Sharing for a CAUSE . . .

Very honoured to be asked to be the local spokesperson for the Heart and Stroke Foundation  – in Heart Month. This Heart Month the emphasis is on RESEARCH. 

Of course I had to support them.

My quality of life is great because of cardiac research and that’s reflected in my medications, my surgically implanted defibrillator, my participation in the Cardiac Rehabilitation Centre at Hotel Dieu, the protocol and tools used to save my life after my cardiac arrest in 2011 (March 15th).

I have a lot to be thankful for.

Here are two links to features.

CKWS News . . .

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http://www.ckwstv.com/2015/02/23/heart-stroke-month-a-cardiac-survivors-story/

Station 14 News . . . 

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http://www.station14.ca/video.html?id=1794

PLEASE support the Heart and Stroke Foundation. 

http://www.heartandstroke.com/site/c.ikIQLcMWJtE/b.2796497/k.F922/Heart_Disease_Stroke_and_Healthy_Living.htm

Follow the link to learn more about Cardiac Rehabilitation:

http://www.hoteldieu.com/programs-and-departments/cardiac-rehabilitation-centre

The research improves the day-to-day lives of people like me.

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READING A Transplant Surgeon’s Journal . . .

It’s not often that you read or learn something that brings you a completely new perspective.

I am reading a book called, “Breathless: A Transplant Surgeon’s Journal – A Tribute to the World’s First Successful Lung Transplants” by physician, Thomas R.J. Todd.

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A colleague lent it to me a while ago, insisting that I would enjoy it. I let it sit for a LONG time and finally one day I was ready. (My boyfriend was apprehensive that the book was positive for me but . . .)

The first day I read it, I was in tears. Not “misty-eyed” either . . . sobbing.

I had thought it would be full of medical jargon and self-congratulatory “doctor business”.

Instead I found a humble and candid “journal” from the doctor’s perspective in a surprisingly human tone. The tribulations and cautious triumphs of the early days of lung transplants at the Toronto General Hospital.

The co-stars of the show, so to speak, are the patients.

Dr. Todd described each patient with obvious love and admiration. Through this book, solidifying their place in the history of lung transplants, for the sacrifice they made so the medical team could learn and build in confidence and success with their program.

I cried because this book showed me that many patients died in early attempts at transplants before things began to go well – protocol and practice-wise. Patients just like me – hoping for a better life.

I am not finished reading yet. I am only able to read a little bit each day – in the morning before I start my day. (As part of my daily positivity ritual.)

From the first day I began reading, I considered that there is someone who could (or perhaps who has) written the same book but from the Kidney Transplant Surgeon’s perspective.

Someone who like, Dr. Todd, cared about people living with disease. Wanted to figure out how to give people the precious hope that more time (and more life) gives. And therein a chronicle of the patients whose lives were sacrificed in order that kidney transplants improve and progress as a treatment for saving the lives of people with Chronic Kidney Disease.

I am moving forward with a different appreciation of the history of organ transplants. From the lung transplant perspective but also from the perspective of kidney transplantation and beyond.

I am so thankful for the doctors and researchers who care so much about the possibility of improving patients lives.

Physicians who dream of solutions.

Who challenge ideas of what’s possible.

Whose bravery improve lives.

Thank you to Dr. Todd for helping me see and understand this perspective. To consider whose broad, brave shoulders I stand on as an organ transplant recipient.

** Remember I had my first kidney transplant in the 90’s and it lasted me 13 years. :)

I am especially moved to tears with the reminder that many of these “shoulders” are fellow patients who were brave to take chances with early transplant technology but ultimately whose sacrifice taught medicine so much through their experience.

Thank you. Sending out a seriously heartfelt thank you.

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Vlog to kick of 2015!! (And my WISH . . .)

Happy New Year, everyone!!

Thanks for your continued support. 

Below is a video post to start 2015 off . . .

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http://youtu.be/KpPOekiHafs

Here’s to 2015 being an amazing year for all of us.

Best,

Karen Nicole :)

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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.

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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.

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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.

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

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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.

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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.

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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.

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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*

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