Author: lifeAdmin

I like to touch a jewelry cylinder hanging around my neck when I speak about organ and tissue donation. This cylinder contains my son Adam’s ashes. Touching Adam strengthens me. I find my voice, his voice.

Adam was fond of his name, as he was identified as a girl at birth. His mom intuitively knew she was carrying a boy; we called him Adam while still in the womb. We named our child Rebecca Adam. Rebecca revelled in the boy’s middle name. All tomboy! Batman and Montreal Canadiens’ goalie Carey Price were his two heroes; a game and position Adam loved.

My son’s final five years of transitioning unfolded during his late teens and early 20s. His transition dovetailed with another epic journey, an epilepsy disorder that repeatedly knocked him to the canvas. Adam bounced back up every time, enduring two brain surgeries, the last one promising in 2015. His brain scans looked like Canada Day fireworks. Flares pointed to a trigger point deep within the brain. Removing that brain tissue might control the seizures.

Adam said surgery was a “no brainer”. He wanted his drivers’ licence back, play hockey, become a boy.

Two months after his surgery, I was in California visiting my sister. Adam’s mom called. Adam had a seizure in a hot tub, was resuscitated and rushed to hospital. When my sister, a nurse, dropped me off at the airport, she grabbed my arm. ‘“Hon, we want Adam to be well. But, if it is not to be, he is a young man with healthy organs. I know Adam wants others to have this gift from him.”

For the entire red-eye flight home, a good angel and a bad angel competed for my son. I root for a miracle. I plan a funeral.

Back home, I joined a 36-hour vigil. Adam’s Mom and I are separated but still lovingly co-parent. I bring up organ and tissue donation. Mom is not ready for that discussion. On the final night of our vigil, with Adam laying between us, she tells me she knows what Adam wants. At 16, when his driver’s licence came, he asked about the organ donation box. He said absolutely he would donate his organs if an accident happened. He is a registered organ donor. There was no hesitation from Adam when he chose to save lives by registering as an organ donor. There would be no hesitation from us. I knew the long list of people waiting, some who die. Judging no one, I never understood burying or cremating healthy organs and tissues.

Adam made me a better parent. He’s reminded me that I am still his Dad and he’s now my teacher about life. I understand how important it is to know your loved one’s final wishes because family consent is required even if someone is a registered donor.

Three weeks after Adam died, Trillium Gift of Life Network wrote that four people would live because of Adam’s generosity: “An adult female with extensive liver damage. Two adult women with end-stage renal disease, ” began the letter. My son’s final act is overwhelming. Our grief is permanent because our love for Adam is permanent.

The gratitude from the donor recipients pushes me through more walls of grief. We watch as many of Adam’s friends register as donors. Scars circle to love. We smile when we read a fourth life has been saved. Our son’s brave, beautiful heart has been gifted to a man.” John Dickhout, that man, sleuthed his donor identity and we have become good friends.

(Soar, Adam, Soar, Rick Prashaw’s book on Adam’s life, Dundurn Press, is available locally at several indie bookstores and at www.rickprashaw.com or Amazon, Indigo sites.

Rick – Donor Father

As far as I can remember, my family always freely discussed organ donation when the subject arose (usually from a news story). We were all voiced our position in support of organ donation. Never did we ever truly think how important organ donation would be years later. In the winter and spring of 2014 my mother started getting quite ill. In April of that year we heard the diagnosis of liver cirrhosis from NASH (Nonalcoholic steatohepatitis). By June we discovered she was in end stage liver failure and the only recourse to save her was a liver transplant. Immediately I knew my course of action was to be tested as a potential live liver donor for my mother. While at the time I was unaware of the stats for transplant rates for livers from deceased donor, I did know that my mother would get tremendously sick before being high enough on the transplant list to receive a liver from a deceased donor.

Watching someone you love slowly get eaten away by any disease is quite simply heart wrenching. In my mother’s case end-stage liver disease manifested itself primarily in the form of ascites (swelling of the abdomen, it shocked me just how much fluid an abdomen can hold), jaundice, bruising and itching and most maliciously Hepatic encephalopathy. As the liver is scarred, it becomes unable to remove the toxins from the body resulting in deteriorating brain functions. My mother essentially became a stranger, from an absolute curmudgeon to a helpless toddler unable to remember the most basic tasks. Luckily these episodes were short in duration but were most difficult to experience with her.

