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From Dialysis to Second Chances: The Truth About Kidney Transplants and Patient Advocacy · Amplify: A Podcast Powered by Patient Voice Partners

0:01
SPEAKER_03: Welcome to Amplify, Elevating Patient Voices, a podcast powered by patient voice partners, where real stories spark bold conversations.
0:11
SPEAKER_03: I'm Ursula Mann.
0:12
SPEAKER_00: And I'm Brent Cordy.
0:14
SPEAKER_00: Together, we're talking with patients, caregivers, and the healthcare change makers who are listening and taking action.
0:21
SPEAKER_03: From personal journeys to policy shifts, these are the voices shaping a healthcare system that listens.
0:32
SPEAKER_02: I'm here today with my colleague, Christine P.
0:34
SPEAKER_02: Sapia.
0:35
SPEAKER_02: On today's episode at Amplify, we are going to be talking about kidney transplant.
0:40
SPEAKER_02: Christine, this is an area that we've talked about quite a bit with regards to kidney transplant.
0:45
SPEAKER_02: And I know that you have a wealth of personal experience in this area.
0:49
SPEAKER_01: What are your thoughts about today's show?
0:51
SPEAKER_01: It's an area and a subject that's near and dear to my heart, given that I donated a kidney to my brother 11 years ago.
0:57
SPEAKER_01: And it's an area that I'm heavily involved in.
0:59
SPEAKER_01: I'm very excited to welcome Sue today and to discuss and dive into it.
1:04
SPEAKER_02: Yeah, Christine, thank you for sharing that.
1:06
SPEAKER_02: And I've learned a lot from you about your own experience.
1:10
SPEAKER_02: In my life, my former sister-in-law, she subsequently unfortunately passed away.
1:15
SPEAKER_02: But my sister-in-law, it was in years of dialysis as a teenager and actually had a kidney transplant.
1:21
SPEAKER_02: My husband's family had to navigate the system and they also didn't speak English, which was a real challenge.
1:27
SPEAKER_02: So there was years of dialysis, and subsequently she did quite well on after having the kidney transplant, but some other stuff happened.
1:34
SPEAKER_02: So this is an area that I understand a little bit about, but really appreciate learning a lot more and understanding different experiences as well.
1:43
SPEAKER_02: So on today's show, I'm delighted to have Susan McKenzie join.
1:48
SPEAKER_02: Susan is a kidney patient who received a kidney transplant from her sister-in-law in 2010, has a lot of lived experience in this area and a deep passion for improving care that kidney patients and donors receive, and even increasing access to kidney transplant for those who need one.
2:06
SPEAKER_02: Sue has dedicated herself as an advocate for kidney and transplant patients.
2:10
SPEAKER_02: She's an experienced patient research partner and co-founder and chair of the Transplant Ambassador Program and holds the position of president of the Kidney Patient and Donor Lights Canada and the Renal Patient and Donor Foundation Canada as well.
2:25
SPEAKER_02: Susan, I want to welcome you to today's show.
2:28
SPEAKER_04: Thank you.
2:28
SPEAKER_04: It's great to be here.
2:29
SPEAKER_01: So why don't we get started, Sue, with you telling us a little bit more about your experience, your health journey, how you found out that you were experiencing kidney failure, and what did you have to do?
2:41
SPEAKER_01: How did you go about finding a living donor, etc.?
2:44
SPEAKER_04: Sure.
2:44
SPEAKER_04: So I'll give you the Coles notes.
2:46
SPEAKER_04: Basically, my dad had kidney disease and had a kidney transplant in the 1970s in Toronto.
2:52
SPEAKER_04: That was a big deal.
2:53
SPEAKER_04: We were I think I was about six or seven at the time.
2:57
SPEAKER_04: And even as a kid, that was a big deal for our family.
3:00
SPEAKER_04: And I was well aware of what was happening after that.
3:03
SPEAKER_04: Then my grandfather ended up having kidney disease after my dad and being on dialysis.
3:08
SPEAKER_04: And the doctors felt that it was just a coincidence that both of them had a kidney disease.
3:14
SPEAKER_04: And there were various reasons that they gave for that being the case.
3:17
SPEAKER_04: And my dad had his transplant, I think it was 75.
3:20
SPEAKER_04: He had it for 31 years.
3:22
SPEAKER_04: He passed away in his mid-60s.
3:25
SPEAKER_04: So it was before I was diagnosed with kidney disease.
3:28
SPEAKER_04: As much as I was aware of it, I didn't ever really have a conversation with him about it, other than I think the idea of going through life-changing experiences, but not specifically about this kidney experience.
3:40
SPEAKER_04: And so when I got into my 30s, I thought, I really want to rule this out.
3:45
SPEAKER_04: I don't want to have this possibility that I could have kidney disease looming over my head.
3:49
SPEAKER_04: So I would ask my doctor, my GP, like this was actually my late 20s, even, to test my kidneys.
3:54
SPEAKER_04: And it was elevated.
3:55
SPEAKER_04: My creatinin was elevated, which is an indicator of your kidney's not functioning really well.
3:59
SPEAKER_04: But it was not significant.
4:00
SPEAKER_04: It was just a slight concern.
4:02
SPEAKER_04: Even if for him, it wasn't a concern.
4:04
SPEAKER_04: He didn't think it was a problem.
4:05
SPEAKER_04: And I was happy to leave it as not a problem.
4:08
SPEAKER_04: Every year when I would get it tested, it would be slightly higher.
4:11
SPEAKER_04: So meaning my kidney function was decreasing slightly.
4:14
SPEAKER_04: And so I started to ask him about year four or five if he could send me to a specialist.
4:20
SPEAKER_04: But he didn't seem keen on that.
4:21
SPEAKER_04: So again, I was probably 30 years old and he didn't seem to think that it was important for me to go to specialist.
