Latest / Amplify: A Podcast Powered by Patient Voice Partners / When One Diagnosis Becomes Many: Navigating Heart Disease, Cancer, and Kidney Disease

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When One Diagnosis Becomes Many: Navigating Heart Disease, Cancer, and Kidney Disease · Amplify: A Podcast Powered by Patient Voice Partners

• 0:01
  SPEAKER_05: Welcome to Amplify, Elevating Patient Voices, a podcast powered by patient voice partners, where real stories spark bold conversations.
• 0:11
  SPEAKER_05: I'm Ursula Mann.
• 0:12
  SPEAKER_01: And I'm Brent Cordy.
• 0:14
  SPEAKER_01: Together, we're talking with patients, caregivers, and the healthcare change makers who are listening and taking action.
• 0:21
  SPEAKER_05: From personal journeys to policy shifts, these are the voices shaping a healthcare system that listen.
• 0:33
  SPEAKER_03: I'm here today with my colleague Christine P.
• 0:36
  SPEAKER_03: Sapia, and we're going to be chatting with a friend of ours, Alan Snofsky, who's had to navigate multiple serious diseases simultaneously, and we're going to dive into that today.
• 0:45
  SPEAKER_03: There's things on the heart, thyroid cancer, kidney inflammation, and even steroid treatment complications.
• 0:52
  SPEAKER_03: Alongside this, for quite some time, Alan, for over 20 years, has been a principal and health benefit strategist at Smovsky Strategic Planning.
• 1:02
  SPEAKER_03: So while navigating all these health themes, he's been working.
• 1:05
  SPEAKER_03: And I want to hear about how that's been going and how his personal experience has impacted his work journey and what his thoughts are on the future.
• 1:12
  SPEAKER_03: Christine, as you were thinking about all these diagnoses, and that's a lot to navigate personally, what sorts of things were coming to mind for you?
• 1:19
  SPEAKER_03: It must be a huge juggling act.
• 1:21
  SPEAKER_06: How do you continue to live your life with everything that it has to offer when you have to juggle all these medical appointments, all these concerns, all these worries, and so on?
• 1:32
  SPEAKER_06: And because life is not about a series of medical appointments.
• 1:36
  SPEAKER_06: It's about enjoying time with your significant other, with your children if you have some, grandchildren, et cetera.
• 1:42
  SPEAKER_06: It'll be interesting to find out how Alan managed to navigate all that.
• 1:46
  SPEAKER_03: I really appreciate that.
• 1:48
  SPEAKER_03: Alan has definitely become a patient impact speaker.
• 1:51
  SPEAKER_03: And he even sits on the Health Partners Board of Directors as well, a wonderful not-for-profit that helps support a number of patient organizations through workplace campaigns.
• 2:01
  SPEAKER_03: So there's a lot to unpack here and a lot ongoing.
• 2:03
  SPEAKER_03: And this happened to Alan Young and over many years, which certainly changes, as you said, Christine, work and life too, as families are happening on the side and there's the bills pay.
• 2:14
  SPEAKER_03: So there's some considerations around that too.
• 2:17
  SPEAKER_03: Christine, thanks for sharing.
• 2:18
  SPEAKER_03: And you want to say welcome to the show today.
• 2:20
  SPEAKER_03: Welcome, Alan.
• 2:22
  SPEAKER_03: So, Alan, take us back to you're in your 30s.
• 2:25
  SPEAKER_03: What started happening on the health front?
• 2:27
  SPEAKER_03: What were some symptoms you were coming across?
• 2:30
  SPEAKER_03: And what did you encounter?
• 2:32
  SPEAKER_00: Being in my 30s and having what I had was a bit of a shock and some element of denial.
• 2:38
  SPEAKER_00: So I was still in Montreal at that point.
• 2:40
  SPEAKER_00: I was in Toronto on business and got invited.
• 2:42
  SPEAKER_00: I had just left Mercer probably six months earlier, was invited to play softball.
• 2:47
  SPEAKER_00: And I hit a single standing on first base, and the person behind me hit a ball in the gap and I ran full tilt around, slid into home.
• 2:54
  SPEAKER_00: I was safe.
• 2:55
  SPEAKER_00: But when I got up, I had a bit of tingling in my arms and a bit of shortness of breath.
• 3:00
  SPEAKER_00: Now I smoked back then.
• 3:01
  SPEAKER_00: And so I put it down to that.
• 3:03
  SPEAKER_00: But when I got back to Montreal, decided to see my family doctor.
• 3:07
  SPEAKER_00: Long story short, he gave me an EKG, everything was fine.
• 3:10
  SPEAKER_00: But he said, you know, you're at that age and you've got your family history.
• 3:13
  SPEAKER_00: Why don't I send you to a cardiologist?
• 3:16
  SPEAKER_06: Sorry, Alan.
• 3:17
  SPEAKER_06: What was your family history?
• 3:19
  SPEAKER_00: Oh, both my parents' sides, there's a fairly significant amount of cardiovascular disease.
• 3:25
  SPEAKER_03: Was that also at a really young age?
• 3:28
  SPEAKER_00: Not quite that young, although I did have a couple of uncles whose journey with cardiac disease probably started in their 50s, so a fair bit older than I was.
• 3:37
  SPEAKER_00: But nonetheless, the history was there.
• 3:40
  SPEAKER_00: And the cardiologist detected.
• 3:42
  SPEAKER_03: Alan, you mentioned the word denial that you wanted to ignore the symptoms a little bit.
• 3:47
  SPEAKER_03: And I can understand that at your age, you wanted to just slough it off to you're not feeling well or everything's still okay.
• 3:53
  SPEAKER_00: I wasn't feeling terrible.
• 3:54
  SPEAKER_00: I think I had that sort of weird tingling.
