Information Project Announcement . . .

Embarking on the biggest and most important project of my life, thus far.

Working with Dr. Trisha Parsons of the Canadian Renal Rehabilitation Network to create an information package that will show and explain the benefits of fitness for dialysis patients.

As we’ve envisioned it, the package will consist of a patient and clinician perspective video (with regards to the benefits), 3 video fitness demonstrations that dialysis patients can follow along with and a short booklet to tie everything together. We hope to include some doctor and nurse perspectives in the booklet too.

So far I’ve assembled a project team. Dr. Parsons who is the big brains – the research and clinical perspective. A production/design company. A certified fitness instruction with experience with dialysis patients and special populations. A glam squad. A wardrobe stylist. And even an amazing location to shoot the video. A translation service is even in place so this package can be captioned and translated into French!

Pretty exciting prospects.

And because it feels so personal . . . and the message and benefit feels so profound, I feel very confident that this project will get completed. To use an overused phrase, this project feels like my “life’s work” or part of my “calling”. It means a lot to me.

Being me – someone pretty contemplative – I am thinking about the people I hope to impact with my part of this video . . . fellow patients and clinicians. My prayer is that they will get what we’re trying to convey.

My hope is that fellow patients, doctors and nurses will understand how powerful fitness is to the lives of people living with chronic kidney disease.

I hope that I am able to convey how powerfully fitness touched my life. I will go as far as telling them that fitness saved my life – because it’s true. I don’t think that I can overstate it.

I want every dialysis patient to wonder if their lives could be improved like mine was? I want them to be so curious to see if they will have benefit in their quality of life too. I want them to lose sleep wondering if their lives can be improved.

I want doctors and nurses to wonder if fitness will improve the lives of the people they treat? I want them to be moved to the point of feeling compelled to TRY – to see the difference fitness can make for their patients. Dr. Parsons has amazing information to share to bring this message home.

Throughout my part of the project, I will be honest. I will mention that adding fitness to your life isn’t all sunshine and roses. It is hard work. It does require some stick-to-it-ness . . . especially on the days when the couch feels extra good. Or feeling sorry for yourself seems like an easy out.

Bigger than the difficulties, I will mentions the perks.

Perks that have kept me fit for years now.

Perks that have gotten me over the hurdles and through brick walls.

IMG_0025

- confidence in myself as a fit person

- confidence in my body as it became strong and fit

- confidence to think of myself as healthy and whole as a person – despite being sick

- the physical benefit of fitness to my dialysis regiment and chronically ill body, e.g. increased appetite

- the psychological benefits of fitness as an anti-depressive and “good-chemicals-in-the-body” agent

- the social benefit of fitness (I’ve made a lot of great friends at the gym and I get a boost from our camaraderie in the group classes I take)

If I could send an open letter to all the people I hope this project will reach it would simply say . . .

“TRY fitness for yourself or for the benefit of your patients. Let go of all your pre-conceived notions about what having kidney failure means or what being a person with a chronic illness means. Give fitness a serious try and if you don’t see or feel any benefit then stop. But . . . I bet you’ll see benefit. You owe it to yourself to see how good your life can be, even with kidney failure”.

Wish me luck with this project. I am working to get the financials organized and then it will be time to execute.

I’ll keep you posted. In the meantime, you know where my heart and energy is.

*big smile*

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Deflating the power of a DIAGNOSIS . . .

I believe . . . in life there are some moments where disappointments or crisis steal our life energy away.

From my perspective, it’s like a bank account. We have a certain amount of life energy stored.

I do believe we can deposit into this account too – this just isn’t something negative. But I believe it’s a lot easier to deplete this store than it is to build it up.

One of my life experiences that truly depleted this energy store was my diagnosis of chronic illnesses.

“Karen Nicole, you have kidney failure”

“Karen Nicole, you have heart failure”.

“Karen Nicole, you have cancer.”

Those are hard statements for someone to swallow. They carry a heavy impact.

The declaration of physical disease in my body greatly impacted how I perceived myself. How I understood my time left in life. And it definitely impacted how chose to live.

