Saturday, November 1, 2008

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.

Tuesday, July 1, 2008

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.]

Thursday, June 19, 2008

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/

* * *
Photo: a view of the exterior of Santa Sabina.
* * *

Monday, May 26, 2008

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)

Wednesday, May 7, 2008

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.]

Monday, May 5, 2008

Saying Yes


In my opinion, the best writing for this journal have been Nancy’s entries, especially those about the inner struggle that went into her deciding to be a kidney donor. Together we’ve edited these extracts from earlier postings for the spring issue of In Communion, the quarterly journal of the Orthodox Peace Fellowship. It seems worth adding them as a sequential unit to our kidney blog.

Jim

Note: The photo is the first sonogram of Nancy's kidney after the transplant.


* * *

Saying Yes

October 24: What goes into making a decision like this, to offer a vital organ to someone?

It took me a long time. Several years ago, when Jim first learned that dialysis was in his future, the idea of a kidney transplant didn’t really hit me. Each time he went to the hospital for tests, we were apprehensive, then relieved to hear that his kidneys were still on the positive side. Then about twenty-one months ago the doctor told Jim he had crossed the line. Dialysis began the next day. From that day onward, Jim was at the local hospital three times a week for three-hour sessions of dialysis.

At first I reasoned that I couldn’t even begin to consider myself a possible donor because, self-employed people that we are, we simply couldn’t afford for me to be unable to work for what might be an extended period. In my darker moments, I imagined the possibility of being bedridden for months, weakened by the loss of the kidney, unable to do any translation work.

In May of 2006, a Canadian woman we had met at a conference amazed us with the offer to donate a kidney to Jim. We were touched and thrilled. She made contact with the transplant people at our hospital in Amsterdam, and they approved her offer. But some months later other factors in her life made it impossible for her to go through with it.

At that point I began to rethink my hesitations. Doing a lot of internet investigation, I learned that kidney donation is only very rarely debilitating. In fact it was more than likely that I wouldn’t be out of commission for long.

Such research is helpful and the internet makes it easy. But research isn’t the same thing as saying yes. You have to reach a certain point when you sit down, open your mouth, and say the words, “I want to donate a kidney to you.”

Recently people have told me how brave I’m being, but believe me, the bravest part of this whole process is just saying those words, getting yourself to that point where you overcome all your excuses and fears.

I kept thinking of Frodo in The Lord of the Rings, who finally makes the decision to carry the ring in order to destroy it in Mount Doom. He must make this decision on his own, and when he finally says, “I’ll carry the ring,” he becomes the organizing principle for the entire story.

I have always believed that Tolkien was very deliberate in naming Frodo, and that his name could easily fit into the long etymological entry for the word “free” in the Oxford English Dictionary. Frodo – one who acts out of freedom.

Freedom doesn’t mean doing whatever you feel like if it’s in your interest, because sometimes you do things that you think are in your interest only to discover later on that you did them under some kind of compulsion – peer group pressure, fear of rejection, fear of loss. Acting under compulsion isn’t freedom. But acting out of love, sometimes doing something that’s downright dangerous, is what freedom truly is. (Interestingly enough, the word “free” and the word “beloved” and “friend” are related, as the Oxford English Dictionary makes clear.)

So I said yes. And when I did, I suddenly felt as if all the winds were blowing in the right direction, as if I had made a free decision that was somehow in line with a kind of cosmic truth. I realized that for all the months that I had been saying I couldn’t donate a kidney due to economic worries, I had made myself responsible for a kind of self-wrought logical argument that had to be constantly reinforced with my own insistence in order to stay in place. But the yes floated freely. The yes was borne up by something beyond me and my own logical arguments.

This is not to say that the coming days will be easy or that I feel confident and fearless. I’m still apprehensive. When I think about the operation, now only a week away, I feel my heart beating faster and my breathing becoming shallower. But I wouldn’t go back on this decision for anything in the world.

October 29: Yesterday, directly after the Liturgy, Fr. Sergei anointed us in preparation for the surgery just two days away. The anointing reminded me of our marriage in the church, a similar sense of standing in a zone of pure grace.

November 3: Yesterday – two days after the kidney transplant – was our 25th anniversary, Jim’s 66th birthday.

Jim is going great guns. He was doing e-mail the day after the operation.

In the evening, Dan, Wendy, Cait and Bj√∂rn came to celebrate both the anniversaries plus the transplant. Having just decorated it, they brought me by wheel-chair down to Jim’s room. Dan took pictures and Jim showed a sonogram of his new (my old) kidney. All the indications are that the transplant was a complete success. Jim’s godson Silouan came, too, with Leonidas chocolates to pass around. Wendy brought a huge fruit basket. We’ve never had a party quite like this before!

Now that I can walk, the nurse said I would be able to go home tomorrow.

November 6: The transplant was a week ago today. I’m not yet up to spending a lot of time behind the computer, but I’m home. The plan is to veg happily and watch movies with the kids, which I think I’ll be able to stand for about a week.

November 10: It’s ten days after the operation. I’m finally beginning to feel enough energy to write. What I hadn’t realized – and should have, of course – is that along with my kidney Jim now has truckloads of energy, whereas I have to be very conservative about everything I do so I don’t wear myself out. My operation took twice as long as Jim’s, and recovery takes longer. In fact I don’t mind gliding around the house in slow motion. I had planned beforehand to take all of November off, so I don’t feel compelled to get back to work. I’m deep into the Harry Potter novels, which I’d never been able to read until now.