4:28
SPEAKER_04: And that was despite, was he aware of the history with your father?
4:32
SPEAKER_04: Yeah, he was definitely aware.
4:33
SPEAKER_04: Yeah, he was definitely aware of the history.
4:35
SPEAKER_04: And so I think it took me about five years to convince him to send me to see the nephrologist.
4:39
SPEAKER_04: But of course, by that point, I was pretty sure that I didn't have it and I was just hypochondriac, trying to get because that's the way he made me feel.
4:48
SPEAKER_04: So I just thought, okay, I'll go rule this out and it won't be on my mind anymore.
4:52
SPEAKER_04: And I went to the specialist in London and he did a couple of tests and immediately, like that day, told me that I had kidney disease and would eventually need a kidney transplant.
5:01
SPEAKER_01: If you were in denial, pretty much, essentially.
5:04
SPEAKER_01: And so was your doctor, your GP.
5:07
SPEAKER_01: My doctor was in denial.
5:08
SPEAKER_01: And that denial kind of transferred over to you, essentially.
5:12
SPEAKER_01: That must have been a shocking sort of revelation, even though you had a family history.
5:16
SPEAKER_04: What I think, even though that was many years ago, probably 30 years ago now, it's the same today where general practitioners don't know a lot about kidney disease, don't open test for it, often aren't referring.
5:26
SPEAKER_04: And the reason I say that is because 30% of patients with N-stage kidney disease end up going on emergency dialysis.
5:33
SPEAKER_04: So, in other words, their doctors didn't catch it, or they don't have a family doctor.
5:36
SPEAKER_04: So 30% not being treated with when there are drugs available to treat.
5:40
SPEAKER_04: And that's a big concern.
5:41
SPEAKER_04: It was certainly a concern for me decades ago when it remains a concern.
5:44
SPEAKER_04: But once I was diagnosed, and I was diagnosed early, then I did my kidney transplant happened 16 years ago.
5:51
SPEAKER_04: And I was diagnosed about 12 years before that.
5:54
SPEAKER_04: But they didn't have the medications that are on the market now.
5:56
SPEAKER_04: So it was really just monitor and some kind of kidney supportive medication, but nothing that they have now that can actually prevent or delay the kidney disease.
6:05
SPEAKER_04: But they did what they could, and my creatinum did get down for a few years, but ultimately it went up and I needed a transplant.
6:12
SPEAKER_04: For me, I was fairly young at the time.
6:13
SPEAKER_04: So by the time I needed my transplant, I was in my early 40s and then ended up going on dialysis for a year.
6:19
SPEAKER_01: So that's interesting, Sue, because even though you knew there was a family history, even though you knew your kidneys were failing, like you had lots of you said you were in kidney failure for a good 12 years before they actually really failed on you.
6:35
SPEAKER_01: And I guess you were by then somewhat educated about what your options were.
6:40
SPEAKER_01: And despite all of that, a preemptive kidney transplant didn't happen.
6:45
SPEAKER_01: You still had to go on dialysis.
6:46
SPEAKER_01: Walk me through that.
6:48
SPEAKER_01: Oh, you're right.
6:48
SPEAKER_01: That is a problem.
6:49
SPEAKER_04: One of the problems that I faced was that because it was suspected to be a genetic condition, which again they couldn't confirm because we didn't know the gene.
6:58
SPEAKER_04: It wasn't a gene that was known that they could test for.
7:01
SPEAKER_04: What made them suspect that, Sue?
7:03
SPEAKER_04: Because of my father and my grandfather.
7:05
SPEAKER_04: And then at a young age, like no other complications at all.
7:09
SPEAKER_04: And neither did my dad, actually, really.
7:11
SPEAKER_04: So it was highly suspected, but the gene was not known.
7:15
SPEAKER_04: It's been since been found.
7:16
SPEAKER_04: But because the gene was not known, any of my blood relatives were not acceptable donors because they will have the gene.
7:24
SPEAKER_04: And finding a donor for me was much harder than it might be for like.
7:29
SPEAKER_04: So if you have a genetic condition, it's harder to find a donor.
7:32
SPEAKER_04: So you're forced to go outside of your family to look for a donor.
7:35
SPEAKER_04: And I was fortunate enough to have a number of people come forward to be tested.
7:39
SPEAKER_04: No family members, of course, but my husband's sister was ultimately my donor.
7:44
SPEAKER_04: I also had a very close friend that I've known since grade one who also was tested.
7:50
SPEAKER_04: And they were both a match.
7:51
SPEAKER_04: And they went all through the testing, which took a year for both of them.
7:55
SPEAKER_04: And my friend was ruled out just because the other one was a better surgery.
7:59
SPEAKER_04: So she's not ruled out.
8:00
SPEAKER_04: She's still a very capable, and they would have gone with her if she was the only donor.
8:03
SPEAKER_04: She had an extra vein or something, and the surgery was going to be easier with my sister-in-law.
8:07
SPEAKER_04: So they ended up going with her.
8:09
SPEAKER_04: And I have to say, my friend, she was like mourning about the fact that she had done all this testing for a year and then was ultimately rejected in her work.
8:17
SPEAKER_01: I can relate to that.
8:19
SPEAKER_01: We have the same story in our family as one of my brothers was disqualified for kidney transplant pretty much at the 11th hour because of very small kidney stones.
8:27
SPEAKER_01: And I know that not every center will disqualify somebody for such small kidney stones, but in that particular transplant center, they did.
8:35
SPEAKER_01: And he was devastated.
8:37
SPEAKER_01: Like it took him a while to get over that.
8:39
SPEAKER_01: And a lot of people don't realize that when a donor is really motivated and keen, when they get disqualified, it's devastating for them.
8:46
SPEAKER_02: Well, can you tell us a little bit more about what the testing entails?
