…and hold the onions

A Journal

What follows is a journal of a live donor liver transplant written by two people, Chris and Shari. Those with a personal interest in the story should feel free to contact us by email at chris@bartonchronicle.com or sharon@sharonsiamon.com Please  put "onions" on the subject line. We will attempt to reply to any comments or  questions as time permits.

October, 1989

Chris:

This story begins for me on Canadian Thanksgiving (Columbus Day in the U.S.) It had become over the years an occasion for a reunion of Max and Aileen and their five children, of whom I am the middle child, age 45. The year before had been the big one, a celebration of their fiftieth wedding anniversary.

The 1989 meeting was in Ottawa at the home of my younger sister, Sylvia. Shari arrived from Brighton with her family and a serious itch. She was pretty sure it was a reaction to food. Apples were the current suspect.

November, 1989

Shari

The photos from that summer show me scratching invisible itches. We had a lot of fun on our 26 foot old sailboat, the Meren Neito, that summer, but I remember wondering why sailing was so exhausting. I would never have gone to the doctor complaining of a vague itch and fatigue, and if I had I'm sure he wouldn't have diagnosed my liver disease.

It took a crisis to get a diagnosis, and in retrospect, it was my first very lucky break. I had been doing a school reading tour in Guelph, an hour west of Toronto. The day was long and tiring, and I had a bad cold. By the time I was on my way back to Toronto, I was buzzed with weariness, but I didn't guess there was anything really wrong until I couldn't eat. I 'm always well enough to eat.

To be in such familiar surroundings -- the 401 in a car full of teachers after the reading, the

Royal York Hotel trying to connect with a writing partner, Union Station washroom, wanting to just lean against the wall and die, the train to Brighton, in and out of the car to Trenton hospital all weekend.

Over the weekend, on a variety of antibiotics to cure my cold, I turned bright yellow. When I mentioned it to the emergency room doc in Trenton, they did a blood test. I remember the doc saying "Oh, shit!" Then a mad ambulance ride to Kingston, throwing up, alternately freezing and burning, with long-distance truckers coming close for a look when I threw off my blankets and the ambulance attendant, who looked like Amy and I laughing hysterically at the lengths men would go to for a flash of flesh, the Dr. in Kingston saying angrily "Where is this woman's husband?"

Then I got scared. My husband, naturally, was at home with our ten-year-old, in Brighton. And I was relying on the kindness of strangers to pull me through whatever this strange ailment was. After a week of probing and poking and tests, it turned out to be primary biliary cirrhosis. It was just a name, then. I asked about the symptoms, was told I'd need a transplant some day, and sent home.

PBS is rare (2 in a million or so) and ordinary (Toronto Hospital Transplant team sees us as a small but numerically steady population of mostly women, mostly middle-aged with itchy skin). We have an auto-immune liver diease. We're not very exciting. Our disease can be slowed down with a new drug, but apparently not halted. Sooner or later we die or get a transplant.

Chris

I had no idea Shari was in serious trouble until she called to tell me she had primary biliary cirrhosis. (I would forget that full technical name on the spot, and not recover it for almost a decade.) There was little Shari could tell me about it.

What I remember most clearly from that conversation was a request.

"Please," Shari said to me, "I don't want you to think of me as your sick sister."

I tried to honor that in the years that followed, not asking about the illness, waiting for Shari to volunteer rare bits of information.

December, 1989

Shari

By a weird coincidence, there was an article in the local Brighton paper about a woman with PBS who had started a support network. One of those coincidences that would be unbelievable in fiction, given the rarity of the diease. I called her and heard about a new drug study just starting up in Toronto.

This was good news. The liver specialist my husband Jeff and I saw in Kinston was full of gloom. My life expectancy was about five years, he told me, and the transplant success rate about 75%. I was ready for a more upbeat doctor.

Chris

I remember hearing something on the radio about a support group for people with Shari's disease. When I mentioned it, Shari said she had been to one of its meetings, and found it too depressing to return. Everybody there was dying, she said.

Shari is tough, she lived carefully, and the disease made slow progress. She remained very busy as a children's author, racing formidable deadlines to turn out whole series of nicely written, imaginative and well-researched novels, and a particularly successful spelling book.

January, 1990

Shari.

In January my local doctor referred me the the Sunnybrook health centre in Toronto, where they were conducting the drug study on the treatment of primary biliary cirrhosis.

This was my second lucky break. Dr. Chris Pappas was young, energetic and hopeful about this new drug, Ursofalk. I spread out pictures of my three daughters, aged 10, 21 and 23. "I have a lot to live for," I told him. "And five years is not enough."

We knew after my blood test three months later that I must be on the drug, not the placebo. My bilirubin and other blood results were dramatically improved. I started to feel better.

I had a long talk with my sister Beryl in California. She has had an auto-immune disease for over twenty years, a rare collegen disease that lands her in the hospital twice a year and gradually incapacitates her. But you'd never know it. People who've met Beryl don't notice that she walks with a cane and two knee braces. It's her laugh and personality you notice and her vivid and instense involvement with life. She was my inspiration. She was also someone I could really talk to. "The hardest thing to get used to with one of these damned things," she told me, "is the word "chronic."

And she was right.

January 1992

Shari.

At the end of two years, the drug study concluded. Dr. Pappas moved on, to a hospital in Pennsylvania. I was referred to Dr. Laurence Blendis at Toronto Hospital. This was break number three. Almost his first words, on reviewing my file, were "There's no reason to die of this disease." Boy, did I cling to those words for the next eight years.

August 1998.

Shari

Feeling better than at any time in ten years. Go on a wilderness horse trek in the Alberta mountains, and though I am pathetic at riding, have a fabulous time. It's the absolute best. I'd ride a yak to get up there and see those mountains, and the food is great too! I can claim it as research for a trilogy of wild mustang books for a Norwegian publisher.

Also sign up for a King Arthur trip between Christmas and New Year's in England. It's the last year it will be offered and I've wanted to go ever since I first heard about it. I must have a sense of time running out.

November 1998.

Shari

I have met Frieda Wishinsky, great friend, great writing partner. She is also married to Bill Wishinsky, MD, a remarkable family practictioner. Everything from here on in is thanks to Bill. After he helps me through a salivary gland infection I decide he is the best doctor I could have on this planet, despite the complications of being a friend and the husband of a friend. He agrees to take me on, and in November finds evidence of an enlarged spleen and suggests that Dr. Blendis should redo a gastro scope he did a few years earlier. Fine, after the King Arthur trip.

January, 1999.

Shari

The trip to Arthur's England is wonderful, except for the last day, when we go through a "rebirth ceremony" crawling through an ancient tomb on the slopes of the Golden Valley in Wales. A bit too new-agey for me but very emotional -- the small group of Arthurian pilgrims has become quite close by this time, and Joan Bodger, a fellow children's writer, has taken us to the secret and sacred places she's discovered here over forty years of exploring. She wishes me my deepest heart's desire in the coming year -- success in my career. This is so off the mark that I get a frozen smile on my face, I suppose.

"Don't smile," Joan badgers. "Feel it." What I'm feeling is that I wish for another year of good health. Afterwards I realize how unfair it is to expect Joan to know about my state of health. It's not something I talk about to people I don't know.

January 8, 1999.

Results come back from the "surveillance gastroscopy"

This patient with primary biliary cirrhosis has been on Urso since 1991.

Her bilirubin has very slowly increased from 17 at that time to 32 today, but she has developed evidence of portal hyperstension with enlarged spleen and decreased platelet counts. We therefore repeated a surveillance gastroscopy, the previous one being in 1996. During this period of time, her varices have increased from grade 1 to grade II or III, whereas her portal hypertensive gastropathy has not changed at grade i. In view of this, she will be started on Nadolol 20 mg daily, and her dosage will be controlled by Dr. Wishinsky. We will review her in two months time.

L. Blendis, MD

No more wilderness horse trips. Instead, an appointment with Dr. Lilly, of the transplant team. Ouch.

April 1999

Shari

I was put on the transplant list, number 118. The doctor explained that they put PBC patients like myself on early, because the wait is up to two years. Sounded good to me. I felt relatively fine -- the symptoms that had led to being on the list were not painful or even

noticeable, although the bata-blocker to counteract them certainly was. It felt like lead weights in my shoes. I can't really see how it would help you play the violin, or chess better, but it ceratinly slows down a good brisk walk.

**********************************************

The following are Shari's journal entries from May 25, May 26 and June 2 of 1999

Shari

9:00am

First day at Toronto Hospital for Bone Density at 9:30am then Ultrasound at 11 followed by Pulmonary Function at 2:45. I arrived 35 minutes early by TTC. At this point I'm trying to figure out where everyone is. There is an empty feeling in the halls and waiting rooms. I'm on the wrong floor says a slim woman in the one open office. Down to the depths where a hand written Bone Density sign is pasted to a door. "Is this the bone density testing room? It says in my book Room 803 ground floor." "Didn't Cherry tell you? She was supposed to phone everyone tell them we hadn't moved yet." So now I'm in the right place, still early and with the luxury of a washroom at my disposal but strongly feeling the status quo division between staff and patient. Necessary for their survival but it makes the patient feel rather invisible.