Looking back I see that understanding myself as a “sick person” was devastating to my self-confidence. To the point where at my worst, I considered myself damaged-goods.

As soon as I was diagnosed, I believed I would die young, so I didn’t think of my life in term of long-term goals. I never thought of myself sitting on a rocking chair in a nursing home. I considered my late teen years as my “middle age”.

I allowed the diagnosis  to deflate me.

A great example . . . during all of the well times in my life I was a very physically active person. As a child I had dance lessons, swimming lessons, track and field and seasonal sports. After I had my transplant I completed a very physically challenging theatre acting degree; dance, stage fighting and fencing. When I was well and acting, I was in the gym on a regular basis through the week.

As soon as I was told I was in renal failure I let all of that physical activity go. I resigned to being a sick person. I lived my life as I thought a “sick person” lived.

Something very powerful happens with a diagnosis.

In my case, it was like a premonition of death. A sign for me to live life differently because death was eminent.

Looking back now, I see that I was a live person sitting in a coffin looking at my watch and waiting to die.

What sad a waste. 

I’m not sure exactly how I changed my understanding of my life . . . Now I think of myself as a person living life who happens to also have chronic illnesses. (A powerful reconceptualization of myself.)

This mind-shift probably arose through a combination of factors; an inner motivation, my re-introduction to fitness and the benefits of the fitness itself. 

I credit fitness with changing my thinking that dramatically! As it was the start in the shift in the way I thought about myself as a person living with illnesses.

uptown-jogging

Now I understand things differently. I see that nothing can be spoken over me and nothing can happen to me to rob me of my zest to live and experience this life.

This belief is fundamental now. It is founded all the way down to my soul – my most basic way of understanding myself.

I am capable and entitled to fully experience this life. And my task to is create a life for myself despite the physical circumstances that I am dealing with.

It’s like the work of an engineer. I just have to make what I have work. I might not have the same tools and capabilities as people without an illness but I can still “assemble” a life worth loving and enjoying.

I hope my presence can help remind people that no matter what “cross you’re bearing” there is a life there in it for you.

This is why I am so determined to advocate and share my experience. I remember what it was like when I didn’t feel like I had a life worth living. I remember when I didn’t think I could be “fit” and sick – really a sign of feeling normal. I remember when I couldn’t see past the denseness of my diagnosis. Those were dark, sad days.

I pray that people see my example (and the examples of others dealing with illnesses but STILL LIVING) so they can conceive live again themselves – despite tough health diagnoses.

And reclaim the life that was depleted with the words of the diagnosis.

“You have kidney failure”. “You have heart disease”. “You have cancer”.

THOSE ARE JUST WORDS.

Those words should never have the power to steal life from us.

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A Spirit bigger than Mesothelioma . . .

I don’t usually do this but I am going to use this post to talk about a disease other than kidney disease (or heart disease) and the journey I am on.

I receive a request from a husband, advocating on his wife’s behalf, to raise awareness on mesothelioma.

Mesothelioma is a type of respiratory cancer that people get from exposure to Asbestos.

His email went on to explain how his wife, Heather, was diagnosed with this cancer – 8 years ago – and beat it!! Her story is a rare case. She now lives with one lung . . . and from the photos he sent, she appears to be thriving.

Cam_Lil_HVSJ HVSJ_LVSJ

A few things struck me about this:

1. One of my good friends lost her father to this cancer when I was in high school. I remember the immense impact this loss had on the family. I always remember that difficult time.

2. I was touched that this couple had managed to stay together and overcome this incident. I know how hard illness is on a relationship from first-hand experience.

3. I appreciate anyone who aims to thrive DESPITE a difficult health experience.

Here’s some info on MESOTHELIOMA: (US info)

  • close to 3, 000 people are diagnosed with Mesothelioma each year
  • people are given (on average) 10 months to live with their diagnosis
  • this disease is difficult to diagnose because it’s symptoms closely resemble other respiratory conditions
  • symptoms may not appear until 30 to 60 years after exposure
  • Asbestos causes this cancer
  • Asbestos can be found in older homes, schools, factories and commercial buildings – and is dangerous when it becomes worn or damaged and airborne
  • no amount of Asbestos exposure is safe
  • it is possible to experience second-hand Asbestos exposure by touching clothing or items that have Asbestos fibers on them

There is a lot more to learn. Please go to http://www.mesothelioma.com for more information.