8:49
SPEAKER_02: Because Christine, I've certainly heard you talk about this over the years.
8:53
SPEAKER_02: And I heard you say just a few minutes ago, it takes about a year, but I don't think most people really understand exactly what it entails.
9:00
SPEAKER_02: And how would you describe it to someone?
9:02
SPEAKER_02: It sounds like it's so intensive.
9:05
SPEAKER_02: You start to wrap your head around, you're ready to go there.
9:08
SPEAKER_02: But how does somebody get there?
9:09
SPEAKER_02: What does testing look like?
9:11
SPEAKER_01: I, as a donor, I maybe I can take that one.
9:13
SPEAKER_01: And essentially there's a lot of tests to be done for sure.
9:17
SPEAKER_01: As I say, they don't leave any stone unturned.
9:19
SPEAKER_01: They want to make sure that the donor is not going to be put in harm's way by donating one of their kidneys.
9:25
SPEAKER_01: The reason it takes so much time, it's not really necessary to take that much time to do the testing on a donor.
9:32
SPEAKER_01: There are centers in Ontario that are doing one-day donor tests.
9:37
SPEAKER_01: Wow.
9:38
SPEAKER_01: So essentially, if you line them all up, a donor could come in and block off the day and just go through a series of tests.
9:46
SPEAKER_01: And maybe some of them will require a follow-up test.
9:48
SPEAKER_01: I'm not saying that you'll be done and qualified after the end of the day, but at least it sure does make it a lot easier on the donor.
9:56
SPEAKER_02: That's incredible.
9:57
SPEAKER_02: And it's one day, Christine, instead of a year spread out.
10:02
SPEAKER_01: Yeah, exactly.
10:03
SPEAKER_01: So it's just because it's a lot of tests to do and it's a lot of coordination with a lot of different departments in a hospital or things like that.
10:12
SPEAKER_01: And that's the only reason why it takes so long.
10:14
SPEAKER_01: And of course, the donor has to clear their calendar to make it happen.
10:17
SPEAKER_01: It's a kind of a takes two to tango.
10:20
SPEAKER_01: But certainly when hospitals offer a one-day donor testing program, it just makes it that much easier.
10:26
SPEAKER_01: Oh, for sure.
10:27
SPEAKER_01: And these are blood tests?
10:29
SPEAKER_01: Are they what other tests are included?
10:31
SPEAKER_01: Urine tests, blood tests, 24-hour blood pressure test, kidney scans, and then they rule out any kind of cancer you might have.
10:38
SPEAKER_01: So in my case, I had to have another mammogram, and they did an ultrasound of my reproductive system, colonoscopy, you name it.
10:47
SPEAKER_01: They just want to make sure that there isn't anything lingering out there that needs to be found out before you donate a kidney.
10:54
SPEAKER_01: And then they make sure that your kidneys are working properly.
10:56
SPEAKER_01: And of course, they take an extensive question.
10:58
SPEAKER_01: There's an extensive questionnaire for lifestyle habits and your medical history, etc.
11:03
SPEAKER_01: Your blood type, obviously, to see if you could be a good match for the potential recipient.
11:08
SPEAKER_01: It's a long list, and that list differs by individuals depending on their health status and their medical history and their age.
11:15
SPEAKER_01: That's a lot.
11:16
SPEAKER_02: Thank you for listing all of those.
11:18
SPEAKER_02: It's a top to bottom.
11:19
SPEAKER_02: You're going through everything.
11:20
SPEAKER_02: Oh, yeah.
11:21
SPEAKER_02: You're going through the physical of all physical, that's for sure.
11:24
SPEAKER_02: Yeah.
11:24
SPEAKER_02: And that's on the donation side.
11:26
SPEAKER_02: So, Sue, what did testing feel like on the patient side?
11:30
SPEAKER_02: What did you have to go through?
11:32
SPEAKER_02: And was everything bucketed in appointments where you were getting or perhaps routine or you're getting evaluated by the doctor and they were adding on a testing thing, or did you have some subsequent separate tests?
11:42
SPEAKER_02: This is a testing match only situation.
11:45
SPEAKER_04: I think because I was a patient and because I was on dialysis for almost a year in the system.
11:50
SPEAKER_04: So it was in the hospitals.
11:52
SPEAKER_04: For me, the appointments weren't that much of a burden because I was well known to the system.
11:57
SPEAKER_04: I think for donors who are usually generally healthy and aren't known to the system, but don't really know where to go.
12:02
SPEAKER_04: And very seldom are hospitals that it's much harder for them.
12:05
SPEAKER_04: For me, it was not that hard.
12:06
SPEAKER_04: There were just a few key tests.
12:08
SPEAKER_04: There's a heart test and it's your regular routine testing.
12:11
SPEAKER_04: I think the heart scan probably took the longest to book, but otherwise, it wasn't a big deal.
12:16
SPEAKER_04: But there really isn't any reason that a donor should take a year to get worked up.
12:20
SPEAKER_04: Like that is a very long time.
12:22
SPEAKER_04: The average, I think, is about nine months, which is still a very long time, still too long.
12:27
SPEAKER_04: Some people can get worked up.
12:29
SPEAKER_04: It is a matter of six to eight weeks.
12:31
SPEAKER_04: I think there is a sense on the part of the system that they should work up donors slowly to give donors a chance to reflect, consider to do this, is this something they're really comfortable with, and that they're not pressuring anyone to do this.
12:44
SPEAKER_04: It does seem to for most donors to be uh far too long in terms of what they tell us.
12:49
SPEAKER_04: But to Christine's question about why I ended up going on dialysis, when I actually did have six donors who had come forward, three had gone through active testing, one had been disqualified, and the two were in active testing.
13:00
SPEAKER_04: I think because you're going in once a year.