10:10 Ultra Sound Waiting Room

A one hour wait. In the meantime the bones in my spine and hip have been tested - an easy test but with scary implications. Following the transplant I will be on the steriod prednizone for the rest of my life (along with a slew of anti-rejection drugs). This will weaken my bones - so they want to make sure you have strong ones to begin with! The effects of prednizone stir in my memory. Does this mean my face will always be puffy? Why do I sense this will be the least of my worries? I'm trying for calm but on the way up I trip over the oxygen tank a lady is hauling and bump into another woman struggling to get on the elevator with a cane. I become overwhelmed with feeling klutzy, disorganized and all thumbs.

1:05 Queen's Park Crescent

Well, that's done. I'm sitting here outside Queen's Park, facing the University of Toronto, under a chestnut tree shedding blossoms that blow about in the wind. It's cold and I'm struck by how useless I am without food or drink. Stumbly. The trees are forty years bigger than when I went to U of T. The sandstone is pinker on Queen's Park. The towers of University College poke over the trees, a truck reading "Great minds for a great future" rumbles up from under the campus bridge. Must go. Too cold to sit. Off to find Pulmonary Function lab - maybe they'll take me early.

2:20 - Pulmonary Function Lab

I've been here since 1:30 - I guess they're not taking me early. The pulmonary lab is as noisy and effortful as the bone density was quiet and easy. I look around at my fellow passengers. A large young woman sits across from me eating donuts and wearing a t-shirt that says, "Mental anxiety, mental breakdowns, menstruation, menopause - ever notice all our troubles start with men?" An older Anne Bancroft type sits to my right staring opening at all of us, her eyes twitching nervously. It hits me that only children have the luxury of staring at strangers without causing alarm.

I go up to the desk to ask where the bathroom is and to remind them that I'm here. The tests begin. "Hold your breath, blow out hard, more, more, more. Deep breath, hold it, hold it longer longer, now let it all out." In one test you're locked in a booth, nose blocked as you pant for seemingly non-existant air. Not good for claustraphobics. This is to test small airways. Finally they take artereal blood from my wrist to see how much oxygen is in my blood. Then they listen to the travels of my blood from my veins to my liver - checking all my internal organs. Quite the efficient team. But not a fun job. They must go home and want to bathe and never talk.

3:45 Done!

Drinking Café Latte's with a poppy seed muffin and taking several deep breaths.

Shari

9:23am Nuclear Cardiology Stress Test.

Stress, well I guess! I thought I'd be done by 9:30. Didn't read my liver manual carefully - there is a three hour wait after the test and I won't be done until 12:15. But I have a lunch date at 12pm! I am frustrated by my confused planning. The nurse acknowledges that the Stress Test center is a stressfull place. She commends me for admitting that I hadn't read my manual. Most patients just get angry and take it out on the staff.

This lab has its own atmosphere. Jasmine the tech says they do 2-3 liver transplant "work-ups" a week! Amazing. I get the feeling that I am very lucky to be able to grab this good window before our health system collapses. I take all the various tests. The resting test, the dye injected into the vein test, the treadmill test while dye is entering veins and on and on.

June 2, 1999

Echo Heart Test

Another week and I'm back. I think I'm not nervous but I get my purse straps tangled in the bathroom door handle, drop my notebooks on the bathroom floor and somehow lose an earing.

Quiet waiting room this time. I hand in my health and hospital cards - my passports to the mysteries beyond the swinging doors. Then I wait. My mind drifts to the book I read recently about the woman who invented a strong right-hand man to lean on in times of medical trauma and weakness. This fantasy male, father, brother symbol to lean on when you're too weak to do it yourself. I've never felt the need for that. If I had to invent a "helper" I don't know what shape it would be, but not that.

Next… to Cathy Whytehead - Transplant Coordinator

Why am I dreading this test the most? I want them to like me? Afraid of making a wrong impression? What to ask? What skills? How can I prepare? And what do I say to the social worker when I meet with her at 2:00? I stare at the provided booklett. It seems vague compared to some of the others.

"Why do I need this appointment?"

"The Transplant Coordinator is a nurse who arranges the assesment with the transplant doctors. This T.C. will talk to you about the transplant process, your involvement in the follow-up care and long-term risks and complications of the transplant."

I feel small in this vast building, with its wings named after medical pioneers dedicated to prolonging, mending, improving on all of our tiny little lives. All this skill. Maybe that's why the patients feel invisible. The staff have the skills - they are the subject, we the object in "Pedagogy of the Opressed" terms. That is what today is about - a gesture, an attempt for the practitioners to see the reality of the patient.

I saw the Imax film of Everest the other night. The lecture that followed said that people like me who climb mountains and ride horses without skills and apprenticeships are fools. I agree, but sometimes it's the only way to do it. You have to be prepared to pay the price, appearing foolish, inept and ridiculous in order to have that experience. The best things I have done were without prepardedness. Skill - is practice. Some things you only get to do once. Birth, death and a few things in between. Skill is the illusion (attempt) at control. I feel like I'm getting ready to climb a mountain not of my choosing. What I think I'll miss most is the redeeming beauty. Not that it matters much "in extremis". Beauty? Bah. Just get me out of here in one piece.

June 1999

I saw my doctor, Leslie Lilly, again. This time, he was a young man in a cold fury. "My patients are dying waiting for a donor!" he told me. The situation in our part of Canada was particularly grim, especially for type 0 +, my blood type.

We began to think about other transplant centres, where the wait might be shorter.

July 1999

Chris

Shari told me that she had developed a life-threatening side effect of a failing liver. There were varicose veins in her esophagus, the tube that links one's mouth to one's stomach. If they ruptured, she could bleed to death.

She had been warned not to stray too far from quick and reliable emergency medical help. And she had finally started the process of putting her name at the bottom of the list of candidates for a liver transplant. The bad news, she said, was that the list in Ontario was moving slowly. The livers come from people who die, usually suddenly in accidents, and donors are considerably outnumbered by recipients. A cruel -- though entirely natural -- Catch 22 in the process is that people who become critically ill get bumped to the top of the list. As long as she was relatively healthy, still living at home, still working hard, Shari had little chance of getting a liver. When she was finally sufficiently close to death, she would somehow have to find the strength to survive major surgery and the medications that would follow to prevent her body from rejecting somebody else's liver.

August 28, 1999

Chris

Friends had gathered at my home on the lake for what is laughingly called The Parker Pond Regatta -- a free-for-all race around the pond in small saiboats, sailboards, canoes, kyaks, and anything else that could be made to float. True to tradition, I had scheduled the event for a windless day. But I did my circuit in a kyak and had time to relax while the sailors struggled on. Conversation ashore turned to family matters and Liz, one of my best friends, mentioned a piece she'd seen in the New York Times about liver transplants from living donors. It sounded pretty unlikely to me, that a big chunk of the donor's liver would quickly grow to full size in the recipient's body, while the remains of the original would recover just as quickly inside the donor. But I was interested in pursuing the possibility.

A day or so later, Liz brought by some material she'd printed from the Web. I don't have it now, but recall that it came from Philadelphia, where surgeons had gathered to discuss the new technique and, more particularly, its ethical implications.

I recall reading that the proceedure was pioneered in Asia. There had been only about 100 donors in the U.S., and none of those had yet died.

But the proceedure troubled doctors because of that central tenet of their code of ethics: "First, do no harm."

How did that fit with performing major surgery on perfectly healthy bodies?

I wasn't sure why this was a new ethical problem, since doctors have been taking kidneys out of live donors for quite some time. Why would the liver be any different?

It would be some months before I got an answer to that question and, when it came, it wasn't entirely welcome.

September 1999

Chris

I don't recall the exact date that I called Shari to discuss the idea. It must have been in early September. I do recall that she was pretty dubious. Would it work on someone with her particular condition? Were we compatable enough to give a transplant a chance to work? Was my blood type O+, like hers? Was I out of my mind?

I didn't know my blood type, and was surprised to discover that the doctor I'd been seeing for about 20 years didn't know either. The answer would require my first hospital visit; my first poke.

The lab technician at the St. Johnsbury hospital said firmly that she couldn't tell me my blood type. That information could only go to my doctor. So it took about a week to determine that my blood is O+. Shari and I were over the first tiny hurdle.

The specialist who concerns himself with her liver at Toronto General Hospital, Dr. Leslie Lilly, was receptive to the idea of replacing Shari's liver with part of mine. Toronto General specializes in organ transplants, and was open to the new proceedure.

Thus came my first telephone conversation with Kirsten, formally Kirsten Lewis, RN, transplant coordinator at the hospital's Mutli Organ Transplant Program. She proved to be a brisk and cheerful woman with a sense of humor and that crisp Canadian accent that I must have had once, myself. She said she would fax down a list of the blood tests Dr. Lilly wanted to see.

It was a very long list, mostly Sanscrit in the doctor's sprawling hand. The letters that caught my attention were HIV. These people were going to be very careful.

Back at the lab in St. Jay, the technician armed herself with a fistful of sample vials and went to work. Again, I remained pretty much in the dark about the professionals' assessment of my health. The results went back to the office of my general practicioner, Dr. Tim Thompson, and were faxed to Toronto General from his office.

I did learn that the results were good enough to move us on to the next set of questions. A big one was money. Shari's part of the operation could be covered under OHIP, the Ontario Health Insurance Plan that covers everybody in that enlightened country. But what about mine?

