Trim for Jim: The Story

Jack was only 15 years’ old when Jim first began his journey on the heart transplant list. At the time, the connection was boys’ minor hockey, where Jack played with Jim and Marah’s son Brett. As far as hockey communities go, this one was a tight-knit group with supportive parents, great coaches and an amazing association executive. They pulled together in a big way to support Jim and Marah during the unimaginable trials of waiting for the gift of life. The hockey boys did their part too. As they each turned 16, they automatically signed up to be organ donors. Jack signed up even before he got his driver’s license. The kids didn’t understand that it was even a question – of course they would be donors.

Fast forward almost eight years and the hockey teams have dispersed, hockey parents no longer gather at the rink multiple times a week and the kids are adults. But such were the connections and friendships forged all those years ago, that the sense of community remains. When it became clear that Jim and Marah would be embarking on another unfathomable journey along the organ donation path, that community started asking what they could do.

For Jack, this meant putting an idea long considered into action. About fours year ago, Jack decided that he would see how long he could go without getting a haircut. It wasn’t his intention to rival the Allman Brothers, but the years went by quickly and his hair was now fantastically long. So long, that he knew it would be an event when he finally made the move to chop it off. Despite his grandmother and mother pushing for the haircut, Jack held out for the right time and the right cause and this December’s “A Trim for Jim” was born.

A Trim for Jim was very successful, and many thanks go to those who contributed and made it all possible. Special thanks to Gino from Nick’s Barbershop in Manotick, Ontario for doing the honours! Jim and Marah made an impression on Jack, but also the ever-growing community (worldwide!) of organ donation advocates who follow their story. Jim and Marah will tell you that they are grateful for Jack’s efforts and that they will “pay-it-forward”, but the truth is, the impact they have had in spreading the word about organ donation is absolutely priceless. We are honoured to help in this small way, as Jim and Marah deserve it and more.

A Trim for Jim is complete, but the need for organ donors is never-ending. Sign up to be a donor today.

#jimshearts
#beadonor

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Just Imagine

Imagine ascending to the peak of the highest mountain after a treacherous climb filled with setbacks, danger and unforeseen obstacles. Imagine your elation at finally stepping foot on the summit, surveying the path you took and reflecting on the grit, tenacity and support from your climbing team that got you there. Imagine now that as you survey the beauty from your majestic perch, that the clouds clear and you see the steep incline of the path toward the next peak – the climb you must still make to reach the summit. Imagine.

Our Jim has already climbed his first mountain – a successful heart transplant, the path to which was filled with so many obstacles, uncertainty and fear. As with too many transplant recipients, Jim has found that after more than five years, the clouds have cleared and the arduous journey toward a second, much-needed heart transplant is upon him.

Jim will not be climbing this next mountain alone. His unfailingly strong wife Marah is at his side together with their whole family. A full community of supporters are behind him as the next journey is contemplated. But this is not what will get Jim to the summit again – it will be the selfless gift of life provided by an organ donor and their family.

Giving Jim and the thousands of other Canadians waiting for an organ transplant the hope they need is as easy as signing up to be a donor. We urge you to sign up now and tell your family of your intentions. We ask you to talk about this with your friends and encourage them to do likewise. Be part of the organ donation community supporting Jim and others on their journeys. Just imagine the difference it could make.

#beadonor
#jimshearts

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Come Together – Right Now

We can’t get the Beatles song Come Together out of our heads. It’s probably not super-appropriate, but it’s what we need to do for our friend Jim and his family. You need to sign up to be an organ donor and let those you love know and understand your intentions. You need to encourage everyone around you to sign up to be an organ donor.

While we hoped and prayed that Jim’s battle was finally won more than five years ago with a miraculous heart-transplant, it seems the battle has been renewed, as is sadly the case for many transplant patients. Over the past several months, Jim has faced many ups and downs in his health. Most recently, Jim was admitted to the Critical Care Unit at the Ottawa Heart Institute for urgent care. He is of course receiving the best treatment, but the reality is that the requirement for a new heart is imminent.

To face this road for the second time is beyond daunting. Have there been improvements to the organ donation system in Canada over the last five years? Yes. Are they enough to have shortened the waitlist for a heart transplant? No. Is there anything we can do to support Jim and the too many others waiting for the gift of life? Yes – we can come together right now to shout about organ donation to everyone and anyone. For today, you can add the be a donor link to all your social media profiles and share the Jim’s Hearts story. For tomorrow – we will come together to figure it out.

#jimshearts
#beadonor

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2020: Brought to You by the Letters W, T and F.

