Tuesday, November 27, 2007
Jim went to the AMC in Amsterdam for his semi-weekly check-up yesterday (he also goes on Fridays) and was told that he doesn't have to go back until next Monday! Super-K is doing just fine. The only side-effect of the many medicines he's taking are large, impressive-looking and (he says) painless bruises on his legs. He looks as if he's been kicked by hooligans. The doctor said this is because the dosage of the blood-thinning injections he's giving himself is too high, and she promptly lowered it. The injections are to prevent thrombosis and only have to be taken until December 2 anyway, so that's one less medication to think about (and the least pleasant to administer).
I'm finally feeling almost normal this week. Much less fatigue, and a renewed interest in getting back to work. Yesterday I worked my way through most of the bookkeeping that had mounted up since the operation and got back in touch with some of my translation clients. I'm expecting a rather large job next week as well as the corrections of a children's book I translated back in the summer. So here we go again.
It seems odd to be be getting back to the routine without the prospect of impending major surgery in the back of my mind and without the constant concern for Jim's failing kidneys. Certainly we'll never take our health for granted after this.
[Photo of Nancy at work; double-click top enlarge.]
Saturday, November 24, 2007
I wasn’t sure we’d be able to manage such a feast this year, a little over three weeks since 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. So Cait took a day off work and organized the dinner, Anne picked up the turkey from the poultry butcher (where I had ordered it a week before), and everybody else pitched in with the cooking and clean-up.
My mother said grace. It was hard for her to get through the tears, but she thanked the Lord for uniting her with her family after a year of such tragedy (my brother’s death in March). We loaded up our plates and sat around the living room together. Dan kept everyone laughing, as usual, and Kylie read us a New Zealand children’s story (she’s Maori, and the book is written in both Maori and English).
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. Super K continues to work beautifully, although Jim does have some side effects from the immuno-suppressive medicines he’s taking. He keeps noticing other positive changes in his health, things he never would have related to kidney function before but now all seem to have been somehow connected to less than optimal renal function.
I’m grateful that he’s feeling so well, grateful to all the kids for their amazing support and help all through this, grateful to the medical community -- at the AMC and in Alkmaar -- for their constant care, grateful to Dr. Idu (the wonderful surgeon whom we met for only a few minutes but whose skill is something we’ll take with us all our lives), to our friends for their kind 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 visiting us and 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.
Like Jim, who seems daily to be discovering how the transplant is affecting his total health, I am daily discovering how the transplant is affecting my sense of who I am and where I’m going. It is immensely humbling.(Photo: Our two Thanksgiving pies. More photos of the celebration are on our Flickr site.)
Tuesday, November 20, 2007
Tomorrow it will be three weeks since the transplant. Three joyful weeks.
I was at the hospital in Amsterdam yesterday for the usual twice-a-week tests, plus a new echo scan, as Dr. van Donselaar wanted to make sure all was well with the kidney. She noticed a small cloud of lymphatic fluid that was left from the operation and so plans to take another look, possibly as soon as this Friday, to be sure this is putting no pressure on the kidney.
She also changed one of the prescriptions. All through November I am injecting myself with a blood thinner twice a day as a safe guard against blood clots. The medicine I was originally taking occasionally has the side effect of causing swelling and bruising in the area of the injections, originally my right and left legs. It happened to have this consequence for me, so I’ve now been switched to a different blood thinner which I’m injecting just above my abdomen. Meanwhile I must be patient as I wait for the swelling in the legs to recede. Given the muscles involved, it makes standing up, sitting down and climbing stairs mildly painful. Fortunately walking involves other muscles.
When one contemplates the long list of possible side-effects of all the medication I’m taking, this one problem hardly deserves mentioning.
Most aspects of domestic life at Kanisstraat 5 are now what they were before the transplant. We do our own shopping and are no longer eating microwave meals: spaghetti and meatballs last night, steak, potatoes and peas tonight.
This past Sunday, when ordinarily we would have been taking part in the liturgy in Amsterdam, we instead went for walk to the Alkmaarderhout -- the Alkmaar Woods -- part of which is a small zoo (farm animals, chickens, peacocks and some other exotic birds, plus a herd of deer and two llamas). It’s a walk as least at long as the one we ordinarily take in Amsterdam when going to our church and made us realize that we should be able to return to church next Sunday -- though I must ask at the AMC on Friday whether they’re ready to give the green light.
Almost a month ago, October 22nd, I wrote a brief refection for this journal about the original oneness of Adam and Eve. These past two days I’ve spent some hours working to develop this into a longer essay for possible use in the winter issue of In Communion. As part of the process, I’ve been reading commentaries on the Adam ands Eve narrative by those theologians of the first millennium who are known as the Church Fathers, due to the importance of their contributions to clarifying basic truths. I was especially impressed by a sentence from Gregory of Nyssa, a saint of the fourth century: “One who is made in the image of God has the task of becoming what he is.”
This links in my mind to something Merton said in a talk he gave in Calcutta not many weeks before he died: "What we have to be is what we are."
(Photo: A view of the Singel, the canal that encircles the center of Alkmaar, taken during our walk to the Alkmaar Woods on Sunday. The one windmill left in the town center, the Molen van Piet, is in the background.)
Sunday, November 18, 2007
Our niece Beth made a comment on my last posting regarding financial remuneration for kidney donation (Crossing the Line from No to Yes). I had said that for me, guaranteed health care for life wasn’t what pushed me from no to yes. Beth replied, “As someone who lives paycheck to paycheck, making a commitment such as this without knowing I was secure financially during the surgery and recuperation would be a big deal -- home care wouldn't be enough -- I'd need to know my bills were being paid, my rent covered.”
I had the same fear before I made my decision. What if the operation left me weak and unable to go back to work for several months? That would be a situation we could ill afford. This is why I suggested a publicity campaign -- to dispel that fear. Perhaps there are some people who really are debilitated by the donation of a kidney, but obviously the percentage isn't very high. A few months before the operation there was an information meeting on kidney transplants held at our local hospital in Alkmaar, where Jim was undergoing dialysis. The meeting was conducted by doctors and by the head of the transplant team at the AMC in Amsterdam. It was a very good, informative meeting, but I wonder how much better it would have been if a recent kidney donor had also taken part? We could have asked that person loads of questions: did it hurt much? How does it affect your quality of life today?