I made some calls into the morass of private health insurance administration in the U.S. to see if my policy would cover such a proceedure. I never got a final answer, but the chances were slim. Elective surgery is not covered by my policy, and a partial liver transplant seemed pretty elective, at least from the donor's point of view.

Friday, October 22, 1999

Chris

Communication with Toronto is sporadic. When I call Kirsten's number I get a machine. She seems very good about calling back, typically catching me sometime after 5 p.m. She has promised to send me a lengthy questionnaire about my health and habits. This Friday afternoon, I decide to see if email will link us more quickly. I send a quick query about whether she could send the questionnaire by email.The reply comes promptly on…

Saturday, October 23, 1999

Good Morning, I received your message last evening, thank you. It certainly seems as if E-mail would streamline our communication. I will enlist the assistance of my secretary and try to forward the questionnaire on Monday. I am unsure of how to do it as we just [2 days ago] had new e-mail software installed. I have sent the paper copy in the mail with the information brochure. I also met your sister on Friday when she came to see one of my colleagues. I have asked the transplant program manager to explore the reimbursement costs for your donation under Sharon's health insurance and he recognizes this as a priority. I am not concerned about time frame as you have taken the initiative to get a fair amount of the evaluations completed. From my view, I would think it's reasonable to clarify that your health costs are covered before undergoing any additional investigations. Please give me your thoughts on this.

Kirsten Lewis

One by one, Shari and I seem to be getting over these hurdles. The possibility is becoming a reality. I talk to my four children about what might be happening. Fabian, who had just been pretty much flattened by a six-hour reconstructive operation on his knee (flag football injury), urged me to get in the best possible shape for surgery. The effects would be quite beyond my imagination, he warned me.

Abigail listened quietly over the phone, then said this:

Remember, no matter what happens, Shari will still be your big sister.

I don't know quite what to do with that wisdom. But I can take Fabian's more practical advice. I locate a Nordic Track ski machine, used, for $50. I have an affection for cross-country skiing that borders on the passionate, so this seems a natural choice.

But it doesn't get a lot of use. In some of our many phone conversations, Shari and I discuss the odd fact that, in the face of this very exciting and rather dangerous proceedure, we're letting ourselves go to hell. I already weigh more than I should, or want to. But I keep eating everything I can find at a most immoderate pace. I keep drinking, too, a habit I had dropped for six years, then picked up again during an 11-month stint in Eastern Europe that ended about a year ago. We don't know why we're doing this. Perhaps because we feel like the object of these proceedings, rather than the subject, and what we do with ourselves doesn't seem to make a hell of a lot of difference.

Monday, November 15, 1999

Chris

This date is only approximate. Kirsten calls to say the money issue has been resolved. Shari's insurance will pick up my medical costs. The blood tests were good enough to justify yet more medical investigation. When could I get to Toronto for more tests?

This week, I say, if you can set it up. We agree on the following Friday, and I call my travel agent to reserve a Montreal-Toronto ticket on Via Rail.

Friday, November 19, 1999.

Chris

When Shari guides me to Kirsten's tenth-floor office in the bowels of the huge collection of buildings that is Toronto General Hospital, the following crisply typed schedule is handed to me:

0800-registration and hospital card

0830-abdominal ultrasound

1000-appt with R. Jeffries-social work-10 Eaton (Sharon knows the office location)

1130-CT scan-register with x-ray on 1^st floor Norman Urquart

lunch

1300-chest x-ray on 1^st floor Norman Urquart

1330-lab work, urine test, Diagnostic Test Center, ground floor, Eaton Wing

1500-appt with Dr David Grant (surgeon) 10^th floor NU Wing, check in with reception

I like Dr. David Grant because he hauls his old anatomy text down off the shelf to show me what a liver looks like, and approximately what he plans to do with mine. He assures me that, while the live donor transplant is new stuff, Toronto General's surgeons pretty routinely open people up to remove part of a diseased liver. Nothing new about my half of the deal.

Why, I finally get to ask, is this an ethically different question than a kidney transplant?

Because the surgery is so much more extensive, the doctor replies.

He said he had ethical problems with living donor transplants when he presided over a transplant clinic at the hospital associated with the University of Western Ontario in London. These were overcome by the parents of a dying child who heard of the proceedure, and asked Dr. Grant to perform it.

He has recently come to Toronto to head the team at Toronto General. I get the impression that, if we proceed, we will be early on this hospital's list of living donor transplants. Dr. Grant asks me to consider all he has told me carefully, and let the team know whether or not I want to proceed.

Monday, December 6, 1999

Chris

Dr. Grant's office sends me a copy of a letter to Tim Thompson:

Re: BRAITHWAITE, Christopher

I have seen Mr. Braithwaite for consideration of living liver donation for transplantation. He has undergone a number of screening investigations. Most of these studies have been normal. The only findings of slight concern are incidence of trace blood in the uninalysis, multiple cysts including one that is slightly septated, and a small nodule in the adrenal gland. Our radiologist recommended a follow-up ultrasound of the 4 cm septated cyst in Segment 2 of the liver in 3-6 months. The lesion in the adrenal gland, which is likely a benign adenoma, could also be re-imaged at that time. I will leave it up to you to pursue the finding of trace quantities of blood in the urine.

That's good news, I guess. But I'm not crazy about that word "likely."

Saturday, December 11, 1999

Chris

Back in the dark for three weeks. This is difficult to talk about without whining, and nobody in that transplant unit deserves to be whined at. They work with a very long list of very sick people, only some of whom they can save from death. Meanwhile I am in fine health and Shari in pretty good health, for someone who suffers from this disease. But three weeks is a long time when so much is at stake. Finally I try to get directly to Dr. Grant with the following carefully composed email:

Dear Dr. Grant,

Communication seems to have broken down between Vermont and Toronto. This is to confirm that, after due consideration, I would like to proceed towards a liver donation to my sister, Shari Siamon. I conveyed that to Kirsten Lewis by phone on Friday, November 26, but have been unable to talk with anyone in the transplant program since then, despite several attempts. I hope the news on my tests of November 19 is good, and you guys are just busy. At any rate, would appreciate hearing from you.

Sincerely -- Chris Braithwaite

Monday, December 13, 1999

Be careful what you ask for. Dr. Grant's reply was brief:

Sorry Kirsten and I were both away last week. When we presented your case to our team, they recommended a liver biopsy before going ahead. We will call to arrange. David

Shari is upset when I tell her this news. She went through a biopsy in 1989 when they were trying to find out what ailed her, and liked it not at all. Not for the first time, nor for the last, she urges me to drop the whole idea if it seems more than I bargained for.

Tuesday, December 14, 1999

Chris

Things are suddenly moving very fast. Kirsten calls and we agree to do the biopsy in two days. The medical issue, she tells me, is an indication of rather too much fat in my liver. The biopsy, a taking of a small amount of my liver, will tell the tale. She sets up a morning appointment at Toronto General. I book an airplane, Montreal to Toronto on Wednesday. At Kirsten's suggestion I book the return on Sunday, to leave some time to get over what I sense will be a pretty invasive proceedure. Then comes another email:

Christopher, Percutaneous Liver Biopsy 16/12/99

Due to time constraint in our Medical/Surgical Day Unit I've had to adjust your time of arrival to 7:30am. I will provide the Medical Day Unit with the required orders and billing paperwork, it is located on the ground floor of the Eaton Wing across from the Diagnostic Test Centre. The biopsy is to be performed by Dr Lilly. As we discussed they will ask you to rest & monitor you for 4 hours following biopsy. Let me know if there are any additional organizational concerns.

Thank you,

Kirsten

To which I reply:

Dear Kirsten

You people do keep ungodly hours. Perhaps you could retire to journalism. Late nights, but rather civilized mornings. Thursday morning doesn't promise to be very civilized, but I shall present the corpus as requested. Hope to see you.

Till then --Chris

Thursday, December 16, 1999

The biopsy is much less traumatic than I expected. Dr. Lilly, a slender, peripatetic and friendly man, freezes my right side with the sort of needle my dentist has used so often, then makes a quick, hard jab with a very large needle. He shows me the result, a slender spiral of red meat, and heads off to deliver it to the hospital lab. That will help, Kirsten tells me later that day. When the doctor delivers a specimen in person, results come quickly.

I feel fine after four hours of lying around getting my blood pressure checked and a couple of regular Tylenol. Lucy flies in from Ipswich on Saturday, and the rest of the weekend is spent pleasantly in Toronto, visiting with younger brother Colin and his family, with Shari's daughter Amy and her family, which includes grandchildren age 4 and 6, and with our mother, Aileen, who recently moved into an assisted care home up on Bloor Street.

The prospect of having two of her children undergoing major surgery in adjoining operating rooms is pretty tough for Aileen. At 86, she has no wish to survive any of her four offspring.

Tuesday, December 21, 1999

Chris

Back home and back in the dark, I send this:

Dear Kirsten,

Breath bated, fingers crossed, hoping to hear soon.

Best regards -- Chris

(Or is it baited?)

To which Kirsten replies:

Dear Chris, I believe it is baited. I want to confer with Dr. Grant & will call you before the day is out.

Kirsten does call that afternoon, the busiest day of the newspaper's weekly cycle. The fat content of my liver is between 5 and 10 percent. The doctors deem that too high to be safe for transplant. The transplant is off.

I call Shari immediately with the news but she is out, so I leave a message that she should call, that I have news. When we talk later that night she tells me she didn't really need to call, the tone of my voice said enough.