By the fall of 2015 my mother was officially placed on the transplant list and I began my assessment to be a living donor. Making the decision to be a live donor is not one to take lightly. You are essentially putting your life on hold for several months and are quite literally putting your live on the line. My mother initially resisted the idea of having her child go through this for her but accepted my wish to do proceed with the testing. In an ideal world, living donors would not be needed. In an ideal world, there would be enough organs from diseased donors for everyone who needs an organ. Sadly that is not the case and too few organs are available hence the need for living donors. Nevertheless, being given the chance to be a living donor is not something I take lightly. There is something immensely satisfying in being able to do something rather than standing powerlessly on the sidelines as you watch a love one slowly die, as is heartbreakingly the case with so many other diseases.

After several months of testing, horrible dieting (I, too had a fatty liver that I needed to rectify in order to donate to my mother), I received the news that I would be able to donate to my mother. There are not enough words to convey what it felt like to be a donor. Grateful is one that comes to mind. Gift is another, because yes, I felt like it was a gift for me to be able to do this. Every birthday, Christmas, Mother’s Day, and every day in between are gifts and blessings that my mother is still here. She was given a second chance and I am immensely grateful that I was able to do this for her. I am thankful for every extra day, month, year that she is here is with us because were it not for organ donation I would not have this story to share.

Nadia – Living Liver Donor

My reason why…

A good and strong heart now beats in my husbands chest .
A heart that was well loved and cherished . The proof of this ,when the look of wonder and awe appears on my husbands face as he places his hand over this heart just to feel the beats .

Our journey to this moment began over 16 years ago due to my husband contracting pneumonia , with an infant and three year old at home , to continue working was the only option . Severe damage was done by the virus attacking the muscles around the heart .

With the passing of time there were plenty of “normal” years but our children found their father lifeless on the ground or floor too numerous times to mention . These moments are imprinted on our hearts forever . The last 6 years being the worst of it . A heart injection fraction of 6% , blue lips , lungs filling up with fluid and still he tried to work to save us losing our house and keep the creditors at bay .

He’s quite the fella you helped save .

An implantable defibrillator, flat lining more times than could be kept track of and then an LVAD (Left Ventricular Assist Device) .

No more beating heart.

As I put my ear to my husbands chest only the barely audible
whooshing of a machine and eerie blue light reflecting on the ceiling show he’s alive . He’d defied all the odds and yet ( ?)

Waiting ……..

Over 2 years on the transplant list , often days seemed like a nightmare taking my breath away . A bad dream that when you waken you try to rewrite the outcome of the story but to no avail . I’d often been told to prepare for the worst and yet still I believed . The only way we’ve managed is with the outpouring of love , prayers and support from our Family , Friends and community . All of this a tribute to the man my husband is .

This is now OUR story .

Seemingly in the blink of an eye my family awakens . Our eyes , arms and hearts wide open . What brought us to life again was the sound of a beating heart !

As I lay my head to my husbands chest now I hear this beating , one for his life and one to honor a soul in passing . That you chose to donate , to pass on the greatest gift , your love of life is inspiring . I feel a deep trembling inside , such joy but equaled with such sorrow at your loss . Over the years no matter how daunting the news I’ve held back my tears . Now I know I was waiting to shed them for you .
There are many languages and ways to say THANK YOU but all of them seem so inadequate . We truly do not have the words for the depth of our feelings .

My only way of expressing our thanks is by sharing this outpouring of Love we’ve experienced along our journey . In times of sorrow , our Family , Friends and those we hold dear hope you can look upon these photos and know how surrounded you are by our love and gratitude .

Your loved one in his passing will not be forgotten . My promise to you and those you hold dear.  He is now loved , honored and will be cherished.
All of this in tribute to a heart that beats on .

In loving memory 30th April 2015 New Life 01 May 2015

Marah – Caregiver and Wife

In 1998 my mother was diagnosed with Polycystic Kidney disease. A condition that affected both her kidneys, had no cure and would progressively end up in complete kidney failure without a new kidney. Up to this point my mother had been living life to the fullest – healthy and active. Fast-forward to 2002, my mother’s health and quality of life had deteriorated quite significantly. Her kidneys were barely working and had already been placed on a wait list for a kidney transplant. By this time, she had also started dialysis. This was a very difficult time for her and our family as we juggled our schedules to become my mother’s caretakers and companions to all her many medical appointments. Couple of years later with mom’s health declining fast our doctor talked to the family about living donation. We were very excited to find out after a series of testing that I was a match! On January 11, 2006 I donated a kidney to my mother. The surgery went well, a couple of ups and downs during recovery but overall, everything went as good as it could have. My mother’s health improved as a result. She was able to discontinue dialysis and do what she had enjoyed doing again – travelling. Not having to be on dialysis was freedom to her. It’s been 13 years since the transplant. Aside from other health issues, my mom has been doing relatively well. As for me, I live a normal life and has not had any issues post-donation. I would certainly do it all over again. I’ve been going to the Riverside Hospital every spring for the past 12 years for follow-up and have each time been told that everything is good and normal with my own kidney function. By sharing my story, I hope more people would consider donating or signing their donor cards. I also signed mine so one day when I pass on, I can also give the gift of life to others who might need a second chance. I have since had my own family with two healthy kids post-donation, becoming pregnant with my first born 8 months after donating 🙂