• 3:57
  SPEAKER_00: I had what turned out to be unstable angina, so you can have it at rest as well.
• 4:03
  SPEAKER_00: But I didn't know that at that point.
• 4:04
  SPEAKER_00: When the cardiologist detected, and I did back then, he actually did uh stress test in his office.
• 4:10
  SPEAKER_00: And the 12-minute stress test, I was fine.
• 4:13
  SPEAKER_00: I completed it well, I was active.
• 4:14
  SPEAKER_00: But he said, I don't like what I see, I'm sending you to hospital.
• 4:17
  SPEAKER_00: And that night I was going back to Toronto for work, and I said, Can this wait for three or four days?
• 4:22
  SPEAKER_00: And that's part of the denial that I had.
• 4:25
  SPEAKER_00: He said, You don't understand.
• 4:26
  SPEAKER_00: If I can get you in today, you're going in.
• 4:28
  SPEAKER_00: I don't like what I see.
• 4:29
  SPEAKER_00: And I was still in denial when I went into hospital.
• 4:32
  SPEAKER_00: I said, I don't feel terrible.
• 4:34
  SPEAKER_00: And so there was part of my brain that probably registered, okay, there's something going on, but most of it was still really living in denial.
• 4:42
  SPEAKER_00: This can't really be anything that serious, otherwise, I'd feel worse than I do.
• 4:47
  SPEAKER_00: And angioplasty that failed, which led to a bypass, that in itself is a long story.
• 4:53
  SPEAKER_00: So I quickly moved from denial to understanding that I had heart disease.
• 4:59
  SPEAKER_00: But even once I recovered, I was still in some element of denial.
• 5:04
  SPEAKER_00: I figured, okay, it happened.
• 5:06
  SPEAKER_00: I had the bypass, I'm good to go.
• 5:09
  SPEAKER_00: And I was good to go cardiac-wise for quite a number of years.
• 5:13
  SPEAKER_00: So the denial was initial and then it was subsequent in the sense I feel good, so I don't really need to do anything that differently.
• 5:22
  SPEAKER_00: That being said, I certainly adjusted diet.
• 5:24
  SPEAKER_00: And so from that age, I have been more diligent about exercising.
• 5:30
  SPEAKER_00: I did quit smoking, and so I did make some lifestyle changes.
• 5:33
  SPEAKER_00: So I think to that extent, I was able to overcome the denial.
• 5:37
  SPEAKER_00: But I've never let it affect what I did.
• 5:40
  SPEAKER_00: I did two marathons in my 40s.
• 5:44
  SPEAKER_00: I might have been 50.
• 5:45
  SPEAKER_00: And I had friends and parents saying, What are you doing?
• 5:48
  SPEAKER_00: You have cardiac disease.
• 5:50
  SPEAKER_00: That's sort of old school thinking by what talked to my cardiologist back then about it.
• 5:55
  SPEAKER_00: Cardiologist said, You feel good, go for it.
• 5:58
  SPEAKER_00: And if you feel faint or something, then you'll stop.
• 6:02
  SPEAKER_00: Okay.
• 6:03
  SPEAKER_00: So I think the denial is on different levels.
• 6:06
  SPEAKER_00: And I guess one of the things that I've learned, fortunately for me, I'm by nature a fairly positive and resilient person.
• 6:13
  SPEAKER_00: So when things happen, I'm generally able to put it in perspective.
• 6:17
  SPEAKER_00: And that's how I've chosen to live my life, both personally and professionally, ever since.
• 6:22
  SPEAKER_00: I don't let what's happened to me health-wise get in the way.
• 6:26
  SPEAKER_00: I don't wait for what's around the corner or the other shoe to drop, because I've realized that it's not healthy to do that.
• 6:34
  SPEAKER_06: And not only that, but it could be harmful, right?
• 6:36
  SPEAKER_06: Stress, it's funny how people focus on smoking, drinking, and so on as them being silent killers, but stress is another one, right?
• 6:44
  SPEAKER_00: And I know this from my work, of course.
• 6:46
  SPEAKER_00: In fact, even in my 30s, I was working as a health and benefits consultant.
• 6:51
  SPEAKER_00: So I knew intellectually that I shouldn't have smoked, but no one ever connected the dots for me.
• 6:57
  SPEAKER_00: And this is one of the essential things that I and others like me have been trying to change in terms of, and that's a bit of the intersection between my personal journey and professional work, is no one connected the dots for me at age 36 to say family history, smoking probably a pack a day of cigarettes, lack of consistent exercise.
• 7:19
  SPEAKER_00: I played a lot of sports, but I didn't do regular sort of daily aerobic exercise necessarily.
• 7:25
  SPEAKER_00: And my diet was not the best.
• 7:27
  SPEAKER_00: But no one put those things together for me in some sort of assessment saying if you did, had I known that, I would have made lifestyle changes far sooner.
• 7:36
  SPEAKER_06: So, Ellen, you're telling us that you probably had a follow-up after the cardiologist intervention with your GP.
• 7:43
  SPEAKER_06: And at that point, there wasn't a conversation about, okay, clearly you suffer from cardiovascular disease.
• 7:49
  SPEAKER_06: And now usually your GP is the one that has the more holistic picture of your health and so on.
• 7:57
  SPEAKER_06: And nobody had that conversation.
• 7:59
  SPEAKER_06: Now, we have to remember that this was probably a couple of decades ago.
• 8:03
  SPEAKER_06: So maybe things have changed, at least I hope so, but that conversation never happened.
• 8:08
  SPEAKER_00: I would say it didn't happen.
• 8:10
  SPEAKER_00: I would also say that have things changed?
• 8:13
  SPEAKER_00: Yeah, but I think it's very dependent on the individual doctor.
• 8:18
  SPEAKER_00: And some doctors are more that way.