I have long held the theory that when you can't make an important decision you should toss a coin. The point is not to leave the decision to chance, but to try and capture the emotion you feel when the coin comes up heads or tails. Then act on that emotion.

This is such a test for me, a chance to say, "Well I tried, but the doctors have spoken," and then to feel great relief.

I don't feel any such thing. I am sad, upset, even a little angry. I feel the way one feels when a job doesn't come through, or the way I felt in the early '80s when I didn't make the final cut for a splendid journalism fellowship at Stanford University. Rejected.

Late that night as we put the finishing touches on the last paper before Christmas, someone notices that we don't have our traditional season's greeting on top of the front page. Instead I have supplied a simplified and much reduced version of a photo that appears inside, a picture of a sheep. "Just say, 'Baa, humbug!'" I suggest. Fortunately nobody takes that suggestion seriously, and the season goes unmarked.

Monday, December 27, 1999

Chris

Liz has another part to play in this story. She and her husband Jeff have scheduled their annual Christmas party for this night. Among the guests is my doctor, Tim Thompson. I greet him across a very crowded room, have a pleasant chat with his very pleasant wife Merle, but decide not to burden the good doctor with my sad medical history at a party. I go home early, still depressed.

Tuesday, December 28, 1999

Chris

When I get into work to wrap up the last issue of the millennium, there's a message to call Liz. She tells me Tim asked her for news of the transplant. When he heard about my unsatisfactory liver he said that could be easily fixed by diet and a general improvement in lifestyle. Call Tim, Liz says. I call Tim at home and get his advice first-hand. At mid-morning, I send an email to Dr. Grant in Toronto:

Dear Dr. Grant,

I just had a conversation with my doctor, Tim (Lloyd) Thompson about the results of my biopsy and your team's decision against a partial transplant to my sister Sharon. He said the specific problem, fat in my liver, could probably be cleared up in three to six months on a rigorous diet. I am writing, with his encouragement, to ask if the team would be willing to reconsider if I presented myself for another biopsy after such an attempt. Such a deadline would also provide me with motivation to get into better shape for surgery. There would certainly be no down side to such an attempt for me, regardless of the outcome. The problem has been less a lack of willpower than a lack of snow so far this winter, since cross-country skiing is my chief form of exercise. I did go out an buy a Nordic Track, but seem to miss the wind in my face, and it makes no sense at all to my dogs. Although I do need to lose some weight, I have always regarded myself as physically robust and have so far enjoyed a life remarkably free of medical problems. Tim has been my doctor for at least 20 years, and I don't think he would recommend major elective surgery if he thought it presented a serious risk to my health. He would be happy to discuss the matter with you. The only technical problem I can think of is that I will turn 56 on March 6, so might have to get grandfathered in under the age limit. At any rate, I wanted to let you know of my deep disappointment at the team's decision, and of my willingness to try and overcome any obstacles that can be overcome. I'll forward a copy of this

note to Kirsten.

Best regards -- Chris Braithwaite

Wednesday, December 29, 1999

Kirsten's reply is prompt and cheerful:

Hi Christopher, I've read your note & think that this will give Dr. Grant food for thought. I did discuss the team's decision with Dr. Grant & he wished to discuss it further with the doctors involved--he has yet to give me his final decision because your case is not cut & dry. Remember-no news is good news. Thank you for the copy of the note, hopefully will have an answer for you the beginning of next week.

Seasons Greetings, Kirsten

I have an appointment with a nurse-practioner at Tim Thompson's office to get a new prescription for exema, which is threating to run away with what's left of my hide. She puts me on the scales and, for the first time in my life, I weigh in at over 200 pounds. That does not sit well on a five-foot, six-inch frame.

Friday, December 31, 1999

Chris

Lucy drives up from Ipswich and we spend a quiet New Year's Eve, agreeing to pass up a neighborhood party. I don't drink any alcohol (Lucy never does) and this year's resolution is obvious. I have never kept one before.

Wednesday, January 5, 2000

Chris

The paper has taken the first week of the new year off, and I have stayed away from the office. I go in after a meeting with Tim Thompson to discuss diet and exercise. He is in favor of both. At the office, there is email waiting:

Chris - I agree that there is little downside to trying to improve your fitness and lose a bit of weight over the next two to three months. It is likely, but not guaranteed, that this would reduce the fat content in your liver. If you are successful in losing weight, I am sure that our team would be prepared to reassess your candidacy for living donation and consider repeating the liver biopsy. Best wishes for the new year. David Grant

To which I reply:

Dr. Grant,

Just back from a week off, and am delighted to get word of the reconsideration. Met today with Dr. Tim Thompson and he reiterated his advice that diet could help with the fat liver problem; also seemed confident that in a more general way I am constitutionally fit for surgery. Kirsten also wrote to say there would be a review of the first biopsy this week. I want to make it clear that if it looks ok to you guys I am prepared to proceed.

Regards -- Chris Braithwaite

And from Kirsten:

Hello Christopher, Reply #2

Further to Dr. Grant's e-mail response to your request your biopsy will be revisited next week. Will keep my fingers crossed.

I reply:

Hi Kirsten and Happy New Year. The newspaper appears to have survived the Y2K kafuffle, assume the hospital did too. Good news about the biopsy review. Waiting for more.

Best wishes and thanks -- Chris

Thursday, January 6

Brother Colin and his son Findlay arrive from Toronto, vanguard of a major family get-together. Colin and his clan took part in a major bonfire on a frozen lake in Alberta on a New Year's Eve long ago, and he hoped to greet the new millennium with another one on Parker Pond. Colin turned out to be too important a computer fixer to get out of town when 2000 arrived, so we have rescheduled the event for this weekend. I make a big pot of spaghetti and try not to eat too much. Pass up Colin's excellent Canadian beer with the explanation that my liver is on a diet. So far, so good.

Friday, January 7

Chris

I take the day off and Colin, Fin and I start working up a bunch of softwoods that fell in a couple of freak fall storms. We set out to built a rough sort of log cabin on the lake, and fill it with the dry scrap lumber that used to be the railing on my deck.

The rest of the clan assembles: Shari and Jeff from Toronto, with their youngest daughter Becky. Their middle daughter, Kate, has escaped from Manhattan and is already in residence in a tiny camp across the pond. Sylvia arrives from Ottawa, to be followed by her husband, Marty, the next day. My children wander in and out: Sebastian, who lives and works in the neighborhood, Fabian from southern New Hampshire, Abigail, who just left a job in New Hampshire and will leave Monday for Nicaragua, and Martha, still on Christmas break from Tulane University in New Orleans.

Saturday, January 8

Chris

The bonfire is a spectacular success. Lucy and daughter Jessica arrive moments before we touch the thing off at 6 p.m. Shari seems well, and we are both excited about the prospect of getting another crack at this thing.

Monday, January 10

Chris

Kirsten calls to say the doctors want to see the results of more blood tests in a month.

A quick exhange of email follows:

As per our call these are the required lab tests:

 -total bilirubin, AST, ALT, ALP

 -chol., trig., LDL, HDL.

If you are contacting the labs these abbreviations are relatively universal & should suffice.

Talk with you tomorrow.

Kirsten

Hi Kirsten,

The Braithwaite clan survived a very exciting bonfire on Parker Pond in West Glover, Vermont, on Saturday night. Sobering experience. Great fun. Shari made it and seemed fine, though tired. I have scheduled these tests for Thursday, February 10. Will have the results forwarded soonest. Is that timing ok?

Best regards -- Chris

Glad to hear you had a good dry time. I will keep my eyes glued to the fax machine.

Take care, Kirsten

Thursday, February 3, 2000

More mail from Kirsten:

Hello Christopher, I hope all is well with you. Just wanted to touch base with you & find out how you are doing with your new regimen. Drop me a line when you have a moment.

Kirsten.

I reply:

Hi Kirsten,

Noticed this morning that I'd gained two holes in my belt. Not sure anybody else would notice. Mother Nature has been most cooperative, finally providing lots of snow, so the excercise comes easy. Low-fat diet probably not as absolutely rigorous as it should be, but certainly better. No alcohol, no problem, except my poker game seems to have suffered. Tests set for a week from today. Is it reasonable to expect significant change within a month? Certainly hope so.

Thanks for staying in touch -- best to all -- Chris

The date of this is unclear, but Kirsten's eventual reply was as follows:

Hello, Ever the one for challenging questions, is it reasonable to expect significant change--hopefully so. Sounds as if you're doing great. Any quantitative proof (other than girth) of your progress? Sincerely now, keep up the good work. Kirsten.

Thursday, February 10, 2000

The hospital's lab technician is collecting samples at Tim Thompson's office today. I step on the scales on the way out, and the news is good.

I email Toronto:

Hi Kirsten,

Took the blood test this morning, ten pounds lighter but no smarter. Expect results by fax, direct from the lab at Northeastern Vermont Regional Hospital, as soon as tomorrow, Friday, February 11. Fax will go to Dr. Lilly. If you don't hear from them soon let me know and I'll try to bounce them up and down. Fat chance.

Best regards -- Chris

Time passes very slowly after the blood test, though more than a week after the tests a brief email from Kirsten says the results were very good.

Thursday, February 24

Chris

Finally, a phone call from Kirsten. The blood tests are so good that the doctors don't want the second biopsy. They are prepared to proceed with the transplant.

