Kingston General Hospital CEO (Leslee Thompson) Graciously cites my MESSAGE in essay . . .

Wanted to thank Leslee Thompson, the CEO of Kingston General Hospital, for citing me in an essay she co-wrote about patient engagement in healthcare ,for the December issue of Longwoods.com.

Screen Shot 2014-12-11 at 2.42.40 PM

Leslee co-authored the essay with Hugh McLeod, (CEO, Canadian Patient Safety Institute).

The publication, Longwoods’ mission “is to enable excellence in enabling wellness and providing care. We serve people and communities through their providers of health policies, services, products and care”.

I am cited within the essay from the perspective of being a Patient Experience Advisor.

http://www.longwoods.com/content/23995?utm_source=eLetter&utm_campaign=174609c885-December+9%2C+2014&utm_medium=email&utm_term=0_0f88455429-174609c885-%5BLIST_EMAIL_ID%5D&ct=t%28Longwoods+eLetter+December+9%2C+2014%29

General Essay Excerpt:

I am joined on the “balcony of personal reflection” by Leslee Thompson. Below us is a grand sight, healthcare with all its moving parts. We are dreaming of a chance to ignite patient-powered healthcare. Here is a brief scene from our REM daydream. We have been invited to an expert panel meeting hosted by Provincial, Territorial and Federal Ministers of Health. The Ministers have agreed to focus on one high-leverage play, the patient voice. And yes, we do have a magic wand, but so far we haven’t had to use it.

Excerpt from my Citation:

Helene Campbell (@alungstory) is a stellar example of this evolving empowerment. At a recent conference of over 2500 healthcare leaders she said to us, “I am the CEO of me” as she pulled out her smartphone and smiled. “This is the way I communicate, and this is the way I need to be able to interact with MY healthcare team.” Karen Nicole Smith (@KNSWriter), a patient experience advisor at KGH explains: “I am the one living with kidney disease, doing my home dialysis, waiting for a transplant and managing my health risks every moment of every day. I see you (the system) for about a few hours a month, which is a very small percentage of my life; the rest of the time I am on my own, and managing my situation is up to me.” Like other empowered people she is clear that healthcare experts have a critical role to play in her circle of life, but that while experts come and go, she is the one constant in her healthcare experience. “I have come to realize that I am a lived experience expert, and together with your expertise, we are a formidable team.”

I am so touched . . . and not from a paternalistic perspective (like someone is doing me a favour), I am touched because being cited reminds me that my experience, the experience of all Patient Experience Advisors, is valuable and powerful and necessary.

Events like this further reassure me that what we’ve been through, as patients, is not for nothing.

Posted in Amazing People, Message, Progress | Tagged , , , , , , , , , , , , , , , , , | Leave a comment

Something Positive to Come Back For . . .

Fingers crossed . . . but I may have the opportunity to try the new dialysis machines for the hospital in the new year.

The new machines are the NxStage dialysis machines. Portable. Easier to set-up and use. Travel-friendly. (Google it if you’re curious).

I have “generously” offered myself as the guinea pig and I am just waiting to get word as to if and when this trial will happen. (I am being sarcastic with the word generous because I am so excited for the benefits I anticipate for this machine – and for other patients that I don’t feel terribly altruistic about it!)

Exciting.

As I speculate (which I am known to do) I wonder if I am not meant to experience this machine before I get my next kidney transplant?

I wonder if I am meant to experience an easier (more life-friendly) version of dialysis so that when I consider dialysis, as a post-transplant option, I am more optimistic about wanting to do dialysis again????

When my next transplant fails, I will have the option of doing dialysis again. Great to have the option but that will be my third round with dialysis. I had already decided that I wasn’t going to obligate myself to do dialysis for the third time unless I really wanted to live.

The important factor in that equation was my current dialysis schedule – with the obstacles and sacrifices therein:

  • I am not comfortable to travel as I would have to allow another dialysis clinic to take care of me. As a home patient I like to be in control of the quality and timing (crucial point) of my care.
  • It takes around 45 minutes to get on my machine each time. And the set-up is complicated.
  • My current machine is not portable and I can only do dialysis at home in my dialysis room.
  • My current machine required thousands of dollars in electric and plumbing work. If I want to move I must renovate my next place to be “dialysis machine ready” at significant cost.