• 8:21
  SPEAKER_00: There still is a lack of connecting the patient to resources.
• 8:25
  SPEAKER_00: When I had an angioplasty, I think it was 2011, my cardiologist, almost in an offhand way, said, Oh, there's this provincial program.
• 8:34
  SPEAKER_00: And if you're interested, you could go.
• 8:36
  SPEAKER_00: It was at the Y at the time, a two-day a week.
• 8:39
  SPEAKER_00: And it was a great program.
• 8:40
  SPEAKER_00: It was exercise-based, but they had nutritional counseling, they had mental health support, which I didn't think I needed, but it was there.
• 8:49
  SPEAKER_00: It was almost in an offhand way.
• 8:50
  SPEAKER_00: Well, it's sort of you can do that.
• 8:52
  SPEAKER_00: I would have wanted my doctor to actually prescribe it for me.
• 8:56
  SPEAKER_00: So I think this is part of the gaps in the system that were there then and are still there even today, is connecting people to resources.
• 9:05
  SPEAKER_03: So, Alan, how hard was it to quit smoking?
• 9:08
  SPEAKER_03: What did you do and how did you make that happen?
• 9:10
  SPEAKER_00: I had a few days in hospital prior to the angioplasty.
• 9:15
  SPEAKER_00: Basically, they tried an angioplasty.
• 9:17
  SPEAKER_00: It failed.
• 9:18
  SPEAKER_00: It basically succeeded in blocking an artery that would have been 90 plus percent blocked anyway, which necessitated emergency bypass surgery that same day.
• 9:27
  SPEAKER_00: So I had a few days before the angioplasty, then I had the surgery, and then I had a few days after that.
• 9:32
  SPEAKER_00: So I had the better part of two weeks in hospital.
• 9:36
  SPEAKER_00: And it was interesting because back then you could go outside and you'd see people smoking literally right outside the hospital doors.
• 9:45
  SPEAKER_00: And I remember saying to myself, and I remember talking to a couple of these patients, saying, What are you doing?
• 9:50
  SPEAKER_00: when they told me that they had issues similar to mine.
• 9:53
  SPEAKER_00: They were tended to be older, but still, I said, Why are you smoking?
• 9:57
  SPEAKER_00: And they couldn't answer it.
• 9:59
  SPEAKER_00: I can't quit.
• 10:00
  SPEAKER_00: Perhaps because it happened to me at such a young age.
• 10:03
  SPEAKER_00: That part of the denial I didn't have to live with.
• 10:06
  SPEAKER_00: It was easy intellectually for me.
• 10:08
  SPEAKER_00: And again, I had a couple of weeks of being in an environment where I really couldn't smoke anyway.
• 10:13
  SPEAKER_00: So by the time I got out of the hospital, I just found other things to do.
• 10:18
  SPEAKER_00: I probably ate more and did other things.
• 10:21
  SPEAKER_00: But yeah, so it wasn't really that difficult to quit smoking.
• 10:24
  SPEAKER_06: So you've taken us through this particular episode and the angioplasty.
• 10:30
  SPEAKER_06: What came next?
• 10:31
  SPEAKER_06: Because you were talking initially about multiple diagnoses over the course of your lifetime.
• 10:36
  SPEAKER_06: What came after all of this?
• 10:38
  SPEAKER_00: Yeah, so I had a few sort of cardiovascular things happen.
• 10:42
  SPEAKER_00: And again, each one of those was episodic.
• 10:44
  SPEAKER_00: I dealt with it and then moved on.
• 10:45
  SPEAKER_00: It would have been the very beginning of 2020.
• 10:47
  SPEAKER_00: I had a very serious blood pressure spike.
• 10:51
  SPEAKER_00: And it was detected through normal cardiovascular tests.
• 10:54
  SPEAKER_00: I was going in for an echocardiogram, and they take your blood pressure before, and it was a huge spike, like 210 over 110.
• 11:01
  SPEAKER_00: And those are numbers that you should be going to the hospital.
• 11:04
  SPEAKER_00: They took it a few times and it wasn't really coming down.
• 11:07
  SPEAKER_00: They gave me medication anyway.
• 11:08
  SPEAKER_00: So that was the beginning of all of those multiple diagnoses.
• 11:13
  SPEAKER_00: Subsequently, again, as my cardiologist detected in blood work that kidney function had seriously declined, almost to the point of needing dialysis, not quite.
• 11:23
  SPEAKER_00: And so I was back in hospital.
• 11:25
  SPEAKER_00: So I had a few stays in hospital in 2020, right in the depths of COVID.
• 11:30
  SPEAKER_00: And it was an interesting exercise in seeing what was going on.
• 11:35
  SPEAKER_00: Fortunately, I was able to walk the halls while I was in hospital.
• 11:39
  SPEAKER_00: I had to wear a mask.
• 11:40
  SPEAKER_00: And so they were trying to determine what had caused the blood pressure spike, what had caused the kidney inflammation.
• 11:45
  SPEAKER_00: At the same time, I had a lump on my neck that was being investigated, turned out to be thyroid cancer.
• 11:51
  SPEAKER_00: All of those things in January to April time frame, April of 2020 is when I was told I had cancer for the first time.
• 11:59
  SPEAKER_00: Something I'll never forget.
• 12:01
  SPEAKER_00: And that was the day they actually told me as I was being discharged from hospital, I said, Oh, we've got your biopsy results.
• 12:08
  SPEAKER_00: Guess what?
• 12:09
  SPEAKER_00: Remember my wife picking me up and I told her, and I broke down.
• 12:14
  SPEAKER_00: I don't do that, and I just totally lost it.
• 12:16
  SPEAKER_00: Cried like a baby.
• 12:18
  SPEAKER_06: That's a lot to absorb.
