Laura shares about her journey to transplant, healing with her family, and how writing grounded her

Laura realigned her life after her diagnosis of Primary Sclerosing Cholangitis. She refocused on family, friends, fun and her dream of becoming an author. Her writing served many purposes at different times, including as long letters to her three daughters, to escape from illness and as a tool for healing. Post-liver transplant, she and her family have focused on healing from the journey to and through transplant and intentionally creating new joyful memories together. You can find Laura’s memoirs, fiction and cookbook at her website: www.laurabradbury.com

Photo Credit: Daisy Orser

Share your story at the intersection of PSC and parenting at pscmami.com/stories

Transcript

Laura  00:01 The assumption that you're going to be around for your child and that you never even question that, that all of a sudden becomes not as certain.

PSC Mami- Monika  00:10 Welcome to PSC Mami where we share stories at the intersection of PSC and parenthood, PSC or primary sclerosing cholangitis is an autoimmune disease where the immune system gets the wrong message to attack its own bile ducts. Over time, the inflammation can leave the bile ducts scarred and blocked, which could eventually shut down the liver which surprise is in charge of over 300 functions in the human body. To be diagnosed with this rare, incurable, unpredictable disease can rewrite anyone's life journey including their vision and experience of parenthood. A reminder that all stories and information shared are personal experiences and options and should not be used as the basis to treat yourself or others. Please consult your personal medical team.

PSC Mami- Monika  01:09 Today, I am so excited that we have Laura. She comes to us from Victoria, Canada and she lives there with her spouse and her youngest daughters. Her two oldest are off at college. Welcome, welcome.

Laura  01:26 Thank you for having me. I'm so excited to be here.

PSC Mami- Monika  01:29 Tell us a little bit about your PSC journey.

Laura  01:32 Well, I got the PSC diagnosis...for me was very sudden, my husband and I were getting... we had just moved to Victoria, back to Victoria from France, where we'd been living for five years. And where I'd had our third daughter in France. We were doing life insurance testing because we wanted to get disability insurance and up our life insurance because we had a third child now. And a nurse came to the house and took our our blood and and everything and then I totally wasn't expecting there to be any problem whatsoever because we were really healthy. We were running. We were juicing. We were growing kale in our back garden and everything. Then a week later, I got a phone call from the insurance company saying, "There's something really wrong with your bloodwork. You need to go and see your doctor, your liver numbers are sky high." I was actually, some people it takes them a very long time to be diagnosed. But I was had a good gastroenterologist here. And I was diagnosed probably with a liver biopsy and an MRI within about two months, I would say. And yeah, it was really a completely, I just felt like my life had completely turned on its axis in the 24 hours that I got diagnosed, I'd never even heard of PSC before. I thought I was trucking along as a completely healthy person, that besides ulcerative colitis that was really well controlled with very sort of mild medication. I didn't consider myself as somebody who had any health problems. I came from a family of people that had never suffered any serious health problems. So it was a complete shock to me and the diagnosis that there was no treatment or cure that basically I just had to wait to get sick enough to hopefully get a transplant. I found that so frustrating and devastating to know that I was just going to be steadily going downhill. And then I might die before getting to a transplant or that the transplant process itself was extremely difficult to go through. And at the time when I was diagnosed, it was May 1st 2012. I remember that date like it's great on my heart. My three daughters were 4, 10 and 12. So when I was diagnosed,  I had three young children, young, busy children, a busy life, just move back to Victoria, which was a good thing because my whole family was here. So in retrospect, that ended up being very good timing, but it was extremely difficult. Yeah. And then I had my transplant in 2017. I did get progressively sicker and was hospitalized. My particular case of PSC, I was in and out of the hospital a lot with cholangitis infections. Eventually I had my my transplant in Edmonton and a friend of mine stepped forward and she had a living donor transplant and she donated the right lobe of her liver to me in 2017. So yeah, I can't believe that. That date too, is still kind of engraved on my brain in my heart. And I can't believe that, you know, time has gone by since then.

