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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Boomerang Kick in the Pants

We’ve been at this advocacy thing for a while now. Sure, we’ve moved the bar by an inch or so, but if we are to be honest, we thought that we’d be a lot farther by now. We thought that Jim’s story would have provided the proverbial kick in the pants that people seem to need in order to sign up to be organ donors. Looks like more is required, which is like our kick in the pants ricocheting off of others and kicking us back. What to do?

It would be easy to say that we’ve done as much as we can in this area, but we know that there are thousands on the waiting list today. We cannot and will not turn our backs on them and their families and friends. So, we’re gearing up for another kick at what has proved to be the most challenging and illogical conundrum. We’re looking at you – if you don’t know why you should sign up to be an organ donor, we’re going to tell you. If you need more than Jim’s story to motivate you, we’re going to tell more. If you need to be reminded that it could be you on the waiting list, we’ll let you know.

Get ready.

#beadonor #jimshearts

GetReady

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Blessings on Your Silver Anniversary

Three years ago we shared a message from Marah that was filled with desperation. Jim was very, very sick and a new heart seemed almost impossible. The message, on their 22nd wedding anniversary, went on to circle the world with almost 15,000 people sharing Marah’s anguished words.

Today, Jim and Marah are celebrating their 25th. To “celebrate” seems like such a little word, considering the path they’ve been on from despair to hope to life. Since April 30, 2015, the day Jim received his miracle of life, every milestone has become so much more meaningful. Jim and Marah are gratefully aware that on April 30, 2015, another family lost someone precious to them, and shared life with another. Celebrations like today’s will always include the family who made it possible.

Many happy returns of the day Marah and Jim – Happy Silver Anniversary! And many blessings to the family who gave the ultimate gift: life.

Be inspired. Be a donor. #jimshearts

anniversary 25

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