Happy World Kidney Day!

Today is World Kidney Day.

Are your kidneys healthy?

Did you know that over 500 million people world-wide have some form of kidney damage?

Did you know that high blood pressure and diabetes (Type 1 and 2) are leading causes of chronic kidney disease in developing countries like Canada?

Did you know that over 1.5 million people worldwide are currently kept alive through either haemo or peritoneal dialysis, or transplantation and that this number is predicted to double within the next 10 years?

Do you have one or more of these risk factors for chronic kidney disease?

• high blood pressure or diabetes
• family history of kidney disease
• history of heart attack, stroke, or other blood vessel disease
• over 50 years of age
• First Nations or Asian ancestry
• obesity
• smoking
• family history of high blood pressure or diabetes

If so, please speak with a health professional about how to reduce your risk of developing chronic kidney disease. Do it for Chris. Do it for yourself!

The Amazing Kidnerellis!

National organ donation registry

Yesterday it was announced that Canada will finally develop a national organ donation registry. This registry will replace the many provincial and regional networks which currently manage life-saving surgeries for thousands of Canadians surviving with kidney, liver, lung, heart, and other organ failure.

Three years ago, Chris was near or at the top of the organ donation waiting list in Ottawa. Since Ontario alone has five completely separate and locally managed transplant regions - each with its own waiting lists - he was removed from that list shortly before we moved because he would no longer be living in the Ottawa region. It was our understanding that he would be assessed soon after his arrival in London and placed on their regional organ donation waiting list.

He lingered a jaw-dropping 14 months on the assessment waiting list before being scheduled for the full-day series of appointments to meet with the various members of the transplant assessment team: co-ordinator, social worker, nephrologists, transplant surgeons, etc. With a single registry, his file could simply have been transferred without being removed from the waiting list.

There were many times when he would give me an update of the latest anticipated wait time before the assessment that I lost all patience with the snail's pace bureaucracy of our healthcare system. I fumed and swore and railed on, demanding answers from Chris that he did not have. He was too patient for my fervent caregiver-driven frustration but it was his body and his condition and I knew I had to accept that.

Over my years living with and loving Chris, I came to understand how he – like anyone who faces a health crisis - had to steer his own course, comfortable with his own fully informed decisions and full participation as the key member of his healthcare team. This was the philosophy at the core of his PhD research interest.

In the end he never made it back onto an active organ donation waiting list because of the complications he developed from Encapsulating Peritoneal Sclerosis. The assessment team was waiting to see if he would respond to treatment before possibly undergoing the strain of transplant surgery and whether it might also jeopardize the precious donor kidney.

The new national organ donation registry will hopefully ease painful and frustrating wait times such as Chris and I endured. It will also open up the pool of available deceased donor organs to the best-suited candidates – no matter where they live – thus ensuring the best possible matches as well as creating opportunities for paired exchange donations. The new registry will also hopefully increase awareness of growing organ donation needs.

One issue that I am emphatic about is the validity of a deceased donor’s wishes over the possible dissension of their surviving family members. If someone has made the decision to donate their organs after death, that decision should be as binding as their will or any other legal document they made in anticipation of their death. Obviously healthcare staff must handle these situations with delicacy and empathy but in the end the deceased person’s wishes should be fulfilled.

Be a lifesaver. Sign your organ donation card or mark that choice on your health insurance card or driver’s license and – most importantly - talk with your family about this issue.
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Another kind of family

Last month I attended the annual dialysis memorial service organized by the staff of the hospital dialysis program. This very touching event is becoming more and more common in dialysis clinics as staff come together with families to share their grief at the loss of people who are more than just patients.

Unlike most other healthcare settings, dialysis staff and patients spend many hours together several times a week over the span of months and often years. Despite rotations in shifts and changes to schedules, patients and staff get to know each other well - sharing stories of children and grandchildren, work goals and travel photos, happy news and difficult struggles.

I visited Chris fairly often at dialysis. We would catch up on our day or watch TV together... I once got corralled into refereeing a trivia challenge. Family members are welcome in the unit and I got to meet many of the "other women" in Chris' life - especially the hardworking, kind, generous, funny nurses who took care of his dialysis regime while he was hooked up to the machine. There were also nurse practitioners, doctors, dieticians, and technicians who all played vital roles in maintaining Chris' health - indeed his life.

For these staff, the losses of patients each year must take a difficult toll. Like cancer care, death is sadly an all too common part of dialysis care but the people who choose such a career path seem to be especially resilient and caring individuals who somehow manage to share the burden of chronic illness but also the joys of life.

