Krista Connor- Advocate and Kidney Transplant Recipient

Interviewed by Albi Angjeli

Krista Connor is a mother, wife, and high school teacher in the Niagara region. She inherited polycystic kidney disease, a genetic kidney illness, from her paternal side. She spent two and a half years on dialysis before she found a donor through the kidney exchange program run by the Canadian Blood Services. She received her transplant in 2016 and has been advocating and raising awareness for the donor shortage ever since.

To begin, can you tell me who you are now versus who you were before your transplant?

…I’m probably pretty much the same person as I was before my transplant and after because my life has been able to resume to what it was before. Before, I was just a mother of one son… After I found out I had renal disease, I had another child during that period of time. In terms of occupation, or who I am, I’m pretty much the same. I would [probably] say that… my outlook on life is much different, before and after. Obviously, I’m much more grateful for everything that has been bestowed… very grateful for life. And I have a very positive outlook on life and appreciate it a lot more. 

What do you most appreciate about organ donors?

…I have always been immersed in… the transplant community or I’ve always been aware. I think a lot of people… aren’t aware of transplants [because they] haven’t had anybody affected by a transplant, or somebody needing a transplant. [Therefore,] I don’t think you really realize what goes on out there…. Having an understanding, and then specifically being touched by a family who made a very difficult decision to… give up the organs of their loved one to save other people’s lives is super touching and emotional. It really changes your perspective of human connection- realizing how important it is that as humans, we support each other and just spread that love. …I [greatly] appreciate… that somebody was willing to do that for me and [individuals] are willing to do it for other people. So, I feel like I need to pay that forward.

When you say you have to “pay that forward,” does it feel like an obligation? 

It feels like my calling. I think as a teacher, it’s kind of a natural thing that I tried to make happen. There’s a variety of ways that I could pay that forward, I think that I’ve made the focus more on trying to pay for it by focusing on education, and seeing what I can do to help educate others about transplantation. It’s a gift that I can take forward. It feels like it’s like a burning thing that I need to do.

Can you tell me the story behind your renal history? What was the renal disease that you had? When and how did you find out you needed a transplant?

My father, who has passed away since then, had polycystic kidney disease. It is an autosomal dominant disorder, which means that I had a probability of inheriting the disease, 50% probability. When my dad was in his forties, he had his first transplant. So that’s probably when we were aware that you know, he was sick. I didn’t really realize until maybe I was in high school when we [had] our genetics units… [that there was a] chance that I could possibly have the disease. [Being older and beginning to think about his mother [(my grandmother)] having the disease, etc.] I started to realize that there was a probability, but the thing with polycystic kidney disease is that, at that time, there wasn’t too much preventively that you [could] do. It was just a progression; cysts form on the kidneys, which slowly replaced [their] natural function… Over time, you have renal failure. It’s not like a sudden thing, unlike the recessive version, which is a little bit earlier on, so my parents felt very strongly about not having us tested because back then there wasn’t genetic testing, but you could have an ultrasound to see if there was this stuff in the kidneys. They didn’t believe that it was really necessary to have my brother and me tested. My dad felt very strongly about waiting to see ,and just letting us live our lives as normally as possible for the time being. And obviously, there’d be indications if we did have kidney disease, so we would know, eventually: blood in the urine, a little bit of discomfort where your kidneys are, etc. I really didn’t know until [it was] for sure. I guess I always had a feeling that maybe there was a possibility. And there was actually one point in my like, teenage years that I was tempted to go get tested behind my parents’ backs, but I decided against it. I don’t even know why it’s one of those things that you debate or whatever, but I never ended up doing it. But after the birth of my first son in 2009, some of my blood work was off. I had really low hemoglobin and stuff. So then that’s when I found out that I actually have kidney disease. And obviously, that my son just was born at that time, in 2009. He’s 13 now and he could possibly have had the disease as well.

Were you on dialysis before your transplant?

Yep… When I found out in 2009, I was monitored by a nephrologist. I [had bloodwork done] like every three months…, really, it was just a waiting game to see like when I was in end-stage renal failure from looking at the percentage of kidney functions and stuff. [My kidney failure] actually didn’t happen until 2013. Four years later than I entered end-stage renal failure. 

Would you be able to please describe what it was like being on dialysis?