13:04
SPEAKER_04: So for me, uh, I was going in pretty much once a year to see my creatinine to see where my kidney function was.
13:10
SPEAKER_04: A lot can happen in a year.
13:12
SPEAKER_04: And between my previous year visit and the next year visit, there had been a lot of activity.
13:18
SPEAKER_04: And I think obviously I should have been monitored more closely to see that that change was happening, which you would have been able to see through blood work, more regular blood work.
13:27
SPEAKER_04: But in my case, yeah, I was actually what they call a crash start, which is an emergency dialysis start.
13:32
SPEAKER_04: But by the time in for my annual appointment, they were basically saying you need to go on dialysis right away.
13:37
SPEAKER_04: So that was unfortunate.
13:38
SPEAKER_04: And the fact that my donors were almost through.
13:41
SPEAKER_04: So if you were able to get a preemptive donation, which is before dialysis, that's the very best option for you.
13:47
SPEAKER_04: The kidney lasts the longest, you're the healthiest, the kidney takes really well.
13:51
SPEAKER_04: But I think they didn't see me as an urgent case or something.
13:54
SPEAKER_04: So they were taking a long time to get my donors through the process.
13:57
SPEAKER_04: And I think it was just unfortunate.
13:59
SPEAKER_04: But it happens, it's not infrequent that those kinds of things happen, as I mentioned.
14:03
SPEAKER_01: Yeah, because we talked to so many patients, and that's pretty much the best case scenario.
14:07
SPEAKER_01: It's somebody that knows that they're going to go into end-stage kidney failure.
14:11
SPEAKER_01: They have a number of donors that are coming forward.
14:14
SPEAKER_01: It doesn't get better than that.
14:15
SPEAKER_01: And yet, still, because of some of these shortcomings in the system, you have somebody that has to go on dialysis.
14:22
SPEAKER_01: And Sue was lucky in that she was only on dialysis for, I say, only a year.
14:27
SPEAKER_01: It must have been a really bad year.
14:28
SPEAKER_01: But compared to other people who are on dialysis for much longer, the longer you're on dialysis is really hard on the body.
14:34
SPEAKER_01: So then you get into this vicious cycle where you're on dialysis and your health is deteriorating as you're trying to be in the best shape possible to receive a kidney from a donor.
14:46
SPEAKER_01: Really, that's why, as Susan mentioned, the best option is really a preemptive transplant.
14:51
SPEAKER_01: Avoid dialysis altogether and jump from your own kidney to somebody else's kidney.
14:56
SPEAKER_02: What do you think is the most misunderstood fact or situation out there about dialysis and kidney transplant?
15:04
SPEAKER_04: There's many.
15:05
SPEAKER_04: Starting with the fact that most people think dialysis is an easy treatment.
15:09
SPEAKER_04: It's a very difficult treatment.
15:11
SPEAKER_04: It's an extremely invasive treatment.
15:14
SPEAKER_04: It can be a very painful treatment.
15:16
SPEAKER_04: I think a lot of people who don't know anything about kidney disease just think, oh, there's dialysis.
15:20
SPEAKER_04: So they have this great treatment that can keep you alive.
15:22
SPEAKER_04: It's not a great treatment.
15:24
SPEAKER_04: It's ideally a bridge to transplant, which is a much better treatment.
15:28
SPEAKER_04: Or ideally, there's better screening in place where some of these medications, where patients can be connected and supported through some of the medications that will delay or prevent kidney disease, which is far better.
15:38
SPEAKER_04: But I do think that there's a real misunderstanding of what dialysis is and how difficult it is.
15:45
SPEAKER_01: Yeah, I agree with that.
15:46
SPEAKER_01: My brother, my kidney recipient, was a perfect example of that, is that I find people that are on dialysis are very stoic and they're going through a very hard time, but nobody knows about it.
15:59
SPEAKER_01: Because unlike somebody, for example, who's getting chemotherapy for cancer, and you might have a clue because all of a sudden you see that the person is losing their hair, they don't look well, etc.
16:10
SPEAKER_01: Here it's silent, it's not visible.
16:12
SPEAKER_01: The only thing that you can see is that person is really running out of energy.
16:16
SPEAKER_01: They don't have a whole lot of energy.
16:18
SPEAKER_01: But other than that, from an outsider who doesn't know, they don't understand how difficult it is.
16:25
SPEAKER_01: All the restrictions they have on their dietary restrictions, their fluid intake restrictions.
16:31
SPEAKER_01: And then the dialysis per se is just very draining to them and very hard on the body.
16:37
SPEAKER_01: Yeah.
16:38
SPEAKER_01: It's not visible.
16:39
SPEAKER_04: For me, I remember it as being like a very dark, like a very dark time.
16:44
SPEAKER_04: And by that, like most of the curtain had come down.
16:47
SPEAKER_04: It was so dark.
16:48
SPEAKER_04: And I was working full time while I was on dialysis because I was, as I mentioned, it was in my early 40s and I was working full time.
16:56
SPEAKER_04: And then three days a week, I'd go right from work into the hospital for dial treatment.
17:00
SPEAKER_04: And then I'd be home by 10 o'clock at night.
17:02
SPEAKER_04: Those were long days, and I'll work right up until my transplant.
17:05
SPEAKER_04: And I was manager in office, my staff.
17:09
SPEAKER_04: I didn't really want them to know.
17:10
SPEAKER_04: I didn't want anybody to know because I felt that was my job, the way people interacted with me.
17:15
SPEAKER_04: So there was also this pressure for me to hide what I was going through.
17:19
SPEAKER_04: And my boss knew about it, only really the only one.
17:22
SPEAKER_04: So that really added an element.
17:24
SPEAKER_04: And I do remember very vividly.
17:26
SPEAKER_04: So I'd have to leave early on uh the house stays from work.
