Heart-transplant patient Tyler Smith has made such an amazing recover he has been released from Vancouver’s St. Paul’s Hospital and is now staying in an apartment near the institution.
“I’m living with my parents in what is called a heart home,” he said Sunday. “A group of sponsors bought up a block with heritage homes and turned them into apartments. They are very exclusive and are reserved, based on need, for different kinds of patients who are disabled. I’ll have to live there for at least three months.”
Tyler said in a wide-ranging interview that’s just fine with him.
He has made a so-far very swift recovery since Dr Anson Cheung conducted the transplant on February 26.
Tyler’s story is a riveting one.
Diagnosed with severe heart disease last year, the highly articulate 19-year-old kept his emotional and psychological equilibrium during his trip to Vancouver for surgery by maintaining “a blank mind minus the positive thoughts of what life was going to be like after my transplant.”
A positive outlook helped
“My surgery kept getting postponed,” he said. “It was supposed to start at 6 am and ended up starting close to noon. The hour before surgery was a fairly quiet one.
“I kept my mind clear and kept a positive outlook. I was so mentally ready that it wasn’t hard for me to stay positive and not be worried. When I was wheeled to the OR waiting room with my family we said our ‘goodbyes’ and ‘I love yous.’ I shed a quick couple of tears and once my family was out of eyesight it was, as I like to say, ‘back to business.’ We were in the OR and I was ready to get it all done up. I fell asleep with nothing but positive thoughts and the thoughts of all my support from home and around the world.”
Tyler characterizes himself as a very spiritual person. And it was that “spirituality and love (that)… made this easier for me.”
“I was able to come to terms with what was happening to me through spiritual thought,” he said from the apartment he si sharing with his parents near St. Paul’s. “I believed and still do believe that I’m on a set path and that I’m not in danger, I just have to follow the rules and look after myself. I didn’t pray before the surgery. I just thought of all of the people who love me and told myself I was going to see them all again very soon.”
And within five hours he did. But for his mother, Marie, those hours were trying.
“I managed the tension by pacing four or five miles — lots and lots of pacing,” she said in an e-mail to The Current. “I kept positive thoughts in my mind and part of all of us knew it was going to be okay; just before they wheeled Tyler into the OR they told us, ‘Don’t worry, we’ll take good care of him.’”
It was hard on his girlfriend, Felicia Van Leur, too.
“She just tried to keep all of the positive thoughts that she could, Tyler said. “She kept reminding herself that everything was going to be perfect and she stayed strong with the rest of my family. She dealt with the stress and tension by imagining seeing me after the surgery being happy, smiling and being healthy.”
Those positive thoughts and the promise from the medical staff helped the family greatly during the long hours of waiting.
For Tyler, the operation itself was a blank, but he vividly remembers regaining consciousness.
“Wow, my feet are boiling!”
“My first memory of waking up was only for about five seconds,” Tyler said. “I woke up and couldn’t open my eyes. All I thought to myself was ‘wow my feet are boiling.’ Then I fell asleep again.”
When he finally regained consciousness he realized his breathing tube was still in and signaled to a nurse for a pen and paper.
“I got the paper and pen, I couldn’t even see fully yet,” he said. “I wrote on the paper, ‘Is it over?’ and the nurse replied, ‘Yes.’
“She asked how I felt and I wrote, ‘My feet are warm for the first time in years.’ I ended up communicating for probably 5 or 10 minutes this way until the nurse knew I was ready to be taken off the ventilator. I actually kept the three pages of what I wrote.’”
Shortly after 7 am the next day he saw his parents for the first time since they wheeled him into the OR.
“I don’t remember talking about much, I was still very out of it from being under,” he said. “I remember talking about how much of a difference I felt — especially my feet. My feet were a really big thing to me at the time. I said, ‘It’s over’ and we all kind of agreed with a smile and an ‘I love you.’
His older brother Ryan’s visit was especially comforting.
“The next day I woke up and took my meds and my brother, Ryan, came to visit me which was awesome.” Tyler said of the young man he looks up to greatly. “Just me and my big bro. We spent a few hours together and that made me feel really good. By mid-day I had been helped stand and took three still steps and sat back down.”
Ant that’s, as Tyler would say, is where things “get interesting.”
“My recovery this far has been incredibly quick and successful,” he said. “I have been so determined to get better. Ever since I accepted needing a transplant I told myself that I was going to exceed every expectation I could.”
