Frustration

Well frustration is the word of the day. It’s not good news my friends.  I haven’t seen it for myself, but the specialist’s office called and said they received a letter today dated August 28th from BC Medical.  It apparently says funding has been denied because the surgery is considered experimental. 

I was hoping, but I guess that wasn’t enough lol.  Ouch.

I’m going to lick my wounds today and feel sorry for myself for a couple more minutes, but tomorrow is another day and here’s to a miracle showing up!

As my Dad was wont to say… Keep your pecker up!!

Cyber hugs to all 🙂

Kare

My bad :(

My bad… it’s been too long between posts hasn’t it?  Alot has happened, yet not much has been accomplished. Have you ever had that happen?  lol… life eh?

So, to catch you up, I received a referral to a second specialist and had that appointment on July 7th.  We didn’t exactly see eye to eye at first, but after subsequent conversations and some research on his part, I had a completed funding request and most of the support documentation by the end of the month.  August was spent sourcing additional information to support the request and on August 22nd the package was faxed to BC Medical’s Out-of-Country department.

It could be as long as two more weeks before the specialist hears anything from BC Med.  I asked his assistant Michelle to let me know if I was calling too often.  She’s been very kind and patient lol.

So, now I think I need to do my best to think positively and expect the best outcome.

I almost forgot to say!  On July 16, 2015 the US government authorized the use of osseointegration for amputees!!  WOOHOO!  That’s a big step in the right direction 🙂 Should only be another 10 years or so now before it’s here in Canada hahaha. Here’s a link to the article…

http://www.oandp.com/articles/NEWS_2015-07-16_01.asp

In the meantime, while I’m doing my best to wait patiently, my sweetie Terry wants to start fund raising the rest of the money that’s needed to pay for the other costs.  If BC Med steps up it leaves another $65k or so to be found, plus the costs for travel, food and a new knee/foot.  $115k should about cover it if I don’t go all wild and crazy and expect to order a computerized knee (the cost jumps from about $20k to $80k) which would mean I need to raise about $180k.  GAK. That’s all my brain can articulate on that.

So there you go, you’re all caught up!

PROMISE I’ll post as soon as I hear from BC Medical whether the response is yay, nay or what the heck are you talking about.

TTFN and keep those fingers crossed!

Kare

And the saga continues… orthopedic surgeon wise

Well, I had my appointment with the orthopedic surgeon and it was very very very very disappointing and discouraging.  Apparently he feels OI is experimental surgery.  If he had let me fill him in I would have explained that it’s done on a routine basis in Australia and paid for by their medical system (can I be an Australian please?  I’ll try to speak with an accent).  He promised to find another orthopedic surgeon in his clinic more informed in amputations and possibly OI for me to talk with…. and he followed through!  Now I’m playing the waiting game again for a new appointment date.  Patience patience lol.

So I had another thought… what about sponsorships?  A gym for example.   I really need to drop some weight and get into better shape.  I wonder if a local gym in the Cowichan Valley would be interested in talking with me.  I’ll have to look into that next week.  Any thoughts out there on other sponsors or fundraising ideas?  Know anyone who would be interested in supporting a girl to get to Australia?

In the meantime, I’m playing shopkeeper in Cowichan Bay for the summer selling stained glass, jewellery and aura photos.  Looking for something to do some boring afternoon the next three months?  Come on over to Spinning Ninny’s in Cow Bay and we’ll have some fun!

I guess that’s it for now.  I’ll let you know when I hear about the new specialist appointment – all in the name of funding and a leg… and the saga continues.

Kare

It’s just a leg… or is it? Osseointegration for Amputees

Hi my name is Kare and I’ve started this blog to share my story and information about osseointegration for amputees.

In 1987 I was in a motorcycle accident and lost my left leg above the knee.  Well, actually if you want to get technical, it’s a knee disarticulation amputation.  I have the full upper femur along with my knee cap, but not the knee joint.  It’s been great for weight bearing, but not so great for cosmetics or balance.  Because I have the full length of my femur, the prosthetic knee sits lower than my other leg.  You could say I walk a bit like a penguin.  But osseointegration can fix that.