17:30
SPEAKER_04: And I was the kind of person who stayed until 5:30, 6 at night.
17:32
SPEAKER_04: Like you just stayed in.
17:34
SPEAKER_04: And and I remember the lady in the office across from me, I was leaving at 4:30.
17:38
SPEAKER_04: And she was like, Wow, it must be really nice to leave early.
17:42
SPEAKER_04: And I was just like, 'cause it was a really important lesson to that.
17:45
SPEAKER_04: You really often don't understand what people are going out.
17:49
SPEAKER_04: And obviously, she didn't.
17:50
SPEAKER_04: As I went, as I mentioned, when I would drive up to dialysis, I just felt this blackness.
17:56
SPEAKER_04: There is this sense of total and utter vulnerability.
18:00
SPEAKER_04: You are not a master of your own life that you're now going in to be hooked up to the machine.
18:05
SPEAKER_04: And there's something tremendously hopeless.
18:08
SPEAKER_01: And what we see that there are a lot of people that are on dialysis that also unfortunately have to deal with mental health issues because the depression is very common in people who are on dialysis.
18:18
SPEAKER_01: So it's all of that, right?
18:20
SPEAKER_01: It's the whole package.
18:21
SPEAKER_01: We've talked a little bit about the obviously the shortcomings and that the how you were your case was managed in the healthcare system and so on.
18:29
SPEAKER_01: Let's talk about the positive.
18:31
SPEAKER_01: That led you to want to take action.
18:33
SPEAKER_01: And over time, you built a community through your leadership.
18:37
SPEAKER_01: Tell us a little bit about that.
18:38
SPEAKER_04: Well, so I think it is like making lemons out of lemonade.
18:42
SPEAKER_04: Like I think when you go through a traumatic experience like I did, and it was traumatic.
18:46
SPEAKER_04: Like I felt extremely alone.
18:48
SPEAKER_04: I was a young person in a room of very much older people always who were on dialysis.
18:54
SPEAKER_04: I felt extremely isolated.
18:56
SPEAKER_04: I didn't tell people around me, my work people, and I saw no one like me ever.
19:03
SPEAKER_04: Because of that, I think my experience was worse than it needed to be.
19:07
SPEAKER_04: And so when I looked back on what I had gone through, I knew that being able to talk to somebody experienced what I was experiencing as a mother who had, I even had my kids were still at home.
19:19
SPEAKER_04: I had a kid in still in high school.
19:22
SPEAKER_04: And it was just so important for me to be able to connect with, I didn't get to, but I just yearned to connect to somebody who was had been in my situation and got through it.
19:30
SPEAKER_04: It's crazy.
19:31
SPEAKER_04: And because Dean said you don't look sick.
19:33
SPEAKER_04: You people, you don't look sick, but you feel deathly.
19:37
SPEAKER_04: And I I just remember one time going to Toronto for a meeting with one of my colleagues, and he wanted to take the subway.
19:45
SPEAKER_04: Now you get terrible vertigo.
19:46
SPEAKER_04: And so I agreed to do the subway with him.
19:48
SPEAKER_04: Like he was very like, oh no, we gotta do the subway.
19:50
SPEAKER_04: So I just did the subway and it's jerking back and forth.
19:53
SPEAKER_04: And I literally had to sit down on the floor because there was no place to stand, was no place to sit.
20:00
SPEAKER_04: And I was gonna, I really felt very ill.
20:02
SPEAKER_04: And he was just like looking at me like, what are you doing?
20:06
SPEAKER_04: Because and once again, he had no idea of how sick I was.
20:10
SPEAKER_04: Like I didn't tell him.
20:10
SPEAKER_04: And you try to keep you try to manage through these things, but you don't in many cases.
20:15
SPEAKER_04: So I think for me, I had no choice but to keep going.
20:19
SPEAKER_04: I had to keep going.
20:20
SPEAKER_04: I did what I had.
20:21
SPEAKER_04: But if I had somebody to talk to, just anybody, you also don't want to burden your family.
20:25
SPEAKER_04: You gotta remember this.
20:26
SPEAKER_04: You do not want to burden your family, you do not want to burden your spouse with what you're dealing with either, or even your kids.
20:33
SPEAKER_04: That's a lot to have on your own shoulders.
20:35
SPEAKER_04: As Christine said, you're very stoic about it, right?
20:37
SPEAKER_04: Like you just push through.
20:39
SPEAKER_04: And so we talk about it as being denial, but in some ways it's just pushing through.
20:42
SPEAKER_04: In some ways, it's survival.
20:44
SPEAKER_04: I might call it survival rather than denial.
20:46
SPEAKER_04: You just push through.
20:46
SPEAKER_04: You do everything you can, but you're waiting for a system to meet your needs and to help you get to where you need to be.
20:52
SPEAKER_04: So for me, that peer support was really missing.
20:55
SPEAKER_04: I could have called, so there were pamphlets on the wall, and you could call a number.
20:59
SPEAKER_04: I didn't want to call a number and get a hold of a 70-year-old man.
21:04
SPEAKER_04: I saw them all the time in the clinic.
21:05
SPEAKER_04: And so for me, that just wasn't like I don't need to bring another stranger into my life who doesn't get me.
21:12
SPEAKER_04: So when we started talking about the transplant ambassador program, one of the keys to it was being able to connect people with people that were like them, people they could connect with, people that were similar in age, gender, culture, if that's what they wanted, kidney experiences.
21:26
SPEAKER_04: That makes such a big difference to a patient, to be able to talk to someone who's walked that path and got through it.
21:31
SPEAKER_04: And I never ever saw anybody my age who got through it.
21:34
SPEAKER_04: I do remember once being in the clinic, in the clinic prior to transplant, and I saw a woman coming in to the clinic to the desk, and she was like she had a like a work outfit, like she's clearly coming in from work and she was asking for a prescription renewal.