• 12:19
  SPEAKER_06: It's like back to back.
• 12:21
  SPEAKER_00: It was, but I expected it.
• 12:22
  SPEAKER_00: It was expected that I would have thyroid cancer.
• 12:25
  SPEAKER_00: But when you're told you have something like cancer, and it's interesting because that hit me more than the kidney issue, more than my cardiovascular history.
• 12:36
  SPEAKER_00: I had also done work in cancer, co-authored a couple of papers on cancer in the workplace.
• 12:43
  SPEAKER_00: And maybe because I was more familiar with cancer, I don't know, or maybe because it's cancer, but being told you have cancer, now I've been told twice I had the reoccurrence four years later.
• 12:54
  SPEAKER_00: So all of these different diagnoses, the cancer one in some ways was the easiest because it was a straight lump on my neck, investigated.
• 13:02
  SPEAKER_00: They do biopsy, they find out it's cancerous.
• 13:04
  SPEAKER_00: You've got to have a thyroidectomy.
• 13:06
  SPEAKER_00: So I had my neck sliced open and they found it it spread just to a few of the surrounding lymph nodes, but not beyond.
• 13:13
  SPEAKER_00: But that was a fairly straight line from suspicion to diagnosis to treatment to recovery.
• 13:21
  SPEAKER_00: Whereas the kidney stuff, they couldn't find the cause of it.
• 13:24
  SPEAKER_00: And at first the kidney function wasn't improving, it wasn't worsening, it stabilized.
• 13:29
  SPEAKER_00: And then very heavy doses of medication kind of restored kidney function.
• 13:33
  SPEAKER_00: So I never did have to go on dialysis.
• 13:35
  SPEAKER_00: But that journey and trying to understand what had caused the kidney issue was a lot tougher for me in some respects.
• 13:44
  SPEAKER_06: So even though initially getting the news of the cancer is what rattled you the most, and I think everybody fears the C-word in that moment.
• 13:54
  SPEAKER_00: In that moment, the kidney story was a much longer, basically, again, from the beginning of 2020.
• 14:00
  SPEAKER_00: It was really only in about September of 2020 after another stay in the hospital.
• 14:06
  SPEAKER_00: I'd been released, and then kidney function had been restored, then it crashed again over the summer.
• 14:10
  SPEAKER_00: I had to go back into hospital, and they finally determined that it was a chronic kidney inflammation called colombial aurone nephritis, or GN for short.
• 14:19
  SPEAKER_00: And then I was referred to a specialist, and I've been treated ever since, and all that is fine.
• 14:23
  SPEAKER_00: So, yes, in that moment, that's what hit me the hardest.
• 14:27
  SPEAKER_00: I didn't lose it, I didn't cry, I didn't, with all of the other stuff, I was able to deal with it.
• 14:33
  SPEAKER_00: But it was very frustrating because I had all these different specialists who were prescribing this test, that test, this medication, do this, do that.
• 14:41
  SPEAKER_00: And no one was really putting the whole picture together.
• 14:45
  SPEAKER_00: And one specialist would say we suspect this, and the other one would say we suspect that, and let's do, and nothing was definitive.
• 14:51
  SPEAKER_00: So that part in some respects was harder.
• 14:55
  SPEAKER_06: So are you seen now by cardiologists and nephrologists, and probably oncologists as well, I suppose, with all three specialties?
• 15:02
  SPEAKER_00: Oncologists, yes, and endocrinologist, yes, cardiologist and nephrologist, too, actually.
• 15:08
  SPEAKER_00: So I have a treating nephrologist here in my local area, and then there is the specialty clinic for that glomularone nephritis.
• 15:16
  SPEAKER_00: They're probably going to discharge me this year, so they tell me, because I have now basically almost a complete absence of kidney disease, and kidney function is very much restored.
• 15:27
  SPEAKER_00: I'm long since off all the other meds that I was taking, which was another part of the journey is trying to address the blood pressure spike on the one hand, which again, I didn't have a history of high blood pressure, and addressing the kidney issue and then having cardiac.
• 15:43
  SPEAKER_00: So the cardiac people say drink less water because I had the kidney issue caused fluid buildup.
• 15:51
  SPEAKER_00: The nephrology people say drink more water because the kidneys need, you know.
• 15:55
  SPEAKER_00: So one wants wet, the other wants dry, and try to balance all of it.
• 15:58
  SPEAKER_00: And thank God I've now for some time it's all sort of regulated and I don't have to worry so much about diet.
• 16:05
  SPEAKER_00: And I better not drink one more glass of water and all that.
• 16:09
  SPEAKER_00: But I gained 30 pounds of weight and it was fluid as a result of the kidney issue.
• 16:14
  SPEAKER_00: So that was of concern, of course, to the cardiologist and their people.
• 16:19
  SPEAKER_00: So it's been an interesting journey in terms of medications.
• 16:23
  SPEAKER_00: And it's one of the things that I learned through this that I never worried about before all this was okay, I need context for something.
• 16:31
  SPEAKER_00: If you want me to try this new medication or do this or do that, tell me why.
• 16:36
  SPEAKER_00: Usually the care I got was excellent.
• 16:39
  SPEAKER_00: Remember, this was the depths of COVID before we had vaccines.
• 16:42
  SPEAKER_00: So I'm very grateful for the treatment I got from the medical system.
• 16:47
  SPEAKER_00: But putting it all together, and yes, my family physician helped to play a role, but honestly, there was so much going on that when I would have a consult with him, it was as much my updating him because he'd have the reports, he'd say, Okay, what went on with this appointment and what did this specialist tell you, and all of that.
• 17:07
  SPEAKER_00: So I would have loved to have had a professional who could sit with me and make sense of all of this.
• 17:15
  SPEAKER_00: My wife was great, and having a support system is huge.