A couple of technical problems remain to be resolved, Kirsten adds. The team wants to see another urinalysis, to make sure the blood has disappeared. And I need to bank four units of my own blood, in case it's needed in surgery. That will take some time, at least a month. And since blood is only good for 35 days after it's drawn, surgery will have to be scheduled before I can get started. We discuss the problems of moving blood so far, across the Canadian border. Kirsten suggests using a Montreal hospital, and I agree. She'll try and make the arrangements.

I am able to arrange to deposit a urine sample at the St. Johnsbury hospital that afternoon, and the technician assures me the results will be faxed to Toronto today. I email Kirsten to let her know. Things are finally moving.

Saturday, March 11

Chris

Shari's birthday today. No further word from Kirsten, and it has been more than two weeks. I resort to email again:

Hi Kirsten,

Reading in bed this morning in a most self-indulgent way, I came across one of those lines that leaps from the author's context into your own. It's from John D. MacDonald's great character, Travis McGee:

"For perhaps the first time in my life I appreciated the corrosive effects of total uncertainty."

This is for the MDs, not for you. But you might let them know that sometimes "No news is good news" just doesn't cut it.

Regards -- Chris

Monday, March 13

Jeff sends me a copy of a message Shari sent to Kirsten today:

Good morning Kirsten. My brother Colin has offered to bank blood for Chris. He has the same blood type and is a regular donator to Canadian Blood Services. Would it be possible to use Colin's blood and avoid this long delay? Hopefully, Shari

Tuesday, March 14

Chris

Kirsten calls. No discussion of detective fiction. Is she a little cool? I can't really tell. The urine sample was fine, she tells me, but the doctors want two more tests: an angiogram and an MRI. The former will send a catheter into me through an artery in my groin to explore the plumbing of my liver, which Kirsten says is non-standard. The MRI (magnetic resonance image, I think) will be of my brain. Have they decided to test the supposition that anyone would have to be crazy to volunteer for something like this? No, says Kirsten. People with cysts in their organs my also have something in their brain called a Berry aneurysm. That would presumably rule out major elective surgery. The doctors want to check. She'll let me know when this can happen.

This is sobering news. It leaves me with the odd suspicion that someone on that team of doctors really doesn't want to do this thing, and will keep throwing this kind of stuff at us until we give up. But it doesn't take long to overcome this paranoia. I know what I have known all along -- as a potential donor, I am important not only to Shari but also to thousands of people who might live if living donor transplants become an accepted proceedure, or die if they are judged too dangerous to the donors. It is not only their deep affection for me that makes these doctors so careful. It is a reasonable concern that an over-weight, over-age donor could die on their operating table and cast serious doubt on this very promising technique. I'll do their damn tests.

That afternoon an email arrives from Toronto:

Hi Chris,

This message is to update you with some positive news--as per the contact from Canadian Blood Services, one of the blood letting stations in Montreal is looking into this--I will follow-up tomorrow. As far as Collin banking blood for you--it is not done in the adult population; appropriate term for same is "directed donation". I need to ask you a list of unusual questions as screening for the MRI--let me know when ~ is a good time to call you in the morning.

Have a good evening,

Kirsten

Wednesday, March 15

Chris

I had company in that dark place I visited yesterday. From Shari:

Dear Chris,

Maybe this should be the first and last entry in our journal. I think you have a right to whine. This live donor transplant has become some kind of tortuous journey in which virtue is rewarded with pain for you and just the cotton wool of waiting for me. I tell you honestly that nothing in the last ten years of liver disease has hurt a fraction of what they're proposing to do to you now. This is unfair, and unbalanced. You have my most sincere and heartfelt good wishes if you just tell them to go stick a wire up their own groins! I'm angry about this. I hadn't realized how angry until I started writing this. They say it's for your sake -- If I had known what they would get up to "for your sake" I would never have agreed to this process.

We can drop it, anytime. Love, Shar

To which I reply:

Dearest Shari

Oh pooh!

Remember the million dollar man on television?

That's going to be about what those bozos will have invested in me. Will come a point, they won't be able to afford not to do it. Chin up.

love -- Chris

Shari's reply, long lost in the ether of the Internet, turned out to be:

Dear Chris,

Thanks for your crazy response, and for being crazy, generally. I wish I could wave a magic wand and all this mindless waiting would be in the past. I thank and bless you for your courage and humour, but I wish it were over...

Thursday, March 23

Kirsten calls at 8 p.m. The MRI is scheduled for seven o'clock Tuesday morning, March 28. To do it, I'll have to miss the heavy end of the week at the paper on a day's notice. I can only tell Kirsten I'll do my best to arrange it, but can't say a final "yes" without talking to the people who will have to fill in around me. Luckily I'd already arranged to swap my regular Tuesday stint in court with Scott, so I could work on a developing court story. A good chance I can get that written over the weekend.

Friday, March 24

Chris

I beg the staff's indulgence, get it, and send this off:

Hi Kirsten,

The substantially terrific people who work at the Chronicle quickly convinced me I'm not as indispensible around here as I'd hoped. So barring further complications at your end, I'll present the corpus at 7 a.m.Tuesday, March 28. Forgot to ask you about the little-gadget's-adventures-up-Chris'-veins thing. Shari says you are trying to work that out for Wednesday. That would be terrific.

Talk to you soon.

Regards - Chris

Saturday, March 25

I find a reply that Kirsten sent late Friday afternoon:

Hi Christopher,

I'll forward you all the specifics on Monday am. So glad we can do this. The "gadget" is referred to by us medical folks as a hepatic angio--I have already presumptively scheduled you for Wed. am. I may have a couple of other things lined up as well. I will call you later.

Kirsten

To which I reply:

Hi Kirsten,

Thanks for the good news, although "a couple of other things" is a phrase that leaves some room for nervous speculation. What's left, after the good doctors establish that I have a brain? All here anxiously looking forward to the answer to that question. If you communicate here Monday, it should be early. Plan to drive to Toronto the Good that day, and will be leaving sometime that morning. If this gets cancelled late, just have Sergeant Preston arrest me at the border.

Regards -- Chris

Monday, March 27, 2000

I thought I was joking about Sergeant Preston. Daughter Abigail and I pull out of town at noon, with eight hours of road ahead of us. We decide to pass up the quick, four-lane route through Montreal and head over the Green Mountains, across northeastern Vermont, through upstate New York and along the south shore of the St. Lawrence to the Thousand Islands bridge. The relaxed route puts us a bit behind schedule, but we don't have anything more urgent to do when we get to Shari's than go to sleep.

As we approach the border Abigail asks what we should say when the Customs guy wants to know why we're going to Canada. "Family visit," has got us through many times without hassel. But it had also been the simple truth. I think about it and say, "My first rule on crossing the border is to tell the truth." What a a pompous ass I can be.

"A family visit," Abigail tells the lady in the little glass box, "and my father has a doctor's appointment."

"What sort of appointment?" the lady demands.

"It's a complicated story," I say, and try to sketch the outlines.

"That is a complicated story," says she. "I want you to park over there, go through door number one, and give them this yellow slip."

Inside door number one I am directed to a desk that says Canada Immigration. It also says, "Officer on lunch break, back at 1800." It is now 5:30 p.m., or 1730 in border talk, and I lose it. I crumple the yellow slip into a ball. "Is there anybody else I can talk to?" I demand of the nearest Customs agent.

"No," she says. "Just have a seat over there and wait."

"This is fucking rediculous," I say.

That observation inspires a certain amount of official hostility. As I head out the door I am instructed not to leave the building.

Strained negotiations follow, before I am permitted to stand in front of their windows and smoke a cigarette. I am not, however, permitted to pace. A Customs officer steps outside to explain that, as a U.S. citizen, I have no right to enter Canada, and will just have to wait to provide a full and satisfactory account of myself to a busy, but replete, Immigration officer.

Said officer returns to her station promptly at 1800 hours and turns out to be very nice. I try to be nice, too, because it has occurred to me that if I don't get to downtown Toronto by seven o'clock tomorrow morning my brain, or increasingly obvious lack thereof, must remain a mystery to Canadian medicine. She has to have some documentation that will prove I can pay for any medical attention I receive in Canada, she says. I have none, but she is willing to try a phone call to Kirsten, perhaps even one to Shari. She takes their numbers.

But first she asks for Abigail's driver's license and observes, "You were born in the U.S. too." Abigail was, I point out, but I wasn't. Born in Saskatoon.

At that the young woman brightens up some, and asks when I was naturalized as a U.S. citizen. I take a guess at 1983. "Do you have anything with you that proves that?" she asks hopefully. I don't, just a U.S. passport that says I was born in Canada.

"I'll try U.S. Immigration," says my gatekeeper. "Maybe they have a record of you." She does, and they do, and she hangs up the telephone with a smile on her face. "You were naturalized in 1981," she says. Under a particularly enlightened law Canada passed in 1976, I remain a Canadian citizen. And Immigration officers have no right to ask returning Canadians if they can pay their doctor's bills. This resolution of the matter seems to please her almost as much as it does Abigail and I, and off we go. Abigail wants me to sneer at the Customs guy and say, "I do so have a right to come to Canada." But I'm above that sort of thing.

When you come home after the surgery, Abigail demands, and U.S. Customs wants to know if you left anything in Canada, what are you going to tell them?

