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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From Icon to Man: Nelson Mandela . . .

I try and read something first thing in the morning to inspire me. I probably only read about 10 minutes each morning but it sets a good tone for starting the day.

(Some days, I must admit, I get side-track with Facebook and my emails, but on my best days I go straight to my books.)

Right now I am reading a book called, “Conversations with Myself”. It’s a collection of letters and conversations documenting Nelson Mandela’s life before, during and after his incarceration.

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I’m finding a lot of amazing surprises . . .

Moments of simple humility.

Moments of superhuman bravery.

A touching vulnerability.

Sadness of depths you don’t wish for any human being.

Words evident of unconditional love and empathy.

Actions that speak to broad priorities . . . more broad than most people ever have to consider.

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The person who appears on these pages, of neatly written letters and transcripts of conversations, is fundamentally just a person. A person like you or I who can rise to have a powerful impact on the world.

I think sometimes we underestimate the power and impact we’re capable of. We don’t believe we can make a difference so we don’t even try.

Through Mandela’s own words I see emerging a whole, real person.

This book reminds me that Nelson Mandela is a lot more than icon – to be put on a pedestal.

As an icon we forget that he was a man.

He was real just like us.

For me there is a value in remembering that.

 

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Vlog (Video Blog) on Patience . . .

After some gentle pressure to vlog, I have done it.

(Thanks to the “pressurer” . . . you know who you are.)

I have to admit, the process was a lot less painful than I remembered it being.

I am, tentatively, going to commit to trying to do videos on a more regular basis.

Here is the link to the video on YouTube:

http://youtu.be/jRDhJd-9f0k

Here is a screen-grab of the link:

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Thanks for watching. :)

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Nudge, Nudge, Say No More . . .

Today I received a gentle nudge to remind me about doing video blogs. How I should consider doing them more often.

And reminding me that short videos are probably the most powerful way to communicate these days. 

Point taken. (Thank you.)

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I do find it a lot easier to just write something and then find a complimentary image to accompany the post – using Google.

Perhaps it’s time to step up my game?

I have a good post topic lined up to explore, in a video, later this week. I even went and looked at standing camera tripods today. (I am taking this seriously, people.) :)

Look for a video blog (vlog) from me later on this week.

I appreciate the feedback.

* Hope someone appreciates my Monty Python skit reference in the photo. It’s “funny to me”.

** Disclaimer: Please do not hold my self-produced videos to the standard of the “Video Intro” on the home page of this blog. That video was professionally produced – using multiple cameras, sound and light kits. My videos will be a little more low tech. *sarcasm* 

It’s about the message – not so much about the medium. (Although, I will try my best.)

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