Tyler Smith has had his heart in his hands.
He held the diseased organ, he looked at its deformities and he realized it had just days before been beating — badly — inside him.
He was speechless.
And, he was overwhelmed at how, in the space of a few months, he went from an 18-year-old who couldn’t keep up with grandmother on a walk to a 19-year-old heart-transplant recipient.
He’s glad he’s alive to tell his story.
And, what a story it is. It’s one that will break any parent’s heart, make people angry at how fallible the health-care system is and, in the end, cheer for the teenager and for the medical professionals who wouldn’t stop until they knew what was killing him.
Tyler, who lives in Revelstoke, said much of his teenaged years was spent “in and out of clinics,” with plenty of trips to the local ER when he couldn’t breathe.
Doctor after doctor examined him; none could come up with anything more than the asthma with which he was diagnosed five years ago.
“I took the medicine they told me to take but it never got better. I kept having the quote-unquote asthma attacks.”
At a family wedding last July — the same one his grandmother “cruised away from me, leaving me at the back of the pack” — he showed his aunt Michelle Reith, a Kamloops nurse, his swollen ankles. She noticed his legs also had little hair, both indicators of heart disease.
Three more doctors later, the best he got was one promising to send him to a cardiologist “to ease my mind” but not to expect the appointment for months.
Within days, there was another trip to the ER with chest pains and difficulty breathing — and, Tyler said, “I was faking a heart attack to get someone to see me.”
This ER visit resulted in more tests and an ultrasound “to ease my mind” — and, after it all, two doctors are standing over him, talking about irregularities in his heart.
One went so far as to say that, had he not met Tyler but had simply looked at the ultrasound, “he would have thought I was 70 or 80 years old.
“That was on a Friday. On the Saturday, I was told to go to Kelowna right away, that there was a cardiologist at the hospital waiting to see me.”
Tyler was admitted, tested some more and diagnosed with hypertrophic cardiomyopathy, a thickening of his heart walls. The Kelowna doctors flew him out that night to St. Paul’s Hospital in Vancouver for a heart biopsy.
And here’s where some luck steps into the teenager’s story.
Before he could go for the biopsy, a porter came and told him he was to have an echocardiogram, a non-invasive test. To this day, Tyler said, no one knows who ordered the test, but it showed a blood clot inside his heart — a clot that likely would have been pierced in a biopsy, causing a stroke or seeing it move to another part of his body.
Tyler was scheduled to be sent home with blood thinners to remove the clot — but, before he could be discharged, another doctor came in and told him he had a choice.
“He said to me, ‘Do you want the real truth or do you want me to make it easy for you’?”
Tyler opted for gritty honesty — and learned he needed a heart transplant.
At the time, he was 18, although the surgeon told him he had no idea what it meant to be that age.
“He said I’d been sick for so many years, I had no idea what it felt like to be 18.”
Tyler was sent home with a pacemaker and a pager and told to take his meds and wait. They’d call him when they had a donor.
There were more complications but none that couldn’t be handled. As March approached, however, he said he started to get nervous and worry the specialists had forgotten him.
Although most days were bad, where he did little more than sleep, some were good. Feb. 25 was one of them. He felt good enough to get up, visit some friends and go out for a burger and a beer with one of them. It was the first complete meal he had eaten in months — and, ironically, the last one he would have for some days.
“We were sitting around and my friend was asking me a lot of questions, how I felt, what it was like to be waiting, when the phone rang and it was a 604 number. I knew what it was right away. I answered and she said ‘Tyler, is that you?’ I said yes and she said ‘ We have a heart here for you’.”
Told to not hang up the phone and to listen to the instructions carefully, Tyler went home — his friend picked up the tab — to a pre-packed suitcase and anxious parents and girlfriend.
They couldn’t get a flight to Vancouver out of Revelstoke, so ended up driving to Kamloops to get a plane.
All the while, Tyler worried because he had been told a donor heart has a short shelf life.
After some delays at St. Paul’s, some conversation with the surgical team and an admonition to the anesthesiologist — “Let’s do it up, let’s get it done” — he was out, the new heart was in and he was waking up with tubes, a ventilator, Vaseline in his eyes to stop them from drying out and that post-surgery haze where all you want is to go home.
The ventilator was removed later that day and he stood, taking three supported steps.
Within a couple of days, he was in a less-intensive ward and walking laps around it.
By the fourth day, he was going to the bathroom and ready to go home.
On the fifth day, he was discharged and moved into a government-owned apartment across from the hospital so he can continue with outpatient care.
He’s had one small scare — a bit of organ rejection that was gone by the following week — but said he’s feeling like he’s never felt before.
Tyler has joined the Gift of Life cardiac team entered in the annual Sun Run marathon in Vancouver on April 17 — his first marathon attempt ever.
He’s asked about the donor but confidentiality laws keep most of the information private. His doctor was able to tell him, though, that the heart is “an ideal match, no, it was a perfect match.
“And a nurse told me later he never uses the words perfect match.”
TEEN TO TALK AT MALL
Tyler Smith will be at Sahali Centre Mall on April 12 at 10 a.m. as part of a week-long organ donor promotion.
While the actual designated week is April 17 to April 24, the mall is opening its doors to local organ-donor advocates to provide information and have a computer available for people to check if they have registered and do so if they wish.
The promotion will be at the mall during its regular operating hours, Mondays to Thursdays and Saturdays, 9:30 a.m. to 5:30 p.m., Fridays from 9:30 a.m. to 9 p.m. and Sundays from noon to 5 p.m.
Because Tyler is recuperating from his recent transplant, he is only able to spend a few hours there on Tuesday talking to people about how a donor organ saved his life.
For anyone interested in reading more about his story, Tyler has kept an online blog that can be viewed at tylerjohnsmith.wordpress.com.