Tuesday, March 28

Chris

Getting an MRI of your head is like being inside a video game. The noises are remarkable, both in variety and volume, though the earplugs provided by a very crisp technician help some. Then it's back to the lab for yet another blood test. This one, I think, is to see how much I will bleed tomorrow when they open that artery in my groin. Shari and I visit Aileen, where we are joined for lunch by Abigail. The rest of the day is occupied by a long stroll through the city, a ride home on the wonderful Queen Street car, and a viewing of a recent Academy Award winner in "Boys Don't Cry." A very sad film.

Wednesday, March 29

Chris

For the fourth time since November, Jeff speeds us into the center of the city and deposits Shari and I at Toronto General. I get poked. Not as bad as I feared. A quick shave of the affected area by a quick, brisk nurse, a local anaesthetic and a pretty interesting view of my insides on a big television screen. When he has steered the catheter into just the right spot the doctor, the nurse and the technician retreat behind a big window and I am instructed to stop breathing. As a pump sends a contrast dye through the catheter I feel a very warm sensation where I suppose my liver is and, on the screen, watch the quick emergence of a network of blood vessels. Sort of like a satellite view of the Mississippi delta.

"I can't discuss the results," says the technician as I am rolled out of that formidably equipped theatre. "That's up to the doctors. But I can say you get an A-plus in anatomy."

Some extremely nice nurses keep a close eye on me for four hours before I am sent home, with instructions to go to bed for the rest of the day and abstain from sex, tennis, and all other strenuous pursuits for 72 hours. I am obedient.

Thursday, March 30

Chris

This morning it's off to Toronto Western Hospital to make the first deposit in the Braithwaite Blood Bank. I get through the first two gatekeepers in reasonable fashion, and a third checks my height (unchanged) and weight (down to 180). But the fourth one shows some nervousness when I confess to a childhood bout with hepatitis A. Shari and I both turned bright yellow at the same time, years and years ago. This person will have to check with her superior.

"But you're just going to put the blood back into me," I protest. Yes, she says, but people will have to handle it along the way.

I am dispatched to the hospital cafeteria to load up on orange juice and muffins. That done, I ride back upstairs to find the crisis resolved. For the first time in my 56 years, I give blood. (I couldn't before, because of that hepatitis.)

I'm told that Toronto Western and I have a similar blood-letting appointment for April 20, which would put me off the job and in Toronto almost a week earlier than expected. I'm also told to take an iron supplement to build up the hemoglobin in my blood. Its level is excellent right now, I'm told, but the four transfusions will pull it down. Meanwhile, I'm to expect that the pills will constipate me.

That afternoon I stroll through the city with brother Colin. That evening Shari and I are treated to a Crosby, Stills, Nash and Young concert by Shari's eldest, Amy. She has something else to do, she insists, and can't possibly go to the concert. She bought the tickets last September. The concert is a fine one. But these giants of the '60s are variously stout and gray and balding. As the spotlights dance off of their pates, I am reminded of four friars who have grabbed a keg of brandy and climbed over the monestary wall. These are our contemporaries. Shari and I grew up with one of them, the son of our parents' good friends. How long, I wonder. How long can the wild ruckus last?

Friday, March 31, 2000

Chris

Before Abilgail and I pull out of town I talk to Kirsten on the phone. I'm dubious about these blood extractions. I'm unconvinced that a loss in my general condition due to four closely spaced blood extractions and the effects of constipation, outweighs the risk of a troublesome transfusion. Is this to preserve the Ontario blood supply, I ask, or to protect me from infected blood? It's entirely to protect me, Kirsten replies, and she insists that it's a wise precaution.

How likely is it that my blood will be needed? I ask.

Well, says Kirsten, the father who donated part of his liver to his daughter on Tuesday needed a liter of his own blood. I recall her telling me that he was a marathon runner.

I propose a compromise. I'll go to Montreal for at least the second round, and see how I feel. from the Ontario blood bank. Kirsten agrees that we can play this by ear.

Tuesday, April 4, 2000

Shari

Talked to Chris tonight - he's hard at work on the Chronicle. Reported that I'd had a message from Dr. Lilly's office that he needs to see me on April 20th "to go over all the information for the transplant." That sounds like a go. Chris still has no word from Kirsten as to where his blood banking in Montreal will be this week. It's amazing how communication seems to almost totally cease to exist between Chris and the hospital. I'm supposed to be doing book publicity on the 20th, so I'll have to change that app't with Dr. Lily if I can. It seems fantastic that a week later Chris and I might both be in surgery! Bought a dressing gown for the hospital tonight, but couldn't face slippers.

Wednesday, April 5, 2000

Chris

I call the hospital mid-afternoon and am quite surprised when Kirsten picks up the phone. She is having trouble coordinating the blood thing with Montreal. Could I do it Friday? Sure. Then a small bomb lands. Dr. Grant could do the surgery the week before the week of the 26^th. Would that leave me enough time to get my work taken care of?

I'm not sure. The problem is a chapter I've been asked to write for a book that the International Center for Journalists in Washington plans to publish. It's aimed at newspaper publishers in emerging democracies, and my chapter would be a revision of a booklet on advertising I published in former Yugoslavia in 1998. It exists in two versions, Serbian and Bosnian. The only books in the world with my name on them, and I can't read them. The chapter is promised for May 1, and it was already going to be a terrible squeeze to get it done by April 19. Under the new schedule, is there any chance at all?

Friday, April 7, 2000

Chris

No communication with Toronto yesterday, so no run to Montreal. Kirsten calls at the office, and I tell her I can't push the operation ahead. My schedule is just too tight. We agree, quite amicably, to leave it set for April 26.

Kirsten has been talking to Montreal, and they have agreed to call me Monday morning.

Monday, April 10, 2000

Chris

The blood people in Montreal know who I am, which is a pleasant discovery. They are concerned about the Hepatitis A, which is no surprise. The blood taking can be possibly Friday, maybe next week. Next week won't work, I tell them. Next week, April 20, I already have what was to be the fourth drawing scheduled in Toronto. Now it is the third, heading towards the second. They'll get back to me. I recall that I wasn't really crazy about the idea of giving blood four times immediately before surgery, so this is not an occasion for belligerence.

A quick note to Kirsten:

Good morning,

I called Montreal this morning. They have referred everything to a doctor. Hope to do this Friday at the earliest. That's fine with me, but I told them next week wouldn't help. Would be too disruptive of my rapidly shrinking schedule and, to my untrained mind, too close to the Thursday drawing in Toronto.

Yours in eternal optimism -- Chris

Tuesday, April 11, 2000

I find a reply, sent at 9:27 last night. Kirsten keeps terrible hours.

Good evening,

I am glad that you were able to get a hold of them. I will follow through yet again in the morning. You are quite right, it would seem rather counter productive to have you bank more than one unit per week--it is protocol here not to exceed that guideline. Your optimism is positively infectious.

Touch base with you tommorow,

Kirsten

Montreal calls in the afternoon, but I'm up in Newport covering court and don't get back in time to catch them. They probably want to see me at 9 a.m. tomorrow. So it goes.

Friday, April 14, 2000

Chris

I returned that call to Montreal on Wednesday morning, and received an invitation to bank some blood late this morning. So I drive up on a pleasant day and part with my second pint. Back in the office at the end of the afternoon I send a note to Toronto General:

To: Lewis, Kirsten

Subject: braithwaite's a pint light

Hi Kirsten,

Mission accomplished in Montreal today. In case I lose the paperwork, the unit number is 560-1-113012. Your letter accomplished a miracle at the Border. Can you write one that will get me into Heaven? (decidedly tougher assignment)

See you in about a week.

Thanks -- Chris

To which she replies:

Hi Chris,

So nice to hear you're pint lighter. Glad you had a nice border crossing.

As far as heaven goes, I am a practicing Catholic--but am not sure that would be helpful--could I offer you a run of the beads?

See you then, e-mail if you/sis need anything,

Regards, Kirsten

Saturday, April 15, 2000

A busy weekend without much time to think about losing pieces of liver. Two of my favorite people, Rick Nichols and Nancy Szokan, fly in from Philadelphia to look at the camp next to mine on the pond, which is for sale. They've been coming up for a couple of weeks at the end of summer almost every year since Nancy and I were Knight Fellows together at Stanford in 1984-85. There is a party, of course, though I make my poor visitors do the cooking. I get remarkably tired at about 10 p.m. and go to bed, leaving poor Rick and Nancy to see my guests out. A late effect of the loss of that pint?

Monday, April 17, 2000

Chris

I decide I need to consult with Kirsten:

Dear Kirsten,

Re. the Braithwaite Blood Bank, the Truth In Lending Law requires the following disclosure: I was exposed to some pretty bad colds around the shop on Monday, April 10. By Friday I was showing very mild (underline very and mild) symptoms: a sniffle. I felt fine so went ahead to Montreal. Didn't say anything to the nurses there, and passed the little temperature-blood pressure screening fine. Saturday had a mild sore throat (underline mild), but far from sick. This morning still sniffling, no sore throat. Walked a couple of miles, feel fine. I trouble you with all this because the nurse who drew my blood at Toronto Western warned me not to bank blood if I had a cold, because the virus would persist. I leave all this in your capable lap. If the cold gets worse over the next couple of days, does it still make sense to come up and give blood Thusday? What about exposing Shari? Etc., etc., etc.

