Wednesday, October 31, 2007
We've sent out a few e-mails to those on Jim's mailing list to keep everyone up to date on the surgery. Unfortunately some of the e-mail addresses were not entirely correct so the messages might not have gotten through to some of you. For this we apologize profusely!
Jim has now successfully received his third kidney and has been taken to the recovery room to sleep it off. All went well with the surgery; again no complications.
Nancy is back in her own little hospital room, feeling groggy but doing fine.
Once we've heard from the two patients we'll get back to you on their current status and possibilities for visiting for those who are so inclined.
Nancy is now out of surgery - no complications, everything went according to plan. She'll be groggy for a while, but should be on speaking terms tomorrow (and definitely Friday: Jim's birthday and their 25Th anniversary!!!)
Jim is now being wheeled into the anesthesiologists and will be fast asleep shortly. They should be all done in about 3,5 hours and we'll here from the hospital then. So I'll be posting again soon...
Tuesday, October 30, 2007
It’s 4 pm. Nancy and I arrived at the hospital about six and a half hours ago.
We’re in different sections -- me in the department for kidney transplants, Nancy in a nearby section for short-term surgery. We saw each other when we were together in the anesthesiology department earlier in the afternoon, but otherwise have mainly been in our respective rooms. I’ve had various tests (x-ray, ECG, blood, etc.) plus questions to answer (mainly having to do with medical history) and now await a final session of dialysis. The nurse I’ve seen the most of is a fellow cheese head, as people living in Alkmaar are called.
I have a wonderful view from my room -- huge sky, dramatic clouds, the Arena sports stadium in the distance looking like an immense flying saucer that had come to rest in the southeast of Amsterdam. All in all, the AMC (the Academic Medical Center) seems a nice place to be if one has to be in a hospital.
On the calendar of the Russian Orthodox Church, tomorrow is the feast of the Gospel author and physician, Saint Luke. Not bad timing for major surgery.
(photo: Nancy on the train en route to the AMC.)
Monday, October 29, 2007
Yesterday, at the end of the Liturgy, Fr Sergei Ovsiannikov announced to the parish that there would be a special prayer service at 11 a.m. on Wednesday for the kidney transplant. (As it happens, Nancy will be undergoing surgery at that hour.) Also, about an hour after the Liturgy, there was a short service of anointing the two of us -- several photos taken by Vlad Dobrovinski are posted here:
I don’t find it easy to write about the experience of being anointed in preparation for the transplant or being so intensely prayed for by the members of our parish. Short as it was, the anointing reminded me of our marriage in the church -- a similar sense of standing in a zone of pure grace.
Thursday, October 25, 2007
Today we got a card from our friend Seraphim Honeywell, lawyer by profession and also warden of the Orthodox parish in Oxford. On the front of the card was a reproduction of a full-page ad published in 1893 in The London Illustrated News promoting the sale of the Carbolic Smoke Ball, guaranteed to cure coughs, colds, catarrh, asthma, bronchitis, throat deafness, snoring, sore eyes, influenza, hay fever, headaches, croup, whooping cough and neuralgia. A hundred pound reward was offered to anyone who took the remedy and afterward contracted influenza. Testimonials were provided by such distinguished users as the Bishop of London (“The Carbolic Smoke Ball has benefitted me greatly.”) and a list was provided of aristocrats and other notables to whom the medicine had been supplied, including the Duke of Edinburgh and Alfred Lord Tennyson.
While there was no claim made that this excellent product also would cure kidney illness, one assumes any medicine so all-powerful as this could easily restore kidneys to mint condition.
Ah, if only we had known there was a non-surgical alternative!
Sadly, the Carbolic Smoke Ball Company was successfully sued by a user, Mrs. Carlill, who had contracted influenza. The company ended up going into liquidation.
Wednesday, October 24, 2007
What goes into making a decision like this, to offer a vital organ to someone?
It took me a long time. When Jim first learned from the doctor that dialysis was in his future, the idea of a kidney transplant didn’t really hit me. Each time he went to the doctor to get his levels tested we were apprehensive, then relieved to hear that he was still on the positive side. But finally the doctor told him he had crossed the line, and dialysis had to begin immediately. That was in January 2006.