PSC Mami- Monika  04:38 Can you go back to the moment where you found out about PSC and you say you've never heard of it before? Out of the blue? You know, unfortunately, we've heard a few of these stories of life insurance digging up these diagnoses. Where did you go from there? What was that process like for you, holding that new information.

Laura  05:04 I was extremely frustrated. I remember sitting there, and the doctor, in the doctor's office and them telling me. And of course, just the personality I am, my immediate reaction was I wanted to be able to do something that I wanted to either self heal or go towards a treatment. But the idea that I just had to wait somewhat passively in order to get sicker and then eventually get to a transplant as a mother of three young children. That felt almost unthinkable to me. And that burden felt so so heavy, that my entire future was changed. I took away that ability to be really proactive with this health condition, I found it incredibly frustrating, I really was going through an extreme amount of grief, like I really felt like my life just completely changed that day. And everything just felt so much heavier. And I felt a real grief of losing that carefree approach you have to life before you've been diagnosed with a very serious disease. And then of course, I had a lot of practical worries about how I was going to move forward if I was in ill health with my daughters. How I was going to be able to be the type of mother that I had been, and how I wanted to be. So it was a very, very difficult time. And then health wise to there was a few things that kind of started to connect together after I was diagnosed with PSC. They actually think that I had it probably from around the time that I had my first daughter, who was 12 when I was diagnosed, because after that pregnancy, I had really weird liver numbers. And I actually had some imaging and stuff at the time. And it was sort of non-conclusive. They thought maybe it was NASH, the fatty liver disease, they weren't really sure what it was, you know, they feel pretty safe and saying that I actually did have PSC, probably for about 15 years before being diagnosed.

PSC Mami- Monika  07:04 Oh, wow.

Laura  07:04 Yeah. So but at the same time, it was sort of slow moving at that point. And I had never felt very sick. Off and on, I felt a bit off, but nothing specific enough to really to really pinpoint, and so I had basically three pregnancies with PSC without realizing that I had PSC.

PSC Mami- Monika  07:23

How were those pregnancies? I know autoimmune research tells us that a third of folks just truck on the same they don't notice anything . A third have symptoms and disease get better. And a third have symptoms and disease gets worse.  Where were you at within those categories?

Laura  07:40 I would say the first two pregnancies and they were very close together. They were 21 months apart the my two older girls, and those were both presented as very normal pregnancies. And I think for those two, I actually probably was on the side of things getting better. I felt quite healthy. And I didn't have any complications. I did end up getting Cesareans but that's just for high blood pressure and the breech baby so those are completely unrelated to PSC. So in both of those instances, I would definitely would say was when I stayed healthy, I didn't have, didn't suspect any problems at all during those pregnancies. With my third baby that I had in France, I actually got quite sick when I was pregnant with her. My ulcerative colitis really flared. And I was losing a ton of weight while I was pregnant, and they kind of couldn't figure out what was going on at that time. They just thought it was the ulcerative colitis they didn't make the connection that it could be PSC and so without pregnancy, I definitely had a tough time particularly with the ulcerative colitis and she was a quite a low birth weight compared to her sister. She was five pounds and they were they were like seven and a half pounds each. Yeah, I definitely definitely struggled more during that pregnancy. I was older too. I was 27 and 29 for my first two and then 35 for my third so but yeah, it's funny to kind of went one way was the first two and then another way with the third.

PSC Mami- Monika  09:06 It must have been interesting now to have this information and then retrospectively look back and think what if?

Laura  09:13 Yeah, you start to go backwards and you think, oh, cuz I did have appointments with my GI about these weird liver numbers like, you know, a long, long time before and they weren't that high. So they were kind of non conclusive, but then once I got the PSC diagnosis, they're all like, oh, that's what it was. But I hope it's encouraging to women who are diagnosed earlier in the game to that, you know, it can be quite indolent in the beginning. PSC, it can take a long time for if you're diagnosed really early on, like could have been diagnosed really early on if they'd done a biopsy but they didn't. You can go quite a long time. So in some cases, you know, it's completely different from person to person, case to case, but you can go quite a long time without you know, any major symptoms becoming a problem?