When a patient enters end-stage renal failure, [doctors begin to talk about] therapy options because obviously, dialysis is a therapy option and a transplant is a therapy option. So, right away, because I needed dialysis I started in the hospital. We live in Fort Erie, which is close to Niagara Falls. I did [dialysis] in the local Center in St. Catharines. At that point, I did it three days a week, for three and a half hours. I would actually go to the unit after work, and I would have dialysis and then go home. My father did dialysis at home, we call it home hemodialysis. I was on hemodialysis instead of peritoneal. Since my dad did home hemodialysis, I [kind of] knew what it was about. So [a] short time later, obviously I had to do dialysis in the unit for a little bit. They couldn’t send me home, there was a lot of training, but maybe within…one and a half [years], I actually trained for home. I did hemodialysis for two and a half years before I had my kidney transplant. At the same time, you’re on dialysis, and they put you on the waiting list. I had a variety of things going on [as] I was on dialysis and they had me on the deceased donation waiting list. I had a few family members that were worked up to see if they could be living donors for me. They started with my husband and [found] no matches. It’s quite a process [of] about six months to a year… to do the work up… Then they tried my mom and she was found to have something wrong with her so she couldn’t be a donor then my husband and I also did the parent exchange program. What they do is they put couples in kind of like proposed chains. So what could potentially happen is that they would look at everybody’s like, HLA (Human Leukocyte Antigen) to see if they were compatible. If, say, somebody else’s husband would donate to me, then my husband would donate to somebody else. [I’s] run through the Canadian Blood Services, surprisingly. I’m doing all of these things to try to get a transplant. But in the meantime, after two and a half years, I got the call for my kidney transplant from a deceased donor on January 3, 2016… It’s been about six years now. 

How was your quality of care during dialysis? Did you feel like you were being taken care of properly by the nurses and physicians?

Yes, absolutely. Oh, my gosh, I can’t say enough about the care that I was given anything I needed, you know, especially going to the hospital three days a week. I mean, you’re always around nurses. My daughter would come to visit me on dialysis. My care was excellent…even at home, nurses would come to visit my home technicians. The care was excellent. I can’t say enough about everybody [who’s] helped me along the way.

Do you think dialysis is a sustainable lifestyle? Do you think you could keep on doing it if you didn’t receive your transplant?

I mean, obviously, we do what we have to do. But, I know a lot of doctors say that being on dialysis is very hard on the heart, and on the body. I know, it did affect my life greatly. Working was a huge struggle I had. I had to go down to part-time, which…was still a struggle because dialysis makes you feel very tired. It’s hard to function. I was living with a PICC line. You know, like, it’s just hard. You have to be home to get supplies and you have to plan. It’s like having an extra job basically. I’m not complaining, because thank God for that option. Sustainable? Sure if you had to do it, I mean, you can make it work. But is it ideal? Definitely not. I always kind of looked at it like I just got to get through this. And hopefully one day I can have a transplant.

So as a teacher, do you think that organ donation is emphasized enough in the Ontario education curriculum, specifically?  If not, what changes would you have in mind? I know there’s a whole, grade 10 civics and careers course. And when I took that in high school, like that’s supposed to be like your common sense course, but not one time was transplant mentioned.

I agree. Well, it’s funny, you mentioned that because [of] my transplant nephrologist, Dr. Gangji. I know he does a lot of stuff at McMaster too, and he invited me to [participate] because he knew I was a high school teacher. I was passionate about advocacy and he invited me to be a part of a subcommittee for the Canadian Society of transplant. They have a subcommittee of individuals. … who meet with people from other provinces, and Dr. William Wall, who is a very famous transplant doctor. I think he’s based out of London Health Sciences [Centre]. He’s retired since but was a [great] transplant doctor, [and the]chair of the committee. I think my nephrologist is too. We meet all these doctors and very important people all around the province. I feel very out of place as a lowly teacher here, but the job is very important.

It’s amazing to be a part of this committee of doctors from all over the province. The name of our group is high school subcommittee-focused. I mean, our original focus, I think, was to see what we could do about the changes in curriculum…Dr. Wall petitioned and spoke to the government, etc. I feel that changes at the curriculum level are very hard to implement and change. That’s what we kind of found, however, I did propose many things that I could see as a teacher, where we could fit into the curriculum.

I’m a science teacher. [In] grade ten science because we do body systems [(circulatory, respiratory, and digestive)]. In the end, there’s one tiny little piece in the applied curriculum that talks about transplantation, not even in the academic curriculum, which you would have expected…To me, I’m like, “duh…” Of course, you’re talking about the systems of the body? Why wouldn’t you talk about transplantation? As a teacher, when I taught about biology, we do the renal system. Of course, like, I spend a whole day talking to the kids, but that’s because of my experiences. But also, at my school, [I talk for] any teacher that wants me to go in and talk. That’s the thing, the government lays out the curriculum, but it is very up to a teacher’s interpretation of how much [is taught]. I do feel like although the Ontario government might not be able to physically write something down on [transplantation] included in the curriculum guidelines. I feel that because there’s so much left for the teachers to interpret that they could naturally put stuff in there. 

So where do we come in? What we’re trying to do as a committee is to put resources together, available for teachers to know that it’s there, so they can expand on the curriculum and bring it into their lessons I think that’s how we have to address it. Because like, I agree, there really isn’t. You know we looked at the different courses, and I agree with you, I think [that the grade ten] civics and careers [course] would be an excellent [place to integrate transplantation awareness into the curriculum], especially talking about as your civic duty… The hard part is… [approaching…] the teachers because they’re the ones teaching the curriculum. That’s hard to grab, reaching out to everybody. It’s a dilemma, but it’s something that as a Canadian, as myself is something I really tried to work at; seeing how we can elicit some change, and get the word out..