It would be nice to talk to you about all this by phone, but I know you're busy, and e-mail will suffice. I've long said that it's lucky I'm so damn healthy, because I'm a terrible hypocondriac.

Best regards -- Chris

Tuesday, April 18, 2000

A bit of the familiar uncertainty returns. No answer yet from Kirsten. Talk to Shari this morning. She also has early cold symptoms, also is not hearing from anyone at Toronto General. Looking on the bright side, if Shari already has a cold, I don't have to worry about taking her mine. I guess I'll proceed to Toronto tomorrow as scheduled, with Shari's daughter Kate riding shotgun. (The reader should know that Kate is the person who puts this website together on Wednesdays. Because she is coming to Toronto, this journal won't be updated until at least Wednesday, May 3. If all goes as planned, that will be about a week after Shari and I undergo surgery.)

This is my last day at the paper, and I'm thinking I need to say something in print before I disappear. Not at all sure what to say. Then Nancy calls from Washington, where she works, and tells me to check the fax machine. The delightful result, direct from this week's paper:

Parting shot

I was just sitting down to tap out a fairly drippy account of my immediate future when a good friend, Nancy Szokan, saved the day. Here is what she faxed up from Washington, DC:

• • •

Living la Vida Liver

(With apologies to Longfellow, and to Chris for any errors)

by Nancy Szokan

On the shores of vast Lake Parker

By the shining Roaring "River"

Dwelt Chris Braithwaite, and he pondered:

What is life without a liver?

Thought he of his sister Shari

What she needed, he could give her?

Journeyed then to far Toronto,

Bringing with him one used liver.

Doctors stern examined Braithwaite,

Made a lab-rat of this sibling.

They considered cysts and sisters,

Then they turned to Chris, thus quibbling:

"Chris," quoth they, "lay off the cals, pal!

"Cut the ice cream, beer and blini!

"No foie gras* for sister Shari?

"Sherry needs a foie that's skinny!"

So he organized his organ,

Nordic-track'd, went on a diet,

And the shamans, re-examining,

Said: "Looks pretty good. Let's try it."

North heads Chris now, o'er the border,

Knowing that this won't be fun,

Guided by that ancient mantra:

"Half a liver's better than none."

Chris, we'll think about you often

As you greet the surgeon's knife;

We don't know much about your liver,

But we sure admire your life.

*For the culinarily challenged:

 foie=liver; gras=fat

• • •

The procedure, scheduled for April 26, is called a living donor transplant. I’m particularly fond of the "living" part.

For those who like long-winded accounts of other people’s operations, and have access to the Internet, the donor and the donee have collaborated on a journal. It can be found on the Chronicle’s web site:

http://www.bartonchronicle.com

See you all in a month or so. — C.B.

• • •

Wednesday, April 19, 2000

Up early today to try and wrap up my affairs, such as they are, before leaving for Toronto. Knocked off early at the Chronicle last night, about 10 p.m., but stayed up into the wee hours paying bills.

Leave town about 2:30pm with Shari's daughter Kate, back over the Green Mountains to cross from New York state into Ontario at Cornwall. Kirsten's magic letter works again. Kate is good company and a good driver. Get to Shari's about 11:15pm.

Thursday, April 20, 2000

Take the Queen Street car across the downtown to Toronto Western for a 10 a.m. blood deposit. A very nice nurse draws the blood, then sets out to track down the Montreal deposit of a week ago. As I'm leaving, she puts me on the phone with Anita of Canadian Blood Services. She says she has no idea where that blood is. Quebec uses a different computer system, she says. I should call Montreal and try to find it. I must have friends in Montreal who can help. This is surreal.

I catch the free inter-hospital shuttle bus to Toronto General, find Kirsten and tell her about the missing blood. "I was going to tell you about that later," she says. It's lost, "somewhere between Pearson (the Toronto airport) and Toronto." Even if she finds it, Kirsten adds glumly, she would throw it away. No way of telling where it has been, for how long, at what temperatures.

I wait a few minutes on the tenth floor for Dr. Tinmouth, who gives me a quick physical on behalf of the transplant team. Then it's down to the ground floor for a session with a pre-surgical unit. I rip the fresh tape off my left elbow so a nurse can draw three or four more vials of blood for the lab. An EKG. A visit with a nurse-practitioner from anesthesia. No food or drink after midnight next Tuesday. I talk them out of the chest X-ray by pointing out that I had one here in November.Back upstairs, Kirsten says that was far too long ago. Another is needed. She puts me through a nurse's workup. Have I got a living will? Hell, I realize, I don't have any kind of will. What about an "alternative decision maker?" Haven't got one of those either, but have them punch Lucy into that slot on the computer screen. Kirsten gives me another quick physical. The cold is still there. We set an appointment for 8:30 a.m. next Tuesday, the day before surgery, to see if it's gone away. I go back down to the first floor for that chest X-ray. Walk a few blocks down Elizabeth Street, through the clamshell City Hall to catch a Queen car home. It's raining pretty steadily, and the streetcar offers scant shelter. The window leaks steadily down onto my shoulder.I get back to Shari's and, at everybody's urging, climb into bed for a nap. Sleep well.

Friday, April 21, 2000

I have a 9 a.m. appointment with one of the three surgeons who will operate next Wednesday. At the breakfast table, on top of page 9 in yesterday's National Post, I read the following:

Canada's organ donation rate is falling far behind the growing numbers of patients on waiting lists for transplants. Statistics released yesterday by the Canadian Institute for Health Information show the donation rate fell by 5% in 1998 from the previous year. "The shortage is reaching crisis proportions," said Dr. Paul Greig of the Canadian Organ Replacement Register. "The number of patients who died on the waiting list was 107 in 1998 compared to 97 the previous year." Donation rates fell from 14.4 donors per million Canadians in 1997 to 13.7 in 1998, a new low. The number \of patients waiting for transplants rose by nearly 700 to 3,544 last year from 2,874 in 1997. Of these, 78% needed a kidney transplant, 10% a liver, and 4% a heart and lung. Some of the reasons for the decline are good. Car and motorcycle wrecks, once a rich source of organs, are less likely to be fatal. Brad Evenson, National Post.

The name Paul Greig seems oddly familiar. I check the marching orders Kirsten issued yesterday. My 9 a.m. appointment is with Dr. Greig. He turns out to be a very nice guy. Gives me a quick physical, then draws three rough sketches of my insides and Shari's, showing just where he will cut, what veins and arteries and bile ducts will remain with me and what will go to Shari. During the physical, I ask him, "Did you pick up that cold?" He did, and will wait to see the results of Tuesday's checkup. If it hasn't improved, he says, the surgery will be postponed. How Long? He shrugs. A couple of weeks. We'll have to reschedule those adjoining operating rooms.

Jeff runs me up for a short visit with Aileen, my mother, his mother-in-law. It's conducted at arm's length because of the cold. This afternoon I nap again.

Sunday, April 23, 2000

I drive downtown to meet a 9 a.m. bus from Boston, via Syracuse, Buffalo, Niagara Falls. Lucy steps off and it is damn good to see her. An all-night ride with two transfers and a pretty good hassle at the border. She had no passport, a one-way bus ticket and $80 in cash, an amount insufficient to convince Immigration Canada that her intentions are honorable. But here she is, looking terrific. It's Easter Sunday, the rain has finally stopped, and we hook up with brother Colin and his wife Deb for a long, leisurely walk through the residential east end. Kirsten calls in the afternoon. I tell her I'm feeling fine, the cold has moved out of my chest. I pass on Jeff's observation that he knows nothing about what is scheduled to happen on Wednesday. She agrees he should come along Tuesday morning, along with Lucy. Kate wants to come too, and that's fine.

Tuesday, April 25, 2000

Only Shari stays home as we roll out for the hospital a little before 8 a.m. Kirsten listens with her stethoscope. Says my chest sounds fine, but there is just enough of a gurgle to suggest one more x-ray. I get that while she talks with Jeff, Lucy and Kate. The x-ray is quick, but it will take an hour to get the results onto her computer. Rather than make us wait, she consults with Dr. Greig, who gives the operation a final thumbs up. I'm to report at 6 a.m. tomorrow for 8 a.m. surgery. They want Shari today at about noon.

When we get home and give Shari the news, she is elated. Me too. She has very little time to collect herself and get into the car with Jeff and Kate.

We say a quietly emotional good-bye at the door. We'll both ask for a meeting tomorrow morning, but who knows?

Lucy and I have a wonderful afternoon together, then drive down to Union Station to meet sister Sylvia's train from Ottawa. She's staying with Colin and Deb, but I take her to Shari's because I know how to get to Shari's. Deb comes over and we work on a couple of pizzas. I want to see Colin, but he has gone to the airport to meet sister Beryl from San Diego. At about 8 Aileen calls to say Beryl has arrived at the Tower. Lucy and I drive up for a short visit with Mom, Beryl and Colin. Back through the night city to Shari's, where Jeff and Kate are back from the hospital. The late news: five or six organs have suddenly become available. Transplant teams will be working through the night. Unlike these donations from people who died today, Shari's new liver will keep. It's in me. So our surgery may be delayed. Perhaps an hour or so, probably not more than a day. At this point in the process, how could I possibly be surprised?

