Monday, May 26, 2008
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)
Posted by Jim and Nancy Forest at 4:14 PM
Wednesday, May 7, 2008
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.]
Posted by Jim and Nancy Forest at 4:46 PM
Monday, May 5, 2008
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.
Note: The photo is the first sonogram of Nancy's kidney after the transplant.
* * *
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 Björn 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 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.
* * *
Posted by Jim and Nancy Forest at 8:03 PM