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Losing heart, finding hope

Grateful Surrey man urges others to offer the gift of life through BC Transplant
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Heart transplant recipient Sunny Tutt

Just before midnight on July 17, 2014, Surrey’s Sunny Tutt was laying in bed, unable to sleep, when suddenly his pager began ringing on his bedside table.

The date, time and telephone number are now burned into his memory. It was a call he had spent 11 years waiting for, a call that meant he would either live or die.

Being active and fit has always been a way of life for Tutt.

As an athletic teen, Tutt also set his future goals in motion – dreaming of having his own business one day and developing properties across the Lower Mainland.

In 2003, during his first semester enrolled in the Beedie School of Business at SFU, Tutt began to notice changes in his health.

What started as a troublesome cough eventually progressed to what was thought to be pneumonia. Within a week, he started having difficulty breathing, unusual weight gain and swelling around his ankles. Laying down flat on his back, it became extremely difficult to breathe.

“It felt like it was very abrupt, going from working out and doing heavy weights at the gym, to not being able to walk up a flight of stairs,” said Tutt. “Being a young, healthy, fit 18-year-old kid, the doctors didn’t feel I had any serious issues.”

So despite several visits to Surrey Memorial Hospital, he was given antibiotics for his nagging lung and chest congestion and sent home.

As his condition continued to deteriorate, he felt like he was drowning in his own fluids and urged his doctor to do more tests.

Finally, after a series of chest X-rays, the doctors noticed Tutt’s heart was twice the normal size and was functioning below 20 per cent.

He was immediately admitted to the Heart Transplant Clinic at St. Paul’s Hospital in Vancouver, where he learned he had dilated cardiomyopathy – a condition that caused his enlarged heart to completely lose the ability to efficiently pump blood through his body.

His heart was failing.

At first there was no talk of a transplant. Instead he was prescribed a series of up to 10 different drugs a day to help stabilize his heart and his body fluids.

But he was told that long-term, the prognosis was not good.

Over the next few years, Tutt would jump on and off the transplant list as his health would improve and then decline.

By September of 2013, his heart had completely failed.

As a last resort, doctors installed a Left Ventricle Assist Device (LVAD) into his heart to help bridge the gap between failure and a potential transplant. The clock was now ticking and an organ donation was his only hope at survival.

With the LVAD in his chest and a pager hooked to his belt, Tutt was sent home to wait for a phone call from BC Transplant.

Staying healthy is key to organ transplant process, as the patient must be healthy enough to support the highest possible success rate.

While waiting, Tutt developed shingles and had to be removed from the list for about a month.

Then, he got the call just before midnight, July 17, 2014 – the call that changed his life.

It was the Heart Transplant Clinic, doctors had found a match.

The initial euphoria of the call was tempered by the thought that his tremendous fortune meant unimaginable loss for someone else.

The next 12 hours were a blur, but on July 18, Tutt had a new heart beating in his chest.

“When I woke up, my skin colour was back. I couldn’t stop laughing and talking. I was so eager to get home… I was feeling great. It was a feeling I had forgotten because it had been over a decade,” he said.

Although – like all organ transplant recipients – he has no idea who gave him the ultimate gift of life, he was able to write a letter to the family of the donor.

“We are given the opportunity to write a thank-you letter and that’s a very difficult letter to write,” Tutt said. “It’s been a little over two years since my transplant. At first I was eager to send it, but I’m sure the family is still mourning the loss of their loved one.”

The task has taken on even more meaning, as Tutt volunteers at BC Transplant.

“I’ve met donor families and it’s so hard to convey my feelings into words. I just want it to be the perfect letter. I’m just so grateful. I’m getting married this summer and I’ll definitely send it before that.”

Tutt must take anti-rejection medication for life, a dosage that has decreased from 15 pills to four or five daily.

Since his transplant, Tutt has gone back to school, working towards a degree in Urban Land Development. He also built and sold his first home last year.

In 2016, Tutt launched the Jivana Organ Donation Society with three fellow transplant recipients to help spread the word about organ donation.  The society works closely with BC Transplant.

For Tutt, now 32, his focus is to make more people aware of what an incredible gift organ donation is and to get others to register as donors.

“Education is so important,” he said.

 

Knowledge key to spreading life-saving message: Doctor

Education is the key to saving a life.

That’s the message B.C. Transplant would like get across when it comes to registering your name on the organ donor list.

In 2016, 423 people received a life-saving transplant in B.C., the most transplants ever performed in one year in the province.

There were 97 deceased donors in B.C. last year, up from 95 in 2015.

The organ donation rate is now at 20.32 per million population, up from 18.2 per million in 2015.

At first glance, the numbers seem positive. But looking at the statistics from an international perspective, Canada is still not where it should be, said Dr. Sean Keenan, provincial medical director of donation services for B.C. Transplant (below left).

Dr. Sean Keenan

The U.S. is ahead of Canada and the international leader is acknowledged as Spain, with a donation rate in the range of 35-40 per million population.

And despite donor numbers increasing in B.C., the province still has 600 people on the waiting list, said Keenan.

That said, “2016 numbers are up slightly from 2015 and the encouraging thing is if you look at the years prior to 2015, the numbers are quite a bit lower.”

What’s having the most impact is education – which is largely focused at the hospital level, he said.

“We have hospital coordinators who get out and talk to physicians, nurses, emergency room staff and critical areas, and in many hospitals we have what we call donation physicians who are usually doctors who work in the Intensive Care Unit that take on the role of locally promoting (organ transplants).”

According to Keenan, there is still a tremendous need for people in B.C. to register as organ donors and then to make their families aware of their wishes.

Some countries around the world have implemented a “presumed consent” policy, where everyone is considered to be a donor unless they opt out of the program, but this is something that Keenan doesn’t see happening in Canada anytime soon.

“Many countries that have implemented a presumed consent policy haven’t seen a major impact in donation. It was only after educating the public that they saw a change and an increase in donation numbers,” he said.

Keenan believes it’s much more effective for people to be organ donors because they have expressed an interest and taken the steps to register rather that having them feel forced into making a decision.

It’s estimated that less than one per cent of people will be in a position to be an organ donor.

To be a donor you have to have suffered a severe injury to your brain and are most often on life support.

And it’s not just young people who can give the gift of a life-saving organ donation.

“You need to be well enough in other ways to have organs that others would benefit from,” Keenan said.

“Age of the donor is a factor, but people can be donors up into their 70s, so it’s not all just young people. We look at all potential donors and decide from there.”

To register as an organ donor in B.C., and to learn more, go to http://www.transplant.bc.ca/