The post-surgery pain is over. I can easily get in and out of bed, up and down stairs. It no longer hurts to laugh or cough or sneeze. If I lift a frying pan, I can feel a kind of pressure in the wound area, but no pain. But moving around too much makes me feel a little dizzy.

My project now is to recover my strength and to try to grasp what I’ve done. The spiritual, psychological and physical hurdle of deciding to donate a kidney – and then actually doing it – is something that requires an enormous effort. Maybe that’s also contributing to the fatigue. I never had any doubts before the operation, but I remember a lot of anxiety. I also remember telling myself, “You’ll be glad you did this, and if you don’t you’ll kick yourself forever.” The night before we left for Amsterdam, I jokingly said to Jim, “Me and my big mouth,” but that’s really it – me and my big mouth. When I see him so glowing with energy, and not troubled by the terrible morning coughs that used to exhaust him, “me and my big mouth” takes on a whole different meaning.

November 24: Yesterday we celebrated Thanksgiving. There were ten of us around the table. It was glorious. I wasn’t sure we’d be able to manage such a feast this year, so soon after the transplant. I’m not supposed to carry anything heavy, which includes the turkey, and I’m not supposed to overexert myself. But nobody wanted to skip it, especially not this year when we’ve just come through such an intense family experience and everyone has so much to be thankful for. Cait took a day off work and organized the dinner, Anne picked up the turkey from the butcher, and everybody pitched in with the cooking and clean-up.

My mother said grace. It was hard for her to get through the tears. We loaded up our plates and sat around the living room together. Dan kept everyone laughing, as usual, and Kylie read us a Maori children’s story.

Jim told me later he has never in his life felt such a prolonged and intense sense of gratitude as he had since the transplant.

I’m grateful he’s feeling so well, grateful to all the kids for their amazing support and help all through this, grateful to the medical community both in Amsterdam and Alkmaar, for their constant care, grateful to Dr. Idu (our surgeon, whose skill is something we’ll take with us all our lives), to our friends for their cards, e-mails, phone calls and visits, to the church, both in Amsterdam and all over the world, for praying for us, for Fr. Sergei and Fr. Mel for bringing us Holy Communion, and for my translation clients who have been so patient during all this. But mostly I’m grateful to the mysterious God who gave me the opportunity to give this gift. It was the most difficult thing I have ever been called to do, and it’s almost as if my whole life had served as a period of preparation.

I am daily discovering how the transplant is affecting my sense of who I am and where I’m going. It is immensely humbling.

December 3: At last yesterday we were able to return to church. The welcome was remarkable, even from people whom we had never had occasion to speak with in the past (keep in mind that in recent years ours has become a large parish, with several hundred people present each Sunday). One of the women who speaks only Russian embraced us and, with many joyful exclamations, spoke to us at length. We understood hardly a word, but felt showered in love. An Eritrean woman who also speaks very little Dutch did the same in her native language.

December 12: It’s six weeks since the transplant. Most of the time I don’t even think about it any more. I can’t feel a thing, and the periods of fatigue have passed.

Last Wednesday we went into Amsterdam to attend our daughter Wendy’s graduation from the University of Amsterdam, where she received her Master’s Degree with glowing praise for a thesis on George Orwell. The celebration went on until late at night. We got home at midnight. I don’t think we would have been any less tired if we hadn’t had the transplant.

I’m back at work. I’ve alerted my translation clients that all is well, and the assignments have started to come in.

Life goes on. The big event, which I had been awaiting with quite some apprehension, is passed. All is well. Even the scars are barely visible.

And yet…

And yet there was that thing I did. There was that yes. There was that “fiat.”

When we returned to church the Sunday before last, it happened to be a Sunday with a guest priest assisting in the sanctuary, Fr. Stephen Headley, archpriest of the Russian Orthodox church in Vezeley, France. He preached a sermon on the Mother of God, and he told us that her life is the model of how we should live out the gospel. “Fiat” is the Latin translation of what she said at the Annunciation when the angel Gabriel came to her – let it be done according to your word. She was not a deus ex machina, handily inserted at the right moment to make sure the prophecies were fulfilled. No one said a word to her about prophecies. Gabriel simply explained the situation to her, and she said yes.

I spent many hours of my recovery time reading all seven of the Harry Potter books. One of the main themes is the futility of prophecies. In her creation of a world of witches and wizards, Rowling wanted to make it clear that she was not interested in having her plot hinge on the magical fulfillment of a prophecy. She has little patience with fortune-telling. The one teacher at Hogwarts School of Wizardry and Witchcraft who is responsible for teaching the prophetic arts is depicted as a well-meaning but ridiculous fraud whom no one takes seriously. In the end, Harry is not the victim of a prophecy but the hero of his own freely made decision to act out of love.

Before the transplant, during the early stages of the selection process when I was still undergoing test after test to see if I was a worthy donor candidate, I was asked to meet with the hospital social worker. We talked for about a half hour, maybe longer, and basically what she wanted to know was whether I was being coerced or guilt-tripped into offering my kidney. Donations made under pressure are not accepted. Only those who offer their kidney freely can get past the AMC social worker. This is as it should be.

After having said her yes, the Mother of God – as St. Luke relates it – sings a hymn of thanksgiving, the Magnificat. “My soul magnifies the Lord, and my spirit rejoices in God my Savior.”