Beth is right, of course. You can’t go into something like this without knowing all your bases are covered. I realize the health care systems in the US and the Netherlands are very different, and there are more safety nets here -- but even so, people do donate kidneys in the US. How do they manage it? That would have to be part of the publicity campaign. The Dutch Kidney Foundation is a very powerful and helpful institution here, and the American Kidney Foundation is no different. Certainly they would have advice. The thing is: if particular societies want to encourage kidney donation, they have to woo the donors. Everybody’s got different needs. Some people need to have their bills paid, others need to have their small children cared for while recovering. And no one should lose his livelihood or his health insurance because he decided to donate a kidney!
Saturday, November 17, 2007
(Today’s photo: While Nancy recovers from the surgery of eighteen days ago, she finds herself needing a nap or two each day. Our cat Beckett almost always volunteers to assist her in napping, one of his great talents. Double-click on the photo for a bigger version.)
Over the past five years, when the kidney illness was first detected thanks to a blood test, I’ve many times said to friends, “If I didn’t know I was sick, I wouldn’t know I was sick.” I was able to continue my usual work. I wasn’t in pain. I didn’t feel at all diminished. In most regards, life went on as normal. Writing seemed to take more time -- The Road to Emmaus: Pilgrimage as a Way of Life ended up being a three-year project rather than one, as I had imagined when I signed the contract with Orbis, but was a better book for all the time it took.
The most obvious major change came when dialysis became necessary a year ago January -- that took about a 60-hour bite out of my usual work schedule each month, but even then I was able to use the time for reading, which proved a god-send. Travel became far more complicated (it’s time-consuming and sometimes frustrating setting up dialysis in other countries), but even so I managed to get to quite a few places in response to lecture invitations: France, Italy, Spain, Greece, England, Canada, the USA.
Probably because the disease had been noticed at an early stage, I was one of the more fortunate people coping with renal failure. Treatment began earlier than is often the case. I was the one dialysis patient coming to the hospital by bike rather than taxi.
But now that I’m living with a healthy kidney, I suddenly realize just how much impact the illness had on me, though it came on so slowly that I was hardly aware of the changes. I feel a little like Rip van Winkel waking up from a multi-year nap. The world seems brighter, colors more intense, tastes more intense. I find myself looking at familiar things with a sense of surprise. A friend told me how her brother, after receiving a donated kidney, felt like he was seeing the sky for the first time in ages. Even though I’m still recovering from surgery, I find I tire much less easily than before. I was often sleeping eight-and-a-half hours a night before; now it’s typically seven-and-a-half.
The doctors at the AMC are pleased with how it’s going. I see them often -- two appointments per week the first three months following the transplant. I was there again yesterday.
A question: Will this remain an approximately daily journal? Probably not. The recovery is coming along nicely for both of us. Nancy’s kidney, Super-K, is working with enthusiasm. There have been no signs of organ rejection, the primary worry of any transplant patient. I cannot even complain about side effects of the various medicines I take each day -- luckily so far they have given me a miss. It doesn’t make sense to make a daily posting that basically says “all is well.”
There’s the possibility of turning this it a journal that casts a wider net and in which the transplant is no longer the arch stone. We’ll have to think about it. What are your suggestions? The advice-needed sign is out.
Thursday, November 15, 2007
It’s now fifteen days since the transplant and we find ourselves steadily widening our borders. Yesterday we went for a long walk in the town (Nancy had to replace the watch that was stolen last week, while I was looking for a broad-brimmed hat). Later in the day we walked to the Alkmaar hospital, bringing flowers and a box of Belgian chocolates to the nurses who took such good care of me during my 21 months as a dialysis patient.
Today, in the late afternoon, we did our food shopping for the first time since coming home, walking to the supermarket we prefer -- the local Albert Heijn, on the far side of the North Holland Canal. In recent days this was a chore our daughter Anne had been doing it for us. Anne -- who had come over to vacuum the house and do laundry -- was anxious that we would carry the groceries home in sacks, exactly the kind of lifting we are under doctor’s orders not to do for six weeks, but we reassured her we would use our shopping cart on wheels. (The kids don’t trust us for a moment to take it easy.)
Nancy spent more time at her computer today than she had on any day since coming home. She wanted to do a little more work on yesterday’s posting to A Tale of Two Kidneys and submit it to the NCR Handelsblad for possible publication. She also wrote o the Dutch Kidney Foundation, the Dutch Minister of Health, and the Vice Premier of the Netherlands, André Rouvoet, in each case attaching “Crossing the Line from No to Yes.” Nancy has definitely slipped into campaigning mode.
Walking down the main street of central Alkmaar, the Langestraat, this afternoon, we both felt like people whose eyes had suddenly been widened. The sun was setting. What little sunlight there still was couldn’t reach the cobblestones but had gilded the thin spire of the town hall, one of Alkmaar’s oldest buildings. We stopped and stared like children dazzled by a Christmas tree.
Wednesday, November 14, 2007
Since Jim has been told that his immuno-suppressive drugs make him more vulnerable to skin cancer and that he should put on strong sun screen whenever he is exposed to the sun, he decided to buy a broad-brimmed hat. We’ve also seen a couple of friends recently who were sporting such headgear, and they looked good. So we went downtown today to pick up a Stetson. I personally think this is just the thing. He is now referring to himself as Indiana Jim.
Just two weeks since the kidney transplant, and I find myself thinking less about my present medical condition and more about the bigger picture. This has partly been sparked by a discussion now taking place in the Dutch parliament, having to do with the dire need in the country for kidney donors. The problem is that the number of deceased donors is low here because of the relatively low number of traffic accidents, which I understand to be the main source of such kidneys. Good news with a twist. So the government is kicking around the idea of offering financial incentives.
