In the End: This Much is True (for me)

Some people have referred to my KD story as a journey. I suppose it was. And is. It is one journey woven through our daily travels and travails. My KD is running alongside all the other challenges and joys of life and in doing so, has imparted wee nuggets of knowledge. I consider them gifts and, although some of these may be specific to my experience, I feel there is a general thread of truth and common experience worthy of sharing. This is what is true for me when it comes to:

Kienbock's Disease It sucks. It sucks the joy from your life. It is a progressive and potentially debilitating disease. It's the end of the world and it's not the end of the world. It is not as rare as it appears and yet rare enough to make finding treatment tricky. No one, not even surgeons, knows why we get KD for sure. No one, not even surgeons, knows with certainty how KD will progress in each patient. No one, not even surgeons, knows with certainty what the best treatment is for each patient. No one, not even surgeons or KD sufferers, knows with certainty when and what surgery will be the most successful or if another surgery will be required down the line. It is these uncertainties coupled with the loss of the use of one's hand(s) that create fear and anxiety in KD sufferers.

KD is not a vascular disorder. Three months of acupuncture and four months of casting did not and will not trigger the blood supply to the lunate. In the months I believed a cure for KD was simply a case of restoring blood flow to the lunate, I wasted precious energy and time on the wrong solutions. The only way to restore blood flow to the lunate is surgically, through a revascularization procedure. In my amateur opinion, if casting *cures* your KD, you did not have KD.

Canada's Medical System There exist many myths about Canadian health care and Canada's Medical Services Plan, mostly perpetuated by Michael Moore and my grandmother. Oh, and Kiefer Sutherland. Don't get me wrong, Tommy Douglas was a great man with astounding vision, but no system is perfect, and ours certainly has its flaws. It is incredible that ANYONE, rich or poor has access to medical treatment for every category of illness, disease, or injury. No one in Canada will or can go bankrupt due to the need for medical care. Paying for the prescription drugs one might need is another story, of course.

Medical care in Canada is not free. Yes, those living desperately at or below the poverty line do not pay for medical services, but that line is pathetically low. Middle- and high-income families or individuals pay around $1500 a year. Our personal tax contributions to the system amount to much more, though don't ask me how much (that's what Google is for).

But Canada is a vast country with a relatively small population, a large number of which resides in rural communities. The number of medical care facilities and practitioners is not infinite. Making do is the motto of the northern community, the non-urban hub.

In our courts of justice, it stands that if one is not granted timely access to trial, then justice is not being served. Many of us seeking medical care in Canada are receiving too little, too late, sometimes with tragic consequences.

The small matter of life or death aside, I fail to understand the economics of a young workforce crippled by a lack of medical treatment. The cost of sick days and disability and unemployment payments alone must be staggering. What is the social and economic cost of a young man or woman waiting a year for a surgery that will allow him or her to return to work within weeks?

Surgeons Chances are, if and when you need a surgeon, he will most likely be male, aged 35 -60. As I've written before, he will be a type-A personality with a very black-and-white approach to your surgical needs. He will be confident and, in most cases, absolute. He will not be impressed by your Google-degree in medicine.
It is important that you like and trust your surgeon. He does not care if he likes or trusts you. If you do indeed feel comfortable with your surgeon, you must accept that the surgical procedure he performs on you will only be one he is both willing and able to do, regardless if there is a multitude of theoretical surgical possibilities, as in the case of KD. Despite the unprofessional and, in my view, unethical behaviour of my Dr. D, I now realize that he had only the capacity for those two things. Being willing. And being able.
If you don't like nor trust your surgeon and have the option of a second or third opinion, seek one without delay. If your surgery is inevitable, commit to it as soon as possible and get on with healing and life.
Most surgeons see their jobs as starting and finishing in the OR. Your outcomes are moderately important to them and best read about in a journal of medicine. A good surgeon is a surgeon who is good at performing surgery. A rare surgeon is one who is a good surgeon, a problem-solver, and a compassionate human being. I wish everyone a rare surgeon.

This much is True:

	Spandau Ballet - True .mp3
	Found at bee mp3 search engine

In Progress - Part 2: The Beat Goes On

This was what I had feared most. This was my monster under the bed. "To salvage" means to save from peril, from complete destruction. My wrist is one step from annihilation. All those months under the gortex and fibreglass, it was disintegrating quietly. It had done everything I had imagined it could. And here it and I are, at least with a chance of salvaging.