The challenges presented by 2020 are legion. In the midst of it all, some bright spots shone extra brilliantly too: babies born, new careers, graduations and milestones achieved. One of those milestones was the 5th anniversary of Jim’s gift of life – a successful heart transplant. But 2020, true to form, was not done with Jim.

Recently, Jim, under the excellent care of the Ottawa Heart Institute, was diagnosed with cardiac allograft vasculopathy (CAV). CAV is essentially an accelerated type of coronary artery disease in people who have had a heart transplant. It messes with blood flow to the heart and with the heart muscle itself leading to the need for a repeat heart transplant. Jim’s medical team, seeing him on a weekly basis, hasn’t put him back on the transplant list just yet but doctors have told him that the treatment for CAV is transplant so it will come. Marah and Jim have faced this wait before of course and they know what they are in for. Just being back in the transplant environment is painful for them, seeing so many others waiting and hoping for the miracle. They look ahead with hope that the future is bright.

We as their community of friends, family and caring advocates share this hope and puzzle at the world in 2020. A friend of ours wrote a compelling piece about how he always used to think that when faced by a shared threat (i.e. COVID19) we’d come together to defeat it as one. That our survival instincts would be the thread that stitches us together and overcome the more tribal and individual approach that isolates and defeats us. Of course, he was disappointed. We all are. Perhaps a global pandemic is just too big to consider? Too many faces, too many fears, too many unknowns?

The conundrum is that the story of Jim’s Heart doesn’t reflect this new reality at all. It is about true community, love and hope. It’s about coming together to think about Jim and every person on a waiting list for a life-saving organ transplant and doing what we can to raise awareness, signing up to be a donor and educating ourselves on what it all means for Jim and for Canadians. We are in it together and we’ll continue on this path with Jim and Marah, bid adieu to 2020 and leave it and its false message to humanity behind.

Community.
Hope.
Love.
2021.

#beadonor
#JimsHearts

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Next Chapter

We’ve been a little quiet for a while, with the news of the day continuing to revolve around COVID-19 and the impact to everyone’s health and well-being. Like many of us, Marah and Jim were impacted personally by the international pandemic. Marah in particular was faced with early retirement from her long-time job with a Canadian airline and had to unexpectedly imagine where to go next. And where she landed couldn’t be more perfect.

Marah has started a job with Canadian Blood Services as a Donor Services Representative. She is the person who greets blood donors and answers their questions (and also does the COVID-19 assessments). Marah says “it’s my chance to greet people in a welcoming way and make sure when they leave that I have a chance to personally thank them for the gift they have given”. Marah’s co-workers have decided that she knows everyone in the city because not a shift has gone by where she doesn’t know at least one donor. And while that is impressive, Marah has decided to go even further on this new path by heading back to school to train as a Medical Laboratory Technician – with her end goal working as a phlebotomist for CBS.

Marah is inspired by the donor family who gave the ultimate gift of life to Jim five years ago. We are inspired by Marah and Jim who continue to “pay it forward” every day. We hope you are inspired too and register your intent to be an organ donor and to also give blood!

Well done Marah. We couldn’t have imagined anything more fitting for your next chapter. xo

#beadonor
#CanadasLifeline
#jimshearts

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Jim’s Heart

The saying that a father holds his daughter’s hand for a short while, but she holds his heart forever might have been written for Jim and his beautiful daughter Ellis. Their bond is strong and the brass ring of walking his baby girl down the aisle “one day”, kept Jim going throughout the sometimes devastating journey of heart transplantation.

When faced with the unimaginable consequences of serious health issues, it’s common to look at milestones in life or special dates in the offing as something for which to strive. Many of us who have taken the journey along with Jim and Marah know that the milestone for them was always Ellis’ future wedding day.

Jim was able to grab that brass ring only a few weeks ago when he walked Ellis to her soon-to-be husband. The joy on both their faces is beyond inspiring, it’s miraculous. It’s a wedding moment that always brings a tear to your eye, but for Jim, Ellis and those who love them, it threatened a tsunami of emotion. It’s a moment of pure love and possible because of the generosity of a stranger whose donated heart provided Jim this day (and many more).

Here’s to many more milestones Jim, and here’s to Ellis and Michael and their very bright future. Xo

#jimshearts #beinspired #beadonor

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#NOTDAW

This week is National Organ and Tissue Donation Awareness Week. #NOTDAW  There is so much going on in this space right now including Canadian Blood Services ramping up to be a national voice of change and the Canadian Donation and Transplantation Research Program providing foundational research and working toward turning transplantation into a cure. We are enjoying this positive momentum!