It’s against the law here to buy a kidney, so the idea is to offer the donor other financial carrots such as free medical insurance for life. Another idea is to promise the donor a high place on the kidney waiting list if the donor himself should end up needing an organ. But financial rewards are controversial and lacking in public support. There is a strong feeling that such offers amount to exploitation of the poor -- that in the end it would be poor people who would be lining up to give their kidneys away, and the wealthy would be spared.
Amazingly, this discussion has coincided with our operation. So here I am, fresh from the operating table and with a clear memory of how difficult it was for me to decide to donate a kidney. I cast my mind back, and wonder whether it would have been easier for me to say “yes” if I had been told that I’d have free health insurance for the rest of my life. According to a recent article in one of the country’s leading newspapers (NRC Handelsblad), the Dutch Council for Public Health and Health Care reasons that “if living donors were given some kind of financial compensation, they would be more likely to donate a kidney and fewer patients would die of kidney disease. The chance that someone might donate an organ because they were in financial straits would be lower if they were offered free health insurance.”
In our particular situation, financial factors were certainly important. We are self-employed, I am the main breadwinner and we have no disability insurance. Yet I don’t think free health insurance would have done much to push me over the line from no to yes. After all, if you have to make a certain amount of income each month, and you’re afraid that such an operation would leave you bedridden for months -- or at least greatly weakened -- a few hundred euros a months isn’t going to make much difference. When I look back now, I think it would be nice if the government were to reward me with something like free health insurance, but I don’t think it would have weighed very strongly in my original decision.
My problem, and perhaps the problem of many people, is that I was afraid of how the operation would affect my quality of life. I was afraid that it would create insurmountable difficulties, in the days that immediately followed my release from the hospital and in the months and perhaps years that followed. What I needed, as it turned out, were two things: I needed the reassurance of post-operative home care, and I needed good, clear, realistic examples of people who had donated kidneys and had been able to pick up their lives where they had left off. I needed home care and I needed heroes.
The home care was a problem. My aged mother lives with us now, and we needed someone who would live in the house while we were in the hospital to prepare her meals. We also needed someone who would be here when we got home to cook for us, shop for us and do light housework. We belong to a Home Care organization, as many Dutch people do, and I called them to see if this could be arranged. I was told to call another authority, a Central Indication Board, which I did. They told me that I could not arrange home care myself before the operation; that I would have to tell the people in the hospital when I checked in that I would need post-operative home care, and that the hospital would arrange it based on their evaluation of my need. Then I called the head of the transplant team, whom we had come to know well. I asked her if this was true. She said actually it wasn’t. In fact, you check in to the hospital and tell them you’ll need post-operative home care, and they put you on a waiting list. You may get your home care in six months.
So I contacted all our kids -- five, all adults, plus two wonderful partners -- and asked them if they would be willing to sign onto a care schedule for the days during and following the operation. They were only too willing to do so. We quickly filled up the calendar, and it worked like a charm. All the kids were actively involved in the care of Grandma and of us, it was great for our peace of mind and it was great for the family. It turned out to be the best solution.
But what if we didn’t have such a strong family network? What if our kids lived far away, or didn’t like us very much? What if we didn’t have kids at all? Would this problem have been a factor in my deciding not to donate a kidney?
My second need was for strong, positive examples of real kidney donors. I had been told countless times that you can easily live with one kidney, that it doesn’t shorten your life and that it doesn’t even affect your quality of life. But I needed real stories. I checked web sites. I read blogs. I listened to friends and relatives talking about people they knew who had donated kidneys. I even watched an internet film of the operation -- a hand-assisted laparoscopic donor nephrectomy -- from Fargo, North Dakota. All these things helped convince me that it wasn’t going to be so bad. I probably wasn’t going to die or have to live a diminished life. In fact, I’d probably be back to my old self within a period of about six weeks.
And that’s what happened. It’s two weeks ago today since the operation took place. Most of the time I don’t even think about the wound in my stomach any more. It’s a bit sensitive on the surface, but there’s no pain at all. The pain in my shoulders is gone. I still tire easily, but I can stroll downtown at my normal pace. I took off the months of October and November (I worked very hard during the summer so I wouldn’t have to even think about work and deadlines until December), so I can nap when I’m tired.
If I could give the government my own personal advice, it would be this: provide high-quality home care to potential donors and make sure they know about it, and start a high-profile campaign with strong, positive images of real kidney donors. Maybe a documentary. Maybe short public service spots. But let people know that donating a kidney is not as terrifying as they might think. Not by a long shot. I have a feeling these are the things that would push many people over the line from no to yes.
But I’m speaking for myself. Perhaps the first thing to do is simply to talk to living kidney donors and ask them what it was that pushed them over the line. Ask them what the government could do to make it easier for others to do the same thing. How many people are there out there who are agonizing about this very thing? How many brothers and sisters, friends, cousins of kidney patients are lying awake at night, wondering what to do? What would it take to help them decide to donate?
Tuesday, November 13, 2007
Nancy is too much in the white water of her voyage with Harry Potter and company (she has started the next-to-last volume) to do a posting today, so let me try to fill her shoes.
When she got out of bed this morning, having stood up, she was astonished to realize that, for the first time since the transplant, she had done so without having to take her healing abdomen into account. “You know,” she said, “I think I’m beginning to feel my old self.”
She even decided to do a little administrative work, putting together some papers that needed sending to our health insurance company, and also working on getting some of the documents we still need to obtain from the US in our quest to arrange for Nancy’s mother, Lorraine, the right to live with us in Holland.
Nancy also wrote a posting to the web site discussion area of the country’s leading newspaper, the NCR Handelsblad, on the topic of what the country could do to increase the rate of live kidney donations. (I will leave it to Nancy to share her ideas, perhaps in her next blog posting.)
We’re still on a somewhat minimalistic kitchen setting. Breakfast and lunch present no great challenge. As for supper, Anne picks up ready-to-heat meals at a nearby supermarket. It’s not quite home cooking but not bad and surely it keeps us going.
Having used up the medicine kit the AMC provided me with on discharge so that I could make it through till Tuesday, I had the small drama this morning of discovering that one of the anti-rejection drugs I am supposed to take every day at 8 a.m. had not been included in the large package the pharmacy put together. As taking the drugs on time is a high priority for anyone living with a transplanted kidney, I hurried over to the nearly pharmacy. They checked their files, found that the drug in question had been left off the list the AMC had provided them with, called the AMC, and within a short time I was home again with the particular drug I needed. (Let me mention that in Holland one rarely has to pay for anything obtained at the pharmacy. No need to bring your wallet. Payment is made by one’s health insurance company.)
