This week these country folks are having an adventure learning about life in the city. It’s not quite like a vacation as we have a series of appointments at Sick Kids hospital, however we are trying to make the best of it and enjoy each day and each new experience as it comes. As most of you know our daughter Amanda has RCM, a rare heart condition, with no treatment options aside from a heart transplant. This week she has a series of assessments, tests and meetings, with the heart transplant team, twenty-one appointments to be exact, as part of the process of confirming her eligibility and need of a transplant. The next few posts will be a journal about our week in Toronto.
The Urban Immersion Begins
Amanda, Patricia and I left home shortly after 4pm Sunday afternoon, with the rest of the family staying at our house with Charles and Missy Burkholder. Thanks Missy, I suspect you will have an adventure this week as well! We had a relaxing ride to the city. It was my first time to drive into downtown Toronto but it wasn’t busy and it was an easy ride to our destination. This is where it started to get interesting, my sister reserved a Air B&B condo for us and provided a long list of instructions on how to get the key, get in the parking garage and find the unit. We found the key as described in a little lock box hidden on the side the building. This step was easy and I thought it was almost like geocaching. After several failed attempts to get the parking garage door to open, a car drove up behind us and the door opened. I’m not sure if it was us or the other car that activated the door but it opened, we descended underground and the big iron overhead door closed behind us. Noticing we need a parking pass, we asked a resident who just drove in where to obtain one. She immediately informed us it’s illegal to rent units with Airbnb in this building. I was really starting to get worried but the lady was friendly and offered to take me to the security office where parking passes are obtained. I saw a sign at the desk saying, “short term rentals not allowed”. I felt pretty cheap walking up to the desk asking for a visitor pass and in the process needing to admit I was renting with Airbnb. I thought “maybe this is why the price was so good.” I had visions of the rental fee being lost and us being put back out on the street. The security guy was very kind as well and told me it’s not my fault, they won’t kick us out and he’ll give us a parking pass anyway. I thanked him and went back to the garage, we all got our luggage and continued to follow the complicated instructions to find the unit. Praise the Lord! We found the unit and the key opened the lock.
It was a very small modern condo with two beds but the one was just behind a curtain. The unit was reasonably clean, however I soon discovered the bathroom latch doesn’t work properly. I tried hard to fix it with a kitchen knife as my only tool but I had to give up and tape the latch so no one gets trapped in the bathroom. I Had to use a soap jug to keep the door closed. With this “fixed” I settled down to try to figure out the best way to make the 4.6 km commute to the hospital. I downloaded an Uber app in case we’re in a pinch and studied the TTC website. This is quite a learning curve for back woods folks like us, but I figured it out.
Navigating Public Transit
On Monday morning bright and early we found our way from the condo to the street corner. The first bus that came had the label “501 Queen” which was the one we wanted, we got in, deposited the exact change and were given a 2 hour Transit pass. We rode the bus to a subway station, decended underground and experienced a subway for the first time as well. We came back onto the street a few blocks from the hospital almost like we do this everyday. Amanda’s condition gets worse when she’s anxious, so we had to stop a few times to let her relax but we still had time to stop at a Tim’s for breakfast and walk in nicely 15 minutes before our appointment. We might be from the backwoods but we know how to research things on the web, including learning how to navigate the TTC transit system.
Meeting with Transplant Team
On Monday we had 6 appointments with transplant doctors and nurses with an emphasis on educating us about the process, it’s side effects and how the side effects are treated. We have done considerable research on the subject but we still had lots of questions and what we are learning is somewhat reassuring although the wait, transplant sugery and life after are not going to be easy. Another aspect of the assessment is for the team to learn more about our family because an important requirement for transplant eligibility is strong social support. They are finding out just how much community there is in rural Ontario with all the folks that donated to the GoFundMe account and all the help we have from the church community with babysitting an such like. Many of you actually play a role in it even being possible for Amanda to get on the “list”.
They said they are down to doing about twelve transplants annually at Sick Kids from over twenty, some years ago. One reason according to the cardiologist is that “we are in an era of donor shortage”. One of the responsibilities of the transplant team is stewardship of the limited supply of organs. Apparently lack of social support is a substantial reason for poor outcomes in some transplant recipients. Believe it or not the doctor told us that transplants in teens have a lower success rate because of how often young adults get “mad at the world” as he said it, and don’t take their meds regularily.
I plan to post another update about more of our adventures in the city, and possibly more of what we learn in the hospital, shorty so stay tuned….