• 17:19
  SPEAKER_00: Again, I'm a pretty resilient person, but my wife would sit in on some of the consults, and she's a better note taker than I am.
• 17:25
  SPEAKER_00: So I'd do the talking and she'd listen and take notes, and afterwards we'd compare and she'd say, The doctor said this.
• 17:30
  SPEAKER_00: And I said, No, I think the doctor said that.
• 17:32
  SPEAKER_00: And it would turn nine times out of ten, she was right.
• 17:35
  SPEAKER_00: So it helped me to manage things, it helped me to understand things.
• 17:40
  SPEAKER_00: We could talk about it.
• 17:42
  SPEAKER_00: I've got a pretty good network of friends and professional colleagues.
• 17:46
  SPEAKER_00: And because I work in the space, there are people that I'm closer with whom I've shared my story.
• 17:52
  SPEAKER_00: So that's been important support for me as well.
• 17:55
  SPEAKER_06: So I imagine what it would be like for somebody who doesn't have that support, whether from their spouse or their network or their professional life and so on.
• 18:05
  SPEAKER_06: It goes to show how difficult it is, right?
• 18:07
  SPEAKER_06: For people who have multiple conditions and multiple specialists to deal with and so on.
• 18:12
  SPEAKER_00: There's an individual who I actually got her to speak with me at a conference.
• 18:16
  SPEAKER_00: She was diagnosed with a blood cancer at 39, and she works in this workplace health and benefit space.
• 18:22
  SPEAKER_00: She was subsequently diagnosed with depression, and she had a three-year-old child.
• 18:26
  SPEAKER_00: So you can imagine what was going on.
• 18:29
  SPEAKER_00: And the reason I got her to speak is because when she disclosed her story publicly, she had already disclosed it to me privately.
• 18:36
  SPEAKER_00: I said, we should really talk about our cancer journeys and what she learned.
• 18:40
  SPEAKER_00: And the reason I mentioned her, Christine, is because her story of being younger than me in terms of a cancer journey, having all these things happen, no one put it together for her.
• 18:50
  SPEAKER_00: And she worked at a company that had a lot of benefits and all that.
• 18:54
  SPEAKER_00: And she said, I'm a professional in the field.
• 18:56
  SPEAKER_00: I know how to access these things.
• 18:58
  SPEAKER_00: I know where my benefits and health information is.
• 19:01
  SPEAKER_00: But she was diagnosed with depression.
• 19:04
  SPEAKER_00: She wasn't nearly as functional as she normally is.
• 19:06
  SPEAKER_00: She said, Here I was having all this knowledge.
• 19:09
  SPEAKER_00: It would have been great had I had someone who could tell me, Oh, you've got this benefit, and I suggest you do this and that should figure all that out for herself.
• 19:18
  SPEAKER_00: So we put an undue amount of burden on the patient to figure it out.
• 19:23
  SPEAKER_06: At a time when they need that support the most because they're dealing with the condition.
• 19:29
  SPEAKER_00: Yeah, they do.
• 19:30
  SPEAKER_00: I've received a ton of information through the health system, through places that I worked at about different conditions that I had.
• 19:37
  SPEAKER_00: But sometimes you need someone to help.
• 19:40
  SPEAKER_00: And that's one of the things that I learned at the end of 2020 when I was at a hospital and I was told by the system, okay, you're good to go.
• 19:47
  SPEAKER_00: I hadn't stopped working through that whole 2020 journey.
• 19:50
  SPEAKER_00: And the nurses would laugh that I had my laptop delivered by my wife.
• 19:55
  SPEAKER_00: They would wipe it down, they'd bring it to my room, I'd be on a conference call, and the nurses would come in to do something, and they'd smile and say, Oh, Alan's on another call, we'll come back later.
• 20:04
  SPEAKER_00: So it was great.
• 20:04
  SPEAKER_00: They really accommodated me.
• 20:06
  SPEAKER_00: But my point is that when I was discharged, I assumed, okay, I did, I still worked, but I had to take a bit of a step back.
• 20:13
  SPEAKER_00: Suddenly I realized that I was having to take a nap at one o'clock in the afternoon, or I'd read the same page three, four, or five times.
• 20:21
  SPEAKER_00: I'd say, okay, why is it not sinking in?
• 20:24
  SPEAKER_00: It was all these things that I know professionally through my work, but had never experienced them as a patient.
• 20:31
  SPEAKER_00: I didn't have long courses of chemo.
• 20:33
  SPEAKER_00: Thyroid cancer is a little different.
• 20:34
  SPEAKER_00: You have an operation and then three days, four days, whatever it was, of isolation in hospital to have radioactive iodine.
• 20:42
  SPEAKER_00: That was it.
• 20:43
  SPEAKER_00: I didn't have any other treatments.
• 20:45
  SPEAKER_00: So I didn't have what's known as chemo brain, for example, but I had something akin to it.
• 20:50
  SPEAKER_00: I certainly had cognitive dysfunction.
• 20:53
  SPEAKER_00: I ended up over-promising and underdelivering to clients, to colleagues.
• 20:58
  SPEAKER_06: Alan, at that point, did you have that spike also of blood pressure and then with the kidney inflammation?
• 21:03
  SPEAKER_06: Because maybe that was the source of the lack of energy.
• 21:07
  SPEAKER_06: And because when your kidneys aren't functioning properly, you're in a little state of toxicity, right?
• 21:13
  SPEAKER_00: By the time kidney function was a lot better than it was a few months earlier.
• 21:19
  SPEAKER_00: So, yes, I was still dealing with all the different treatments and medications.
• 21:23
  SPEAKER_00: I think it was the belated effects of everything that had happened, both mentally and physically, but just took its toll.
• 21:30
  SPEAKER_00: I haven't napped since I was in diapers.