By mid-day on Day 2, a physiotherapist came to help him take a walk down the hall.
Determination propels Tyler towards recovery
“She told me to turn around but I told her I would keep going and so we did. I then got up from a chair on my own and made it to the bathroom. No one expected that. That same day I went to the cardiac ward which was quicker than expected but a good thing.”
It’s Tyler’s determination that has propelled him so far along the early path to recovery. He walked supervised laps around the ward every few hours.
“I wasn’t supposed to be doing that,” he said. “It’s unheard of for a transplant patient to be doing laps barely two days out of surgery. Normally a person would get up once a day if they were lucky with lots of help from a therapist. I was still very shaky and groggy from being put under but I had my mind set on getting better. I was ready for more but the nurses made me go back to bed so I listened.”
But the next day he was ready “ to step it up a notch” and walked five laps around the ward.
“The pain isn’t as bad as I imagined it was going to be but for the first few days it was very intense in my chest from my sternum being cut and split,” Tyler said. “I stopped taking narcotic painkillers four days after surgery and just take regular Tylenol now — another big feat which I’m proud of.
“The other painful times were having certain tubes removed and the external pacemaker wires that were implanted during surgery.”
This is very unusual but is indicative of the kind of person Tyler Smith truly is. Still this early portion of his recovery has its downside.
“The medications are pretty brutal,” he said. “The side effects can be very harsh. I have to take 15 different types of medications twice a day (three being anti-rejection) with extra vitamins mid-day. I have to take my medications at the same times every day – 9 am and 6 pm for vitamins and 9 pm for the regular meds again. I take my own blood pressure, weight and temperature twice a day and record it in a log to keep track of it. I had to learn how to take the medications properly and to understand what they do and how they work. Some of my meds are so bad that I have to take other meds to prevent the side effects or lessen the side effects of the first set of meds. I get the shakes and my energy levels fluctuate a lot but every week the dosages and medication types will hopefully change depending on my recovery.”
Regular heart biopsies are the rule from now on
And for months to come there will lots and lots of tests.
“The tests that I have to go through now are ones that I have been through before, so I’m quite prepared,” Tyler said. “I will have to get regular heart biopsies. A catheter is inserted into a vein in my neck and clippings of my heart are taken out to test for rejection. These biopsies will be done once a week for the first month, then twice a month for the second month and then once a month for the next six months to a year. It all depends on if I have rejection at all or not but that is the schedule assuming that I stay clear of rejection. I will also have to have regular blood work done to monitor the level of anti-rejection drugs in my blood and to monitor my kidneys and liver. Obviously the meds are harsh on both kidneys and liver.”
But right now his most immediate concerns are tissue rejection and infection.
“ Because of the anti-rejection drugs I am much, much more prone to getting an infection and rejection could come at anytime but within the first three months it is most likely as you can assume by my biopsy schedule,” Tyler said.
“I am learning to always watch out for sick people and to be very careful with the food I eat and to make sure I stay clean and to keep my hands as clean as possible. My next step is to let my sternum heal, which will take anywhere from six to eight weeks to fuse back together. After that my goal is to have my dosages of meds weened back, but that will happen over time and that’s all up to the doctors, of course. The major part of my recovery should take around three months.”
Meanwhile, he has nothing but praise for the medical staff that have cared for him.
“The doctors and nurses are absolutely incredible — every one of them,” he said. “They are all very compassionate and understanding and will do anything they can to help you understand what is going on and to help you feel as well as you can. They are all excellent people professionally and personally.”
“I couldn’t ask for a better place to call home”
Tyler’s story has attracted an enormous amount of attention here in Revelstoke and he wants everyone to know that his recovery is made all the easier “with all of the love and support I receive from everyone.”
“I couldn’t ask for a better place to call home,” he said. “Revelstoke has showed just what we as a community are made of and I am more proud than words can say for being a part of that community.
“I also know that a lot of people keep me in their thoughts and prayers and I would ask that thoughts and prayers be kept with the loved ones of the person (whose heart)… saved me. The transplant society won’t tell recipients anything about the organ they receive but I am so grateful and forever in debt to the brave soul that saved my life.”
On a final note, Tyler wants people to know that they can keep track of his progress through a Facebook group he created called Tyler’s Heart Hub Page. Anyone can post comments there and see what he has to say as well as view pictures of his progress. And, of course, there’s his blog at tylerjohnsmith@wordpress.com.
