Save Kim's Legs

This is the story of my friend Kim. These are her legs.

They're not supposed to bend that way.

She might lose the ability to walk due to the failures of our medical system.

In January of 2021, her legs suddenly gave out from under her after getting out of bed. She fell to the floor. She had been training to summit a mountain on her 40th birthday in April of that year, so she dismissed it as over-training. After a few weeks of rest, ice, and heat there was still no improvement, and she had started to rapidly gain weight. Her doctor at the time ran some bloodwork and told her she suspected Kim had Stiff Person Syndrome, a rare autoimmune neurological disorder that most commonly causes muscle stiffness and painful spasms that come and go and can worsen over time. The test to confirm this diagnosis was denied by Alberta Health Services because the doctor who requested it was not a neurologist. Rather than referring her to one, the diagnosis was changed to fibromyalgia without any further testing.

A year passed without any additional tests or treatment plans. She was not being heard. She was stuck. Finally running out of patience for her doctor's inability or unwillingness to investigate what was causing these symptoms (and, frankly, with her bedside manner), Kim chose to find a new doctor.

She finally secured a meeting with that new doctor in July of 2022. This new doctor was shocked that no one had, at any point, ordered a scan of her knees. For the first time in a year and a half, she felt seen and heard by a medical professional. The doctor agreed to take Kim on as a patient and she ordered scans of her knees, nerve testing for her legs, referred her to orthopedics, and started her on cortisone shots to help alleviate the pain and swelling she’d been living with for 18 months. For the first time since the ordeal began, there was hope.

After much testing and many consultations, Kim was finally diagnosed with severe bilateral tricompartmental osteoarthritis, which made her a candidate for surgery on both of her knees.

Normal knees look like this:

While Kim's knees look like this:

The bone on bone not only causes severe pain, it will grind down her knees and her ability to get around will continue to deteriorate until corrective surgery can be performed.

With that in mind, Kim met with an orthopedic surgeon later that July who told her she would not be considered for surgery unless she lost the weight she’d gained as a result of barely being able to walk. She was sent back to physiotherapy in the meantime.

The phsyio may well have slowed the degradation of her knees, but it certainly didn’t stop or reverse the damage. She was getting worse, but she nevertheless somehow managed to lose a lot of weight, so she returned to the orthopedic surgeon to push for surgery -- she had honored her part of the deal.

She was told she’d have to wait. For 15 years.

That number is not hyperbole. She was told that the surgery could only be revised so many times, and in an effort to protect her quality of life at 80+ years old, they would not perform the surgery for the first time until she was 55. She was 41 at the time. Less than 2 years earlier she had been training to hike up a mountain, and now she was barely able to get around on level ground, let alone handle the stairs in her own home.

She was hitting roadblock after roadblock in her quest for medical help, and she was in near constant pain despite living on a potent cocktail of prescribed pain relievers and emotional management medications – probably more than was advisable, in hindsight, though not more than she was instructed to take. It was unsustainable. It was intolerable. She began to experience transient suicidal ideation.

During her subsequent follow-up with the orthopedic surgeon, she once again pressed to have the surgeries sooner, and she was once again told they would not operate until she was 55. She confessed she was scared that she wouldn’t make it to 55 -- if she had to continue living in this much pain, becoming increasingly unable to get around, she didn’t trust herself not to end her own life.

That's what it took to convince the doctor. He relented, and agreed to submit her referral for surgery.

By September 2022, she was on the waiting list, but was told it could take 18 months to get her first consultation for surgery. It was not ideal, but it gave her hope that there was an end to this torment in sight, however distant. In March of 2024 – 18 months later – her family doctor ordered updated scans to show the deterioration that had taken place while patiently waiting for a consult, hoping to expedite matters. When there was still no word by June of 2024, Kim called the orthopedic clinic to make an appointment with the surgeon who assessed her and who had put her on the waiting list, only to learn he was no longer there. They made an appointment for her with a new doctor for later that month.

Her new doctor saw the original scans – which were now 2 years old and represented younger knees – and told Kim she was “an extreme case,” and he said she should be operated on as soon as possible -- in fact, she should be on an operating table by October.

The scans he made that assessment off of are the knees you see here:

She was already considered an "extreme case" (surgeon's words, not mine) without seeing these newer scans:

I am by no means a medical professional, but even I can see how things have gotten worse in just two years. And they initially told her to wait 15...

It is now November 2024, 26 months after Kim was placed on an 18 month waiting list, and nearly 4 years after she fell getting out of bed. The quality of her knees (and life) continues to deteriorate. She is still in pain, and she is increasingly afraid that the damage to her knees will progress to the point that they will no longer be treatable.

Her care team, consisting of 3 doctors (a GP, the new orthopedic surgeon, and her pain management doctor), her psychologist, and her body workers are all baffled by the lack of information and stonewalling she has received from the system. And we don’t know where else to turn.

As Canadians, we sit on our high horse that we have free healthcare, unlike our neighbours to the South, and that high horse blinds us to the fact that our medical system, while free, is broken. And it is those of us who are also broken who suffer for it. And what is our recourse to circumvent this broken system? To pay for this treatment with private medicine, in this case, at a cost of $30k Kim doesn't have – per knee.

The expenses don't end there, though. Once the surgeries are paid for and performed, Kim will face a lengthy recovery time, during which she won't be able to walk. She'll need:

So this is the choice Kim faces now. Continue living in near constant pain, less and less able to walk, and beset with the constant fear that her knees will deteriorate to the point that she can no longer be treated, or find a way to somehow pay out of pocket for this surgery to happen while there's still a chance to claw back some quality of life.

Kim doesn't like to ask for help. So I'm asking for help for her, because she's always dropped everything to help me whenever I needed it. And, if, together, we can raise enough money to get her the help she so desperately needs, we might not just be saving her knees -- we might be saving her life.

Thank you for taking the time to read this. Times are tough all around, but if you can spare a little extra to help out, it would mean the world to us. If you can't, please consider sharing this with your circles. Maybe you know someone who knows someone who can get us over the finish line.