April 25 1: 00pm

I am now an hour late checking into the hospital. Tomorrow at 8:00am is the time of the surgery. Sisters are arriving - Beryl from San Diego, Syl from Ottawa. I won't see either of them. A great feeling of the gathering of the clan - I'll hate to miss it - lying in the hospital. Maybe they'll do their tests and let me out to join the gang tonight?

What a great gang. I can't say enough about Lucy and Kate. And Jeff. I can hear their laughter downstairs talking movies, Deb's cookie dough, home runs, dogs. Chris's book on advertising concepts has been approved. It is a wonderful piece of work and has given me new inspiration for my spelling book.

We spent yesterday meeting deadlines and then an incredible punishing (and relaxing) massage at the Korean Dahn-Hak center. A wondeful image of Chris sitting on the golden yellow floor playing native american xylophones flawlessly, as well as Master Mooah. What can I say about such a brother? Despite all of the comic elements of sharing a liver (and it is, at bottom, the stuff of bad puns) this gift is so humbling and overwhelming that, until now, at the very last minute and past it, I haven't been able to put my feelings into words. What are they? That he is acting totally in character. The brother I knew who always stood up for what he believed in, who in his adult life always translates belief into action, is incredible. When we met Peter Parkenson, an old high school friend, Peter remembered him standing up for Canada against the forces of colonialism at a school assembly by refusing to stand at attention for "God Save the Queen". He is not only smart and funny and wise but also unafraid. His whole life reflects this as much as being my liver donor.

He has never, through all this tedious procedure, complained - even when they lost the blood he drove all the way to Montreal to bank! All I can say is that they'd better take damn good care of him this week, and treat him like the hero he indeed is.

April 25^th, 7 p.m.

Toronto General Hospital, Eaton Wing, 10th Floor

The following was added after August 30 (see my final entry). For some reason it took me this long to throw off the mental self-indulgence Chris refers to in his O'Brian quote of June 30. I made many mental starts but life and recovery glitches kept providing excuses to say "not today!" It may be bad luck to start again -- asking for another glitch -- but here goes.

7 pm on the ward. I'm still in my clothes, walking around, trying to get used to the place, feeling shy, out-of-place. There's a man in the next room with a terminal-sounding cough. No roomate yet. Susan, a young nurse, drops in. She's surprised I'm the patient. There's a funny look in her eyes behind her wire rimmed glasses. I like her, but wonder what's up. She knows Dr. Grant from the London, Ontario, transplant centre, where she trained.

Eventually I go to bed, feeling cut off from the rest of the family and Chris, who are all together at our house. Wonder how Chris is feeling tonight. (Looking back, I should have said a brief farewell to my plump, tired, muddled self, the one kept thinking "I'm dying, I'm dying," without ever saying it aloud. That person was about to disappear. Not once since,has that voice of doom returned.)

Wednesday, April 26, 2000

Chris

Up at 5. Grumpy for lack of coffee and Lucy, who has read the little pre-surgical pamphlet I was supposed to read, says firmly that both cigarettes and gum are ruled out. We roll downtown one more time. Up to the eighth floor to the nurses station of the surgical recovery unit. A pleasant nurse explains that I will be back here later today in what is called the step-down unit. Not quite intensive care, it keeps a nurse on duty for every two patients. Before I change into my backless blue gown, she ushers me downstairs to the lab where blood is stored. The staff presents a bag of the stuff, concerned that my signature doesn’t include the middle initial M. I the signature is indeed mine, would I please write in the M? This is the missing unit from Montreal!. But who knows where it has been?

Back up on eight, Lucy asks the nurse if I could see Shari. We are sent up two floors to a small unit reserved for Toronto General’s transplant recipients. She is indeed there, looking chipper. We exchange hugs. On 8 again Dr. Grant appears. I try and express my concern about that Montreal blood. Not sure I succeed. Finally into the blue gown, with a dressing gown kindly added to cover the backside, and am walked down to the first floor by a silent member of one of Toronto General’s more peculiar specialized staffs, the transport people.

I am bedded in a very large room quite full of very nervous people. I visit with someone who is about to put me under. Questions I have answered before are answered again. I am rolled out into the hall. There ends any and all coherent memory of the medical procedure that is to follow.

Thursday, April 27, 2000

I’m in the step-down unit, a brightly lit ward of about six beds. I was probably conscious last night. Tell the guy in the next bed I thought he was smoking all night. We both have tiny little red lights attached to a finger, and in the dark they do look like cigarettes as our hands come up to our faces. They are reading the oxygen content in our blood. As I have been warned, there are a lot of tubes. One runs into my back near my spine, sending morphine into my body through a valve I control. There is a tube though my nose for oxygen, a catheter to my bladder, a drain to the site of the incision. An IV into the back of my hand. Lots and lots of plumbing.

This is a good day, marked by loving faces at the end of the bed — Lucy’s, Silvia’s, Kate’s, Jeff’s, Colin’s, and Deb’s. At some point I can recall feeling not just ok, but very goddamn good indeed. The highlight comes when a great nurse gets me loaded into a walker and upstairs for a quick visit with Shari. She looks fine, I think, though it is clear she has been through a great physical ordeal. What must I look like?

Friday, April 28, 2000

Chris

Things will change today. Some of this account came to me later from family members. My own memories are very clouded. The incision drain flows into a little clear plastic globe I call my hand grenade. It is darkening in color, filling with bile. This bothers the doctors, as the day goes on, and they decide, before the weekend makes such procedures difficult, that they should find out what’s going on. The man who can tell them that works across the city at Wellsely Hospital. He is prepared to proceed Friday night. An ambulance crew arrives and we set off, accompanied by Lucy, Colin, Deb and Sylvia. The new doctor is to send a gadget down my gullet, through my stomach, into the small intestine to the bile duct. He’ll be able to take pictures, insert dye for x-rays, even install a little plastic straw to improve the flow of bile. He does that, I guess. Trouble is, the medication used to relax me for the procedure, added to the morphine, pretty much takes me out of the picture for some time.

Saturday, April 29, 2000

Chris

These days are nothing but a blur of the wonderful faces at the foot of the bed. Among them today is Alan Hayes, a roommate from Pomona College in southern California who has lived in the Toronto area almost as long I as have not. There is a face beside Alan’s I can’t make it. Mortified to learn it belongs to another old Pomona friend, the philosopher John McCumber. At some point, possibly today, possibly yesterday, Shari pays a visit from the tenth floor. It is an emotional one. "Don’t cry," says my nurse. "If you cry I will cry." I am unable to comply. I don’t suppose that nurses often weep.

Sunday, April 30, 2000

Chris

Lucy has to fly home today. This is very hard for her. She has been worried about me all weekend, talking to Kirsten, trying to make sure of a proper focus on my reaction to the morphine, which does not seem very good. My recollections are of endless nights filled with paranoid fantasies. I would not reconstruct these if I could. But I do remember that I at once found them compulsive, and understood them to be totally crazy, not to be taken seriously.

Lucy has been working the phone to Vermont, and tells me that Sebastian and Abby will be arriving Monday,

Monday, May 1, through Saturday, May 6.

Chris

This time of tedious and slow recovery must be sped along. It was wonderful and heartening to see my two children and share their great good humor. At some point early in this week I am rolled out of the step-down unit and into a double room where the level of light, sound and medical activity is less intense. My first roommate, a truck driver and, long ago, coal miner from Novas Scotia, is desperately awaiting his liberation, which comes soon. I hardly talk to the second, who I gather is getting himself out of there against medical advice. The third is a Portuguese businessman from Brampton, the town where I began my reporter’s career. He has a large and loving family, and between us we keep the room pretty full. My strength improves. I can walk the corridors, and am encouraged to head downstairs and take in a bit of sun at the Elizabeth Street entrance. There are smokers, pigeons, a transvestite in flowered dressing gown and full makeup.

Martha arrives on Wednesday direct from Tulane, with a one-night stop in Manhattan and a train to Toronto that, in Rochester, turned into a bus. She plans to stick around to help me when I get out of here and back to Shari’s.

The staples come out of my belly on Wednesday. Pulled by a nurse wielding a tiny pair of pliers. Almost painless. The incision starts about six inches below my left nipple, arks upward to a peak directly above my belly button, then descends in a long sweep to a terminus under my right armpit. It’s full length on my much-diminished torso, about 15 inches.

The team of doctors who visit every morning suggest a departure as soon as Thursday. But Thursday passes. On Friday I venture up onto the tenth floor to find Kirsten, a potential expediter. She’s there and in typically fine form. We visit Shari together. Before Friday is over I’m taken for another chest x-ray, because I have been coughing up some pretty grisly stuff. A huge barium cocktail arrives with the news that they want another CT scan. Ugh.

Sunday, May 7, 2000

Chris

For the past few mornings the doctor has been saying I’m almost ready to go, but since I still have a bit of a temperature and I’m sort of an experimental case, they’ll keep me around for one more day. This morning, figuring I’ll get one shot at this and hoping my timing is good, I object. Last night, I say, the nurse was taking temperatures from room to room, from bed to bed, wondering why everyone on the floor had this little fever. I feel great, I say. I want out, I say. I have a great place to stay, quite nearby, and good care. The doctor agrees, after extracting my promise to let him know at the first sign of any trouble.

As I head upstairs to share the news with Shari, I find Dr. Grant chatting in the corridor. He’ll be right behind me, he says. Shari also looks very good, and we have a pleasant and personal meeting with Grant. He was the only surgeon to work on both teams, as I now unde