What is she giving thanks for? For the fact that “henceforth all generations will call me blessed,” that her future reputation is secured? For having been chosen to be the Birthgiver of the Savior, for having won a cosmic sweepstakes? Or was she thankful for having been given the opportunity to make the decision in the first place, thankful for having been so fully challenged, thankful that God drew forth from her the full strength of her humanness, thankful that God put her in a place where she was required to fight her fears and to make a decision that was not based on what her friends might do, or what her parents might want, or what “common sense” informed by popular culture might instruct. Her yes was uttered from a deep trust that God would be with her, that her will and God’s will were aligned. This is really beyond obedience, because she didn’t surrender her will to God. She was not a victim of some almighty and unavoidable power. She decided to sing in God’s key, as it were, because she knew that it was the key of truth and love.

When you sing in that key, even if only for a moment, things can never be the same. That’s what I feel right now, even as the scars are fading.

* * *

Thursday, April 24, 2008

Lots to celebrate


Following up on the entry made three days ago, let me summarize what I learned earlier today from Dr. Frederike Bemelman, a kidney specialist at the AMC.

The main item was more detail about the results of the kidney biopsy done last week: there is no indication of any degree of rejection; no toxicity (a possible consequence of using Neoral, one of the anti-rejection medications I’ve been taking); and no problems with the filters of the transplanted kidney.

Other results of recent tests: no indication of diabetes (those with kidney illness are more at risk of diabetes); creatinine level good (97); cholesterol okay (5.5); LDL level okay (3.2); liver function excellent; hemoglobin very good (8.5); and, finally, no warning signs in my urine (no trace of sugar, protein or abnormal cells ).

In brief, lots to celebrate!

One consequence of the various tests is that my medication can be changed. Instead of Neoral, I’ll switch to a new anti-rejection drug, Certican (Everolimus). At the same time, I’ll stop taking Myfortic, another anti-rejection drug that I’ve been on since the transplant. About a quarter of the patients using Certican experience some side effects the first few weeks, such as skin rash and slightly swollen feet. (If I am one such patient and negative side effects persist, I’ll be switched back to Neoral.) The medication changeover will start a week from Saturday. In mid-June I’m due back at the AMC for a checkup and the usual blood and urine tests.

This journal hasn’t been used to record much detail about medication, but on this one occasion it seems worth saying a little about this aspect of living with a transplanted kidney. It’s likely that the day is coming when other solutions will be found that will no long require a lifelong regimen of drugs for those who have organ transplants, but for now that’s not the case.

I made at stab at saying how grateful I was for the outstanding work she and her colleagues have done for me and Nancy, but tears prevented me from getting very far. Finally all I could do was kiss Dr. Bemelman on the cheek, a surprise for both of us.

Note: Instead of a photo, I’m posting with this the latest kidney-related cartoon from The New Yorker. A real-estate agent is telling prospective buyers of a house that there is one additional selling point. The present owners are “willing to throw in their kidneys.”

Monday, April 21, 2008

"Nothing to worry about..."


News for this journal doesn’t come thick and fast at this point. It’s now three weeks since the last entry.

In ten days it will be exactly half a year since one of Nancy’s kidneys migrated to my body. Six months is a time, at least in Dutch medical practice, when a major evaluation of the transplant is in order.

One element of the process is a biopsy. But I had some doubts about this, having heard that a biopsy can cause some degree of damage to the organ being checked. As things seemed clearly to be going so well with the transplant, was a biopsy really needed, given that slight risk? I decided before agreeing to it to put my hesitations in writing.

I quickly got the attached response from one of the AMC kidney physicians, Dr. Frederike Bemelman:

“The biopsy is the most sensitive readout telling how your transplant is doing: We can judge your transplant for having a light form of rejection, which cannot be diagnosed either in your blood or urine. We can see whether your transplant is being harmed by the medication you are now taking. If your transplant looks good, we plan to taper the immune suppression medication, which would be a direct advantage for your whole body.

“As for your concerns about the procedure, taking a transplant biopsy is quite easy. The transplant is positioned much more superficially than native kidneys. It can easily be done at the bedside, and in renal patients is often more easy than drawing blood. The complication rate of the procedure is less than 1 in a 1000.

“In other academic medical centers in the Netherlands, such as in Leiden and Groningen, a six-month transplant biopsy is a routine procedure done with all transplant patients. The advantage of the information from the biopsy is considered to outweigh by far the annoyance of the biopsy.”

This was helpful information. Without further hesitation I agreed, and the biopsy was done six days ago, last Tuesday. It meant a long day at the hospital because there is the slight danger that bleeding might occur.

A scan was made -- see the above photo. Using it, Dr Bemelman was able to draw an outline of the kidney on my abdomen and choose the best point of entry for the procedure, meanwhile telling me stories of her two years as a student living in Oxford.

All went well -- no complications, no bleeding, just a quiet day of reading with a hospital breakfast and lunch thrown in. At the end of the day supper was also offered, but -- now free to leave -- I preferred to hasten back to Alkmaar.

But what were the results of the biopsy? Once it was done, I was very much hoping to learn that there is no indication of a “slight degree of rejection.”

Well, now comes the headline:

In the hospital today for several hours of blood tests, the nurse who was helping me told me she had asked about the biopsy and was told: "He has nothing to worry about."

Alleluia! This really made my day.

I will get more detail about the biopsy and other recent tests when I meet with Dr Bemelman three days from now.

Monday, March 31, 2008

What do we mean when we speak of God?


I had a letter from a friend who confessed he was “annoyed at the Almighty ” because a person who had offered to donate a kidney was found, due to one of the many tests made before a donation can be okayed, to have a medical condition that precludes giving up one of her kidneys.

This letter promoted me to think once again about what we mean when we speak of God. What, in a particular person’s use of the word, is he/she talking about?

This has been on my mind for nearly half a century, since I read Maxim Gorki’s memoir of his early years, Childhood, in which the reader hears his vivid account of his grandparents in prayer in the icon corners of their adjacent rooms.