In addition to various pills, throughout the month of November I’m taking two injections of blood thinners each day. I didn’t do a very good job with this morning’s injection in my right leg and as a consequence spent a good part of the day finding walking painful. Largely confined to my living room chair, it became a day of concentrated effort to catch up with all the e-mail that piled up these last two weeks or so.
We had the good news today from St. Vladimir’s Seminary Press that my next children’s book is on their publication calendar for 2008. It’s about Saint George and the dragon, a legend that uses spectacular symbols to amplify what actually happened in the life of this martyr of the early third century. The signed contract will be in the mail tomorrow morning.
Best for last: Our beloved Beckett, a cat who looks like a miniature panther and who from time to goes off on great expeditions, returned last after a week in remote parts of darkest Alkmaar. We were overjoyed to see him. Throughout the day, he has been given us an excellent example of what real resting looks like.
(Photo taken last Friday morning at the AMC of my medicine list and schedule and their storage system.)
Monday, November 12, 2007
It’s now my fourth day home. It’s been going well for both of us. Great to be in back to a life beginning to resemble “normal,” though we are under doctor’s orders to go very easy, no lifting anything that could cause some degree of strain, etc.
Nancy’s surgery went deeper and the operation was twice as long as mine (mine was only 90 minutes), so she still tires more easily than I do and naps several times a day. All this means we are enjoying a kind November holiday. Nancy calls it her “Harry Potter Vacation,” as she has more time to make her way through all seven volumes of Rowling’s epic tale about the power of self-giving love. Half an hour ago she finished the fifth volume, Harry Potter and the Order of the Phoenix, and has already gotten into the first chapter of Harry Potter and the Half-Blood Prince. At some point -- perhaps it will need to wait till she puts down the final volume -- my hope is that she’ll make some comments about what she takes away from these thousands of must-turn pages.
I was at the AMC today for the first of my twice-weekly control appointments. Adding in about three hours for round-trip travel by train, it took about five hours altogether. There was a meeting with one of the doctors of the kidney staff plus blood pressure and weight checks plus various tests. With two AMC appointments per week for the coming three months, significant travel will not be a possibility at least till the spring. But this has to be. For the AMC, the main thing is keeping a very close watch to make sure all is going well with the new kidney -- Super-K, as Nancy’s has christened it -- and to fine-tune the anti-rejection medication to the lowest safe level.
Anne has now taken over shopping for us and plans to do a round of house-cleaning on Thursday. Though simple breakfasts and lunches are no problem, we’re not yet cooking supper, but eating surprisingly good ready-prepared microwave meals that Anne picks up for us at a local supermarket.
Fr. Meletios, one of our parish priests, came up after the Liturgy yesterday to bring us communion, to congratulate Nancy on her name day (St. Anastasia of Rome), and -- along with my god-son Silouan, to join us for a microwave repast.
We continue floating on a cloud of gratitude.
Saturday, November 10, 2007
It’s ten days after the operation and I’m finally beginning to feel enough energy to start making contributions to the blog. 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.
Jim used to start every morning with a long session of violent coughing to clear out his lungs. Sometimes this would make him feel faint or nauseated, and he’d have to lie down again to recover, drenched in sweat. He was wondering if the transplant would have any effect on this. Answer: it does. The very first thing we noticed after the operation was that the coughing disappeared. Obviously the coughing was just one more desperate effort that Jim’s body was making to clear out the impurities, but now the new kidney has taken on the full task of keeping his body toxin-free and spinning like a top.
Caitlan suggested that we give the new kidney a name. I’m tempted to call it Super-K. It impresses me all to pieces. I have an image in my mind of a little kidney in a cute little spandex suit with a big K on the front, beaming broadly with a big American smile and absolutely radiating strength and good will. I’m quite proud of Super-K, actually. I didn’t know I had it in me!
I can only assume that its twin is just as efficient, so I should eventually return to my former level of activity. But it’s taking a long time. Ten days -- I should complain! My operation took twice as long as Jim’s, and the impact of having one less vital organ is naturally going to be significant. Frankly, I don’t mind gliding around the house in slow motion. I’ve taken the rest of November off, so I don’t feel compelled to get back to work. I’m deep into Harry Potter (which I’d never been able to read until now). All I really have to do is the paperwork for the insurance after the wretched break-in on Monday night. And maybe go window-shopping for a new watch to replace the one that the perpetrator kindly relieved me of.
I should also note that today I don’t feel any pain in the wound for the first time. I can easily get in and out of bed, in and out of chairs, up and down stairs. It no longer hurts to laugh, or cough, or sneeze, or blow my nose. If I lift anything of any weight (like 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 and I have to sit down and wait for the energy to return.
Jim goes back to Amsterdam on Monday for a careful check-up. He’ll be a regular visitor to the AMC twice a week for three months, then at longer intervals. I don’t have to go back for six weeks. 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, I now realize. 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 coughing, “me and my big mouth” takes on a whole different meaning.
Friday, November 9, 2007
Or as Nancy just put it, "Back home with these wretched people." Well, in fact that aren't so bad. Not actually wretched.
Wendy brought me back, leaving the AMC at 2. The social worker in the kidney transplant unit, Jacintha, had earlier in the day arranged for a taxi so we returned to Alkmaar in comfort, arriving at 2:40. She had also gotten approval from our health insurance provider to cover all my travel costs to the AMC for at least the coming year. Not normally by taxi -- it's an easy trip to make by train from Alkmaar.
Another kidney echo scan this morning (the new kidney is thriving) and more blood tests, then a visit from Michael Jacobs, a photographer whose work I much admire and a deeply thoughtful person, dare I say a mystic. You might take a look at his Flickr site.
The northwesterly storm that battered the Dutch coast during the early hours today caused the sea level to rise nearly four meters but no dikes were broken and the wind did little serious damage -- just fallen tree limbs and roof tiles blown away. Near the Fresian town of Fryske thousands of mice drowned because they were nesting on land outside the dykes.