Joyce – Living Kidney Donor

One day way back in February 1988, I could hardly walk home from school and after a visit to the family doctor, and some blood work, results indicated a problem with my liver. I was then referred to a gastro-enterologist and two months later, I underwent a multitude of tests such as liver biopsies. It was confirmed that I was suffering from auto-immune hepatitis and that a liver transplant was already being considered. For those of you who don’t know, auto-immune hepatitis is when your body’s own immune system is overactive, and therefore decides to attack, in this case, your liver cells. I was sent to Toronto to meet with a hepatologist and after more blood tests, he confirmed that with medication alone, I should have a normal life like everyone else. Over the years, I was told that, eventually, the liver would fail completely. It was now necessary for me to go on a liver transplant list. In July 2009,

I began numerous tests and attended countless meetings at the St.-Luc Hospital in Montreal. Then, in September, I received a call confirming that, within the O blood type group, I was placed ninth on the transplant list out of 72 patients! As advised, I started getting ready for that very important day. I packed a light travel bag and prepared a detailed list to cover every possible issue. With the help of the Canadian Liver Foundation, I was lucky enough to be able to contact some liver transplant recipients and have them share with me their personal stories and experiences. I constantly researched the internet determined to prepare myself in every way that I could. Every Friday, I would also call the St.-Luc hospital for an update on my status on the waiting list. On January 24, 2010, I received the phone call. They may have found a liver for me. About an hour later came the second call—it was a false alarm, as the liver was declared unfit. A month later, on February 20, I received the call that my new liver was ready, on ice, and that surgery in Montreal would begin around 5:00 p.m. This time, everything went as planned. The surgery was a great success and the road to recovery went as predicted. I recovered so well that I was declared their healthiest patient ever, after only 33 days of surgery. Many thanks go out to my surgeon and the transplant team, but I especially thank my anonymous donor and the donor family for their gift of organ donation. I feel great now; my energy is back. My eyes and skin are no longer yellow from the jaundice and there is no more swelling throughout my body. In June 2010, I received a gift certificate to the Running Room. I told myself, It’s time to exercise and get out. I visited my local Running Room store in Orleans and joined the walking group until December. Afterwards, I joined the learn-to-run training program in January 2011 and ran the 5K St. Patrick’s Day run in March. Having so much fun, I continued with the 5K running program and, by myself, trained for the 10K race for the Ottawa Race Weekend in May. What a race! I completed it in less than 61 minutes. After a few more training programs as group leader, I became the instructor for the learnto-run program as of October 2011 and I love getting out and helping others. On my own time, I continue to train for other 10K races. I also do cross-training every day. In July 2012, I will attend the Canadian Transplant Games in Calgary. I’m also a volunteer for the Canadian Liver Foundation with fundraising and helping out with their major events. I also started visiting some future liver transplant recipients to provide them with some guidance, comfort and confidence. For those of you who are not aware, there are over 100 different kinds of liver diseases but only one is due to alcohol abuse. The liver is a very tough organ, and it doesn’t complain. You could have no apparent symptoms and your liver could be well over 50% destroyed. Each year, over 90 people in Canada died while waiting on the liver transplant list, so please ask your self: have I ever considered donating an organ?

Robert – Liver Recipient

In December 2015, not long after Christmas, my husband Blair was diagnosed with pulmonary fibrosis (lung scarring) due to a rare condition called hypersensitivity pneumonitis. Blair is a visual artist and the theory was that prolonged exposure to his paints triggered a strong response from his immune system, creating inflammation in the spaces between the lung’s airways, air sacs and capillaries, and making it hard for his lungs to function.

We learned his condition could not be treated with medication and he did not have long to live. In May 2016 we had a telehealth conference with the medical director of the University Health Network (UHN) lung transplant program, Dr. Lianne Singer. She gave us an overview of the lung transplant process, the assessment process, what the possible outcomes could be, and other considerations, like potentially having to relocate to Toronto. After this meeting we began to feel some hope.

Unfortunately Blair’s condition deteriorated rapidly. In mid June he told me he had to go to the hospital. I wanted to drive there immediately, but he insisted on having a cup of coffee first. If I had known how long it would be before he could again enjoy a coffee in our own house, I might have brewed another pot.