We find grandfather praying to a God whose everlasting work it is to punish people, a God who welcomes all updates that come his way regarding who is in need of punishing and appreciates advice about what form that punishment might take. Grandfather’s God is more the deity of hell than of heaven.

Meanwhile grandmother’s prayer reveals her as a person whose God is mercy beyond mercy, though she is alarmed enough by her husband’s volcanic god to think she may need to pray that God will please ignore her husband’s advice. Thus she sometimes brings into her prayers an explanation of what prompted this or that person to behave badly.

As I think about the donor who in the end can’t make the donation she wanted to, I find God in the midst of the prospective donor’s act of readiness to give away part of her body for the well-being of another. That in the end it turns out there is a medical reason why this action would not be prudent is not, for me, the heart of the story nor a revelation of the capriciousness of God, a creator who toys with us as cats toy with mice and birds before administering the fatal bite.

Neither have I an attraction to another popular image of God -- God the Divine Baby-Sitter, whose job it is to keep us from driving off the edge of road. For better and (not or) for worse, we bear the awful weight of having to hit the brakes ourselves. Often we fail to do so, and the results can be truly catastrophic.

Another way of putting it: God calls us to be peacemakers but never forces anyone to be peaceful.

(The photo for this posting is a stone carving of Christ with Adam found on the ceiling of the cathedral at Chartres. Double-click to see it in higher resolution.)

Saturday, March 22, 2008

Biking again


We haven’t done any recent postings about Nancy’s recovery from her playing the role of Magnet Lady last month, and being such a powerful magnet that she made a car collide with her, but just two days ago she was on her bike again for the first time since the accident.

She has reached the point of being able to walk without worrying that, if she’s not careful, her right knee might “pop out.” This means that the bands that are part of the knee’s complex architecture have tightened up nicely.

Re the kidney-transplant: One of the surprising things has been how various comparatively minor health issues that I thought were unrelated to my kidney illness have cleared up since the transplant. I learned about the latest as result of my semi-annual dental check-up this week, the first since the transplant. Our dentist, Mario Voogt, took one look at my teeth and was astonished. “Your gums are really in better shape! Much firmer!” The only new factor in my life that accounts for the improvement is the kidney transplant.

(Photo: Two young women on one bike, one steering, the other peddling, seen as I was crossing the Canadaplein -- Canada Square -- adjacent to Alkmaar’s cathedral. Double click on the image to enlarge.)

Wednesday, March 19, 2008

on the road about a hundred years


Nancy writes: "This fire truck came zooming down the Kanisstraat this morning, contained in a large box mailed to us from California by our brother-in-law, Charles Berrard, who had found it while clearing out my parents’ former house in Pacifica. Boy, does this bring back memories. My grandparents were Dutch immigrants, unlettered Ellis Island immigrants. My grandfather worked in Ridgewood, New Jersey, as an odd-job man, and one of his customers had given him this fire truck. It must be a hundred years old at least. They kept the fire truck in their basement, next to the coal chute. It was the only time I've ever seen a house that still had coal in it. I remember thinking that it was a very old toy when I was little, 50 years ago. I remember playing with it in my grandparent's house in Ridgewood. It had belonged to my father when he was a boy."

Monday, March 10, 2008

Saying "thank you" with an icon


Yesterday was an important day in our kidney transplant saga -- a day for saying “thank you.” We did this by giving a newly-painted icon to our parish, St. Nicholas of Myra Russian Orthodox Church in Amsterdam, a community which in so many ways gave us support through the long period of my kidney illness. On the day of the actual transplant, the church organized a special service of prayer.

The icon is of four saints, all of whom died in Nazi concentration camps toward the end of World War II. They were involved in a work of dangerous hospitality during the occupation of Paris. They saved the lives of many people, especially Jews. How many were rescued, no one knows, but it is at least a number in the hundreds.

In the photo you see our rector, Fr. Sergei Ovsiannikov, presenting the icon after the liturgy. St. Maria Skobtsova, who founded the house of hospitality and is the best known of the four, stands on the left. On the right is Fr. Dimitri Klepinin, the priest who was her main partner in the community’s work. Also note, on the raised edge of the icon, the smaller figures of two other co-workers who also became martyrs: St. Ilya Fundaminsky, on the left, and St. George Skobtsov, on the right.

The icon is the work of John Reves, an American living in Austria. John has been our guest the last few days, having come to Holland to hand deliver the panel and to be present for its reception by the parish.

For detailed photos of the icon, see those just added to this folder of Mother Maria-related images on our Flick site:

http://www.flickr.com/photos/jimforest/sets/72157594152181792/

For an essay (“Saint of the Open Door”) summarizing the work started by Mother Maria Skobtsova, see:

http://incommunion.org/articles/resources/st-maria-skobtsova/saint-of-the-open-door


For links to other texts by and about her and this amazing community, see this page:

http://incommunion.org/contents/mother-maria


It happens that one of the grandchildren of St. Dimitri Klepinin, Tania, is married to one of the clergy of our parish, Deacon Hildo. Tania and Hildo have recently had their first child, named Maria, after Mother Maria Skobtsova.

The thanks we expressed in our church yesterday is not only to the members of our parish but to everyone who in some way, through prayer or caring thoughts or practical assistance, have helped carry Nancy and me through these last few years and especially through the transplant itself. I hope in time we can make a card of the icon and send it to all the people we want to thank.

(Double-click on the photo to see it enlarged.)