The heavy weather continued till the late morning -- massive clouds but also islands of blue sky alternating showers and sunlight. Watching from my AMC room, I counted five rainbows appearing in about a three hour period. Never had a day of five rainbows.
(The photo: Before discharging me, the doctors wanted to take one last look at Nancy's kidney at its new address. It looks a bit like a donut. They were pleased that there was no indication of swelling.)
I was the beneficiary yesterday of a newly installed machine, possibly borrowed from the sets of Star Wars, that -- among other things -- can unobtrusively look at a bladder and see if there are any damaged or unhealed areas. Happily all is well. Thus the longed for moment of being released from the catheter happened on the spot, alleluia, alleluia. I felt a little like Pinocchio at the moment the angel freed him from his strings.
I had been told that, assuming my bladder passed inspection, I would be released and was avidly looking forward to a homecoming in Wendy’s company and a nice meal at Kanisstraat 5 in Alkmaar, but soon after getting back to my room the doctors paid a visit and let me know they had decided to keep me one more night. They want to do another round of blood tests tomorrow and meanwhile want to be sure my kidney doesn’t just look good under high-tech inspection but is functioning well in actual life (which happily it seems to be doing quite well).
I also learned that my creatinine level, for the first time in about five years, is now “normal,” normal signifying anything between 80 and 120. It was 900 when it was checked last week on our arrival at the AMC and was 110 the day before yesterday.
The delay in going home was disappointing, but, on the plus side, no longer hobbled by the catheter, I was free to go for a walk and eager to take a closer look at the hospital, inside and out. I put on my street clothes (trousers tighter than they were ten days ago) and set off.
I’ve never been in a hospital anything like the AMC. The view of the complex from the outside suggests no-frills efficiency. Indeed the efficiency is there -- the hospital seems to operate like a Swiss watch -- but once inside the main entrance one enters a corridor that leads to a large glass-roofed plaza dominated on the ground level by a café and bookshop (where I bought a copy of Khaled Hosseini’s novel, A Thousand Splendid Suns). The plaza serves as a kind of public living room -- lots of places to sit, have a cup of coffee and read a book or newspaper. An adjacent corridor leads to a similar plaza which is home to a cafeteria, a café and an upmarket restaurant with the elegant name Basilico, plus a row of shops: a small supermarket (I came away with a bottle of strawberry smoothie), a gift shop (I bought an anniversary gift for Nancy: a music box), a barber shop (but Nancy is my barber), etc.
Photos I took during my walk are now on our Flickr site in the set of kidney transplant related images: http://www.flickr.com/photos/jimforest/sets/72157602782265033/.
As night fell, it was no longer walking weather outside the hospital. It was suddenly raining with a passion. On the evening news I heard that the entire Dutch coastline were being closely monitored for the first time in thirty years because of a severe storm in the North Sea coupled with exceptionally high tides and waves expected of up to ten meters. Coastal areas were preparing for a possible four-meter rise in water levels. Ferry services to the Wadden islands were cancelled while the islanders themselves were hurriedly laying down sand bags at vulnerable locations. Similar conditions in 1953 caused dike-breaking floods in the province of Zeeland which cost more a thousand lives.
It may be a sign of healing that what is happening outside my hospital window isn’t overshadowed by the kind of myopia that illness can occasion.
Thursday, November 8, 2007
Eight days since the transplant, plus one day in the hospital for pre-op tests and the actual day of the transplant. Ten days in hospital (ten days in dry dock), not to mention all the time spent in the Alkmaar hospital these past few years. Being in the world of illness and those who care for the ill has become a major part of my life, a pilgrimage that continues.
One of the night nurses in this ward, a young woman with close-cropped silver blond air wearing bright blue running shoes, dropped in a few minutes ago to say goodbye, adding that of course in the future she will be seeing me again from time to time.
In fact it’s not definite I will be leaving today, but so far the signs seem to point in that direction. There is one more major test, the bladder examination, at 11 this morning. If that goes well, I should be in Alkmaar in time for supper.
There was another round of blood tests yesterday morning -- about a dozen small vials to be filled. What’s not know about my blood cannot be much.
Later in the day a nurse came to talk about living with the factor of a reduced resistance to illness, a consequence of the immuno-suppressive drug regime I will be on for the rest of my life. For example, I’m significantly more at risk of skin cancer and will need to use sun screen every day and have to avoid being in the sun for prolonged periods from the late morning till 3 or 4 in the afternoon -- no sun bathing. She also briefed me on the kidney clinic here, in an adjacent building that houses the AMC’s Polyclinic. In the coming months I will be there quite a lot -- twice a week for the first month or two.
I spent hours yesterday reading Ken Follitt’s fine novel of 13th century England, “The Pillars of the Earth.” It’s the next best thing to traveling into that period by time machine. At the center of the narrative is the construction of a cathedral.
Also I had time to do some searching on the web for texts about the iconographer Archimandrite Zinon (sometimes spelled Zenon) and came upon an excellent essay by Aidan Hart on how traditional iconography has been revived in the past century following a long period of decadence when icons became second rate imitations of third rate western paintings. In Russia, Zinon has been an especially important figure in the recovery process.
Using Google Earth, I searched the south of Amsterdam so that I might have a better grasp of just where the AMC is and see what it looks like from the air. (Double-click to enlarge the image.)
There was a nice visit at supper time with my godson, Silouan.
Then in the evening watching Dennis Potter’s long television film, “Lipstick on Your Collar.”
The sun has just risen, not yet touching the ground but lighting up the upper floors of the nearby building. A new day begins.
(Five hours later: Bladder examination over -- all is well with that part of my anatomy. No more catheter, alleluia. But the doctors have decided to keep me one more night for a final round of tests tomorrow morning. And then I head home, accompanied by Wendy.)
Wednesday, November 7, 2007
It’s just past six in the morning. Not a long sleep but solid. Still dark as midnight outside, but the trains and buses have begun running and there are a few cars on the nearby streets. From this height -- the fifth level above the ground floor -- the south of Amsterdam looks like a very tidy model train layout.