A point that resonates most with me is . . . no matter our diagnosis, however fatal, SOMETIMES we overcome. (My life is an example of that too.)

And bigger than just overcoming, we become compelled to share what we’ve been through to possibly improve the lives of other people.

I believe that’s the REASON WE OVERCOME. The reason we’re given the GRACE to overcome.

 

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What’s COOKIN’ on the Stove . . .

You know I LOVE a metaphor! (As corny as I can make them, sometimes. LOL!)

One of my favorites is the metaphor of “things” on your burners – on a stove.

Going full nerd on this metaphor, I like the idea of things on the front and back burners. I like the idea of some things finishing before other things. Managing that full stove.

(I can’t help it . . . I had good English teachers as a child. They gave me tools that I still use. Shout out to my elementary English teacher, Ms. Sue Keen – who is still in my life.)

pasta tomato sauce mushrooms cooking imperial oven kitchen

So . . . right now I have a lot of pots on my stove, so to speak. 

A lot of projects that I am participating in – and yet – not feeling overwhelmed. All of the projects seem to have their own life-spans – with no crunch-times coinciding together.

It’s definitely a special time . . . and I am proud to share what I am working on with you.

Here are some of the activities:

1. I gave shorts speeches to teams riding in the Heart & Stroke BIG BIKE fundraising event. It seemed to make a difference for teams to meet someone (me) who has benefited from all of the fundraising this organization does. I talked about my cardiac arrest, my defibrillator, Cardiac Rehabilitation, etc. (I cried when I spoke to the St. Mary’s of the Lake team, as I thanked them for taking care of my little brother, Jason, after he had a severe stroke in his mid-twenties).

2. I continued to speak at Kingston General Hospital. I speak to pre-dialysis patients some Fridays in a Pre-Dialysis Education lecture. I share my experience with different modalities of dialysis, since I’ve done both types (Peritoneal and Hemo – and variations within those types). I also talk to them about keeping kidney disease in healthy perspective and about my favorite topic – the amazing benefits of fitness for people living with chronic illnesses.

3. I continue to volunteer at Kingston General Hospital as a patient experience advisor. I’m concentrating my energy around working on committees specifically related to kidney disease – for now, in keeping with finding better time balance. I recently had a camera crew at my place documenting my experience with home hemodialysis – also showing how I organize my home to live with this treatment. My contribution will add to a video collection of local stories, about life with kidney disease from patients perspective and also from the perspective of the doctors. Looking forward to see this powerful video when it’s completed. It will be aired, in many ways, in the Chronic Kidney Disease unit of the hospital.

4. I continue to work with my life coach to help keep my head in the game – another metaphor. :) Working with Wendy Pentland has been a blessing as she keeps the bigger picture . . . my WHY, clear in my mind. I have also serendipitously met other positive “presences” along the way.

5. Working on the pitch for an education video for use in dialysis units with the help of Dr. Trisha Parsons (the chair of the Canadian Renal Rehabilitation Network). This project would help fellow patients, doctors and nurses to make first steps towards bringing fitness to dialysis units. This project feels very important and gets me very enthusiastic. (As I get closer to this goal I will share this project as it’s own post.)

6. Recently completed the manuscript on a Canadian adaptation of a guide book about patient engagement – written for the benefit of both patients and clinicians. It was a honor to work on a guide that is so powerful in changing the way we patients see our place in healthcare. This would also kind of be my first book – although it’s an adaptation of someone else’s book. (More on this later!! When I can I will report this as it’s own post – as a formal announcement.)

7. Working with the University Hospitals Kingston Foundation (a organization that does fundraising for Kingston General Hospital, Hotel Dieu Hospital and the Providence Care facilities around town). I shared my story in a “financial ask” donation-letter that will reach over 10, 000 people in our community. I was touched that UHKF felt my story could inspire people to help. It was especially touched that they chose to highlight my time at Hotel Dieu hospital as I participated in their Cardiac Rehabilitation Centre – a clinic I credit with saving my life. The next project with UHKF will be to complete a video for use on their social media.