It didn’t take too long to compensate for the limitations of being an amputee and being 27 with young children I wanted to be able to get out and do things with them.  I took up downhill skiing and learned how to three track – one ski and two outriggers (ski poles with little skis on the end).  I took a five day course on three tracking at Mount Washington in 1990 and was asked if I wanted to join the BC Disabled Ski Team. It was a fantastic time I really enjoyed, lots of wonderful people and great adventures, but unfortunately after three years of competing and playing with my kids on the hills, skiing had taken it’s toll on my back and shoulders and I had to let it go.  I have a drawer full of several first place medals, one second place and a best crash trophy (my favourite).  Don’t tell anyone, but I had a bit of an in on winning first place so many times, I was the only person competing in my class.  My second place medal is the one time I had competition.

Wearing a prosthesis isn’t so bad – it’s definitely better than using crutches 24/7!  I really do miss wearing girly shoes though. With the type of prosthetic knee and foot I have, I can only wear shoes that have a half inch heal. Being an  amputee, especially an above-knee means there are limitations, no doubt about it.  If I push myself too hard, well, Mark O’Leary who writes a blog called Amputee Adventures says it really well…

“…the action of walking would eventually create painful areas of skin where the socket rubbed. If I were to walk any significant distance, I would be severely restricted in what else I could then do or would have to remove my leg and let the stump recover. Obviously it was sometimes impossible to remain within my comfort zone and often I managed to make my stump sore to the point that wearing my leg was very painful. This situation was exacerbated in warm weather so I would not look forward to hot summer days with any enthusiasm. Living with this restriction became the norm and soon the changes to my daily life required to compensate for my disability became routine – the life of an amputee….”

So two years ago I heard about osseointegration for amputees – both arms and legs.  You’ve probably heard about osseointegration being used by dentists – a titanium implant is inserted into your jaw where you’re missing a tooth, then a porcelain tooth is glued over the implant once it’s healed.  (Titanium is the only metal that bone will actually grow into.  Over time, the titanium and bone become one.) Voila! you have a just-like-the-real-thing tooth!  Well, osseointegration surgery is available in Australia for those who have lost arm and leg bits.  At the point two years ago when I first heard about this, it was a two stage surgery, there was a ten month wait before you could do any weight bearing on the implant and the infection rate was over 20%.  Now, only one surgery is required, not two, you start weight bearing at 3 days!, and the infection rate is below 1%.  Now you’re talkin’, me want!!!

Think about it… most the limiting factor in being an amputee has to do with the socket.  It’s hot.  It’s painful.  It’s time consuming and very (very) emotionally draining and stressful when you need to get a new one made.  You put on weight – you need a new socket.  You take off weight – you need a new socket. It just plain sucks.  Enter osseointegration…  I wake up in the morning and instead of taking several minutes to salve and spray, put on the liner, step into the socket… take it off and step into it again because I haven’t got the alignment right… take it off and step into it again because I haven’t got the alignment right… take it off and step… well you get the picture… I just attach the prosthetic knee to the end of the implant.  That’s it.  Seconds.  And there’s no more bruises, calluses, sores.  I CAN WALK FOR MORE THAN 15 MINUTES AT A TIME!!!  Holy doodle.  That thought alone gets me all emotional.

At this point, amputee osseointegration is not offered in Canada.  It is however offered in Australia with Dr. Munjed Al Muderis who also performs hip, knee and trauma surgery.  I hear he’s the go-to doctor, the best.

There are two people in Canada so far (both this year) who have had the surgery and both are thrilled with the results.  Can you sing along with me?  I’m number three!  I’m number three!

This is going to be an expensive undertaking… it’s over $100,000 Canadian and that doesn’t include travel, living expenses, or a prosthetic knee and foot.  I’m working through the steps to see if BC Med will cover some of the costs (surgery, hospital stay) so that may cover a third of the costs.  Yay if they do, every penny helps lol.  I was quite naive when I had the accident and the insurance company knew it and took advantage.  I received a grand total of $40,000 for the loss and that money is loooong gone raising my kids, life… you know the story.

The first step is to meet with a specialist who will determine if they feel the surgery is necessary, they then submit a funding application and within a month we find out if it’s approved.  I have a specialist appointment on May 28th!  So excited.  It’s actually with Dr. Wahl who did the initial amputation in 1987.  I wonder if he’ll remember me… wish me luck!

The second step is to raise the remainder of the funds.  Yikes.  This feels bigger than me.  Paying it forward so another Canadian gets their piece of titanium is a thought in the back of my mind I would like to develop.  Wouldn’t that be awesome?

So that’s about where I’m at.  My next step is an appointment with Dr. Wahl to apply for funding.  I can only hope that he will believe that osseointegration for amputees is an awesome idea… wish me luck!  I’ll let you know how it goes.

I think this promises to be quite the ride.

Kare