This year, 44 dialysis patients who passed away last year were honoured at the memorial service. Several staff spoke from their hearts or read poems, their voices thick with emotion. Families and friends were invited to light memorial candles. The theme of this year's service was The Spirit of Transformations and that transformation was represented by butterflies which was especially touching to me... almost like a secret gift. I felt Chris smiling with me at the bittersweet coincidence.

I will be forever grateful to the staff of the dialysis unit who helped Chris live his life to the fullest. There were many other places he would rather have been but if he had to be there, I'm glad he was in such caring and capable hands. Thank you for all you do.
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It's a small EPS world

Several months ago, I stumbled across an Internet reference to a book entitled Barry's Stolen Life. The book was written by Linda Sweetland about her 28 year old son Barry who died of complications from kidney disease in 2003.

What made me take a second - and then a third - look at this reference was the startling series of coincidences between Barry and Chris' stories. In the end I ordered a copy of the book for myself and read it in one sitting. The book is self-published and is - as many such projects are - a labour of love rather than a literary masterpiece.

Like Chris, Barry was born seemingly healthy but began to show evidence of underlying problems at a young age. The coincidences begin: both were diagnosed with Reflux Nephropathy at a young age; both had surgery in an attempt to correct the problem; both were ultimately diagnosed with End Stage Renal Disease; both underwent hemodialysis, kidney transplants, and peritoneal dialysis; both suffered through peritonitis; both lived active and happy lives; and both married their sweethearts shortly before their sudden deaths. Barry and Becky were married for little over two weeks. Chris and I had nine months.

It was complications from the relatively innocuous peritoneal dialysis that caused them both to develop a rare condition called Encapsulating Peritoneal Sclerosis (EPS). The condition seems to mainly occur in patients who have undergone peritoneal dialysis for longer than five years. The statistics rise the longer the treatment is used – but even so the rate hovers around a lowly 3% of dialysis patients who develop EPS. Chris' team of nephrology specialists had seen less than a handful of cases over the span of 20 years in the field.

Even specialists studying EPS do not yet understand what triggers it in some patients but not others. EPS causes the normally tissue-thin peritoneal membrane to become thickened and impenetrable, making the fluid exchange of dialysis impossible but also slowly encasing the digestive organs thereby cutting off nutrient absorption.

Chris had undergone several surgeries and was receiving experimental drug therapy for his EPS – we’ll never know if he would have been cured. Barry suffered terribly from the condition and in my heart I am relieved that Chris (and I) never had to endure such distress. He never expressed regrets for having chosen peritoneal dialysis as a treatment method. He always spoke of the freedom it gave him - to travel, to work, to live.

According to the book, a percentage of the profits from its sale will be donated to research into the condition. The International Society for Peritoneal Dialysis is working with several specialists to create an international EPS registry to aid in the research of this rare condition.

You may be wondering how I could read Linda's book. I’m not sure. I’m a reader, a learner, by nature. It’s one of the ways I understand life and cope with issues I don’t understand. As well, the coincidences were almost freakish and I wanted to see how someone else had coped with such similar experiences. We're all learning and that doesn't always mean choosing the easiest path.
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You, me... and we

I realize that it's been awhile since I posted any updates on the blog. I have been writing, just not online. Like many people in northern climes, I struggle through February. Perhaps it, not April, is the cruellest month. My mother often wondered if she suffered from SAD - quite possible, given her predisposition to mild depression. Thankfully (at least to my mind) this has been a bright snowy white winter for the most part, banishing the grey, damp weather that passes as an excuse for winter in these parts.

It's been a difficult month - probably only in part because of the winter blues. The mother of a dear friend of mine passed away recently after a long struggle with Parkinson's. I sat with her several afternoons in the week before her mom died, keeping her company, making sure she got out for a walk in the fresh air and a regular bite to eat. We talked, I knit, she held her mom's hand, sometimes we just sat quietly together. Looking on her mother sleeping, I remembered many tender, intimate hours spent with my own beloved mom in a similar setting.

It was an honour to be among the close circle that supported my friend during the precious waning days of her mother-daughter time. To quote a wise and simple line from Lars and the Real Girl "That's what people do." If we're lucky, we feel an empathy for those around us who are in pain and we do what we can to help them through. It's part of being human and, hopefully, in turn makes us ever more human.