Wednesday, March 5, 2008

A Donor Match Over Small Talk and Coffee


It is always encouraging to discover new kidney donor stories. Here’s one that was in yesterday's New York Times [Photo: Annamarie Ausnes, left, will receive a kidney from Sandie Andersen, who works at the Starbucks coffee shop that Ms. Ausnes frequents.]

* * *

New York Times / www.nytimes.com / March 4, 2008

http://www.nytimes.com/2008/03/04/us/04barista.html?ex=1205298000&en=274e647622188980&ei=5070&emc=eta1

A Donor Match Over Small Talk and Coffee

By William Yardley

Tacoma, Wash. — Annamarie Ausnes is known for holding up the line at her favorite Starbucks here, carefully counting out her coins to pay for her "short drip, double-cupped" daily jolt. Over the years, Sandie Andersen, a friendly barista behind the counter, might have rolled her eyes once or twice but she has also taken these morning moments to make conversation, to make friends.

"She reached over the counter and said, 'I'm a blood match,' " Ms. Ausnes said last week, recalling the conversation.

Ms. Andersen said, "We both stood there and bawled."

Turns out, Ms. Andersen had made Ms. Ausnes a special offer, off menu. On March 11, the two women are scheduled to go into surgery at Virginia Mason Medical Center in Seattle. If all goes well, when they come out Ms. Ausnes, 55, who has polycystic kidney disease, will be the new owner of Ms. Andersen's left kidney.

Ms. Andersen, 51, has worked at Starbucks for more than four years. She said she had taken the job for the good corporate health benefits, which her husband's job does not provide. Her husband, Jeff, did not realize his wife would also be providing health benefits.

"My husband said, 'Next time someone comes in and says they don't feel good, don't give away another body part,' " Ms. Andersen said.

Ms. Ausnes, an administrative assistant for student government at the University of Puget Sound, said she had been buying her morning coffee at this Starbucks, at North Proctor and 26th Streets, for three years. She has known for nearly two decades that she has a kidney disease, but her kidney function has declined significantly recently.

Last year, after tests showed that family members could not provide her with a transplant, it became clear that dialysis and a wait of some years for a donor were inevitable. Ms. Ausnes never mentioned this during her daily exchanges with Ms. Andersen.

"It looked like dialysis was coming close and I just said, 'Annamarie, you never know where a donor's going to come from,' " recalled Wanda Ryan, the transplant coordinator at Virginia Mason who is handling her case. " 'Keep telling people your story.' "

In November, not long after that conversation, Ms. Ausnes stopped into Starbucks as usual, but this time Ms. Andersen noticed that her customer was glum. Ms. Ausnes finally told her the news, and the response was instantaneous.

"I'm going to get tested," Ms. Andersen said.

And she did. Blood type O? Yes, a match. Negative cross-match under the microscope? Yes, perfect. The six elusive DNA markers? One of six was alike, not ideal, but good enough.

So there they were that morning last fall, crying over the counter while the coffee line grew longer.

Both women expect to be in the hospital for about a week then to be out of work for up to six weeks. Howard D. Schultz, the chief executive of Starbucks, called both women and told Ms. Andersen "how proud I am to have someone like you working for our company."

She joked about Mr. Schultz's recent, well-publicized emphasis on having employees make a "human connection" with customers.

Ms. Andersen, who has done missionary work in Mexico and helped dig mud out of houses in New Orleans after Hurricane Katrina, said this latest gesture should not be viewed as unusually magnanimous. People should give freely of themselves, she said, and they do more often than is noticed.

Ms. Ausnes will undergo regular monitoring and testing and will need to take medication regularly for the rest of her life to prevent her body from rejecting Ms. Andersen's kidney, according to Ms. Ryan, of the hospital. Ms. Andersen, who was interviewed extensively by the hospital to make sure she was physically and mentally stable, should be recovered in six months, charged only with keeping a slightly sharper eye on her basic health and diet.

Ms. Andersen said, "I asked my surgeon, 'Will I be able to snowboard afterward?' He said, 'Do you snowboard now?' I said, 'No, but I'm hoping to.' "

Monday, February 25, 2008

I can walk!


Take my word for it, donating a kidney is a thousand times easier than getting hit by a car -- less painful and much more gratifying. It’s nine days since I got clipped by a slow-moving vehicle while trying to defy traffic regulations and cross on a red light in Amsterdam. Jim has already described the accident in some detail. The first few days were pretty bad. I camped out on the living room couch for several days and could only get to the bathroom by swinging through the kitchen like Tarzan (this is the only time I’ve appreciated our tiny, narrow kitchen). Then came the dining room chair stage when I navigated by pushing a chair across the room, the way Dutch children learn to ice skate (back when we used to have ice). Then I moved on to a wooden cane. Today, for the first time, I walked from the bedroom to the upstairs bathroom without any assistance.

My knee is quite unstable, and until today I couldn’t trust it to hold me up. It sort of slipped out of the socket and splayed outwards, a weird feeling but painless. When I got up this morning I realized the knee felt stronger, and that I could actually walk on it. I went to the doctor this morning, who told me she didn’t think there was any tearing and that the knee was healing. Good news. Wednesday I start physical therapy.


I’m taking a strong painkiller, which forces me to nap a couple of times a day. I’ve had to simply stop doing everything I normally do, sit back and heal. Jim has been wonderful. He’s actually a very good cook, but I tended to monopolize the kitchen. This may change. I think I’ve been taking on way too much, and it may have taken a slow-moving car to get me to ponder the consequences of this. If it hadn’t been the car it would have been something else -- illness, perhaps.