In the mid-morning yesterday, shortly after dark grey clouds produced a brief shower, I watched a rainbow rise from the right side of the window and then slowly complete its arc. The nurse who was doing the first of a series of seven hourly blood tests to see how the medication I’m taking was being accepted, suggested we ought to forget about all that and instead make our way to the nearby pot of gold. Surely it wouldn’t be hard to find. But instead we kept at the blood tests.
Rainbows are not rare in Holland, especially in the rainy season that Fall is, but somehow I was more vulnerable to its astonishing beauty and experienced it as signal from heaven, a reminder of God’s love for us and our hard-pressed world.
I had the news yesterday that my creatinine level -- 900 before the transplant -- is now 110. But the examination of my bladder that I had hoped might happen yesterday is delayed until Thursday, at which point, assuming no unpleasant discovery is made, I will be free to return home. Instead a sonar scan -- an echo -- was made to take a very close look at the veins and arteries in my neck. The purpose is to create a base line to see how the anti-rejection medication I am taking daily for the rest of my life affects my circulatory system. (I’ve agreed to be part of a kidney transplant study that the AMC is conducting.)
There was distressing news from Nancy yesterday. The night following her return to Alkmaar a thief had broken into the house. Sometime after midnight, the back gate had been forced open as well as the back door. Not much was taken: Cait’s laptop, camera and wallet and Nancy’s watch, all of which were on the coffee table in the living room. (Cait was staying at the house taking care of Nancy and Lorraine.) The police quickly came to the house followed by two detectives. By the early evening the back gate and door had been repaired. The worst loss was not the things taken but the theft of time involved in coping with the theft, and the sense of violated space.
Tuesday, November 6, 2007
I'm not going to spend a lot of time behind the computer today, but just to let you all know that I'm home from the hospital and everything is fine. I haven't even read any of my accumulated e-mail yet (unlike Jim, who was e-mailing the morning after the transplant). 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.
When we left Jim he was being relieved of yet another tube of his full panoply of tubes, IV-drips, catheters, etc. The big project now for him is to organize the administration of his own immuno-suppressive drug regime. But he's feeling great. And the kidney is a champ.
Thanks to everyone for your prayers, good thoughts, cards, e-mails, and general positive energy. We felt as if we were moving within a web of love and support.
The staff of the AMC is fantastic. We have only good things to say about that impressive institution.
I'm not supposed to overdo it, so I'll keep it short.
* * *
In April 2008, I found time to type out the entire journal I wrote out in my moleskin notebook while in the hospital.
* * * * *
3 November 2007 (3 days after the transplant)
I don't think I could have written like this yesterday. Yesterday was Jim's 66th birthday, our 25th anniversary, and two days after the kidney transplant. It's taking a long time to get back into focus. Jim is going great guns. He began sending e-mails out on Thursday morning, the day after the operation! The new kidney is strong and producing enormous amounts of urine. And my remaining kidney is also being loyal, working hard to take up the slack and do all the work on its own.
We checked in to the AMC early Tuesday morning, coming by train, first class (which we never do, but we wanted to avoid the commuter crowds). Jim went to F5 noord (nierafdeling) and I to G5 noord (algemene verpleging). I waited in a patient's recreation room (living room with TV) for about 10 minutes until someone came to show me my room, 209. As I was unpacking, a young doctor arrived to hook up an IV drop which would fill my body -- and kidney -- with fluid and put it in an optimum condition for the operation. He then took me down to an examination room and gave me a thorough physical, taking down my medical history and profile as well. I was able to point out any aspects of my health that I thought were strange or suspects. Then back to my room. The appointment with the anesthesiologist with Jim was scheduled for 1:15, so I ready Harry Potter (5) and had lunch. The IV drip was making me feel very fit and very hungry.
At 1:15 I was taken to the office of the anesthesiologist, where I met up with Jim. All this time I was being treated by a very young nurse who had to keep chasing me around the hospital to replace the IV bag. Jolanda was her name, I think. Early 20s and really quite good. Also the surgeon stopped in, Dr. Ibu, whom the earlier doctor had praised for his skill. An Indian man with a warm smile. He said I would not wake up with a belly full of gas [which was the experience of a friend who had a similar operation]; they remove the gas first. I spent most of the day reading. Had dinner and went to bed and slept quite well.
I was awakened at 7:00 so I could freshen up. I washed my hair in the sink (no shower with the IV drop) and put on the surgical gown given to me by the nurse. No breakfast, of course.
Sylvia [head of the transplant team] dropped in at around 7:30 to wish me luck. The nurse gave me 2 paracetamols and a half of a tiny blue tablet to calm me down. Although I didn't feel nervous, my legs were trembling. I was taken to the verkoever (recover room), where the little blue pill calmed be totally and knocked me out. I have no recollection of being taken into the OR or of being anesthetized.
Next thing I knew I was waking up in the recovery room. A nurse by my side said all went very well, and that Jim was in an ICU just cattycorner from where I was in recovery. He was still out and would spend the night there.
The nurse also told me they had had trouble "entubing" me for anesthesia, so they ended up using a mask. Oddly enough, they had the same problem with Jim! She said they had written all this out in technical language for us. She also said it was a rare problem! For days I had a sore throat.
I was taken back to my room at about 3:00 (vague on the time). I felt pretty decent, but very sore and a little nauseated. Couldn't get out of bed. Catheterized, fortunately. I had another IV drip on the other hand with fluid and morphine, and a little device by which I could administer doses of morphine myself. I only did this a couple of times. The pain was not severe. I was assured that I could not overdose myself.
Slept a great deal. Visitors? Wendy and Anne -- so good to see their sweet faces. Silouan, Thomas. Slept OK considering.
Thursday was a blur of sleeping, having my catheter checked, trying to get a little bouillon down. Jim was wheeled down to see me! Obviously in better shape. He just sat there and cried. I couldn't read, couldn't focus on words.
Thursday night was bad. I had terrible heart palpitations and shallow breathing. Strange dreams.