After admission he developed severe oxygen deficiency and was rushed to the ICU. I thought then his chance of getting a lung transplant had passed, but in fact they were already conducting assessment tests. In July, when his oxygen requirement lowered enough to be transported, he was flown to Toronto to finish the assessment and then told he could return home – but we decided it was safer to stay in Toronto, living with his sister, in case he got too sick to be transported. The UHN respirologist assigned to Blair promised to get him in the best shape possible for transplant, and he kept that promise.

Blair was accepted on the transplant list in September, and got a call about a possible transplant in December. This was the first of nine “false calls” he received between listing and transplant. False calls were difficult, but the times in between were harder still. Our new “normal” routine was physio three times a week at Toronto General and many medical appointments. Blair had two concurrent exhibitions in Ottawa in January, which we could not attend. Finally in May came the final call. Blair had a double lung transplant, but it was a very complex surgery. He became very ill afterwards, spending several weeks in the ICU before finally moving to the transplant unit, and then to Bridgepoint hospital for six weeks of rehab. We were finally able to return home to Ottawa in October 2017.

Blair continues to face a number of health challenges – the surgery is incredibly difficult on bodies, immunosuppressive drugs cause many issues, and transplants are not cures – but we are determined to enjoy this bonus time to the fullest. We are incredibly grateful to the anonymous donor and the family for their generous gift of life, and to the amazing and skilled transplant team at UHN.

http://tinyurl.com/blairlungs

Brenda – Caregiver and Wife

My 63-year-old husband David had a hemorrhagic stroke one morning at home. I did chest compressions, paramedics restarted his heart, but by the time we got to the hospital 70% of his brain was destroyed by a brain bleed. As the doctors put it, “His condition is incompatible with life.” But he had died in my arms, so that was not a shock. Our children and his two closest friends gathered to say goodbye. When I suggested it was time to turn off the machines that were keeping his body alive, I was gently approached by the two Trillium Gift of Life nurses who asked if I would consider giving permission for his organs to be used.

David had not registered as a donor. Strangely, although he was a medical ethicist, we had never talked about organ donation. But his goal in the latter part of his life was not for material success or fame, but to be a kind person. So for me there was no question. What followed was a long and detailed interview with the two nurses during which they asked many questions about his medical past. They were very patient and kind and understanding. How hard it must be to talk to family members at the worst moments of their lives. At the end of the interview they told me that before any surgery was done, the medical staff would pause in the operating room, and any thing that we wanted to say about David would be read aloud. That was comforting.

We said the final goodbye. But we left a warm body that was still breathing with mechanical help. That was hard.

Over the next night and day, I received updates from the Gift of Life transplant coordinator as tests were carried out to determine which organs could be used, and answered yet more questions. He was finally officially declared dead over 36 hours after the stroke, and the surgeries began.

By the second morning, his lungs and liver had been transplanted into two different people. Despite the fact that he was nearly blind, his corneas were used to give sight to two others. The team also collected skin and bone to be stored for use later on. Most amazingly, the pancreas of a man with Type 2 diabetes would be used to collect islet cells for the Edmonton protocol treatment for people with Type 1 diabetes.

To be honest, none of this mattered to me at the time. It did nothing to ease the grief. Gradually though I have met many wonderful people who are alive because of transplants from deceased donors. I now volunteer with the Gift of Life organization to help spread awareness and information about organ donation.

David was gone; he no longer needed the organs and tissues. For me, the real heroes are those people who are on the waiting lists, those who have received transplant, and their families and the medical teams who help them. I still don’t know if he would have wanted me to say yes, but it doesn’t matter. His body gave the chance of life to others and that was David’s ultimate act of kindness.

Elizabeth – Deceased Donor Wife

On June 4th 2018, I walked into the Toronto General Hospital wearing my favourite pyjamas and donated 60% of my liver to a young man in the end stages of liver failure.

Two months before, I’d never heard of a living liver donation, leave alone considered giving away my own “sliver of liver.”

It was Tuesday April 3rd. I’d returned to the office after a whirlwind work trip to Australia and a jet-lagged Easter weekend. I scanned through my emails. One stood out: “A gift of life: seeking a living liver donor for my son.”

It was sent by a colleague, whose son had been sick for 10 years with a rare and devastating liver disease. She’d learned that time was running out; the only option for him was a liver transplant, and his best hope was to find a living donor.

I instantly thought: “I can do this.” And then I thought of my husband with his all-consuming job, and my three kids under eight years old, and my work family, and I thought: “We can do this.”