PSC Mami- Monika  10:03 And once you had the diagnosis, so you, you reference kind of this shift in your mindset and your perspective, you did have parenting before, you know, you had PSC. Was there anything that shifted for you as a mom? When you once you had that diagnosis?

Laura  10:22 Yeah, I would say it shifted. So, so much of my perspective on parenthood, you know, with that sort of diagnosis, you don't know how long the assumption that you're going to be around for your child, and that you never even question that, that all of a sudden becomes not as certain and not just so much mortality, but also, you know, you don't know how long you're going to be healthy enough to be able to parent in the same way you parent. And so for me, like, whereas I would go to the kids soccer games, and on Saturdays I would be like, "Oh my god, I like have to get up at eight o'clock to go to the kids soccer game," I'd be like, "Oh, I get to go to my kids soccer game", I find there is a lot of paradox in parenting with PSC, on one hand, the emotional drain and the physical drain of PSC made it harder to parent. But at the same time, I had so much more appreciation of the privilege of being a parent. And things that I would have looked at as sort of a a burden or drag or stress or something, it totally switched on its head the way that I that I perceived these things. And I really approached it that I just wanted to bank every good moment with my girls, like be really present for them, go to every game, go to every thing that I could possibly go to. Yeah, it made me realize kind of what a miracle and what a privilege it was to, to be in this position and be able to parent literally in a 24 hour period of the diagnosis that changed from one second to the next.

PSC Mami- Monika  11:51 And are there any examples of how that played out in the day to day?

Laura  11:56 I would be less worried about...I started writing too after I was diagnosed, and I left a job that I was really unhappy doing all of these things that had kind of got my life out of balance, I just thought you know, I have, I don't know how long I'm going to be here for I don't know what state I'm going to be. So I'm just not going to do this stuff anymore. That is draining on me. And I'm going to do what I really want to do. And the writing gave a lot more flexibility to be with my kids to go to school events, to go to sports events, to just be more present with them and actually taking time to sit and talk with them day to day to spend time with them to have conversations with them to do activities with them. And it was like I said, it's paradoxical, because at the same time, you're really emotionally drained and tired, and everything. So it makes the PSC journey, heavier in a way to have kids that you're worried about, you know, not being able to follow through on motherhood, but at the same time, those kids get up every morning, and they need you every morning. And they have stuff going on. And they have a life outside of your disease and your health problems. And that was just a saving grace so many times, like so many mornings when I felt like I couldn't get out of bed because I was depressed because I was sad because I was feeling terrible. They would need to go to x, y or zed place, and I would get up and I would drive them and in doing that, and in parenting, it really helped me get myself out of my own head. Which really helped this par...I find it so paradoxical, you know, parenting with PSC, it makes it heavier and lighter at the same time.

PSC Mami- Monika  13:38 Absolutely. I can definitely relate to that. And you mentioned that not only in your parenting, but it sounds like your whole life got shaken by this diagnosis.

Laura  13:46 Definitely.

PSC Mami- Monika  13:47 We've talked about I'm a huge fan of your books. I've read all of them. I think even the the Preschool Philosophy one, which I absolutely love, because I read it when my son was in preschool. Did your diagnosis influence the genre that you went into? Because you started in memoir is my understanding.

Laura  14:04 Yes. And I did, I literally woke up the I'd always wanted to write, but my life was so kind of consumed with shoulds like, you know, I shouldn't be writing. It's not a practical career. I should be working for the family company, because that's what I'm expected to do. I should be doing this. I should be doing that. Literally in that 24 hours of the diagnosis. I woke up the next morning I said, you know, I'm going to start writing like now I'm not going to wait. And I did and I started writing memoir and my girls were the motivation behind that because for one thing I wanted to start writing something I wanted to write, finish and share something come hell or high water and then memoir I really had this really deep set fear of, of dying and my girls not knowing my story, not knowing where they came from, my story with my husband. So in a way it was very extended letters to my daughters that I felt like I was leaving something for them. So that's why I write fiction and memoir now. But I started with memoir. And that's, that was really my motivation for starting with memoir. And I wrote one. And then I realized that that wasn't the whole story. So then I wrote more. So far, there's eight and that series, and I'm writing a ninth too, soon.