In the morning I told the doctor about the palpitations. He ordered blood tests and an ECG. Later on a cardiologist came to talk to me and said the tests showed nothing, but if it happened again to call a nurse directly and another ECG would be done.
The catheter was removed and the IV drip as well.
It was Jim's birthday and our anniversary! I was able to read and move more comfortably and could get out of bed. I walked around the G5 ward, very slowly.
That evening, Dan, Wendy, Cait and Björn came for a sort of party. Wendy brought a huge fruit basket. They wheel-chaired me down to Jim's room, and Wendy hung up slingers. Dan took pictures and Jim showed us a sonogram of the new kidney, working beautifully. Silouan came, too, with Leonidas chocolates to pass around.
Saturday was a lovely day. Now that the catheter and IV were out I could take a shower. Wonderful! Went down to visit Jim (in a wheelchair). He was doing very well. Maria Faber came and brought a small icon of the Kazan Mother of God and CD of the choir form the Convent of the Kazan icon in Russia. She also brought a copy of the day's Trouw with a lead article about kidney transplants! Mostly about a Dutch man who had received four kidneys from his brother, mother, father and wife. Wendy also stopped by.
Nice evening. Watched a little TV and read. Had heart palpitations again and called the night nurse. He had another ECG taken. Showed no irregularities and my blood pressure is normal (124/71), but my pulse was irregular. He said it was probably an extra systolic beat, which is not an uncommon problem. The palpitations stopped after midnight. Saturday night was the first really normal night of sleep, partly due to the fact that I figured out how to adjust the bed properly, partly because I could sleep on my side without pain or discomfort.
Sunday morning I chatted for a long time with my roommate, who is here to have her thyroid removed. Lovely person, 39, two daughters, nice husband, good marriage, good sense of humor. Walked to Jim's room for the first time! He's doing fine and is learning how to manage his new -- very complicated -- medication regime. I tried to translate all the papers he got but could only do page 1. Exhausting!
Tomorrow I go home.
Tonight Dan and Noah came to see us! It was so great to see Noah. I just couldn't stop kissing him. We all walked to Jim's room and showed Noah the picture of the kidney in Trouw. Jim showed him the sonogram image. A lot for a little boy to take on board, but we tried to make him feel comfortable and appreciated.
The nurse said I would probably be able to go home before noon tomorrow.
* * *
Cait and Anne appeared mid-day yesterday to collect Nancy. She called when she got home to let me know she actually walked out of the hospital -- no need of a wheel chair.
It was a day of overlapping visitors: First Cait and Anne, then soon afterward Fr. Sergei Ovsiannikov (bringing communion), then Maryleen Schiltkamp, and finally Tom and Kylie, who left a little after eight. Nearly eight hours of guests!
Fr. Sergei told me about the visit over the weekend of the monk and iconographer Zenon, whom I had interviewed at his monastery in Russia back in 1987 when I was writing Pilgrim to the Russian Church and who later became part of Praying with Icons in the chapter on the making of icons. He came to Amsterdam to look at our church and, having done so, gave a lecture after the liturgy on Sunday about how best to make use of a basilica-type building.
I had never received communion apart from the liturgy before. It can be done quite simply, Fr. Sergei explained, but he had decided to preface communion with many elements of the liturgy so that what we were doing might be an extension of the full liturgy in the church the day before. It was an intense experience. I was asked to do some of the reading, including the creed, and found myself weeping with gratitude that I was part of a community spanning many centuries which has said these words day after day. Fr. Sergei turned the small table at the side of my bed into a simple altar, as you see in the photo. (Several other pictures taken yesterday have been added to the Flickr site: http://www.flickr.com/photos/jimforest/sets/72157602782265033/.)
Maryleen arrived just after communion and, following Fr. Sergei’s departure, told me more about Zenon’s lecture. Now I feel as if I had almost been present to hear it. Maryleen is an artist -- a painting she gave us years ago hangs in our living room. She and Tom Collord have a gallery show opening this Friday in Amsterdam. They will be hanging it tomorrow.
Tom and Kylie arrived as Maryleen was leaving. We mainly talked books. Tom estimates Kylie reads about five books a week. She insists it’s no more than three. Our cheerful conversation was interrupted by my noticing the bed felt damp and then discovering the blanket was soaking up blood. It turned out to be a leak on the small plastic sack that had been attached to the place where the catheter to Nancy’s kidney had been cut yesterday. In fact the bleeding had stopped hours before, but the stopper on the sack had somehow come loose, freeing the contents. The little dramas of healing!
Medically, my big hope for today is that the catheter connected to my bladder can be removed. Using a tiny lens on a thin cable, they’ll be taken a look at the inside of the bladder to be sure it has healed well from the small wound made in connecting it to Nancy’s kidney.
One has to say that modesty takes a different form for hospital patients.
Monday, November 5, 2007
Nancy was picked up by Cait and Anne about an hour ago -- they will be back in Alkmaar by now. I’m now on solo setting at the AMC, but it may be not for long. The doctor who saw me this morning said I might be ready for release as soon as Wednesday. (I had been guessing Friday or Saturday.) The timing depends on tests scheduled for tomorrow when staff will be doing a seven-hour series of blood tests to fine-tune my medication. Also they’ll be taken a very close look at my bladder be make sure it’s healing well. If the bladder test is positive, it may be this is my last day of having to live with catheters. I’m now down to two, as the catheter that was connected to Nancy’s kidney was removed at mid-day. Amazing
The nurse of duty this shift suggested that both Nancy and I drink lots of cranberry juice from now. Great for the kidneys, she assured me. I mentioned this to Cait and now have three bottles of cranberry juice.
Cait and Anne also brought the cable that connects my little Sony camera to the laptop. As a result there are now a number of new photos in the kidney-transplant related folder -- see: http://www.flickr.com/photos/jimforest/sets/72157602782265033/.
The photo I'll paste into this posting is one of the additions: Nancy's holding an echo scan of her kidney at its new address.
I’ve been doing more writing the past 24 hours, including a recommendation for its Amazon page of Fr. Meletios Webber’s fine new book, Bread and Water, Wine and Oil, which I’ve been re-reading these recent days. It’s one of the best books on spiritual life I’ve come upon.