Yet I also have a nagging feeling - could it have been this bad all along? In the coming days, still obsessed and preoccupied, I will cross-reference MRI results and doctors' notes. From a report done 7 months after my initial diagnosis, one sentence haunts me: The lunate looks very similar to the previous study done in December 2007.

I have not let go of my anger and sense of betrayal over my (lack of) treatment by the Victorian group of plastic surgeons. Even though I am now in the gifted and concerned hands of another surgeon, I cannot forget what has happened. Did Dr. D actually know this all along? Was this the reason for his arrogance and reluctance?

I know how petty and sad this seems. It is petty and sad. There is no end to my conspiracy theories. Nothing will satisfy my need for validation. My family, my friends, and my neighbours listen to me patiently. It will be many months before there is a letting go, a peace established within myself but also, significantly, with Dr.D.

In the meantime, my monster has not only reared his ugly, bony head, but is waggling his slimy tongue at me. Surprising even myself, and despite my suspicions and bitterness, I almost immediately begin coping, strategizing. The worst case scenario is being played out and there is nothing to do but accept it and move on. That is all there is.

A rant, a drink, and a few tears later, Elvira and I are on our way back to St. Paul's. Unfortunately, the day has progressed and with no known protocol for queue jumping, we wait with dozens of others until our need to get to the ferry terminal becomes urgent. I don't get to see Dr. G again this day but after five more hours in Friday afternoon gridlock and a ferry ride, I am home, exhausted, sharing the news with my husband.

There is also a voicemail from Dr. G. He regrets that he didn't get to see me again and leaves a detailed explanation of why he must do the salvage procedure and an insistence that I cast my right wrist immediately. It seems a small and natural gesture, this 3-minute follow-up call, but I recognize and respect it for what it is: an anomaly, a gift.

And The Beat Goes On:

	Sonny & Cher - The Beat Goes On .mp3
	Found at bee mp3 search engine

In Limbo - Part 7: Out of Control

My cast is starting to break down. Not the fibreglass of course, but the layers of gortex underneath. It’s been 3 months. Those layers that haven’t matted together and begun their own, moist, science experiment are flaking and flying off into space, drains, dinner.

My GP dutifully requisitions a cast change and I pop down to visit John, my cast man. He asks how I’m doing; we briefly discuss the “incident” with my former surgeon. John says that he’s kind of a serious guy. Who’s your new surgeon, he asks. I tell him that it’s a Dr. T and ask if I’m pronouncing it right - I haven’t seen him yet. John tells me Dr. T is a good guy but did you know he works in the same office as Dr.D? I do know and I’m certain it won’t be a problem. He’s a professional after all.

I’m a little shocked by my arm when it’s unwrapped and naked under the hospital lights. It looks tiny and white but also a bit hairy and dirty-looking. John tells me that it is just dead skin and hadn’t you just come back from Mexico when I put this on? My January tan has flaked off and stuck itself to my old gortex padding. Gross.

I choose a baby blue wrap to celebrate spring and drive home with a fresh 75 dollar cast, still hot from the molding and shaping, my shrinking arm pulsing underneath. Four days until I see Dr. T. I am excited, nervous, and relieved all at once.

The phone rings the next morning and I mumble a hello through a mouthful of toast. May I speak with Fiona Bramble? It is Dr.T. He’s terribly sorry but he has reviewed my case and feels he is unable to treat me. My second, sneaky, MRI has just been forwarded to him. It confirms that I now have bilateral Kienbock’s. It is beyond my expertise, he says.

I have been waiting to see him for almost 3 months.

My appointment is in 2 days, I say. I know, which is why I am calling you personally. I am very sorry. I ask him what I am supposed to do now. He replies that he doesn’t know. Good luck, he says.

I shouldn’t be surprised, I suppose, and I’m not. I’m stunned. And angry. So angry I can’t move or speak for several minutes.

When I can speak, I pick up the phone. I call my husband. He can’t believe it either. He almost doesn’t believe me, I feel. I call my GP’s office. Maggie, her receptionist, has known me a long time. Maggie has some understanding of my case and condition. I need to see Gillian right away, I tell her. She asks what is happening. My voice shakes when I tell her about the call from Dr.T. There is a pause. I’m sorry, did you say Dr.T called you himself? I don’t understand. That is highly unusual. That word doesn’t mean much to me anymore.

I am starting to feel crazy again. I have cried more in the last four months than in my entire life. It’s not because my wrists hurt. Or because my feelings are hurt. I have lost control over my body. Over my life.

The tears come, hot and furious.

Out of Control:

	The Chemical Brothers - Out Of Control .mp3
	Found at bee mp3 search engine