After my heart made the decision, my brain caught up.

I closed my office door and researched the heck out of living donation.

That evening, the supper dishes still on the table, I pulled out my stack of papers and nervously asked my husband what he thought. He listened carefully and simply said: “go for it.”

By Thursday, I’d submitted every shred of medical history to the Toronto General Hospital’s Multi-Organ Transplant Unit, lined up a first assessment visit, and admitted to my boss why my door had been closed for the better part of two days.

On my first plane ride to Toronto, I stumbled into telling my seatmate that I was being assessed as a possible living liver donor. “It’s a wonderful gift, the gift of hope that you’re giving,” she said.

I thought a lot about that gift. Was I brave enough? Strong enough? If I were injured in surgery, would I feel regret? I grounded myself in research and in the hospital’s motto: Courage lives here.

A month later, after two intense assessment trips to Toronto and many more calls with the living donor coordinator, I got the call. I was approved. My recipient was approved. We had a surgery date: June 4.

And so, on the Friday before Mother’s Day, I had the gift — the strangest, most overwhelming gift —of telling a mother that I was eligible to donate to her son.

I met my recipient only once before the surgery, in a funky coffee shop in downtown Ottawa. I wondered how I’d recognize him, but it was easy with his slight frame, pale yellowed face, wan smile. The psychologist in Toronto said it was important to meet before I was hyped up on Percocet. It was important for him to understand my “why.” I asked him what he was looking forward to once his health improved. Tea, sunshine, running, returning to his studies. Tea, sunshine, running, studies: that became my why.

Three weeks later, I was looking up at the bright lights of the OR, listening to the easy banter of the surgical staff, and repeating my surgeon’s words in my head: “we are here to do something amazing, and our plan is that you will go on to do more amazing things in your life.”

I don’t remember waking up from the eight hour surgery. There’s a picture of me holding a greeting card with a little dancing dog on it, given to me by another living donor. I’m hooked up to every conceivable hospital machine, looking pale, eyes glazed, hair mussed.

In it, she’d written: “Can you feel it yet? The pure joy of saving a life?”

It took a couple days, but I felt it.

I felt it when my recipient walked to my hospital room, and I saw him in the doorway, looking exhausted but pink, no longer a shade of yellowy-grey.

I felt it each time his mother sent me a note to say that all is well; our liver – his liver – is working beautifully.

I still feel it every time I see my scar, drawn on my
belly like a lopsided hockey stick.

My four year old is convinced that my scar is a kindness mark. She hikes up her shirt sometimes, examines her tummy and points to the tiniest speck on her skin. See, she says, my kindness mark is beginning to show.

And the fellow I shared my liver with? He’s been back at university since September. He cooked supper for my family over Christmas: spaghetti with homemade sauce. He’s shy, and brilliant, and he’s pretty good at ping pong. And this Spring, I hope he’ll be drinking tea again, turning his face to the sun, and running — on whatever path he chooses.

Meghan – Living Liver Donor

Dawson was born with a condition that caused his kidneys to be underdeveloped, we were able to avoid dialysis but at the age of 4 years old, he received a living donor kidney from myself.  Everything was great until he turned 12yrs old.  The transplanted kidney was failing and we were told that Dawson would be placed on the organ transplant waiting list and would need to begin dialysis.  Dawson was on 10hr nightly peritoneal dialysis for almost 6 years, every night.   Not an easy 6 years.  There were many highs and very many lows.  With every day that passed, Dawson’s kidney function and overall health was increasingly diminished.  Finally, on June 27, 2018 the night before his high school graduation ceremony, we received the long awaited call that a deceased donor kidney was available for Dawson.  So instead of receiving his diploma he received his life saving kidney transplant. 

Now, 9 months later Dawson is still adjusting to medications, and to his new life.  He is currently working part time, socializing and doing activities that at one time he couldn’t participate in because of the abdominal dialysis catheter, but mostly because he overall was not feeling well on a daily basis.  He now has energy, no pain and in general just enjoying life.  However, the fight is not over.  A transplant is not a cure but rather a better treatment for kidney failure than dialysis. The stress and worry are always still present, especially when Dawson attends his monthly hospital follow-ups.  There is always a bit of anxiety associated with that as he waits for bloodwork results.  And he strives to make sure he is doing everything right in order for him to keep his precious gift as long as possible.  As for future plans, he would like to attend College but he doesn’t know exactly what he wants to pursue at the moment.   In the meantime, though, he and we are enjoying and accepting every day given to us as a gift thanks to the selfless act of his donor and his donor’s family.  Thank you Donor!

Bettina – Mother, and Living Kidney Donor