At first I reasoned that I couldn’t even begin to consider myself a possible donor because I’m the principal breadwinner in the family, and we couldn’t afford it. I imagined myself bedridden for months, weakened by the loss of the kidney, unable to do any work of any kind. In May of 2006 we both attended a conference in France where we met a Canadian woman who said she was willing to donate a kidney to Jim. We were touched and thrilled, and the woman began to investigate the procedure. She even made contact with the transplant people at our hospital in Amsterdam, and they approved her offer (often these kinds of distant, non-family donors are not approved). But after a while it became clear that she was too busy to actually go through with it.
At that point I began to wonder if I could give it a try. I had been doing some internet investigation and had learned that kidney donation is not as debilitating as I had thought, and I wouldn’t be out of commission for all that long.
But 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 does not 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 is not 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 OED etymology also shows.)
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 out of economic considerations, 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 painless, or that I feel confident and fearless. I’m still very apprehensive, and when I think about the operation I feel my heart starting to beat faster and my breathing becoming shallower. But I wouldn’t go back on this decision for anything in the world.
Tuesday, October 23, 2007
Just a week from now we’ll have been in the hospital ten hours, been through a battery of tests, and be well primed for surgery the next day. It’s hard to take on board. Today, over lunch, Nancy read aloud a memo from the AMC full of detail about all that will be done both to donor and recipient -- not much of which one would regard as high on the list of things to do during a holiday but somehow we seemed to be in very good spirits as we made our way through the text sentence by sentence. (I had even managed, and Nancy as well, to sleep well last night, entirely without surgery-connected dreams.)
Mainly I find myself trying to clear the decks so that I can go to the hospital without being annoyed with tasks undone. The fall In Communion is finished -- the printed copies mailed out and the files for the web version sent to the web master, Michael Markwick, today. Nancy is now two-thirds of the way through proof-reading the revised edition of my Merton biography. The new text should be with Robert Ellsberg at Orbis in the next few days. I’ve also made a start on reading the galleys of the revised edition of Praying With Icons, also to be published next year. The original editions of both books are now more ten years old.
One complicating factor as we prepare for the events of next week is trying to work out Dutch government permission for Lorraine, Nancy’s 90-year-old mother, to reside in Holland. She has been with us about five months now, here in a six-month tourist visa. We’ve lately gotten a two-month extension, but the bureaucratic labors -- already costing many, many hours -- are far from over. One of the undone tasks is somehow to prove that Lorraine had only two children, Nancy and Doug (who died suddenly half a year ago). How does one prove such a thing? Unlike Holland, America has no national or even state-by-state birth register. There are special extra seals we need to get on certain official documents we already have. It all takes time, with no guarantee that in the end permission will be given. Until it is given, Lorraine isn’t eligible for Dutch health insurance and cannot even open a Dutch bank account.
Meanwhile she isn’t even certain that she wants to stay in Holland. It’s a lonely life in a strange culture. She has periods of painfully missing the US and its way of life.
Interesting. The stress we’re living with at the moment seem to have more to do with this aspect of our lives than with the upcoming operations!
Monday, October 22, 2007
This special moment recounted in the Book of Genesis was a much loved subject of Byzantine and medieval art. In churches, it is usually part of a cycle of images that begin with the creation of the cosmos and end with the expulsion of Adam and Eve from Paradise. In all the creation scenes, Christ is the key figure. Though not yet incarnate, we see him as the man he was to become. The Church Fathers saw the Second Person of the Holy Trinity as the one especially involved the work of bringing matter into existence and shaping it into the vast array of life forms, with Adam and then Eve at the pinnacle of created beings.
While I found this illumination an especially fine version, just about any of the images that have to do with Adam and Eve fascinate me. Among the Primary Stories of the human race, there are few more primary than this: what many of our ancestors imagined the first human beings to be like. Remarkable, they saw Eve's creation as coming later than Adam's. Her being called into being is the final great event in the creation narrative.
Such a story has almost nothing to do with what, these days, we think of as history. In fact we know very little about the first human beings. Much that we think we know is speculative. But the Adam and Eve story is profound. It stresses an original oneness in Adam and Eve, the two of them mysteriously one being until the body of Eve is drawn out of the body of Adam.
Was Eve made from one of Adam’s rib? So the most familiar English translation of Genesis has it, but other translators say in fact that the key Hebrew word means “side” -- thus Eve was one side of Adam. She is his other half. Thus Adam’s maleness is coincident with his separation from Eve and her femaleness.
There is an ancient Jewish commentary which responds to the question: Why was there only one Adam and only one Eve? The answer is so that no human being can regard himself or herself as being of higher descent than anyone else. The basic fact about all human beings is that we are all belong to exactly the same family tree.