PSC Mami- Monika  14:48 Yeeeaaay!

Laura  15:12 So it's really the story of them and their life and where they came from, and me and my life and my husband and the lessons that I've learned along the way that I wanted to impart with them. And so far, none of them have read it yet, like, my husband, he hasn't read them, like, that's fine. They're there, if you know if...they're there, if you ever want to read that.  I remember the when I was getting interviewed by the social worker for the transplant, one thing they really wanted, I think all of us transplantees to do is to write a letter to our families in case we didn't make it through the the process. And I said, "Well, I've kind of written like, six books." She said well, aren't you that type A personality?

PSC Mami- Monika  16:04 You were like check!

Laura  16:07 That's done, I could say that. So. So yeah, it did really, my girls really did influence my choice. And now that I've been through the transplant, and things are still uncertain post transplant, but maybe less uncertain. So now I'm going into fiction. But I still, you know, I still do write those memoirs, that series isn't done yet. So and I still have the sense of peace in my heart that I then I've written them.

PSC Mami- Monika  16:32 That's beautiful. I love how everyone sort of finds a way to communicate with their children in a way that feels good for them. And if anyone hasn't read them, it's a marvelous series.

Laura  16:44 Thank you.

PSC Mami- Monika  16:45 Every time we have a new book come out, I just the day it comes out. I'm like, Alright, download. I am gettin it.

Laura  16:51Yeah, I'm actually gonna write the next one I'm going to write is about the birth of my third daughter in France. And just what that, because I had my first two in Canada, and j ust what that whole process was like, and some of the PSC that was starting then and struggling with that. And, yeah,

PSC Mami- Monika  17:07 Wonderful.

Laura  17:08 Yeah.

PSC Mami- Monika  17:09 And when you were giving your overview, you said, "and then I got sicker, and I had a transplant" and knowing PSC, and knowing the journey to transplant, that statement contains a lot, right?

Laura  17:22 It does.

PSC Mami- Monika  17:22 A lot of story

Laura  17:23 It does.

Laura  17:24 What was it like as a mom, as a wife, as a family member in that time? What did get sicker mean, in your case?

Laura  17:33 Well, it was. So it was a five year period for me between diagnosis in 2012, and then my transplant in 2017. And I'm going to be brutal. It was really, really hard. Within about a year after my diagnosis, I got my first really bad cholangitis infection, and actually passed out in the middle of the street and had to be taken to the hospital on an ambulance. And I was in the hospital for about two weeks on IV antibiotics and lots of imaging. And from that time, up until my transplant, I was in and out of the hospital. Probably every two months, I would have a week, a 10-day stint in the hospital, I also was having to go back even when I wasn't hospitalized. There's lots of times where I'd have to go back every morning to the outpatient clinic to get IV antibiotics. So I had really almost sort of impossible to treat cholangitis with sepsis, I was always sort of borderline septic. So I felt really, really terrible. And it was just so hard to see my kids have to deal with that have to I was very unsure about them coming to visit me at the hospital. Like for them, I just kind of wanted them to continue their life of you know, continue their sports and their friends. And I was very lucky, my husband really was a rock like he just would. He's quite, you know, domestic, and he would just pick up where I left off. He has no problem cooking, cleaning, doing doing anything like that. And so he would just seamlessly sort of pick up so I was very, very fortunate on that front.

