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.

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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.

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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?

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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.

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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

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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.

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

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iObsession: The Relationship between Pre-Transplant Patient and iPhone . . .

It’s hard enough to have a healthy balance with technology, in 2014, without having my iPhone be my primary means of communication for my transplant centre.

I know one day my phone will ring and it will be St. Michael’s Hospital, in Toronto, telling me they have a kidney for me. And to get to Toronto right away.

I have peace that this call could happen tonight or two years from now, or longer. I have peace that this call could come any time of day – including in the middle of the night. I’m cool with that.

What is less “cool” is never being able to turn off my phone. I know it’s a small price to pay, ultimately, but . . .

*small respectful grumble*

In the past I enjoyed the freedom of turning my phone off at night. Turning my phone off during naps. (People with Chronic Illnesses have to take naps sometimes.) Turning my phone off whenever I felt like removing my attention from the phone itself.

There is a freedom there – from my perspective. A freedom to get away from distractions and interruptions when I want time for myself.

I do have perspective . . . I do realize that this phone call is very, very important. I do understand the delicate timing of receiving an organ. I do understand how miraculous this operation is, ultimately. I am aware.

I just miss the moments when I could check out when I wanted to.

I realize I am having a peculiar relationship with my phone these days. The weight of its importance is skewed. (And necessarily so). I just don’t enjoy the obsessive feeling I experience at times.

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I feel nervous I will miss the call from my transplant coordinator.

Missing that call, or responding to that call late, would be disaster. The stars will have aligned for my time to come and I can’t imagine missing it. Especially since missing it could mean years and years of extra life on dialysis to come.

My spiritual side tells me that when my time comes there will be no obstacles to getting my kidney. What is mine, IS MINE. My higher-consciousness reassures me that everything will come together as it should when my time comes and that I should not obsess. That I should just trust and KNOW that things will come together for me when that moment comes.

It’s not always possible to live with our faith at 100%. (For me anyway.)

So, in the meantime . . .

I’m paranoid whenever the phone charge gets low.

I have my phone beside me at meetings –  most times with the ringer on – because I am a little paranoid. My colleagues understand.

I sleep with my phone on my night table. (My pre-packed “you’re about to get a kidney get to the hospital” bag is not far away either.)

Sometimes it’s on the floor beside me at the gym.

I try to be vigilant to do my part in being ready for this moment. Maybe too vigilant? LOL.

If I didn’t have so many loved-ones to report to, when I get my call for my new kidney, I would consider a phone-free day or two after I get my call. *

For my loved-ones sake I will not do that. I know too many people care and want to be updated.

Yes, I know . . . I need to suck it up. There are certainly bigger fish to fry. Keeping my phone on and close (with ringer on always)  is a small sacrifice, ultimately.

Just sharing a little bit of my perspective on this journey.

*big smile*

* I am a member on a forum of people on dialysis (and their care-givers and some clinicians too). You will be thrilled to see how quickly the kidney recipients are back on social media and their phones (with the progress and good news) after their kidney transplant surgeries. I know I will be thrilled to share my good news. My phone and I will have a completely different relationship at that time.

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Moved to Tears by MEDIA LOVE . . .

It’s not often that a person has to eat his or her words. (I hope I got that expression right? I am famous for getting expressions wrong.)

In the past I have said that the media doesn’t have much love for kidney disease. What an amazing day it is when I have to take those words back . . . 

I received an email from Kerry McCloy, the Fund Development Officer of the Kingston Branch of the Kidney foundation, with a list of media links . . . all links are features for the upcoming Kidney Walk!!

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I took the time to open each feature.

Each link a sign that the media does care about those of us living with kidney disease.

Each link a sign that our experiences and what we go through means something.

And each link giving me hope that money will be raised (and awareness will be raised) for this cause that is so close to my heart.

*I am on the dialysis machine as I write this post*

I was moved to tears.

I want to thank the local media . . .

  • Whig Standard
  • Kingston Heritage EMC
  • CKWS News
  • Station 14
  • TVCocego – Kingston

HERE ARE THE LINKS:

Whig Standard: http://www.thewhig.com/2014/09/17/charity-walk-lifeblood-of-kidney-foundation

Kingston Heritage EMC:  http://www.kingstonregion.com/news-story/4855450-walking-and-talking-to-raise-awareness-about-kidney-disease/

CKWS-Newswatch at 11: http://www.ckwstv.com/news-on-demand/
To view: click News on Demand, Wednesday tab, newswatch @ 11 – starts: 4:33, ends: 6:24

CKWS-The WS Daily: http://www.ckwstv.com/news-on-demand/
To view: click News on Demand, Wednesday tab, Daily 2nd half – starts: 7:43, ends: 11:35

Station 14 Kingston: http://www.station14.ca/
To view: Click on the Taking Steps for hope video

TV Cocego Kingston – Look for an ad on the Message Board between shows on their station

I am truly thankful and overwhelmed with the amazing support the media has given us.