21:51
SPEAKER_04: And through the conversation that I overheard, I could tell that she'd had a transplant.
21:56
SPEAKER_04: And that seeing that person even Though I never talked to that person, like that was very powerful to me.
22:03
SPEAKER_04: Like that image of someone who was back at work, was doing well, was like that was extremely powerful.
22:09
SPEAKER_04: It's a message of hope.
22:10
SPEAKER_04: Yeah, I held on to that.
22:12
SPEAKER_04: A random, serendipitous thing, but I thought, like, people need that.
22:15
SPEAKER_04: It meant so much to me to see that and to say someone else has been where I am and got through.
22:21
SPEAKER_01: And by the way, the flip side of that is I can say it's the same for the donor.
22:26
SPEAKER_01: The transplant ambassador program didn't exist when I was being worked up to donate a kidney to my brother.
22:32
SPEAKER_01: I just happened to know two people in two different provinces, one in Ontario, one in Alberta, who had donated to one to a friend, the other one to a niece.
22:43
SPEAKER_01: And I got a chance to speak with them.
22:45
SPEAKER_01: And it's funny because after the transplant, the only thing I could remember, the only voice that kept coming back in my head was the voice of those two people and what they told me to keep in mind after the surgery.
22:58
SPEAKER_01: Forget about all the advice I was giving by healthcare professionals.
23:02
SPEAKER_01: And that's not what was ringing my ears all the time.
23:05
SPEAKER_01: It was the testimonial of those two individuals.
23:09
SPEAKER_01: And so, like you, Sue, I also benefited from that a little bit serendipitously, not through an organized program.
23:18
SPEAKER_01: And I can vouch for the fact that how powerful that can be.
23:21
SPEAKER_04: Yeah, it can change your entire mental perspective on whether or not you're gonna get through it, just seeing that per that example.
23:30
SPEAKER_04: So when we developed the transplant ambassador program, we wanted it to be quite visible.
23:34
SPEAKER_04: I should have worn it.
23:35
SPEAKER_04: I thought I was gonna wear it.
23:36
SPEAKER_04: We have these very bright green vests that say I'm a transplant recipient, I'm a kidney donor, asking about a transplant.
23:44
SPEAKER_04: And for me, because just seeing people in the clinic would have made all the difference.
23:49
SPEAKER_04: I didn't necessarily need to talk to someone, I needed to see these living examples of people who survived because you're around sick people constantly.
23:57
SPEAKER_04: And the sicker you get, the sicker the people are around you.
24:00
SPEAKER_04: Like it's it's a very depressing environment.
24:03
SPEAKER_04: But to be able to see people who who were positive and who had made it through is absolutely profound.
24:09
SPEAKER_04: And I think it's not an add-on to healthcare.
24:12
SPEAKER_04: It really should be a standard within healthcare that there is peer support and people who can provide that example and that hope to you.
24:18
SPEAKER_04: So I think the transmit ambassador program started as a bit of a research study out of London, and we started it back in 2016, developed it, uh we launched it in 2017, and we now have over 200 ambassadors across Ontario.
24:34
SPEAKER_04: We have some in the Atlantic provinces, and we are piloting with Christine's help in in Montreal this year as well.
24:41
SPEAKER_04: And I think through the Transplant Ambassador Program, we've had over 10,000 conversations with patients without their names and information, but just to track the barriers and the issues that they identified to us, which haven't really changed over the years.
24:55
SPEAKER_04: So it's really funny because you think I'm 16 years out of a transplant, my experiences should be so different than someone today.
25:02
SPEAKER_04: It's not.
25:03
SPEAKER_04: The problems that I had are the same problems that people are experiencing today.
25:07
SPEAKER_04: And so the TAP program, as much as it's also very important, it really adds an element to a patient's and a donor's care.
25:15
SPEAKER_04: It also gives us a real sense of what patients are really feeling today, what the issues are.
25:20
SPEAKER_04: Because of what we've learned through the transmet ambassador program and continue to learn, there were advocacy issues that came out of that quieter.
25:27
SPEAKER_04: Like, why is this happening to people?
25:28
SPEAKER_04: This seems to be an easy fix, some easy way to fix some of these things.
25:33
SPEAKER_04: And so then we wanted to start to advocate and around some of these issues.
25:37
SPEAKER_04: We did start an advocacy campaign around that we call transplant first, which is really to see more people getting transplanted.
25:43
SPEAKER_04: Most people, the how the system drives people toward a dialysis model, even a temporary dialysis model, instead of a transplant, instead of that preemptive model.
25:52
SPEAKER_04: And my story is an example of that.
25:54
SPEAKER_04: Like people weren't too worried about getting my donors worked up quickly so that I could have a preemptive transplant, that would have been far better.
26:01
SPEAKER_04: But dialysis is the most expensive treatment, right?
26:03
SPEAKER_04: It is the most expensive treatment that our system covers.
26:07
SPEAKER_01: So here's a fun fact for our listeners: dialysis costs$100,000 a year per patient.
26:15
SPEAKER_01: And when you consider uh how many people suffer from diabetes and hypertension, and how many of them end up in kidney failure.
26:24
SPEAKER_01: You can go to any dialysis unit.
26:26
SPEAKER_01: You will see a lot of beds there.
26:29
SPEAKER_01: And although, like Susan mentioned, there are now new therapies that are helping to delay the need for dialysis or a transplant for patients, which is excellent, so that they can keep their own kidneys functioning as long as possible.
26:44
SPEAKER_01: The reality is that there are a lot of people on dialysis.
26:47
SPEAKER_01: And then there's all the genetic conditions as well, like Sue's, that's a more rare one, but there's polycystic kidney disease.
26:54
SPEAKER_01: There's sometimes infections or autoimmune diseases that lead people in kidney failure.