8. I wished Trisha Parsons and Diana Hopkins-Roseel well as they shared my story (in scientific study form) at a Canadian Physiotherapy Congress recently in Edmonton Alberta. They shared my experience with fellow physiotherapists, showing my dramatic “before and after” medical results. I am so proud that my experience can help change the way medicine conceptualizes the possible outcomes of their patients. As the treatment of chronic kidney disease gives fitness the weight of medication (and medical treatment), physiotherapists will finally get to claim their place, front-and-centre, in the nephrology team. I am excited for that day to come.

That’s it . . .

I am very proud of my contribution to these causes. It means a lot to me that my experience, as a person living with chronic illnesses, can be constructive towards improving the lives of other patients. And influencing medicine in my little way.

Here are the links to some of the organizations mentioned above. (Check them out and see why I’m committed to helping them in their goals):

Heart and Stroke Foundation of Canada:

www.heartandstroke.com

Kingston General Hospital:

www.kgh.on.ca/

Canadian Renal Rehabilitation Network:

www.crrn.ca/

University Hospitals Kingston Foundation:

www.uhkf.ca/

Although I am not working directly with them now – still do check out the Kidney Foundation:

www.kidney.ca/

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I Spy HOPE on the horizon . . .

soft_case_for_brochureI had an amazing experience yesterday . . . I was invited to come to a sales meeting, at my hospital, with a representative from the NxStage dialysis machine company.

For starters, I was thrilled that I was invited to sit in on this presentation. It is further proof (for my money) that healthcare is really changing. That the patient perspective is truly valued. Kudos to Kingston General Hospital for putting their money where their mouth is. I sat down, front and centre, and participated. I asked questions. I learned a lot.

So . . . this NxStage company is pretty amazing. The technology takes home dialysis to another level.

The machines were made specifically for home patient use.

The set-up is less than a half hour – perhaps 20 minutes.

The machine doesn’t require all of the infrastructure – of plumbing and electric - that my current machine requires. Allowing for a lot of flexibility.

The NxStage process was patterned after Peritoneal Dialysis – as far as ease of operation and simplicity.

I have to say, I have been learning about this company and their machines for years through groups I’m on online and from their website and YouTube videos. I am so excited that these machines are in Canada. The technology has the potential to improve the lives of people living with kidney failure pretty dramatically.

So here I am in this meeting – feeling like I’m in a dream. I maintained my composure as not to squeal or giggle . . . although I was so excited that I could have!

So what does this machine mean to me?

This machine simplifies the lives of home hemodialysis patients. (On the on-line discussion boards I hear people refer to their machines as “Fisher Price”. )

Set-up, use, tear-down and clean up are significantly less time and less complicated processes. For me this would translate into more time in my life and less time spent on dialysis. As explained by the NxStage representative, I could have between 2 to 3 hours back for “non-dialysis related life per week.”

A more simple system means peace of mind for me. As it stands I am always anxious about dialysis. Remembering the months of training that I learned. Thinking about trouble-shooting. Keeping in mind the complicated machine and being ever mindful of what can go wrong. It is stressful.

With the system not needing special electrical and plumbing work patients will have more flexibility to bring hemodialysis home. This could mean home dialysis for a person who otherwise could not do home dialysis because of water issues, etc. This means not being restricted to always doing dialysis in one dedicated spot in your house.

This also means easier travel with dialysis. The system can be adapted to be portable. With the travel option dialysis patients can have a simplified travel protocol. As opposed to the numerous hoops we have to jump through now to travel – coordinating with other dialysis units.

Why I am sharing info about this company and why am I so excited???

Life with a chronic illness is hard. Anything that makes this life easier and better is GOOD.

Anything that improves the quality of life for patients is GOOD.

NxStage, like anything isn’t perfect and certainly isn’t for everyone but it represents another dialysis modality option.