Marking the first ever International Rare Disease Day, tonight's episode of The Agenda on TVO focussed on rare diseases and how people deal with everything that comes with them. One of the guests was Alison Agar, born with Polycystic Kidney Disease and a three-time kidney transplant survivor (obviously that caught my interest). Another of the other guests was Ian Brown who wrote so very eloquently and honestly about life with his son Walker in a series of articles, soon to be expanded on and published as a book. Each of the guests spoke not only of the medical condition but of how it impacted on everything in the family's life and beyond.

A chronic illness becomes second nature, a lifestyle - albeit not one of choice. Illness - rare or not - never afflicts just the person with the condition. Like a pebble into a pool, it's effects radiate outwards to spouse, children, parents, friends, workplace, school, and so on, and so on. Illness is a "we" diagnosis, not an "I". Nonetheless, it often creates families where no blood ties exist even while we struggle to maintain the bare bones of a semblance of normalcy in the face of seemingly hopeless chaos. That's one of the few blessings of chronic illness... it can make us more human all the while robbing us of our physical strength and even our dignity.

I seem to have rambled on about lots of disparate topics but I guess at the core everything relates to being able to reach out, to help another may help to ease the weight of our own burdens, to feel for one another, to recognize the "we" in each other, no matter what that other face looks like.
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No longer searching for Bobby Fischer

This morning I met with someone from the university Chess Club to donate several of Chris' chess sets and his chess clock. Although he never joined, he had expressed some interest in the club and talked about maybe checking out some of their events to see if it was a group he might find appealing. I think he'd be happy knowing that his sets will be enjoyed by fellow lovers of the "King's Game". Right now, I like to think he's picking up tips from recently departed chess legend Bobby Fischer.

Coincidentally, Fischer also died of complications from kidney failure. Apparently he refused ongoing dialysis therapy and chose to let nature take its course. While many people may view this as an extreme choice and question Fischer's capacity to direct his own medical care, it is a legitimate option that some kidney patients decide on for any number of reasons.

Another interesting coincidence is that the last years of Fischer's life were spent in chess-mad Iceland where he lived a reclusive and increasingly paranoid existence, occasionally making news with outrageous rants against Jews and/or his country of birth, the U.S. Fischer's remains were buried in a small church cemetery near Selfoss, 60 km south of the capitol of Reykjavik. I don't remember Chris mentioning that he knew of Bobby Fischer living in Iceland but knowing Chris' wide-ranging knowledge of many seemingly unrelated bits of information...

I guess we won't be searching for Bobby Fischer any longer. Hopefully, he's found the peace that eluded him for most of his troubled and controversial life. Maybe he can learn something from Chris.
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Paying it forward

In recent months I've been germinating two pet projects in memory of Chris that I've been hoping would come to fruition. I'm delighted to say that both have received full approval from the 'powers that be' in their respective arenas and will be moving forward over the next year.

The first is a graduate scholarship fund at the library and information science faculty where Chris and I met as Masters students and where Chris was a PhD candidate at the time of his death. We created many wonderful memories during our time there - we were often affectionately teased as one of several 'librarians in love' couples. I hope that this memorial scholarship will help successive generations of library science grad students fulfill their dreams for many years to come.

The other project will be a more hands-on labour of love combining my librarian skills as well as my experience and interest in consumer health information and patient advocacy. I will be working with patients and staff at the university hospital Chris attended to create, in his memory, a patient and family library for kidney disease and related resources at the new dialysis unit currently being developed.

His passion for patient self-advocacy and education was born of his own experiences as a person with a chronic illness but one of his key coping mechanisms was to educate himself about his health condition so that he could be an active, informed participant and decision-maker in his own care. I want the new library to be a place of enquiry, reflection, learning, and empowerment for kidney patients and their loved ones, but also for healthcare staff - for we can all learn from each other.

Giving back or 'paying it forward' was very important to Chris and has become even more so for me since his death. During the past several years I learned more from my parents and Chris than I would ever have thought myself capable of. Not of intellectual knowledge or facts, but in the seemingly boundless capacity of the human heart and mind for compassion; for patience; for nerves of steel and steady hands; for tender care of messy situations; for protecting a loved one; for truly living life in the moment.

I will continue to write about these projects as they develop and keep you posted on their progress. Thank you to those of you who have helped me bring them to life and continue to give your support, your time, and your expertise. Thank you for ‘paying it forward’.
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It's about the behaviour, not the orientation!

Last week I was so mad I could have spit. I probably did when my jaw dropped open in stunned reaction to the belated news that Health Canada had released new standards for organ donation in December. The department announced that, among other things, men who have had sex with another man within the past five years will not be considered as organ donors!