Laura  19:05 But emotionally it was so hard to be in the hospital and to feel like I was letting my kids down by not being present for them by not being able to attend certain events. And I just hated that because of me they had this worry. And they had the stigma of their mother being sick and in the hospital and I was getting progressively sicker and they could see that you know, often they would come home from school and I would be on the couch sort of battling a cholangitis infection wondering should I? When should I go to the hospital? You know, they come home from school and I'd be on the couch and shivering with like a thermometer, and it was just really really hard. It was already physically hard, mentally hard. But the idea that I was it was affecting my children's life. That really I never found a way to really reconcile that or to feel okay about that. I still carry a lot of grief around on that, and then when I did finally get to my transplant, what proceeded that was like, oh, at least eight months of trying to find living donors and trying to get approved in Edmonton. And then the summer before my transplant BC transplant society here for political reasons, because they were worried about their funding, they pulled my funding. So they were saying, you're going to have to start over from square one again, here in Vancouver, that don't do live transplants. And so it was an incredibly stressful time. And my two oldest ones, we actually had them go to France to see with their family there because it was so stressful and so agonizing. And it's really hard to hide that from your child. And even though you do try to hide it, you don't. Children are smart, they pick up on what's going on, you know, I hated that.

Laura  20:53 And to be honest, like my kids are still dealing with, you know, I've paid for a lot of therapy for them, for all of us, like they're still dealing with some some issues that have come from from being at that time. And when I did go to Edmonton for my transplant, that's an hour and a half plane ride from where we live here in Victoria. I had to be gone for three months I had was a month in the hospital post transplant, and then two months to make sure everything was stable, and everything was set up for me to come back home again.

PSC Mami- Monika  21:22 So how old were they at that point?

Laura  21:25 Nine, 17, 15. It was really tough to leave them for three months. And also, the actual act of saying goodbye to them before I left and got on the plane was the hardest thing I ever had to do, it was horrible.

PSC Mami- Monika  21:39 Yeah. I can imagine.

PSC Mami- Monika  21:40 Having to say goodbye to your child when you're going into. They were old enough that I had to keep it together. And yeah, it was. It's really brutal. But they did come visit me as soon as I got out of the hospital. They came for like a weekend. And then we sort of started healing from there. But it's definitely been. It's a hard road. And yeah, as much as I tried to lessen the trauma for them, and to not have them sort of having to face at all, let's not have it in front of their face all the time. They're still you know, kids or kids or part of the family. They're not stupid, they pick up on what's going on. So they're they're still dealing with that in their own ways. And I tried to support them as much as I can, with good therapists and you know, talking openly about things, but it's it's complicated. It's definitely complicated. And I think a lot of that depends on the age of your children at the time that you're sick and going through transplant and stuff. I'm especially for younger, so that Well, I don't know, it's hard in any stage. It's hard. But I wish that they'd been able to forget it, you know, you just want to kind of wave a magic wand and and forget it. So,

PSC Mami- Monika  22:46 Going back to when you started to get sick, what were the conversations that you had with them? How would you talk to them? What was that process like for you to figure out different people come to that in different ways, and approach that really differently with kids?

Laura  23:01 Yeah. And we also had a big difference in age between the two older ones who were sort of preteens, teens, and had a certain level of comprehension. And then my four year old who, you know, they can only take in so much information and they can only understand things to a certain degree. So it was really difficult to try to adapt the information and I was honest with them about what I was diagnosed with that I would probably need a transplant. But at the same time with PSC it vary so much from person to person, that like I have an aunt who has PSC and hers is extremely indolent and she never has any issues with it. My next door neighbor, actually when I was diagnosed has PSC, and

PSC Mami- Monika  23:42 Oh wow.

Laura  23:43 and hers is small duct PSC. hers is very individual never need a transplant. And so it was really hard, or they all wanted answers of when is the transplant going to happen? When are you going to get sick? And those are answers with PSC that most of us simply don't have. And so I gave them the information that I had that tried to kind of moderate it and saying, you know, we don't know which way it's gonna go. It could be really indolent, I might not need a transplant, you know, we just don't know. But just the level of uncertainty around a PSC diagnosis. It made it a difficult thing to talk to a child about because as adults, it's hard to wrap our minds around the fact that we don't have any, it's not like say a breast cancer diagnosis where you know, you figure, not say that's any easier, but you, you figure out what kind you have, you figure out if you have surgery, you have chemo, and it all happens quite rapidly. Whereas PSC is a waiting game, because they all felt very frustrated with this, this waiting aspect of it and this uncertainty aspect of it and unfortunately, I didn't have any piece of information or didn't have anything I could really say that would change that and they were very emotional conversations. I had to really try to tamp down my emotion. So I didn't get overly emotional about it even at a time when it was all feeling so fresh and so heavy.