At the same time there is the elusive but compelling memory that has haunted the human mind of a primordial Eden: a paradise in which there was no war, indeed no enmity. The first murder occurs only after Adam and Eve have been expelled from Eden.
For Nancy and me at this particular moment, this image of Adam and Eve has another level of meaning. We are on the verge of a different sort of physical opening of our bodies to one another. A kidney that was Nancy’s will, in nine days, be in my body. Somehow this image seems to foresee such two-way traffic between the sons of Adam and the daughters of Eve.
(Double-click on the image to see it in more detail. This blog entry has since been expanded into a short essay, "The Original Oneness of Adam and Eve."
Friday, October 19, 2007
"Nature red in tooth and claw," as Tennyson put it, and that's what we see shown here. Sitting on the garden table is Beckett, actually Anne's cat, about 7 years old and a glorious specimen of male felinity. He's been living with us for a year or more. Below is Valentine, an original inhabitant of our house, 16 + years, much smaller than Beckett but a tough old lady, always willing to give Beckett a run for his money and never willing to give up her territorial rights. Today she is no more.
This past Monday we had a "family meeting" at the Amsterdam hospital where the kidney transplant will take place on the 31st. Our three daughters -- Wendy, Caitlan and Anne -- were there, as was our priest, Fr. Sergei Osviannikov, and the head of the live kidney transplant team, Sylvia ter Meulen, held forth. She explained exactly what we could expect and how long the recover period might be. One thing she said was that when the transplant is over and Jim is home, he will be on non-rejection (immuno-suppressive) drugs to keep the new kidney from being rejected. This means he'll be vulnerable to all sorts of germs, viruses, etc. She also said that one thing we had to be wary of was cats.
It so happens that Valentine had suddenly started doing a lot of sneezing in recent weeks. I checked the internet and discovered that such sneezing could indicate a cat flu, which is highly contagious (to other cats) and could also affect humans. Concerned that she was spreading her nastiness all over the house, I made an appointment with the vet.
The vet said what I expected. We could put her in the local pound, where she might live for another two miserable years, but no one would take her. No one takes 16-year-old cats, and she would be very unhappy. The vet said, harsh as it sounds, the only solution is to put her down. She's lived a good 16 years and she's had a good life. I agreed. So I took her on my lap, the vet gave her a shot to put her into a deep sleep (took about 5 minutes), and then gave her another shot to stop her heart. It all happened very quickly.
The Alkmaar hospital is between the vet's office and our house, and it so happened that Jim was there for his dialysis session. I went there directly and told him Valentine was gone. He was shocked (didn't expect it) and deeply grieved. I took the photo you see of him at the same time.
So Beckett has now indeed become King of the Castle, the only cat at Kanisstraat 5. It will be strange without Valentine (and her sister Maggie, who ran away from home three months ago to die and never came back). Like all cats, she was a piece of work -- a distinct personality, tough old broad, independent and very cuddly. She was also particularly attractive to fleas (I never did successfully rid her of the happy colony living off her little person) and she was very hairy. I won't miss the fleas or the fur balls, but I'll miss Valentine jumping up on my lap every night to watch the 8 o'clock news.
With the posting I made yesterday, there is a photo of me taken by one of the nurses on the dialysis staff at the Alkmaar hospital. It was taken either at my first or second session of dialysis in January last year. Now here’s the second photo taken under similar circumstances, made today by Nancy when she dropped in for a visit. I’m using a newer dialysis machine but the main thing, Anne observes, is that I look like dialysis isn’t so strange an event in my life. After approximately 270 sessions of dialysis, indeed it has become, if never exactly normal, at least something I have adjusted to.
What neither photo shows is how I have used the time on dialysis. In those early months I mainly watched films, using a small DVD player that had been my Christmas present. But then I discovered that, with care, I could do more with my left arm -- the arm in which the two needles are inserted -- and so began to use the hours for reading, and since then have done as much reading in a month as I might have done in three or four months in the past. It’s an aspect of dialysis I will miss (assuming the transplant goes well). Today’s reading was chiefly a Dorothy Sayers’s classic mystery novel, Murder Must Advertise, a book that is as much a spoof of the advertising industry as it is about a crime to be solved. The DVD player has been passed on to Anne...
Thursday, October 18, 2007
We've talked about doing a journal about our great kidney adventure and now Cait, in creating this blog, has given us the opportunity to actually do it.