26:59
SPEAKER_01: So all of these things, you have a lot of people,$100,000 a year per patient.
27:04
SPEAKER_01: Whereas a transplant could be, I think, a little bit less than$100,000 per for the surgery, and then some expects expenses post-surgery, but it's a no-brainer.
27:16
SPEAKER_01: It's a huge return on investment, not just for quality of life for patients, but even for the healthcare system.
27:23
SPEAKER_01: So that's what the Kidney Patient and Donor Alliance at Sue led.
27:27
SPEAKER_01: And now she's got little soul girls, I'll call them, across the country, and sending that message to all the powers that be that transplant first is the way to go, both for the patients as well as for the healthcare system.
27:42
SPEAKER_04: Yeah, because we know that most people, the vast majority of people on dialysis will not get a transplant, will never get a transplant.
27:49
SPEAKER_04: We know that from research that about five to six percent of patients on dialysis will get a transplant this year.
27:55
SPEAKER_04: And as Christine said at the beginning, people on dialysis are getting sicker and sicker, though they may be eligible when they first go on dialysis, they become ineligible the longer they're ineligible for transplant, the longer they're on dialysis.
28:07
SPEAKER_04: We want to see that 5% increased significantly.
28:10
SPEAKER_04: There's long been a bit of a myth that many people on dialysis aren't eligible for transplant.
28:16
SPEAKER_04: And this was actually one of the uh concerns that was expressed when we started the transplant ambassador program is not to build false hope amongst people who aren't eligible.
28:26
SPEAKER_04: Many people we talk to don't know if they're eligible.
28:29
SPEAKER_04: They don't know what the testing involves.
28:32
SPEAKER_04: And what we've also found out through research, really just in the last three or four years, is that based on lab data, at least 50% of patients on dialysis in Ontario are likely eligible.
28:43
SPEAKER_04: Now, that doesn't mean they've gone through all the tests, but it means based on lab data, there's no indication.
28:48
SPEAKER_01: So here's the other thing that we're hearing is that, okay, so you have maybe 50% of people that are on dialysis that are eligible for transplant, but there aren't enough kidneys out there.
28:59
SPEAKER_01: So how do you get the kidneys?
29:00
SPEAKER_01: So a lot of people talk about deceased donor kidney.
29:02
SPEAKER_01: And yes, it is important to register as an organ donor.
29:05
SPEAKER_01: I definitely will be a donor again, but under different circumstances.
29:09
SPEAKER_01: But what's really frustrating is when you have a motivated living donor who's coming forward and is getting discouraged by the whole process of getting through qualifying as a donor and give up.
29:25
SPEAKER_01: That is a shame.
29:28
SPEAKER_01: So this is fascinating.
29:29
SPEAKER_02: That five to six percent is so much lower than I would have guessed.
29:34
SPEAKER_02: And in your experience, what percentage of people for listeners are getting a donor from living donors, are getting a kidney from living donors.
29:44
SPEAKER_02: In Ontario, it's about a third of patients' kids.
29:46
SPEAKER_04: But here's the other thing like during COVID, there was a real problem with living donation.
29:51
SPEAKER_04: A lot of those transplants simply never happened because donor transplant is not deemed, it's deemed elective surgery, whereas deceased donation is not an elective surgery.
30:01
SPEAKER_04: So the deceased donations were happening, but the action were not.
30:06
SPEAKER_04: Interesting.
30:07
SPEAKER_04: That's another system of change, another advocacy point for us is that transplant is life-saving and that living donor kidney needs to happen.
30:15
SPEAKER_04: What you're doing is unfortunately, again, the data is showing that about 30% of patients who have a living donor being worked up are being offered a deceased donor kidney before their donor gets worked up.
30:26
SPEAKER_01: Actually, and I can speak to that as well, because my brother's preference was to get a deceased donor's kidney because he was very scared about putting his little sister in harm's way.
30:36
SPEAKER_01: And even though I got qualified and I got the green light to donate a month before the surgical date was given to me, two weeks before that date, my brother got a call for a deceased donor's kidney.
30:48
SPEAKER_01: And he was about to go in and get that kidney.
30:51
SPEAKER_01: And that was just the most frustrating thing.
30:55
SPEAKER_01: Like honestly, how did you react to that?
30:59
SPEAKER_01: Worst, one of the top five worst moments of my life.
31:03
SPEAKER_01: And I'm not kidding.
31:04
SPEAKER_01: And I've had a number of them.
31:05
SPEAKER_01: And what was going through your mind?
31:08
SPEAKER_01: Oh my God, so many things.
31:09
SPEAKER_01: It was just a huge low, a huge low.
31:13
SPEAKER_01: And I holed myself up in my room, just like my brother who got disqualified hold himself up in his house for three weeks.
31:20
SPEAKER_01: I was in my room, didn't want to talk to anybody.
31:22
SPEAKER_01: It was just a total feeling of rejection, actually.
31:25
SPEAKER_01: And then it flipped.
31:26
SPEAKER_01: But my brother, when he called me back because he said the doctors realized he has a living donor and that he should take my kidney instead.
31:32
SPEAKER_01: He said, What should I do?
31:33
SPEAKER_01: And I pretty much told him, I said, But you got a choice.
31:36
SPEAKER_01: You can either take my kidney.
31:38
SPEAKER_01: If you don't, I'm gonna consult with my husband and my kids, but in all likelihood, I'll donate it to the next person in line.
31:45
SPEAKER_01: So it's up to you.
31:46
SPEAKER_01: You can get it or somebody else will get it.
31:48
SPEAKER_01: You were ready to donate.
31:50
SPEAKER_01: You were all set up.
31:52
SPEAKER_01: And I think that was an aha moment for him because then he realized that this was as important to him as it was to me.
31:58
SPEAKER_01: It was truly a two-way street, not just a one-way thing.