Those of us living with Kidney Disease feel the impact of fundraising and awareness pretty directly. We benefit from programs, research, financial aid and medical innovations, made possible from fundraising dollars. 

We appreciate the help. Our lives are improved because you care.

THANK YOU!!!

The Kingston Kidney Walk is this Sunday – September 21st!!

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Registration is at 10:00am at the Woolen Mill off of Rideau Street, btw. The walk starts at 11am.

Support this cause with a donation or with your presence. <3

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The Lived-Experience Expert Title. . .

I consider myself a lived-experience medical expert.

From my perspective everyone who’s experienced challenges in their health (who lived to tell) qualifies as a lived-experience expert.

My experience with Chronic Kidney Disease and Heart Failure has given me a lot to draw from. I was diagnosed at 18 and I’m in my 40’s now.

  • I did pre-dialysis, preventative chemotherapy.
  • I’ve done Peritoneal Dialysis.
  • I’ve struggled with the decision to be on the transplant list – with fear around living with the anti-rejection medications.
  • I’ve had a kidney transplant. I’ve lived the life of a transplant recipient for almost 13 years.
  • I suffered the failure and removal of a transplanted kidney.
  • I’ve done Peritoneal Dialysis with a cycler and the manual way.
  • I’ve suffered a near-fatal cardiac arrest.
  • I’ve been diagnosed with Thyroid Cancer.
  • I’ve been forced to transition from Peritoneal Dialysis to Hemodialysis in a time of near-fatal crisis.
  • I’ve done in-centre dialysis.
  • I’ve transitioned to home hemodialysis – without a care partner, no less.
  • I’ve used fitness to improve my health and change my life.

Quite a medical history.

And in between those major milestones were many mini-milestones that I could list – seemingly to infinity. Operations and procedures figure in here.

On an individual basis, I could write a book on each of the experiences listed.

The moments of fear. Feeling out of control. Of making peace. Of learning the practical “living-with” these medical circumstances. Negotiating through the medical world, with it’s challenges and obstacles, to advocate for my best care. There is a lot there.

When I first started volunteering as a Patient Experience Advisor, I began to realize how valuable my lived-experience was.

In having experienced these things, and also being comfortable to share my experience (in both personal and more “broader patient-specific” terms), I could help clinicians and executives understand the patient perspective. With the patient perspective we could collaborate to make practice and policy better.

I feel blessed that I am confident enough to speak, write and consult on what I’ve been through.

Sometimes my confidence comes from understanding that my fellow patients may be too sick to share their experience. Or too tired. Or not confident enough. Knowing that other patients can benefit from my voice, and input, motivates me to give this advocacy work my all.

I am very encouraged that medicine is finally ready to hear what patients have to say. I see the tide turn to where the KGH slogan, “Nothing about me without me”, is really being taken to heart. Little encouraging pockets of patient-centered medicine that are building in momentum.

I don’t think medicine should have ever proceeded without the patient voice. It seems like a no-brainer now. And now that patients are present at the table, I cannot imagine things happening any other way.

I think of it now like planning a wedding and not getting the input of the bride. It seems so ridiculous for medicine not to have ask us patients what we wanted. What we thought. And then to act without our input being included. To make assumptions about what we’d want and need as patients. Many times without the perspective of ever having been a patient themselves. Wow.

Medicine is for patients. Isn’t it?

When I think about my life I would never had guessed that my most valuable expertise would be built on the foundation of my blood, sweat and tears. Of my knowledge having lived with Chronic Illnesses.

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What I wouldn’t do to be an expert on astronomy? Or some kind of surgeon with a valuable specialization?

To be healthy and not know the things I know.

The price I paid to be a lived-experience medical expert is higher than any time spent in university . . . or the debt of even getting multiple degrees.

I would prefer to have $150, 000 in debt over my head . . . to have had an advance education (making me an expert), than to have lived and learned the hard way with these diseases.

Feeling this strongly, I am sure you’ll understand why I consider myself an expert. And why I feel I can ask for the respect that any expert asks for.

I paid a high price to know what I know. All patients pay a high price to know what we know.

Higher than I can properly articulate.

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