The NxStage machine takes care of almost all of the variables that make dialysis particularly difficult for me at this time.

  • I would be able to travel with a NxStage machine and be in control of my care and treatment schedule – as I am used to. (Aaaaaaamazing!)
  • Set-up is between 20 and 30 minutes and is much more simple with the NxStage machine.
  • With a NxStage machine I can do dialysis anywhere in my house.
  • The NxStage system does not require special plumbing or electric so I would be free to move if I wanted to.

All of a sudden I am imagining a reality better than I thought possible as a home hemodialysis patient. Which is a HUGE DEAL for me.

nxstage-dialysis

NxStage user basking in the SUN (poolside) . . . insert me in this photo, please.

*******************************************************************************

Is the reality of this new machine good enough to ease the burden of dialysis?

Make it less of a sacrifice to my quality of life?

Easier to live with – taking into consideration the things that are important to me?

I think YES. And I am certainly willing to find out.  :D

The better the quality of life for me as a dialysis patient, the more likely I will consider doing round three with dialysis later in my life. Period.

I am excited to see how life will be with this new dialysis system.

I look forward to my first trip. (I’m thinking Atlanta or Florida to see family.)

I look forward to improvements in my day-to-day life.

I look forward to having more time and a little less stress.

I do believe that leaving dialysis on a positive note will increase my chances of ever wanting to return to it.

That is HUGE for me.

Improvements in dialysis could mean the difference between me enjoying a longer life or not.

Posted in The Bigger Picture, Progress, Musings, Message | Tagged , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , | Leave a comment

My Relationship Status (with my hospital) has Changed to “In a Relationship” . . .

In the 70’s there used to be cigarette ads with the slogan, “You’ve come a long way, baby”. I thought I’d borrow the slogan to use here.

It’s one of those statements that can stop you in your tracks in a congratulatory manner. Prompting you to look around and say . . .

“Why, yes. Yes I have come a long way”. (In this case, it’s my relationship with my hospital that’s improved.)

Recently I was thinking about the kind of day I’d had at the hospital.

I was invited to a research interview where a Master’s student will inquire about how Kingston General Hospital works and how Patient Experience Advisors are contributing to Patient Centred Care.

I went to a sales presentation for a new dialysis machine – attended by doctors, nurses, renal techs and executives. I represented the patients’ perspective. Interjecting in a way I hoped kept the patient perspective in the forefront of people’s minds. This was the second meeting with the sales reps from NxStage, btw.

That same night I sent three emails to my doctors:

1. To follow-up on the NxStage sales meeting. Helping a particular nephrologist understand how powerfully this new dialysis system can improve the lives of some, or all, home Hemodialysis patients in the hospital’s home Hemodialysis program. And offering myself as a guinea pig to try the system at KGH as soon as they’d like to.

2. A request for an appointment with one of my favourite doctors. Her and I email all the time. She offered me her professional email address as soon as we met.

3. Sending a professional letter of recommendation to support one of a nephrologist in a professional goal.

——————————————————————————————-

First off, this day reminds me of how closely tied my life is to the hospital. Which I’m cool with. It’s a good relationship. I appreciate that.

Secondly, it wasn’t so long ago that the sales meeting would have been conducted without a patient experience advisor present. Decisions would have been made with no patient input. Medicine would have speculated what patient’s needed as best they could. They would have meant well but I do believe their decision today comes from a more patient-relevant perspective – since I shared my opinion and experience to contribute to their decision about trying the new system. I am thankful for the change to partner with the hospital to work on improving things.

Thirdly, it wasn’t long ago that I could not even fathom sending emails to my doctors. It just wasn’t heard of. Let alone sending informal appeals, asking for appointment requests and sending professional recommendations.

I am loving how medicine is evolving, in my experience.

HealthCareCare-300x200

I feel included, heard and valued. I definitely feel a sense of contributing to my healthcare . . . and even contributing towards positive healthcare for future patients (and definitely for my fellow patients at KGH)

I also feel a degree of friendship and meaningful relationship with the doctors . . . that I’ve never felt before. My care is deeper than just quick visits at the hospital. I consider some of these people colleagues and acquaintances. Of course I feel safer and better cared for by people who I believe know me well enough to really care about me.