Did I just wake up in 1988? Are we still having this conversation? In the early dark days of the AIDS epidemic gay men were the primary figures in that war. As the epidemic cuts a swath of death across the world, we now know that it is not sexual orientation that makes a person an HIV carrier or more susceptible. It is a person's behaviour that makes them at risk for HIV and AIDS, not their sexual orientation!

Behaviours such as promiscuous and/or unprotected sexual activity and shared needles; behaviours about things that we don’t talk about in ‘polite’ society. The HIV virus loves our shame and our dark secrets, our extra-marital philandering, our little junk habit, our secret thrill of riding ‘bare-back’. Meanwhile, all gay men are once again being singled out by preposterously archaic assumptions in poorly written medical guidelines.

The reaction has been vocal, swift, and broad-based. Most transplant units across Canada have announced that despite these new guidelines, they will continue to assess organ donations based on behavioural risk-assessment guidelines. Given the ever-increasing shortage of organs needed for transplants, Health Canada should have given this issue more thought. Shame on them.

Toronto Sun - Letter of the Day by Ontario Minister of Health, George Smitherman
Toronto Star - "Most gays ruled out as organ donors"
Globe & Mail - "New organ donation rules don't exclude gay men"
CBC News - "Sexually active gay men no longer allowed to donate organs"
CBC, This Hour Has 22 Minutes for a refreshingly satiric perspective on Health Canada's guidelines [This Week's Video Highlights > select Jan 15 > scroll down and click on "Organ Donor Policy"]
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If only...

When I look back on Chris and my time together, I have few regrets. We were lucky, we lived in the moment. Not necessarily because of Chris' condition but in spite of it. But of course there were things that I wish had been different…

• if only we’d known that it probably wasn’t mysteriously persistent heartburn but perhaps early signs of aortic pressure which led to the dissection that killed him
• if only an angiogram or even an ultrasound had been done of his arm before he underwent surgery to create a fistula that took months to heal, was painful to access, and ultimately unusable
  
• if only he’d started on a high dose of prednisone last fall
• if only he’d never developed encapsulating peritoneal sclerosis (EPS)
• if only we’d started home hemodialysis last year
• if only he and one of his doctors had had a more communicative and respectful relationship, his fluid overload would have been addressed sooner when his blood pressure was already sky-high
• if only he hadn’t had to wait 14 months before being assessed to be put on the transplant waiting list after moving
• if only he hadn't had a bout of peritonitis, perhaps no EPS?
  
• if only one of the two transplant calls in Ottawa had been a good match
• if only he had been offered home hemodialysis instead of peritoneal dialysis, perhaps no EPS?
• if only my parents hadn’t been in poor health and lived so far away, I could have been tested to be a kidney donor years earlier
• if only his drug dosage had been more carefully monitored when he got his first transplant, he wouldn’t have suffered toxicity and the kidney might have lasted years longer
• if only his blood pressure and kidney function had been more closely checked as a youth
• if only his condition had been diagnosed at age 2 or 3 instead of 9 or 10, his kidneys would have suffered so much less damage, he might not ever have needed dialysis
• if only he hadn’t had a fluke birth defect
• if only…
  

But all these things did come to pass and none of us – Chris included – can take the blame for them. Because despite any second guessing and misplaced guilt, all these experiences contributed to making Chris the person he was: strong, patient, curious, tolerant, wry, generous, empathetic, and loving. Were they fate, chance, flukes, destiny, mistakes, oversights… who knows. The only thing to do is what Chris usually did: learn and let go and love.
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In sickness and in health

It occurred to me a little while ago that not only do I miss Chris - I miss caring for him. While he was obviously able to make his own decisions about his care and his self-management as a person with a chronic illness, I was his caregiver in the sense that I was his sounding board for decision-making, his nurse when he was recovering from surgeries or procedures, his advocate when he was not able to do so for himself.

I did all this passionately and without question and with the instinct to protect and care for the one I loved most in the world - the one to whom and for whom I would gladly have given anything, including one of my own kidneys. Chris’ kidney failure was a fact of our lives but one that we strove to not make the focus of our lives.

Now that Chris is gone, my caregiving duties are dramatically reduced. They are now only to myself - and to Sprockets of course! But I miss caring for him, worrying about him, researching new approaches to treatments and therapies, helping him shower, changing his dressings… he doesn’t need my caregiving anymore. He’s free, to care for all of us… who need it now more than ever. Take care.
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