Wednesday, 23 March 2016

Arthroplasty of the MCP Joints (New Knuckles)

If you had rheumatoid arthritis (RA) diagnosed in the 80's, or if your RA has been very aggressive, you might know the meaning of the title. Otherwise it sounds like medical jargon that you need to go home and google. As an involved patient I always want to know what medical language means.

The story starts with a surgeon who must have been tired of describing procedures to patients. He put up a hand to stop my questions at the first visit, when he laid out a plan that ultimately involved straightening my fingers. 

However when he said this process would take 3 operations that was the end of the road.  With a full time job I could not afford the time to have that much surgery. His plan was to fuse both wrists and then straighten the fingers - I found out on my own that this is the best way to proceed. His explanation of his reasoning was not 'patient-friendly.'

Once I retired I was able to take the time to start with surgeries. The results of operation #1 were very successful, so after a year I went back to have a second wrist fusion. With both wrists immobilized and with the new found ability to turn my hand palm up, I was ready for the grand finale and just in time, because my fingers were getting worse and using them was getting more difficult. 

How much worse? This much

But - when I went back to the surgeon, he said "Too bad you didn't have this done when I suggested it because I'm retiring." Not the most sympathetic doctor, but also not the only one in the city.

Now it's done and I have new knuckles. Despite telling Debby's story of success with this I had doubts, especially when a trusted friend told me that doctors in her city were no longer willing to do this procedure.

However, with a US friend who has RA finding that three of her fingers were so badly displaced that she has lost hand function I carried on.

This is a picture of what I believe my knuckles look like on X-ray now. I don't have an x-ray of my own since the doctor did not do one. Now I have an implant in all 4 of my knuckles (MCP joints).

Silastic implants

You might wonder whether the operation was a success.

It was done ten weeks ago. I started in a cast, then graduated to various splints. Every week the Occupational Therapist would adjust both the night splint and the one I wore during the day. 

The day splint became smaller as I was able to gradually start moving my joints more and to start on a gradually increasing exercise program. I felt that the splinting and the exercise program were as important to the operation's success as the surgery.  

Now I am able to write again and to type faster. The occupational therapist who is still helping me advised me to wear a small splint to keep my fingers straight during the day, and a splint from fingertips to forearm at night. In retrospect I think that the surgery was only half of the procedure - occupational therapy and dynamic splinting was vital for the final success.

Here's the finished product - my hand today! Better than before.

It's a perfect example of the teamwork between professionals that is required for the best results to patients.

Perfection  is impossible, but I expect to be able to use my hand for a lot more years now, and better long-term function was the main reason I had the surgery.

Wednesday, 16 March 2016

HCSMCA in Vancouver

The #hcsmca symposium felt like a family reunion, or a live in person tweetchat, from walking in the door of the room in the morning, right until I left for home.

Feels as though we've known one another for a long time

The atmosphere in the (un)conference room was excited and exciting. Robyn Sussel was an excellent moderator and starting with a prayer for the day from Syexwaliya of the Squamish Nation was an inspiring beginning.

Pat Rich talked to us about only building what you can maintain, and quoted @Berci. "I want every medical professional and empowered patient worldwide to feel connected to many others... when they have questions or just need a good word or support.  Social media has the potential to become this bridge between people"

Colleen Young talked about the strong sense of belonging and the give and take in social media - the way the Twitter welcome wagon is ready for anyone. And one of the biggest achievements of social media is that it helps people to take a step back - it breaks down silos, is a fountain of plain language, and creates circles of trust and real conversations. We need that trust to be able to share

So we all came to Vancouver to do more of that, and to try to make a road map to see HCSMCA into the future.

Larry Chu asked us how we use technology to break through silos and achieve mutual trust and inclusivity.

Lee Aase gave us sharing and learning from the Mayo Clinic and talked about how having a group of co-belligerants helps break through the blocks such as patient privacy.  

His point about healthcare shifting and emphasizing respect over power was chosen as one of the top 10 ideas of the day. Larry Chu added to that with "How might we improve healthcare if we focus on respect instead of power?"

Another idea from Lee Aase "Don't let perfect be the enemy of good." and a top idea from Colin Hung "Change the world locally." That one is worthy of a  shirt.

More advice from Colleen Young "Model the behaviour that you want to see and spend time on the people who do model it."

Then with these two memorable statements -
"Take one bite out of the elephant at a time." Robyn Sussel
"The Law of Two Feet - You can move to another group at any time."

- we were ready for 12 challenges in 50 minutes.

I picked Challenge #7: Using social media to advocate for policy change
Deb Maskens submitted it and led the group. It was a real learning experience for me.

We talked about engaging with policy makers, strategic positioning of advocacy, mutually beneficial partnerships, moving from slacktivism to interactivism, the qualitative shift in how people are engaging now.

Incremental change is a key as we ask why research, evidence and common sense do not carry the day. Question: What is respectful political advocacy?
One obstacle noted is that when patient groups meet with the opposition party they lose credibility with the government.

Another important barrier is the structural exclusion of advocates from decision making.

Our group of Canadians using social media, who have a passion for changing the healthcare system, had a very rich discussion about changing the system - in fact we decided to start using a new hashtag (I just checked and we will be the first) #HCsystemChange. 

We sent ourselves a postcard from the future, and since this very useful conference also gave us the ability to keep in touch with one another, we will be working on making some progress.

All of the challenges had ideas that were usable. I think the largest challenge we are faced with is making use of what we learned, and keeping in touch with our community. The value of community was obvious at the Unconference, and I think we all learned how effective it is to have the whole team working on solutions.

Personally #hcsmca has made a large difference to my life and seeing virtual community change to real life community in BC was a powerful experience.

Meanwhile I look forward to the next Road Trip!!

Andre Picard with delegates from #hcsmca

More ideas:
Proceed until apprehended. Pick a back-burner idea and go for it on Monday.
Involve patients.
Use technology to support patients.
Don't let perfect be the enemy of good.
How do we listen to and use stories and then turn the stories to action?