Not just an “up-grade” on what already exists but a thoughtful, from-the-ground-up reconceptualization of how dialysis could be.

That gives me a lot of hope. For one, it shows that people really care about the lives of people doing dialysis. Cares enough to think very thoughtfully about what we go through, what works for us, and how our lives can be improved.

That blows my mind.

Some really smart people put their heads together to come up with something that can improve my life – and the lives of other patients. I want to hug these smart people and say “thanks”. I really do.

This innovation also shows that science is working on improving the lives of people living with this disease. Improving our lives is on the agenda and progress is being made. It makes me feel so hopeful.

BTW, I don’t care what the higher agenda is in this situation. If this machine has moved forward because it costs less (or this or that political reason), frankly. All I care about is the lives that will be improved. Qualities of life that will be better than they are now.

Bigger picture?

This meeting gives me hope that the next time I need to do dialysis, after my next transplant fails (which it eventually will), there will be better options available for me. Options that will make me want to stick around to try dialysis for the third time.

That means a lot to me. So I know I’m not the only one who feels like this.

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Finding my WHY??

PREAMBLE:
I would like to apologize for not keeping up with my blog recently. I am a person who listens inwardly to the ebbs and flows of my life and when I listened in recently (to consider what to write here) I just didn’t have much in me to give.

I have asked for inspiration and energy to move forward with my writing. I literarily prayed to be inspired . . . and here I am, up at 6am writing my first blog post in a while. (Ask and you shall receive. The timing of when you’ll “receive”? Ummmm . . . errrrr, I better just write and keep my criticism to myself! )

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My WHY??

Taking a course on marketing for authors and speakers and a guest lecturer prompted me to consider my “WHY”?

Why?

In my case, why am I committed to sharing my story and experience as a person living with kidney failure and heart failure?

I could just concentrate on the work that my life requires to be well. That’s energy to get on the machine, to get to the gym and to make choices about eating well and feeding my soul – through meditation and good reading. That sounds like enough?? 

I do more effort, than simply the basics, because I found my life’s purpose in sharing my experience for the benefit of other patients . . . and for medicine to learn from. I believe my messages can make a difference.

I’ve actually wrote out a list of what I want to give in this lifetime. My “WHY in action”, so to speak:

• share my experience as an example of sick to fit – being fit despite being chronically ill

• share my experience as an example of someone in peak-ish physical shape despite being chronically ill

• share my experience to inspire hope (feeling well and having sick/life balance) to others with chronic illnesses – and with well people too

• share my experience as someone who did not let health concerns become the focal point of my life

• share my experience as a person who has no choice but to have “me time” and life balance

• share my experience to show medicine that there is benefit for their patients in adding fitness to their lives – even if outcomes are considered anecdotal and not as “scientifically significant” as my outcome was

• share my gut-honest truth as to what my journey was like in evolving from a sick person (who didn’t know she could be fit) to a fit person who lives with chronic illnesses

• share my words, my presence, my voice, my consultation to improve ideas, from patient’s and from medicine’s perspective, to improve the medical system in my small way

• share my passion and heart to make a difference for fellow patients (and well people) in any way I can

• share my on-going presence to aid in fundraising and raising awareness for causes and organizations

• to create a non-profit cause for dialysis patients and Stage 5 CKD patients (more about this later)

• sharing all of my stories, e.g. independent dialysis, patient advocacy, patient experience advising, “me time”/balance, etc. (And all of the other messages that emerge as I continue to live.)

• build myself up towards being a servant leader – as I am in the position to speak with more patients, advocate on improving their lives in ways they want

• share my spiritual journey as it relates to my life – for those who are interested

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Looking at this list I feel daunted, invigorated and excited . . . many different feelings. (I think your WHY should invigorate you?)

As the guest lecturer suggested, I have printed out my WHY and taped it up so I see it daily.

If I can keep my “eyes on the prize”, I shouldn’t worry about lack of motivation. If I truly believe that my life’s purpose is around using my experience to help others then it is paramount that I get to doing the work.

Who knows who our (all of our) lives are meant to impact? And in what ways?

 

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