How are you planning to kind of let all the teachers know about the importance of transplantation?

I know we talk about this quite a bit. And it’s unfortunate because the committee was kind of established, or I jumped on board right before COVID. Then so obviously, there was a little bit of a break, and we just have gotten together more recently. The Canadian Blood Services actually did a lot of work… Just recently, they put a beautiful website together. That includes all these different links. It’s kind of like a one-stop shop for teachers because that’s the hard part…; like in any profession, you have a limited time with your resources… So really, what we want… is a one-stop shop where any teacher can have any organ donation information in their hands. They did this for us. Now, what we need to do going forward is how do we get that information out? I have suggestions, but again, it’s really a matter of getting people to buy in…  I think that that’s our mission. I think we’re going to approach school boards, talk, and see who the best people to contact are, whether it be heads of departments of different teachers and things like that, but do it across Ontario. That’s the hard part; you’re looking at the whole province. Actually, the elementary curriculum has many more spots where it already is kind of implemented in their curriculum. I feel like maybe because there’s more time, there’s not that much pressure to get through that material as in high school. Kids who are in elementary will be like, well, we spent the last couple of days talking about organ donation, right. So it’s amazing. Yeah, it’s been done at the elementary level quite well, at some schools already. I think our focus really now is trying to tap those high schools in the province and see what we can do. And it’s been really rich to, talk to other individuals from other provinces to see what they’re doing because there are some provinces that are doing great things… It’s nice that we’re all sharing and trying to come together I love it. It’s a great, great opportunity.

What were the risks and benefits that you were made aware of before your transplant? Were there any risks and benefits that you found out after you had the transplant?

…I really have to say that the transplant team at St. Catherine’s Hospital that I dealt with was so great. They have a committee of members [(ex. renal transplant nurse, dietitian) [who] all met with me right after I started dialysis. Obviously, they had several meetings with me explaining my different options, explaining the benefits of both types of dialysis [hemodialysis vs peritoneal dialysis], explaining the risks, costs, and mental health issues…; they covered every base… They’re obviously… talking about money; can you afford it? The pills might cost you if you don’t have insurance, so I was fully aware of all those things. You know they like to say [that] transplant is just another therapy, it’s not a cure. They’re very careful about making sure you know, that everybody’s very knowledgeable. I knew the risks that it might not take sleepy kidneys, I knew all the risks, but I determined that the benefits far exceeded the risks. It’s actually humorous because [after] having my transplant for so long, I don’t even remember the days of dialysis… I’m actually thankful because those were hard days People forget that I have a kidney transplant because I just look normal. They always say like, “sure you’ve aged but you still look great! You don’t look like a sick person!” I’ve been able to resume a normal life… There are some minor things that I have to deal with that maybe the average individual doesn’t deal with. [For example], my kidney isn’t functioning as well as it was when I first had a transplant because I did have an episode of rejection… My energy levels are not great. I struggle with my hemoglobin [levels]. The [medications] give me some digestive problems, but really, nothing to complain about…Those are all things that could have happened for a variety of other reasons other than transplant… So, you know… obviously, there are some effects of the meds that I have to take. But, other than that… life is really good. Especially when you think back to the days of dialysis… My dad’s mother died from renal failure, and there wasn’t dialysis [or] transplant. I just have to think of her… She didn’t have that opportunity. My dad said [that] it was awful watching her die a slow and agonizing death. Just on the couch, just watching his mother die… It was long [and] drawn out..… Back then,…they did blood transfusions. That’s the only thing they could do back then… When [my dad’s mother] had [dialysis], it was at the cusp of when it became kind of a widespread thing. When you think of it that way, really, how can you complain?

What do you think we university and high school students can do to raise awareness about the dire need for organ donations and transplants?

…I think sometimes we think, and I feel like I know this from experience that we need to do some kind of grand gesture. Sometimes [I feel like] I have to have a transplant week at the school, and I have to run an event every single day, in order to be doing my job… My mission [is] to try to raise awareness, but I think the important thing is that… anybody who wants to be an advocate for transplantation, it doesn’t matter how big or small, as long as you do something (as small as having those [important] conversations with other people). Trying to just spread [information], because everybody’s busy. It’s whatever you can manage to do. I think the most effective strategies sometimes…, are when I go into the classroom and have smaller, [more] intimate groups. I sometimes find that [the bigger presentations]fall on deaf ears sometimes. I think having those honest conversations with people, trying to dispel myths, and reminding them… A lot of people just don’t think about transplantation. I think just having those conversations, reminding people that there’s a lot of people that still need organs and the importance [of registering] for organ donation. I think that’s the most important thing, however big or small.

Well, to conclude, is there anything else you would like to say regarding your experience with organ donation?

I think we covered the bases… I’m just happy that I can be an ambassador and spread the word to other people. I think I feel very privileged to have this role in life and [it] gives me a really satisfying purpose in my life. And I love that.