• 21:32
  SPEAKER_00: I don't do that.
• 21:33
  SPEAKER_00: And I literally, I just had to stop doing whatever I was doing and lie down for half an hour or 45 minutes.
• 21:40
  SPEAKER_03: Did you manage work during all this time?
• 21:42
  SPEAKER_03: You mentioned you take a step back when you needed to, which is great to have that flexibility.
• 21:47
  SPEAKER_03: You also mentioned overpromising and under delivering, which is very hard when you're here on the line for the work.
• 21:53
  SPEAKER_03: It's you for the deliverable.
• 21:55
  SPEAKER_03: So, how did you navigate all of that to keep going in the workplace?
• 22:00
  SPEAKER_03: And what was the impact of all of these personal health situations on your work and the family?
• 22:06
  SPEAKER_00: It was interesting.
• 22:07
  SPEAKER_00: Lots of people I worked with knew that I was in hospital and knew that things were going on.
• 22:12
  SPEAKER_00: At that earlier stage, I had to convince people.
• 22:15
  SPEAKER_00: People wanted to be very accommodating and they wanted to be very supportive.
• 22:18
  SPEAKER_00: And their way of doing that was let's not bother Alan with this stuff.
• 22:22
  SPEAKER_00: And I would say, no, I want to be, I need to be at this meeting.
• 22:25
  SPEAKER_00: Let me do what I think that I can do.
• 22:28
  SPEAKER_00: And then it almost flipped when I got out of hospital for the last time, would have been September-ish of 2020.
• 22:36
  SPEAKER_00: After that, I assumed, because the medical system told me that I was pretty much good to go.
• 22:42
  SPEAKER_00: And I thought I could resume my similar schedule.
• 22:44
  SPEAKER_00: I could make all these commitments.
• 22:46
  SPEAKER_00: So it impacted my work because I, again, the overpromising and under-delivering side, say, I think I can get you this report by next Friday.
• 22:54
  SPEAKER_00: And then on the Tuesday, Wednesday, or thereabouts, so a couple of days before, I'd have to make that call or write that email or send that text message saying, I'm sorry, but I'm not going to be able to get this to you by that time.
• 23:08
  SPEAKER_00: I'm self-employed.
• 23:09
  SPEAKER_00: This was more about clients and colleagues.
• 23:13
  SPEAKER_00: So people that I work with, and Ursula, you know a couple of them, but people that I work with in the field that I was collaborating with on different projects.
• 23:21
  SPEAKER_00: One of them was some of the cancer work that I referred to.
• 23:24
  SPEAKER_00: And the individual that I've partnered with in this, I had to make that call.
• 23:28
  SPEAKER_00: And I still remember calling that individual saying, when I got my cancer diagnosis, said, guess what?
• 23:34
  SPEAKER_00: Now, in addition to all the work that we've done, I now have my own cancer diagnosis.
• 23:39
  SPEAKER_00: So it impacted work in a variety of ways.
• 23:43
  SPEAKER_00: And again, that was probably a mistake I made because I assumed I was back to 100%.
• 23:48
  SPEAKER_00: Everyone else assumed Alan's 100%, and so Alan could be the old Alan.
• 23:53
  SPEAKER_03: If you don't tell them differently, they want to think you're there.
• 23:57
  SPEAKER_00: I didn't think to tell them differently.
• 23:59
  SPEAKER_00: And no one, again, no one helped me.
• 24:02
  SPEAKER_00: I had a good friend who passed away a few years ago.
• 24:05
  SPEAKER_00: He had fairly advanced colon cancer, and he was a psychologist.
• 24:09
  SPEAKER_00: And one of the things he said when he was first diagnosed and going through treatment, and he was a pretty good friend, he'd say, you know, Alan, no one prepares you for survivorship.
• 24:18
  SPEAKER_00: No one prepares you for what the journey entails.
• 24:23
  SPEAKER_00: And again, he was a psychologist.
• 24:25
  SPEAKER_00: He was trying to understand the mental health aspect of it.
• 24:28
  SPEAKER_00: So I think for me, it impacted not only my work, it impacted me personally because I tend to be active.
• 24:35
  SPEAKER_00: I like to see people and do things and socialize.
• 24:39
  SPEAKER_00: And sometimes I had to either cancel plans or cut them short because I just couldn't manage it.
• 24:44
  SPEAKER_00: Sometimes it was overwhelming.
• 24:46
  SPEAKER_00: So how much of that was mental, how much of that was physical, probably a combination of both.
• 24:50
  SPEAKER_00: One drives the other, as we know very well.
• 24:53
  SPEAKER_00: And I know that intellectually, but living it personally is quite something different.
• 24:59
  SPEAKER_03: I appreciate you sharing that.
• 25:00
  SPEAKER_03: And it's always easier retrospectively to say, oh gosh, that was a tough time.
• 25:05
  SPEAKER_03: When you're in the tough time, it's a little bit harder to notice how things are going on.
• 25:09
  SPEAKER_03: You're just in survival mode to try to keep going.
• 25:12
  SPEAKER_03: And all this work you've been doing, Ellen, in the workplace and chronic disease and thinking ahead as to where you would like to see things going.
• 25:21
  SPEAKER_03: Tell us a little bit about this.
• 25:23
  SPEAKER_03: Do you have this personal experience and navigating multiple serious diagnoses?
• 25:28
  SPEAKER_03: Then alongside this, you're working in health and benefits as a strategist, and you've been able to blend all this experience.
• 25:38
  SPEAKER_03: What should systems be thinking of moving forward?
• 25:41
  SPEAKER_03: And what are some things you're really excited about?
• 25:44
  SPEAKER_00: Yeah, I think one of the things, because I work a lot in workplace health, and this is actually true of the health system as well, is really underestimating the prevalence of chronic disease.