I can’t assume that this is everyone’s experience with their hospital and with their doctors.

On the other hand.

I cannot assume I am so unique either . . .

I say that to say, if I am participating in my healthcare to this level now it bodes well for how everyone will participate in their healthcare in the future.

If I’m having great relationships with my medical team it bodes well for the type of relationships possible between anyone and their team.

Perhaps the not too far future either?

Times have certainly changed. We’ve come a long way.

And in a relatively short scope of time too.

*content smile*

Posted in Musings, Progress, The Bigger Picture | Tagged , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , | Leave a comment

Helping Represent Patient Experience Advisors and KGH in VIDEO . . .

Proud to be part of a video created by the Ontario Hospital Association (OHA). This is an organization that’s helped shape and influence health care policy in Ontario. Many aspects of healthcare in this province (in Canada) were formed by the OHA over time.

The video is entitled, “A Time of Transformation”. It explores the changes happening in healthcare to both improve the system and to manage increasing costs. 

Leslee Thompson (CEO of Kingston General Hospital) and I represented the hospital and spoke to the very important role of Patient Perspective as it contributes to improving healthcare. So touched that I could represent KGH and Patient Experience Advisors.

Screen Shot 2014-11-17 at 11.21.10 AM

Our segment of the video is called, “Patient Experience” and it begins at 3:19 on the time marker.

http://www.oha.com/OHATV/Pages/Default.aspx

Anyone interested in what’s happening in healthcare will find it useful and interesting to watch the whole video.

Screen Shot 2014-11-17 at 11.11.35 AM

Posted in Message, Progress, The Bigger Picture | Tagged , , , , , , , , , , , , , , , , , | Leave a comment

Dropping the “RACE” analogy . . .

Living with chronic illness, there is definitely a range of “days” that you live with.

At its worst are the days where you’re in a coma – that’s a bad one. Or experiencing excruciating pain  . . . or riding in ambulances. Getting a horrible diagnosis is up there as a bad day too.

*making a face like something stinks*

And at the other end of the spectrum. At it’s best . . . there are days when you can pretend that you’re well. Normal.

I’m lucky to be at a point in my illness where I have a few days a week where I can pretend I’m normal.

These are days where I don’t get on the dialysis machine.

Where I bank on my aggressive dialysis to give me extra freedom with my diet and fluid intake.

Where I can forget that I have a catheter in my chest . . . or a defibrillator in me.

Those days are very freeing. They recalibrate me. Give me peace. Set me up so that the next day – when I do have to go on the machine or go see a specialist or pick up medications – I can “deal” better.

Right now, although I am on the machine, I am having a real Zen moment with my health.

Talking to a friend, she mentioned that she can see the finish line for me, with regards to ending my time with dialysis.

I thanked her but I had to disagree.

For my sanity I had to stop thinking of living with dialysis like a race.

(In my mind it went from being a sprint to a marathon – depending on the circumstances.) But now, for the sake of doing the work of being well, I had to give up the race analogy completely.

Even the marathon idea. Who wants to run a marathon with no set finish line?

takeabreak

Yeeeeeeesh. 

In order to have peace with the life I live (aggressive dialysis, fitness to maintain heart function and work/volunteering) I need to be prepared for a longer haul than a “race” analogy can convey.

(I don’t think I have an analogy to explain how I’m making sense of my life right now?)

Somehow I have to have peace with getting a kidney transplant tonight or five years from now. Maybe even never?

I can also guarantee that there will be days that I’m not prepared to make peace with that truth. Where I am impatient and too tired to think long term. I pray for strength to get through those days – hopefully they amount to moments as opposed to days.

Today, on the other-hand, with 16 minutes left before I can get off the dialysis machine. And with a Cyclefit class to look forward to an hour, later at the gym. Somehow I’m fine with things.

I do not take that peace for granted. (I can not).

But for today . . . it’s all good. And I am very thankful.

Posted in Message, Musings, The Bigger Picture | Tagged , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , | Leave a comment

Leaving you in the DARK . . .

Not sure why it’s so hard for me to share the darkest moments of my story?

As I write or speak, I think of it as a tour I take you on . . . and for some reason in the moments that I am leading you through the dark (the sad and difficult moments) I find myself rushed to get you through those moments, quickly, and back to light and positivity.

