I’m Aware That I’m Rare: Derek Henderson (361)
The phaware® interview
Derek Henderson is a #CTEPH patient from Toronto, Canada.
In this episode Derek discusses is road to diagnosis with a rare form of pulmonary hypertension, the mental challenge of PTE surgery and the misconceptions of Canada’s socialized medicine program.
My name is Derek Henderson. I live in Toronto, Ontario, Canada. I’m a CTEPH patient (Chronic Thromboembolic Pulmonary Hypertension). I’ve had CTEPH since 2013. I’m an avid biker. I bike a lot when the weather’s better. What ended up happening was that I just was losing my breath. My bike routes times were going down. Eventually, I was diagnosed with pneumonia, twice. A couple years passed after I was diagnosed with pneumonia. Then it started happening again. I went back and they did some more tests. They found it wasn’t pneumonia this time, and it just kept getting worse and worse and worse. Eventually, it got to the point where I couldn’t walk the length of my house, which is about 100 feet. So, that’s when I went to the hospital and I was diagnosed with blood clots, and then eventually I became diagnosed with CTEPH.
Initially, I was just in the hospital with blood thinners, and then I got out, and then they gradually cleared up the initial problem. Then, in Toronto, I was referred to Toronto General, to the Pulmonary Hypertension Clinic, and eventually they just ran some tests. At the time, the policy in Toronto had changed from the PTE surgery (Pulmonary Thromboendarterectomy) from going to be curative or done when there was an emergent problem, to being more preventative. So, I was one of the first patients that the policy effected. So I was done before it was needed to be done. In other words, they did it to prevent future problems. So, I was lucky in that regard.
What ended up happening with me is that it went for about seven months, between the time I was diagnosed to the time I had PTE surgery. So, it was fairly fast. For me, part of the thing was that, when you’re going through PTE surgery, you have to do a bunch of tests to make sure that you’re doing okay for it, that you can live through it in effect. There’d been a bit of a gap between my initial review at the clinic and then the actual intake towards the surgery.
I got a call that I was scheduled for a bunch of tests, which was routine, normal stuff. Then I got an email saying that, “We’d like to come to talk to you about the date of your scheduled surgery.” The email was on a Monday. I had a right heart catheter test to measure the pressures in my right heart on the Tuesday. So I got the email on a Monday. On a Tuesday, my wife and I went in to talk to the surgeon about the surgery.
And at the time we didn’t even know we were for sure, scheduled for PTE surgery at all. I found out on Tuesday that I was going in the following Monday for surgery. It ended up that I really did not have a lot of time to get ready for it, nor did my wife or my family members have any warning for it. It was a bit of a surprise, but in some ways that might have been a bit better for me, because I didn’t have time to think about it.
I didn’t really realize how serious the problem was until afterwards. So in other words, we had the surgery and for those of you who don’t know, it’s open heart surgery. You’re put into hypothermia, they turn off the heart lung machine, they dissect some of the lungs. So it’s pretty dramatic surgery. I didn’t have really have time to look into it that much before we had it. I didn’t really realize how sick and how serious the problem was until afterwards. I think that might’ve been a bit of a blessing in disguise because I wasn’t quite as freaked out as I would have been. What I found later on was that I had surgery in August and then in December, the clots came back, because my blood thinner medication wasn’t working that well.
Then I had time to think and sink in a bit about what had happened, what the problem was, how bad the surgery was, how serious the problem was. It was sort of a delayed reaction to me just because I was so focused on recovering from the surgery and dealing with all the side effects of like I had lost some jobs, my employment had to come back, all that sort of stuff. Then I finally had some time to realize, “Well, I was really, really sick.”
It’s quite a bit of a change, especially for someone like me who’s really never been that sick. There was a lot of appointments. You have to understand too, that I wasn’t that sick. I didn’t feel sick before I went into surgery. I live about five miles from the hospital. I could have easily biked or walked to the hospital before surgery. So to come back out from that surgery and really not be able to walk around my own house, and I got better fairly quick, but still to come back out from that aspect of it, was a bit of a shock, took a bit of getting used to, just to. I had to measure my trips up and down stairs.
Also people would tell me that, “Oh, you don’t really look sick.” Well, I was trying to cross some streets and people were on their cars at me saying I wasn’t walking fast enough. I was just being lazy. To go from being able to bike 15 miles to being able to barely walk around your house was quite a bit of a shock for the surgery.
What I would tell people is just to first of all, to reach out to someone that’s had it before. Your program and others that are around now are a lot better to give some people some advice as to what you can expect from the surgery. A lot of people don’t tell you to hug your pillow after your surgery, which is a great thing for heart patients. To try to stay active. Just try to start walking as much as you can, and to get involved with your physician and just to learn about what’s going to happen, what the plan is. Actually even like when you’re recovering from this surgery to have a plan of something to do, to keep yourself occupied, that’s the big thing. Also to let your friends know what’s going on, what it’s like to have the surgery and get them to, if you need help, or if your caregiver needs help to let them know what’s going on.
With pulmonary hypertension, there’s no fear involved when you hear the diagnosis. With cancer there is. So if you hear somebody who has cancer, oh, there’s a fear involved. With pulmonary hypertension there isn’t. It can be just as bad. It can be just as traumatic. It can be just as deadly. So you have to do some education to your family and friends as to what’s going on with it.
For me, it took a few years to completely recover after the surgery. I think part of it is I was a little reluctant to push myself physically. Certainly now you probably couldn’t tell that I ever had that surgery. I’ve become a lifelong patient of blood thinners. That’s one thing for me.
My life is pretty well back to normal, but I don’t take things for granted. Obviously we’re recording this COVID world. So not able to do as much traveling as I normally would, but I travel a fair bit during non COVID times. But I also don’t think things for granted anymore either. I pay attention to it, if I’m sick of it, I get it seen quicker than I used to, which is probably one of the bigger things that has changed for me. Otherwise I’ve been lucky. I’ve been able to recover back to my normal lifestyle that I had before.
The biggest thing though, that I would say is that there’s a misconception for people that Canadian healthcare, everything’s paid for. I spend now $1,300 a month on drugs. My employer pays a fair bit of it because I have a good drug plan, but that’s a lifelong payment for me, unless my drug therapies change. That’s $1300 a month. That’s a fair bit of money that you have to spend that someone else doesn’t. So that’s something that I never would’ve thought of before having this problem.
I’m Derek Henderson and I’m aware that I’m rare.