Life is more than doing your best, or striving for excellence, or even being good. It’s not just a one-man operation. It’s about building community and friendships, sharing chores, learning how to delegate, admitting shortcomings and areas of weakness, and understanding there are some things you just can’t do yourself. In short, it’s all about learning humility. Some people know this instinctively. Others have to step in front of a car to find it out.

(The photo: a bouquet of tulips sent by our parish council.)

Friday, February 22, 2008

upward bound


It’s going better with Nancy. Last night, for the first time since Saturday, she was able to climb the stairs -- very carefully, operating herself like a crane lifting fragile cargo -- and was rewarded by being able to sleep in our bed instead of downstairs on the couch. (This means I’m no longer hauling our guest mattress downstairs each night and camping out on the living room floor.)

Her knee was significantly less swollen this morning and the bruising much less in evidence. The mummy-like leg wrapping she had been given at the hospital on Saturday has now been replaced by a trim elasticized bandage, a type mainly meant for people with sports injuries, that I found at the local pharmacy.

After a few days of worry about long-term problems walking, we are daring to hope that her knee will heal without special treatment or surgery

She still tires easily.

Since late yesterday afternoon, she is on prescription pain medication that is working quite well.

For all those who have been keeping Nancy in their prayers, our thanks. If human beings had sails, prayer would be the wind.

Thursday, February 21, 2008

Slowly mending


It is not entirely a play on words to say that we are hard-hit. If a slow moving car can disrupt one’s life so significantly, what must it be like to have a more serious accident? Nancy’s main worry at present is that, although the x-rays taken Saturday showed no broken bones, damage may have been done to the soft tissues, something that can only be spotted with an MRI. She has an appointment to see our GP on Monday morning, by which times she hopes that walking will not be so painful. Unless things have taken a turn for the better, I expect he will refer her to the local hospital for a closer look at her knee.

Nancy wrote to a friend last night: “This morning Jim helped me take off the pressure bandage to take a much anticipated shower. We were startled to see how wretched my poor old knee looks -- all swollen, like a lumpy grapefruit, black and blue up and down the leg with a big nasty patch at the hip. As the pain level is pretty high, I'm switching from paracetamol to Aleve in hopes that this will help. I hate medication, but I also hate pain. It's much worse than the kidney transplant -- that was a piece of cake.”

The Aleve really helped, but only if she took more than the recommended dosage. This morning Nancy contacted our GP to see if he would prescribe something more effective.

As Nancy’s office is currently inaccessible because of the staircase that stands in the way, yesterday she and I set up a laptop computer for her with all the files and programs she needs. She is hoping today to work on a children’s book she is translating into English for a Dutch publisher.

There is truly such a thing as laugh therapy. Nancy has been hugely enjoying an anthology of short essays by S.J. Perelman, most of them originally published in The New Yorker, and also Bill Bryson’s memoir of growing up in the fifties, The Life and Times of the Thunderbolt Kid.

Last night, at Anne's recommendation, we watched an excellent documentary called "The Architect" about the strange life of the American architect Louis Kahn. It was made by his son. Kahn had three parallel families who didn't know each other, and after his death his son decided to find out about his father's life. Very moving.

Spring is hard at work just outside our windows with its own news of healing. Crosuses and snow-drops are plentiful.

Sunday, February 17, 2008

The day after


Nancy has been home a full day and little by little is mending. For the time being, she has to live downstairs. Climbing stairs is currently not an option. She walks with difficulty and pain, doing so only to go to the bathroom in the back of the house. Every move she makes requires careful planning. To make it easier, I’ve placed a few wooden chairs in spots where Nancy can use them for support. Her blood pressure is low, though better than it was yesterday. She tires quickly and then has to nap; in the photo you see after waking up from a nap late this afternoon. She counts it as a major achievement that earlier today she was able to feed our cat, Beckett, while passing through the kitchen.

If one must get hit by a car, the results could have been far worse. No broken bones. No concussion. No damage to her kidney. The main impact area was her right knee. The only bleeding was from a wound in the back of her head.

I'm taking a crash course in home nursing. I would give myself mixed grades. At breakfast I managed to spill the freshly-squeezed orange juice (one of my normal morning chores) all over the living room carpet. On the other hand lunch and supper went well. I’ve also washed the blood off the canvas bag she was carrying -- it hasn’t been this clean in years -- and also off the wool sweater she was wearing.

Nancy has done a good deal of reading these past 24 hours, mainly the novel, Pillars of the Earth, but also an anthology of humorous pieces written by S.J. Perelman. It was a joy to hear her laughing.

She arranged this accident, several few members of our parish have suggested, in order not to have to attend the parish meeting that followed the liturgy today. Nonetheless she was elected secretary of the new parish council, to be installed in March.

Saturday, February 16, 2008

An unexpected visit to the hospital


It has been in our thoughts in recent days that it was about time -- about a hundred days after the transplant -- to add an entry to our kidney journal.

What had especially been in both Nancy’s thoughts and mine was a growing awareness that, since Nancy’s gift of a kidney, giving comes more easily than in the past. While neither of us are the tight-fisted sort, still -- self-employed people that we are, with income being far from predicable month to month -- we tend to watch expenses fairly carefully and sometimes think long and hard about gifts and donations to be made. Now we find it much easier making gifts.

Lesson: Once you have donated a kidney, or received such a gift, other donations come much easier.

There you have, in brief, what might have been a longer journal entry, but I make it brief to add the day’s main domestic headline -- that Nancy was hit by a car just after noon today when on her way to a lunch in Amsterdam with other translators. Crossing a street, she saw a green light on the far side of the street but failed to notice a red light for the lane closer to her. She stepped out into the street and was hit by a slow moving car making a turn. Knocked down, her right knee and the back of her head took most of the impact.