It's now about five years since I contacted our GP and suggested that, being 60, it might not be a bad idea to run some basic tests to see if there is anything that needs special attention. The main result was the discovery that the creatinine level in my blood was higher than it should be, a signal that all might not be well with my kidneys. I was sent to the Alkmaar hospital for further testing, which confirmed that indeed I was in the early stages of kidney failure. The cause was uncertain (a biopsy was done but failed), but the guess is that high blood pressure was the culprit. I was already under treatment to keep my blood pressure down, but additional medication was prescribed and I was tested regularly. In January 2006, it was decided it was time for me to begin dialysis --three sessions a week, each three hours long. (You can see me connected to a dialysis machine in the photo.)
There's an essay about what I went through in coming to terms with kidney failure here:
This describes it in terms of pilgrimage, not a word I would have used for having a chronic illness four years ago.
Now the main event isn't the illness as such, but what seems to me a kind of miracle: one person giving to another a part of her body. I think about this day and night. I made it a point not to ask Nancy, or anyone, to volunteer a kidney and could easily think of reasons to discourage anyone who was thinking of doing so (the time involved, the disruption of ordinary life, the pain of recovering from surgery, the element of risk involved simply being in a hospital, etc.).
It's now about a year since Nancy made the decision to do this and perhaps ten months since it began to look like, thanks to initial tests, she might be a suitable donor.
It was far from an easy decision. One of the cautionary factors is the fact that Nancy is the family's leading breadwinner. She brings in more as a translator than I do as a writer. For both of us to have to stop work for an extended period raised some practical economic questions.
Once it became clear to her that, no matter what the obstacles, she wanted to do this, we decided not to worry about lost income and to push forward.
The testing she went through was both thorough and protracted -- and slow. A test and then a month of waiting. Another test -- and another month of waiting. Nearly a year of tests. What Dutch doctors don't know about Nancy at this point cannot be much.
And now we're thirteen days away from the event itself. I find myself feeling very keyed up but not anxious, at least not so far. This may have to do in part with all the people who have been cheering us along and praying for us. It no doubt has a lot to do with the doctors, nurses and social workers who have been involved with us all these months. Good and caring people, highly motivated and competent. As Nancy put it the other day, we have never felt we were objects moving along a conveyor belt.
The latest major event was this past Monday. Along with Wendy, Cait and Anne, plus Fr Sergei Ovsiannikov, priest of our parish, we were at the AMC (the Academic Medical Center, part of the University of Amsterdam) for a meeting with Sylvia ter Meulen, the coordinator of the transplant team, to go over details of the transplant and to ask any questions we had.
We learned exactly what the operations will entail, what the preparations will be, how long it will take, what to expect when we come out of the anesthesia (how many tubes will be attached and where and for how long), and how long it will take before we can expect to feel our usual selves. We've heard from friends that hospital care at the AMC is very personal and that has been our experience so far.
Nancy will be operated on in the morning (it’s a longer operation) and me a few hours later.
Assuming all goes well, Nancy will return home four or five days later. I'll probably be in the hospital for eight to ten days. (Cait and Bjorn have offered to bring us home.) We'll both be able to walk fairly quickly after surgery -- thus no need to turn the living room into a bed room once we're back home; we'll be able to climb the stairs -- but no lifting for six weeks.
In my case, it will be about three months before I am in a state that could be described as normal. I'll also be going back and forth to the hospital quite a lot -- twice a week for a while, then once a week, then once a month. A major concern is the close monitoring of the anti-rejection medication I'll be on following the transplant.
So there you have it as of October 18 at 10:55 pm.
Thirteen days until T-Day (Transplant Day). Last night our friend Tom came over and we talked about the cellular make-up of the body, and about how each cell has a particular intelligence all its own. We tend to think that the mind is located in the brain, but is it? Is there awareness outside the brain? Is the individual's sense of himself or herself active in each cell and in other parts of the body? When my kidney is in Jim's body, what will it be like for him? Should I instruct my kidney now to be nice and to behave itself?
Then last night I had a dream. I dreamt that I looked in the mirror, and I had a white beard! Was it me? Was it Jim? Were the borders suddenly less clear?
We were told by staff in the Alkmaar and the Amsterdam hospitals that the success rate for kidney donations between partners is amazingly high -- amazingly because the partners are never blood relatives. Is it because the cells of the two bodies understand each other so well? That they've learned to listen to each other?
[Double-click on the kidney poster to enlarge.]