Speaking of spiritual life, our rector, Fr. Sergei Ovsiannikov, is on his way here to bring me communion. He reminded me it's my name day.
Sunday, November 4, 2007
The nurse tells me that the IV connection attached to the back of my right hand will be removed today after an injection planned for later in the morning -- that will make things a little easier.
I start taking charge of my anti-rejection medicine today following a schedule that was given to me last night. For the first two days a nurse will be double checking to make sure I get it right. There were five different sorts of pills to be taken at 8 this morning. I’ll be on anti-rejection drugs for the rest of my life.
With the assistance of a nurse who pushed a wheel chair, Nancy came down for a long visit yesterday. She too had managed a morning shower but found herself exhausted afterward and had to take a nap. Her operation was more radical than mine -- about three hours compared to about 90 minutes for me -- and the recovery time will also be longer. She had the good news that she can return to Alkmaar on Monday.
We looked through the many e-mail messages friends have sent, as well as comments that have been posted on the blog. So much encouragement!
The e-mail included plans for our annual family Thanksgiving meal, which this year will be with Nancy in the background rather than on the front line in the kitchen. It’s the one American holiday we observe, though on the last Friday of November rather than Thursday (as Thursday is a normal work day in Holland).
One of the members of our parish, Maria Faber, dropped by for a visit, bringing with her a small bronze relief icon of the Virgin of Kazan (one of the many titles of Mary), whose feast day it is today, plus a CD of the liturgy recorded at the monastery of Kazan in Russia.
Wendy came by for a nice long visit just after Maria. We talked about which ten books we would take with us had we to move to a small desert island. (It proved far from easy making the choices; the lists are still a work in progress.)
We also considered which one museum painting we would like to borrow if only the museum was willing. Wendy decided on one of Van Gogh’s final paintings, crows over a wheat field against a dark blue sky.
Perhaps because I was reading a book about Bruegel yesterday, I chose his painting of the fall of Icarus. It inspired one of my favorite Auden poems:
In Bruegel’s Icarus, for instance: how everything turns away
Quite leisurely from the disaster; the ploughman may
Have heard the splash, the forsaken cry,
But for him it was not an important failure; the sun shown
As it had to on the white legs disappearing into the green
Water; and the expensive delicate ship that must have seen
Something amazing, a boy falling out of the sky,
Had somewhere to go and sailed calmly on.
(Double click on the image to see it in more detail.)
Saturday, November 3, 2007
Here is one of them...
Friday, November 2, 2007
Night time. A nice view out the window of the southern edge of Amsterdam. Lots of amber lights stretched out like Christmas tree decorations. There’s a train pulling into the nearby Metro station.
For the first time, I’ve been out bed part of the day, actually standing up for a time, if not very straight. I was given a wash by one of the nurses who decided to spruce me up before I had my first post-operation visit with Nancy this morning. She’s in a room in the short-term surgery section about a minute away by wheel chair. Then in the mid-afternoon we were together for a second visit while Anne was here. (She brought framed drawings she had made of each of us. I’ll try to place a photo of at least one of the drawings with this posting. The one of me was inspired by a photo Nancy took 24 years ago when Anne was a day old.) There is likely to be a third visit in the evening with more of the kids dropping in.
One of the doctors did an echo scan of the new kidney this morning -- her birthday gift was a print out of the picture that I’ll post it once I’m home and can scan it. It looks like a dark donut with a bite taken out, or a disoriented C. The doctor was pleased to see it wasn’t swollen.
Blood tests today showed my creatinine level -- over 900 when I arrived at the AMC on Tuesday -- is now down to 166. (Yesterday at was 326.) Nancy’s kidney is a powerhouse. Meanwhile Nancy has been reassured that her one kidney has immediately taken over the work of two. No problem. Divine redundancy.
This morning Nancy found she wasn’t yet up to holding the Harry Potter book she brought along -- The Order of the Phoenix, a massive hardcover book -- but by this afternoon she had it in hand. In those intervening hours she had been freed from the IV and was no longer tied down by tubes.
Ah, I hear visitors approaching...
An hour later. Visit over. Nancy, Wendy, Cait, Bjorn, Dan, and Silouan. They brought with them a huge box of fruit, tickets to attend a performance of the Saint Matthew Passion at the Concertgebouw next March, and a box (soon depleted) of Leonidas chocolates. Tom was planning to come but had to work late at Nike. Kylie is in Alkmaar taking care of Lorraine. There will soon be some photos on Dan’s FaceBook page. The room is now bedecked with a banner that says “Hurrah!”
Thursday, November 1, 2007
This comes from my hospital bed, room 227 in section F5 North of the AMC. It’s the first of November. All Saints day, on the western calendar. A blue sky with some white clouds outside. I’m half sitting, thanks to the adjustable bed. Not easy to be writing. An IV is connected to the back of my right hand and I’m hitting more wrong keys than right ones. My lower abdomen on the right is seriously sore. That’s the location of what was formerly Nancy’s kidney. She is now down to one while I’m graced with three, two of which have become bit players, one of which is an instant super star. It’s already doing a great job, the nurses tell me. My creatinine level has fallen dramatically. Other indicators are equally good. My only complaint is that for the time being I must do my best to avoid coughing -- then the abdominal soreness turns to serious pain. I’ve got a green button with which I can press to administer morphine, but so far have only used it once. All that Nancy and I had hoped for seems to have happened.
I remember a transparent blue mask being pressed over my nose and mouth in the operating room , after which the first thing I remember is waking in the recovery room to discover Wendy and Anne sitting next to the bed. I could just barely focus my blurry eyes. So good to see them!
Not sure when I will get to see Nancy -- but hopefully by tomorrow, our 25th anniversary and my 66th birthday. (The birthday gift has been delivered.)
PS from Nancy added 19 December: The surgeon who operated so skillfully on both of us is Dr. Mirza Idu. A little web research reveals that he's an MD PhD (a medical doctor with a PhD), or, as the medical students sometimes say, a Mudd-Fudd. These tend to be over-achieving doctors of amazing skill who are as interested in research as they are in their particular field of medicine. He has written quite a bit on donor nephrectomy.