32:03
SPEAKER_01: And that's something a lot of recipients don't understand.
32:07
SPEAKER_01: Sometimes the biggest barrier, sometimes, to the donor is the recipient themselves.
32:14
SPEAKER_01: When they're, let's say, a father, a loved one.
32:17
SPEAKER_01: Uh yeah.
32:19
SPEAKER_01: I'm seeing that very often as a translator ambassador.
32:22
SPEAKER_01: And I've been doing this since 2018.
32:24
SPEAKER_04: And what Christine just said about her brother not wanting to see her in harm's way is that's another myth that people have.
32:31
SPEAKER_04: The reason that you're going through tests as a donor is to ensure that your health will not be at risk, that you're not risking your life.
32:38
SPEAKER_04: But you need to make it clear that living donors are not risking their lives to become donors.
32:44
SPEAKER_04: The risk is the same as the anesthetic, the risk, it's the same as a gallbladder removal.
32:50
SPEAKER_04: Exactly.
32:50
SPEAKER_04: So people, and even in the press and in the media, there's a sense that I'm not diminishing it because people like Christine and others my donor are all generous people.
32:59
SPEAKER_04: I agree.
32:59
SPEAKER_01: I hate it when I see that in the newspapers.
33:01
SPEAKER_01: It drives me bananas.
33:03
SPEAKER_01: I always, and with regards to the risks of going through the surgery, I always said to my brother, listen, because he lives in Montreal, I live in Toronto, and I said, You have no problem inviting me over for the weekend and for me to drive on the 401 to go and visit you.
33:16
SPEAKER_01: And yet you have a problem with this.
33:17
SPEAKER_01: I stand a much higher risk of dying on the 401 going to Montreal to visit you than I do on the operating room table going through a transplant.
33:25
SPEAKER_01: So come on, let's get the facts right here.
33:28
SPEAKER_01: But we've got to wrap it up.
33:29
SPEAKER_01: Sue, tell us one thing I think it's important for you to mention.
33:32
SPEAKER_01: So you've been so busy with the Transplant Ambassador Program, with the Kidney Patient and Donor Alliance Canada, with our transplant first campaign.
33:40
SPEAKER_01: You've got another big project coming up.
33:43
SPEAKER_01: Tell us what it is, and then we'll wrap up with a fun fact.
33:46
SPEAKER_04: You started out by asking some of the myths, some of the things that people don't understand about kidney disease.
33:51
SPEAKER_04: And really, I would say it's everything.
33:53
SPEAKER_04: People don't understand anything about what their kidneys do, how important they are, how life-sustaining they are.
33:59
SPEAKER_04: And we want to get that information out there.
34:01
SPEAKER_04: So we want to start a podcast.
34:03
SPEAKER_04: It really is meant for our audience.
34:06
SPEAKER_04: It's meant for people with kidney disease and their caregivers and the people that love them, their families, potential donors, all of that, to really get the information out there and start to bust some of those myths around kidney disease and transplant.
34:20
SPEAKER_04: Transplant really restores patients to life.
34:22
SPEAKER_04: I have been so fortunate to have been have given my life back for the last 16 years.
34:27
SPEAKER_04: And I didn't at one point didn't feel that I would have that.
34:30
SPEAKER_04: You have donors like Christine who are super passionate about having done what they've done.
34:35
SPEAKER_04: You have people like me who've had a second chance at life, who want to pay it forward, who want to make a difference for others, and to be able to harness that power and get the information out to people, support people, and get the facts out to people.
34:48
SPEAKER_04: So, Sue, when can people expect to see this exciting podcast come out?
34:52
SPEAKER_02: Our plan is during kidney month, which is March.
34:54
SPEAKER_02: Susan, this has been amazing.
34:56
SPEAKER_02: And I've learned so much today from both of you.
34:59
SPEAKER_02: I want to say thank you for sharing this.
35:01
SPEAKER_02: You were also a phenomenal panelist, our patient engagement forum talking about data.
35:07
SPEAKER_02: So more, I look forward to more conversations to come because I know there's a lot more to learn.
35:11
SPEAKER_02: Yeah, there is.
35:11
SPEAKER_04: Thank you for having me.
35:12
SPEAKER_02: It's really wonderful to be able to talk about.
35:14
SPEAKER_01: So let's end on one quick fun fact.
35:17
SPEAKER_01: So you have twin grand granddaughters.
35:21
SPEAKER_01: Are they two girls?
35:22
SPEAKER_01: Yes, they are.
35:23
SPEAKER_01: Sweet granddaughters.
35:24
SPEAKER_04: And they've just turned two.
35:26
SPEAKER_01: So I'm assuming you're gonna have a really fun year.
35:29
SPEAKER_04: Monroe and Maya just turned two, and they're unbelievable, unbelievably fun.
35:35
SPEAKER_04: Right now, they have their favorite cupboard that they hide in and push each other in and out of.
35:40
SPEAKER_04: They're just are hilarious.
35:42
SPEAKER_04: They're just so much fun.
35:43
SPEAKER_01: And you're there to see them through all of this, which is amazing.
35:47
SPEAKER_01: Thanks to your sister-in-law.
35:49
SPEAKER_04: Thanks to my sister-in-law, absolutely.
35:51
SPEAKER_04: Yeah, and you'll never forget that, you know.
35:53
SPEAKER_04: Never forget that.
35:54
SPEAKER_04: Exactly.
35:55
SPEAKER_01: Thank you so much, Sue.
35:56
SPEAKER_01: It was wonderful having you with us this morning.
35:59
SPEAKER_01: And uh, we look forward to more conversations on your podcast.
36:03
SPEAKER_02: Yeah, thanks so much.
36:04
SPEAKER_02: Thank you, Sue.
36:06
SPEAKER_02: Thanks, Christine.
36:12
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