Having been deep in the trenches of organ and tissue donation for some time now, we see a lot and read a lot. It’s hard not to get jaded when despite good people working hard to change the story there are still over 4400 people waiting for the gift of life and too many will wait in vain. What keeps us going is the smile of one person who started us on this journey. Jim received his gift of life, and he and his family pay it forward every day in gratitude to their donor.

We are thankful for the renewed efforts of some of our national programs and we are thankful for provinces that are going the extra mile to initiate presumed consent legislation and we are thankful for everyone who has been inspired to sign up to be a donor. This week, share what you know with someone and be part of the positive momentum.

#NOTDAW
#jimshearts
#BeADonor

Jim Smile

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Into the Future

The complexities of organ donation in Canada have had us diving into a few rabbit holes over the last several months. In an effort to regroup, we’ve paused to gather our thoughts a bit.

It seems to us that the status of our organ donation system is at the “emergency level”. This means that the wait list is unbearably long and some will die waiting. This doesn’t mean that there aren’t incredible things happening in organ donation in Canada, because we know there are and we can feel the momentum for change. It does mean however that change is critical for Canadian families and yes, it is an emergency.

The next status level is what we’ll call the “sustained level”. We imagine this to be a Canada where wait lists are not a place to languish and do not make you sicker. This is a level of organ donation where we all agree that we are organ donors when we die, and all viable organs find a recipient. Though we are well aware of the complex change that it will take to get to this level, it is tantalizingly possible – and maybe sooner than later.

The level that we should all be striving for is the “curative level”. If we can peek into the future, we see a Canada where dialysis is a blip on the radar and kidney disease is treated routinely and swiftly with transplant. The agony of congestive heart failure will not be endured because a heart transplant can happen for anyone. Maybe children with type 1 diabetes can have pancreas cells transplanted and be cured instead of dealing with a chronic disease their whole lives. This level is about considering organ transplant as a cure, not as a last resort.

Regardless of the “status level” of our organ donation reality in Canada, it will always be the most amazing gift that one human can give to another: the gift of life. As we look into the future of what may be, remember that we are all part of it. Show your support by signing up to be a donor.

What do you think of our thought gathering? Does this resonate with you?

#jimshearts #beadonor

Status Levels

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(Not) Dressed for Success

We’ve been advocating for Canadians to register to become organ donors for a long time now. Truly, we’ve been fairly pleased with our impact, though in the grand scheme of things, it’s hardly been a ripple. We’ve seen Canadians step up and sign up in times of great tragedy, and we’ve been impressed with the level of advocacy in this area. And yet thousands of Canadians remain on the wait-list for organ transplantation.

We’ve begun to open our eyes to the full picture in Canada. We’ve talked to people at the Canadian National Transplant Research Program (CNTRP), and have broadened our reading list to include more than just the conundrum of those signing up, or not.

What we’ve learned has caused us to pause for a moment to consider how we can contribute to improving organ transplantation in Canada. While it is important to continue to advocate for organ donation among all Canadians, the biggest impact will likely come from improving the way health care in Canada is set up to actually succeed in this critical area. As of now, we are not dressed for success.

In order for someone to successfully become an organ donor, so many things need to go just right. From the type of hospital, to the appropriate staffing, to the unit in which you are being cared for, whether or not mechanical ventilation is part of the care, process and practice regulations/rules, (and so much more) – all these elements must occur in a specific way. Unfortunately, it doesn’t happen often enough.

Through a Canadian Institute for Health Information study, we learned that only about 1 in 6 potential donors become actual donors. If this could be addressed/improved, Canada’s wait list would be mostly fulfilled.

While these rather startling realities hit home, the notion of improvement is not a simple one. We are going to take some time to figure out how we can contribute, understanding that there is a great deal happening in this space. In the meantime – sign up to be an organ donor and be part of the discussion.

#jimshearts

green_ribbon_hope

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Discouraged

We were full of vim and vigor this summer. Yup, we were going to kick some proverbial butt and have some serious impact on the organ donation conundrum in Canada. But we didn’t. We’ll admit that we became a little discouraged at the numbers. The number of those waiting for a life-saving transplant; the number of Canadians still not signed up to be organ donors; and most devastatingly, the number of people – children, parents, friends, wives and husbands – who died waiting.

What has called us back to the table? Well, it’s not numbers. It’s people. People like sweet little Zaccari in New Brunswick waiting for a kidney. And people like Jim. Jim’s road was as rocky as you can imagine, but this summer he finally seemed to turn a corner towards health and happiness. A long, long road.

We bumped into Jim quite by chance not too long ago and we were absolutely struck by how fantastic he looks and sounds. It’s a miracle, and one worth reinvesting in.

We want more miracles. Sign up to be a donor today.

#beadonor #jimshearts

Jim Nashville

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