The distressed driver and a number of bystanders immediately did all they could to help her. They were really wonderful, Nancy reports. Should you ever want to get hit by a car, she recommends you do it in Amsterdam. Friendly strangers will rush to your assistance.

One of them called for an ambulance. Soon after, she was brought to the emergency section of the nearby Lucas Andreas Hospital.

The head wound, though bloody, was quickly closed -- no stitches were needed. Nancy’s gray air now includes a punkish pale purple halo.

After two x-rays were made, Nancy was given the good news that, though the right knee was painful, bruised and swollen, no bones had been broken. Her right knee was bandaged.

Nancy’s main worry was that her one kidney might have been injured. She was hugely relieved when a urine test showed no trace of bleeding or other indication of damage. (On Monday we’ll contact the kidney staff at the AMC to see if they want to do any further testing.)

Luckily, Nancy had our mobile phone with her. As soon as she was able, she called me. Dan happened to be at our house just then. As soon as I left for Amsterdam, he made calls to the rest of the family, at least those here in Holland. As a result, by the time I got to the hospital, Thom and his partner Kylie had already been there half an hour.

The worst part of the ordeal for Nancy was suddenly going into shock, something that happened just when she thought she was in the clear and had made a reassuring call to me. She found herself short of breath, covered with sweat, pale as a sheet, and shaking uncontrollably. Several staff in the emergency ward, immediately coming to her aid, found her blood pressure had plummeted. She was put in bed, covered with warm blankets, and given an IV. It took about half an hour for the trembling and sweating to stop.

About four hours after she had been admitted to the hospital, we returned to Alkmaar by taxi. Taking the train was not an option, as Nancy has difficulty taking even a single step, and will need help getting about for at least the next day or two. For the time being, she will be leading a downstairs life.

She is in good spirits, has talked to several people on the phone, taken a couple of naps, and is now reading a novel about life in twelfth-century England (The Pillars of the Earth).

Monday, January 28, 2008

Slaying the dragon

Like a pregnancy, three months is the magic number in kidney transplants. During the first three months after the operation, everybody stands around waiting to make sure that the transplant “takes.” The doctors are alert to any sign of rejection. If after three months the kidney is still behaving itself and shows no signs of quitting, the doctors -- and the donor and recipient -- breathe a sigh of relief.

On Thursday it will be three months since the operation. Today (Monday) I went for my first check-up with the transplant team at the AMC in the person of Sylvia ter Meulen, the head of the live transplant team. Sylvia is one of those people with a big smile who just oozes positive energy and enthusiasm, and when I told her I felt great and had not a single complaint she just glowed with happiness and satisfaction.

One interesting development that we discussed was this peculiar feeling of energy and good health I’ve noticed -- peculiar because not only do I feel normal, but I feel better than normal. I find myself coming up with new ideas: things I want to change, such as the logo of the business and the whole computer operating system I’m working on. I want to send out a mailing to my clients to thank them for their patient kindness during my convalescence and to let them know I’m fully recovered. I’ve volunteered to join the parish council again, and have agreed to become the church secretary. But I also feel more awake then ever. I feel more spring in my step. I feel less beaten down, less overwhelmed, less frustrated by a lack of time or energy. I feel more capable, stronger.

Jim recently told Sylvia about this at one of his bi-weekly check-ups, and she replied in an e-mail, “I'm glad Nancy is doing so well, though it doesn’t really surprise me. In fact, some studies (I believe in Sweden) even show that living kidney donors experience a better quality of life after donation!” I found a scholarly article on the internet about the quality of life of kidney donors (“Impact on living kidney donors: quality of life, self-image and family dynamics,” Nephrology Nursing Journal, Sept-Oct, 2005 by Patricia A. Fisher, Denise J. Kropp, Eileen A. Fleming), and several paragraphs stood out:

Quality of life issues have been studied in regard to living kidney donors. According to Ciszek, Paczek, and Rowinski (2003), kidney donors have been reported to have enhanced life quality and self-esteem. Other quality of life studies (Corley et al., 2000, Gouge et al., 1990) have also shown that donors were generally positive overall about donation, but that it did not enhance their overall quality of life.

This article is a report of a study that was conducted with a group of live kidney donors from Akron City Hospital in Ohio (all the surviving live donors whose donation had occurred since the transplant program there began in 1967 and who could be located, or 119 individuals). As a result of the study:

Sixty-two percent of the donors in this sample rated their current health as very good to excellent. The average standardized physical component summary scale score of the SF12 for this sample was 51.5 with a standard deviation of 7.3, which is slightly higher than the norm of the general U.S. population average score of 50.12 (Ware, Kosinski, & Keller, 1998). The majority of the participants (75%) reported not being limited at all in physical functions, but 9% reported that bodily pain interfered with their normal work quite a bit of the time. The average standardized mental health component summary scale score for this group of donors was 50.6 with a standard deviation of 9.21, which again is slightly above the U.S. general population norm of 50.04. Only one person reported feeling downhearted and blue all of the time, while 71% reported feeling this way little to none of the time.


Overall, donors were satisfied with their decision to donate. Ninety-one percent of the donors reported that if they could go back, knowing what they know now, they would make the same decision to donate. Even those that ranked the negative factors of the decision-making process as important reported that they would encourage another person to donate (r = -0.24, p = .039).

Individuals who decided to donate of his or her own free will were generally very satisfied with the decision to donate. The majority of donors felt a continued sense of closeness with their recipients as well as an enhanced happiness and self-esteem.