I’ve written about this challenge before. Finding the courage to “sit” in those dark moments as a story-teller. Understanding that those dark moments are as important to my story as the light that emerges too.

A few weeks ago I did a talk at the Ban Righ Centre at Queen’s University, here in Kingston. I worked hard on my talk – especially since it was to be the longest talk I’ve given so far. And a talk where I could not rely on PowerPoint to keep my audience stimulated (or me on track with visuals cues). This talk was going to rest solely on my story and my story-telling ability. Including relying on my memory – or lack thereof.

I worked with the help of two BFFs to get the talk to where I felt good about it. I practiced it “on my feet” for days before the date – in order to calm my anxiety about memory issues. I made cue cards as added reassurance.

The talk itself followed a pattern of looking at my health and then looking at how I embraced life, despite my health, at that particular period in time. Using an aid from Kenn, I fashioned the talk like a song with chorus-like and verse-like sections. Health snap-shots and then “embracing life” snapshots in a succession. He suggested that it would keep an audience entertained for a talk that long. It also helped me structure things in a way that was manageable for me.

The most powerful moment of the talk was the light and breakthrough after sharing my darkest health moments of my life so far. I talked about how hard it is to keep up my dialysis schedule. How hard it is to do dialysis without a care-partner. How in my darkest moments I imagined stopping dialysis, even knowing that stopping dialysis, without a new kidney, would mean death.

But then emerged my breakthrough.

The moment in my talk where I discussed the practices that keep me grounded and at peace with life with these health challenges. Light at the end of the tunnel. Details of the transformation that keep me strong enough to maintain the pace I’m currently at.

I finished my talk feeling proud and like I’d accomplished something. I felt like I offered people some hope and a glimpse into my perspective from an honest place.

I felt like I’d gotten through sharing the darkest part of my journey unscathed. They enjoyed the triumph and had endured the sadness and gut-honesty.

I think that’s where I’m afraid I’ll lose my audience – in the darkness. I’m afraid that people will worry about me. Or pity me for what I go through . . . and that terrifies me. I want to share how difficult things can be but I don’t want anyone to get stuck on that. The “overcoming” has to trump the sadness and the low or else I don’t believe my story is worth sharing.

So, the next week I went back to the Ban Righ Centre to pick up the video of my talk. My goal was for me to share it here on my blog and on my social media. I was looking forward to sharing something so personal and honest – something that was a bit of a stretch for me.

The centres’ coordinator downloaded the file on to my external hard-drive and I went home to watch.

I immediately noticed that the file was 30 minutes long but my talk was closer to 45 minutes. I didn’t panic immediately as I wondered if I had misjudged how long I’d spoken.

At the 28-minute mark I finished talking about the darkness I was experiencing with my health. The sadness. I heard the discomfort in my voice. I listened to myself laugh uncomfortably at times.

And at 30 minutes – before I could share the good that redeemed it all – the video ended.

Somehow the camera had stopped recording.

That was it.

* sad expression*

At first I was really sad. All of my hard work to share my experience cut before the good and redeeming part could be told.

I had a moment that I often have when I’m tired and disappointed. I was frustrated.

And then I decided I just had to let it go . . . because, frankly, there was nothing I could do.

The video of my talk ends before I can lead you out of the darkness.

The exact place that I have difficulty exploring as a story-teller was where I had to leave the people who would view my talk by video only.

That is not a coincidence.

It is not a coincidence that the video record of my talk ends before I can redeem myself and bring light to the story.

It is definitely uncomfortable for me. (So much so that its a few weeks later and I am only now sharing the video. And even still with some anxiety.)

Of course I wanted to share the talk in its entirety. Of course I want the happy ending. No risk of anyone feeling sorry for me. That is not the case though.

Please enjoy what is available of my talk at the Ban Righ Centre.

http://youtu.be/xcDwvCQAi2U

Screen Shot 2014-11-05 at 12.20.05 PM

It is possible, in the future, that I may re-record this talk in its entirety for my reference and as a reference for people considering hiring me as a speaker.

Or not . . .

Lesson appreciated. Point made.

——————————————————————————–

Here’s a photo when I was answering questions after the talk. I must have been having a good laugh!!

photo-15

Posted in Message, Musings, Progress | Tagged , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , | Leave a comment