• 25:54
  SPEAKER_00: So the stats are out there on the workplace side, employers consistently, when you look at what employers say about the prevalence of chronic disease in their workplaces, and then you go and poll employees and ask them, and you find out that, oh, the workplace says, well, 30% of our population are living with a chronic disease.
• 26:11
  SPEAKER_00: And when you poll employees, you find that it's more like 50, 60, 70% of people say they're living with some kind of chronic conditions.
• 26:19
  SPEAKER_00: So there's a disconnect there that through my work a lot of us have been trying to address.
• 26:24
  SPEAKER_00: And part of that is there's an issue around lack of data.
• 26:28
  SPEAKER_00: And that's both in the health system and in the workplace system.
• 26:32
  SPEAKER_00: And I know as a patient, and it's very much dependent on where you are, in some provinces and some parts of provinces, as a patient, you can access data more readily, your own data more readily.
• 26:45
  SPEAKER_00: I can go to any one of the three hospitals that I've been treated at in the last few years, and I can go onto that portal and get that data.
• 26:53
  SPEAKER_00: But try and put all of Alan Smovsky's data together, it exists, and my missions can get at it.
• 26:59
  SPEAKER_00: But even then, it's not.
• 27:00
  SPEAKER_00: I think the lack of data, which sort of leads me to my next thought, which is comorbidities.
• 27:06
  SPEAKER_00: And so through my work, I'm aware of the comorbidities of many chronic conditions: cancer and mental health, diabetes or asthma and mental health.
• 27:16
  SPEAKER_00: Actually, if you have a mental health condition, you're also more likely to have a chronic condition such as diabetes or develop one.
• 27:23
  SPEAKER_00: But that is one of the gaps in the system.
• 27:25
  SPEAKER_00: The stats are there, the knowledge is there, but the systems, both in the health system and in the workplace, don't really support comorbidities very well.
• 27:36
  SPEAKER_00: The system often works, and sometimes if you're working with a specialist, they're working on that particular area.
• 27:42
  SPEAKER_00: And through my entire journey, no one really talked to me about mental health.
• 27:48
  SPEAKER_00: I think one of the nephrology clinics I went to had a social worker.
• 27:52
  SPEAKER_00: And I had one conversation with that social worker, and that was about it, because I was seemed to be fairly resilient.
• 27:59
  SPEAKER_00: So that is some of the gaps that are in the system.
• 28:02
  SPEAKER_06: So if the payers had that data, what do you think they could do to change?
• 28:07
  SPEAKER_06: What would you, in an ideal world, want to see happening?
• 28:11
  SPEAKER_00: So a couple of things.
• 28:12
  SPEAKER_00: One is to facilitate the patient journey.
• 28:16
  SPEAKER_00: The individual, Lindsay, is her name, and I'm allowed to disclose her name that I told you about.
• 28:21
  SPEAKER_00: It would have been helpful had someone been able to put because the data is there.
• 28:25
  SPEAKER_00: So if the data was more organized and someone could go to someone like that or me to say, did you know you have access to these resources?
• 28:33
  SPEAKER_00: There are a lot of simple fixes for that.
• 28:35
  SPEAKER_00: If a doctor prescribed diagnoses you with something and you're prescribed a medication, you go to the pharmacy to pick it up, wouldn't it be great that through that dynamic, the patient could be connected to other resources?
• 28:46
  SPEAKER_00: So we've talked a fair bit about cancer.
• 28:48
  SPEAKER_00: So let's take something like diabetes, which I don't have, but although I guess I was at risk of having it.
• 28:54
  SPEAKER_00: Most workplace plans cover consults with a dietitian, for example.
• 28:58
  SPEAKER_00: Most workplace plans have mental health support.
• 29:02
  SPEAKER_00: Sometimes you see that in the public health system.
• 29:04
  SPEAKER_00: So what I would want to change is to have that connection in a teachable moment when you're in the doctor's office or you're going to a let's say a pharmacy to pick up your medications.
• 29:15
  SPEAKER_00: Some pharmacies do that and they'll provide some of the coaching there.
• 29:19
  SPEAKER_00: That hasn't really been my experience all that much.
• 29:22
  SPEAKER_00: But the systems, this is all done in real time.
• 29:25
  SPEAKER_00: So it would be relatively easy for the pharmacy to have a flag in the system to say, oh, because of this, you're eligible for a dietitian consult.
• 29:36
  SPEAKER_00: Would you like us to connect you or whatever the dynamic is?
• 29:39
  SPEAKER_00: So that's part of it.
• 29:40
  SPEAKER_00: And that's part of the gaps that we see.
• 29:42
  SPEAKER_00: And again, it comes back to the burden on the patient.
• 29:44
  SPEAKER_00: Patients are far too burdened.
• 29:46
  SPEAKER_00: I have the knowledge that I need to access resources.
• 29:50
  SPEAKER_00: I know where the bodies are buried, so to speak, and you know what to do and how to do it.
• 29:54
  SPEAKER_00: Now I've never been diagnosed with depression.
• 29:56
  SPEAKER_00: If were I diagnosed with something like depression, how able would I to do that?
• 30:01
  SPEAKER_00: So when I think about the average patient, whether it's workplace or health system, you have to know what questions to ask.
• 30:08
  SPEAKER_00: And that's part of it as well.
• 30:11
  SPEAKER_00: But that's just asking the right questions.
• 30:13
  SPEAKER_00: If the data were there, it would make it easier because then clinicians could prescribe some of these resources.
• 30:20
  SPEAKER_00: And then I, as the patient, wouldn't have to worry about it.
• 30:22
  SPEAKER_00: I'll want context, but if the doctor suggests I do something, generally I will do it.