Sylvia echoed these sentiments in her talk with me today. She said donors generally begin valuing life and their own health more. This is quite true. I’m deeply grateful that I was healthy enough to give Jim my kidney, and I’ll never again take my health for granted. I’m relieved the whole thing is behind us and relieved it all turned out so well. I guess “self esteem” has something to do with it, although I don’t go around feeling like a hero. The stress is gone. Someone at church yesterday pointed out that I had made the ultimate sacrifice, that I had done all that could be done, and this knowledge must have some kind of impact. We know that stress has an enormous impact on physical well-being. In the year since I began being tested as a possible donor I’ve lost 7 kilos, or 15.4 pounds! I’ve gone down a whole size. So the reverse must also be true: the impact is just as enormous when the stress is gone.

But I also wonder if it also doesn’t have something to do with the triumph over fear and the decision to act out of freedom. I told Jim yesterday that it was like fighting a dragon and winning. I think the reason I don’t go around feeling like a hero is that I know how difficult it was to say yes and to overcome my fears, and I have no more illusions about my own weaknesses. I know that the next challenge that presents itself is going to demand a brand new decision, that the dragon is never really slain, and that the best you can do is to sharpen your dragon-slaying skills. It’s worth the effort.

Thursday, January 17, 2008

my first MRI


In the hospital in Amsterdam the day before yesterday, I had the strange experience of my first MRI. This means being inserted into a narrow tubular space inside a massive science-fiction-like machine that manages to look, in high resolution detail, at the inside of the body as if it were a fish bowl. This is done with focused magnetic impulses, apparently very powerful. It’s an amazingly noisy machine. I had imagined eery silence. Instead I felt like I was spending half an hour in a crawl space beneath a street that was being attacked by pneumatic drills. I was provided with a pair of earphones so that I might listen to what was described as "easy listening" music, but the music was audible only in those brief intervals when the pneumatic drills took a break.

The MRI scan was requested by one of my doctors several weeks ago when I was having a lot of pain where my hips are joined to my legs -- almost certainly a side effect of the anti-rejection medication I'm taking daily.

Since the MRI was scheduled, probably due to changes in medication, my legs are back to normal. I can bike again, and walk without giving it a second thought. No need of a walking stick.

The results of the scan? I may find out tomorrow when I have my next appointment at the AMC's out-patient clinic for kidney patients.

Saturday, January 5, 2008

A fireplace of welcome


The photo is a view of the reception counter of the kidney illness unit of the AMC’s Polyclinic (for out-patient care). It's a very familiar sight. During the first few weeks following the transplant I was here twice a week. Now it’s once every one or two weeks. Nor are the visits ever brief. I get to do a lot of reading while I await my turn. These last few weeks it has been Tolstoy’s War and Peace in the new translation done by Richard Pevear and Larissa Volokhonsky. (If you have never read it, now’s the time. I doubt there will ever be a better translation in English.)

The woman behind the counter on the right, Ruthline, is always a fireplace of welcome, not only eager to know how I’m doing but certain to ask about Nancy as well. She loves speaking English, so we almost always converse in that language. Checking my blood pressure a week ago in an adjacent room, the word “God” entered our conversation. “I thank God,” she said, “that things have gone so well for Nancy and you. I have been praying for you.” “Believe me,” I assured her, “we thank God every day.” “You believe in God?” she asked. “Oh, yes,” I told her. “Isn’t it sad,” she said, “that so many people don’t? How is that possible?” I suggested it might have less to do with God than with negative experiences people have of churches, or the negative church experiences of others they have heard or read about. Also, for some, belief in God is just not fashionable. “That must be it,” she said. “Maybe all those things.”

We started laughing. In fact I laughed so hard that she had to take my blood pressure again as she thought the laughter would have thrown the reading off.

I had thought that a journal about a kidney transplant would surely end not long after the transplant, assuming all went well. In fact the transplant seems to have been entirely successful, and yet, even two months later, an occasional update seems in order, if only to share the post-transplant side of the event, as the AMC’s kidney staff keeps a very sharp eye on how things are going with all their transplant patients, intensively so the first few months.

Tests, tests and more tests. Last week’s laboratory visit at the AMC required filling twelve small vials for twelve specific blood tests. Happily it was only four vials yesterday.

The numbers continue to be good. My kidney function, as computed yesterday, is 88 percent -- a good deal better than is generally found in people four years short of seventy. The maximum might be found in a young person in excellent health.

The latest reading of my creatinine level is 118. Compare that to over 900, as it was on October 30, the day before the transplant.

Another welcome sign: Eight days ago, I had to use a walking stick in getting to the hospital. It was slow going. My left leg had been troubling me for days, which doctors at the AMC assumed was a side effect of the anti-rejection medication I’m taking. Yesterday I was able to make the journey on my own two legs, nor had I used the walking stick at all throughout the past week. Perhaps this has to with the reduced dosage of Neoral, one of the medications they watch most carefully, or the increased calcium I’ve been taking lately, or simply my body adjusting to medication. Still, in order to have a better idea of how the joints and surrounding muscle and tissue look in the area where my legs meet my hips, an MRI is scheduled for January 15.

A note that has nothing to do with kidneys or hospitals: for Russian Orthodox parishes, it’s almost Christmas. As we’re on the “old calendar,” Christmas comes thirteen days later than it does for most other Christians. By this reckoning, tomorrow is Christmas Eve. All this can be a bit confusing for those not living in Russia or part of a Russian parish in the west, but it can have its advantages. In our case it means a two-tiered Christmas celebration -- the days of December 24th through the 26th a time for family events, then a liturgical Christmas mainly centered at our parish in Amsterdam.

Merry Christmas!