view of the exterior of Santa Sabina.
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One More Thing, part two

In the last posting three weeks ago, I expressed relief that so far this spring I had not yet been battling hay fever and wondered aloud if this might not be another of the several positive unexpected by-products of the transplant. Since then, I’ve had two or three days of being aware that my hay fever has not altogether vacated the premises, though I’ve needed to use a nose spray only once so far. Several friends, one of them a physician, have suggested that the main factor is not Nancy's kidney but the anti-rejection medication I'm taking.

Patricia Burton in Canada put it this way: "I just checked out your latest kidney story, and I think there is an explanation for the lack of sneezes. The effects of allergies are really attacks by your immune system on something it considers an intruder (like pollen). In severe allergies, it goes overboard and sometimes can kill the person it's trying to protect (like kids severely allergic to peanuts). I know this from arthritis, which is also an auto-immune disease: for unknown reasons your system starts to attack and erode your joints. In severe cases they prescribe the same kinds of drugs as are used for anti-rejection purposes: anti-inflammatories and the like. So maybe your immune system is not bothering with pollen any more but is concentrating on protecting you without rejecting the kidney. Such a balance is in itself miraculous. That's my theeeeeeeeeeeeory anyway, but I ain't no doctah."

Our physician friend, Hans van der Deure, suggests my thanks may especially go to a drug called Prednisolon. As I’ve lately reduced the amount of Prednisolon I'm taking, this may explain why these last few days have found me a degree more vulnerable to pollens in the air. Happily, the condition is much less problematic this year than it has been in a long, long time.

Other news: I was back at the AMC this morning for blood and urine tests. Dr Bemelman called a little while ago with good news re the results: normal renal function, creatinine level 98, no protein or glucose in the urine, indeed all negative indications of any kind.

Off to Rome: We’re now gearing up for our first post-dialysis vacation. (In our absence, Anne will be taking care of Lorraine.) Wednesday morning we fly to Rome where we’ll be staying for two weeks in a hospice -- Domus Nova Bethlem -- run by a community of nuns, Suore Bambino Gesu (Sisters of the Child Jesus). During most of those days, we’ll be part of a pilgrimage arranged by the Thomas Merton Society of Canada, the same group with which we visited Prades in the south of France two years. The focus this time is on visiting churches where one finds the ancient mosaic icons that so profoundly impressed Merton during his stay in Rome when he was eighteen, soon after his father’s death. (For more about Merton and icons, you might look at this essay: “Thomas Merton’s Journey to the Undivided Church” -- http://incommunion.org/forest-flier/jimsessays/mertons-journey-to-the-undivided-church/.)

(photo: pollen under high magnification)

One More Thing

Every now and then it seems to me that Nancy and I have said all that can possibly be said about the kidney transplant last Fall, only to realize there is One More Thing.

The One More Thing today is something that hasn’t happened so far this year: there has been no daily assault of hay fever.

A few weeks ago, when I was at the nearby pharmacy to pick up a fresh supply of anti-rejection drugs, I noticed that hay fever medications were very much on display and realized that any minute now I would be urgently in need of the nose spay that for years (how many I cannot recall -- 10? 15?) has helped me get through the waves of pollen that warm weather sets lose. I sensibly bought a small bottle of Prevalin.

Anyone reading this who suffers from hay fever needs no account of how unpleasant, at time exhausting, hay fever is. It’s no wonder that summer news reports often include the latest update about pollen levels.

Perhaps because we’re having such an early outbreak of summer this year in Holland, with cloudless skies and high temperatures, Dutch news reports in recent days have indicated especially high pollen levels.

But this year I have -- so far, fingers crossed -- needed not one application of the recently purchased nose spray.

The only explanation that occurs to me and Nancy is that for some mysterious reason, my kidney illness had considerable impact on my respiratory system. The decline of my kidneys may have begun much earlier than I had imagined. Perhaps hay fever was, in my case, the first indication of that event. But who would have thought?

This is not the only change in my health that followed the transplant. The day after the operation, I was amazed to discover on waking up that there was no longer a desperate need to clear my head or lungs -- my “nuclear sneezes,” as Nancy called them. No more need for nose drops before going to sleep. No more daily energy dips with the nonnegotiable need for a nap that such dips often occasioned...

I had no idea how much other seemingly autonomous systems in the human body are profoundly interconnected.

(See the more recent posting dated 26 May 2008 for an update on this topic.)

[Photo: Small flowers as seen earlier today in the park at the end of the street we live on.]