• 30:26
  SPEAKER_06: And I'll take the opportunity to put in a good word for caregivers, because as you say, sometimes when the patient is just too burdened, too incapacitated by whatever it is they're dealing with, it's the caregiver that does all this advocacy for their loved one and taking that burden on.
• 30:43
  SPEAKER_06: All of a sudden, they become the dispatcher, the pseudo-social worker, whatever, the quarterback.
• 30:48
  SPEAKER_06: Yeah.
• 30:49
  SPEAKER_06: And people underestimate the toll that it takes on caregivers as well.
• 30:54
  SPEAKER_03: Christine, that's a really good point.
• 30:55
  SPEAKER_03: And Alan, you had mentioned one physician, one specialist said one thing, the other one said contradictory things.
• 31:02
  SPEAKER_03: I guess you get to pick which one you want to listen to in those situations.
• 31:05
  SPEAKER_03: But it is very much a situation of navigation.
• 31:09
  SPEAKER_03: And certainly as well, if there had been situations where you and your wife remembered different things from the same appointment, having the right information at the right time in the right format so that you can access it.
• 31:21
  SPEAKER_03: And I know we're going to have more conversations on data because that data interoperability situation is a real challenge when patients can't have access to their own data in the right time in the right format.
• 31:31
  SPEAKER_03: And they're the quarterback.
• 31:32
  SPEAKER_03: How does that look moving forward?
• 31:35
  SPEAKER_03: So, Ellen, I want to say thank you for this incredibly insightful conversation.
• 31:38
  SPEAKER_03: This has been very interesting.
• 31:40
  SPEAKER_03: And I want to congratulate you on the tremendous success you've had over the years, moving the needle forward in the workplace and the incredible consulting that you've done to help think about health and benefits differently and weaving in your own personal experience.
• 31:56
  SPEAKER_03: To end on a fun note, I understand you really enjoy the rock concerts.
• 32:00
  SPEAKER_03: So I want to know a little bit more about this.
• 32:02
  SPEAKER_03: Tell us about this music, love.
• 32:05
  SPEAKER_00: It goes way back.
• 32:06
  SPEAKER_00: I attended my first raw concert when I was 12.
• 32:09
  SPEAKER_00: And if you can imagine that my parents let me and one friend take a bus to downtown Montreal at the Montreal Forum, they're Rolling Stones.
• 32:17
  SPEAKER_00: I have two kids, as if I would have let them do that at age 12.
• 32:20
  SPEAKER_06: But those were different times.
• 32:22
  SPEAKER_06: We got to do a lot of things back then that people don't let their kids do nowadays.
• 32:26
  SPEAKER_00: Those were different times.
• 32:28
  SPEAKER_00: Yes, exactly.
• 32:29
  SPEAKER_00: I've always had an appreciation for music.
• 32:32
  SPEAKER_00: There's a side of my family on my mother's side that is extremely musical.
• 32:36
  SPEAKER_00: I had an uncle and aunt who played at Carnegie Hall, and one of my cousins on that side was a very prolific musician.
• 32:43
  SPEAKER_00: So we joke about my son is really should be the Ghent side of the family because he has that music touch.
• 32:50
  SPEAKER_00: He's got perfect pitch, as did my mother.
• 32:52
  SPEAKER_00: I don't.
• 32:53
  SPEAKER_00: But I've always appreciated music.
• 32:55
  SPEAKER_00: I got into it.
• 32:56
  SPEAKER_00: And this is we're talking an era where rock music was really taking off.
• 33:01
  SPEAKER_00: So appreciation of rock music is something that's always been there.
• 33:05
  SPEAKER_00: And it's interesting to hear my sons and people in his milieu say things like, Yeah, that was the best music.
• 33:11
  SPEAKER_00: All the the rock music of the 60s, 70s, 80s was a lot better than what's out there today.
• 33:17
  SPEAKER_00: I've always gone to concerts and we continue to go.
• 33:19
  SPEAKER_00: And sometimes we go to see these bands that they're getting older, and so there aren't that many more opportunities to see some of these rock gods that are some of them are well into their 70s, some of them are even in their 80s, and they're still out there playing.
• 33:33
  SPEAKER_00: And hats off to them.
• 33:34
  SPEAKER_00: And that's how I want to live.
• 33:37
  SPEAKER_00: I want to be able to go to rock concerts.
• 33:39
  SPEAKER_00: I'd love to be able to get up on stage and play, but I don't have that ability.
• 33:43
  SPEAKER_06: So And I bet you the music got you through the tough times as well, right?
• 33:47
  SPEAKER_06: It's very therapeutic.
• 33:49
  SPEAKER_00: Absolutely.
• 33:49
  SPEAKER_00: Yeah.
• 33:50
  SPEAKER_00: And still does.
• 33:51
  SPEAKER_06: Thank you so much, Alan.
• 33:52
  SPEAKER_06: It was a pleasure to have this discussion with you and to get your insights.
• 33:56
  SPEAKER_06: I'm sure we could have carried on for another hour for sure and delved into deeper conversations, but I appreciate your time.
• 34:04
  SPEAKER_00: Thank you both.
• 34:04
  SPEAKER_00: I very much appreciate the time as well and happy to share my story.
• 34:08
  SPEAKER_06: Thank you so much.
• 34:09
  SPEAKER_06: And we wish you another, I don't know, 30 great years without having to juggle all of these things so you can live your life to the fullest and rock on.
• 34:17
  SPEAKER_00: Appreciate that.
• 34:18
  SPEAKER_00: And back at you, perhaps more than 30 years.
• 34:21
  SPEAKER_00: But yes, I wish you both well.
• 34:22
  SPEAKER_00: Thanks again.
• 34:23
  SPEAKER_00: Bye-bye.
• 34:29
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• 34:34
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• 34:40
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• 34:47
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• 34:51
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• 35:02
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• 35:12
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• 35:14
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