Laura  25:06 And so it was, yeah, it was they were they were very difficult situations. And my four year old only understood it sort of very, oh, mum's sick, she might need a new liver. You know, boppity bop, bop bop. And I thought I was grateful for that. But you know, I think now that she's 13, she's saying, you know, she was destabilized by that period, you know, she felt she needed to be cheery all the time. My middle one felt like she needed to be kind of making everything okay, all the time, which put a big burden on her. And then my oldest, sort of just tried to, to sort of in denial and try to avoid it by being social and going out a lot, and stuff like that. So they each dealt with it in their own way. But it is hard to talk. You need to talk to your children about it. But at the same time, it's difficult, because it's all so unreconcilable in our, in my own head. It was very unreconcilable in my own head. And it was an ongoing process. It wasn't just one conversation. It was a, you know, ongoing series of conversations as circumstances changed. So, yeah,

PSC Mami- Monika  26:10 And it's so hard like, we can't, we can't control our disease, and we can't control how our children react to it.

Laura  26:17 Yes, yeah,

PSC Mami- Monika  26:18 I had that moment. My son's a little clown. And one day I was crying, and he started making faces, and he started to stop and be like, you are not in charge of my emotions.

Laura  26:28 Yeah,

PSC Mami- Monika  26:28 it's okay.

Laura  26:29 Yeah,

PSC Mami- Monika  26:29 I can be sad, it's okay, this is not your job. All the things I want you to worry about. This is not what I want you to worry about. But we can't control other people worry about, right?

Laura  26:39 No, and even with three children, they all dealt with it in completely different ways. Just you know. That's what amazed me too, is they all internalized it and then dealt with it in very, in very different ways. So you figure out what one child one child is reacting, but then it's different with with each kid, there's no, there's no children that do react exactly the same way. So yeah, and it is really important for them, the ones that sort of feel like they, their instinct is to try to control things instead of escape. The ones who, who try to control things, they have a very heavy burden, because they're trying to control and make something better that it's just doesn't fit into those parameters at all. And it's it's a very heavy burden for the for the child, even though you try to lessen it, you know, certain personalities, types are innate, and certain reflexes are innate. And, yeah, yeah.

PSC Mami- Monika  27:36 Well, it sounds like you're doing what you can. Now the healing process for them and for you.

Laura  27:40 Yeah, yeah, I think with us PSC mothers, I mean, I don't know how you found but this enormous amount of guilt around that. That's a big bag of guilt to sort of carrying around and, and self blame and stuff. But like you said, it's completely out of our control. If we could take it away with a snap of our fingers. We would, you know, I always say there's no, people are like, I don't know, I there's no way I could deal with that. There's no way I could, like cope with that with a diagnosis or transplant. I'm like you would, because there's no off ramp, like.

PSC Mami- Monika  28:16 Mmmhmm

Laura  28:16 There is no off ramp.

PSC Mami- Monika  28:18 Exactly. There is no choice.

Laura  28:22 So you'd be amazed what you can deal with, when, when when you

PSC Mami- Monika  28:26 I have felt the same.

Laura  28:28 Yeah. And I think we do have to, you know, give ourselves a bit of grace, and that we dealt with a very, that we're dealing dealing or dealt with a very difficult situation. And we just sometimes just doing your best is okay. You know, I think that's really important. I'm still working on that, trying to convince myself with that and not feel too too guilty. But that's all we can do. Really,

Laura  28:54 You know, most of people who've talked about living donor transplants on this podcast have been in the States, how is the process inCanada? What does that look like? And how is that for you?

Laura  29:06 Well, one thing is in Canada, we're very lucky, we don't have to worry about [health] insurance and everything. So for both the donor and the recipient, it's 100% paid by the, by the universal health care, so even transplant, medication, all of that stuff. So that made it easier for me to find prospective donors but at the same time,  it is really difficult because of my type of PSC. It's highly genetic, because my aunt has it and my family has a whole host of autoimmune problems. And so my PSC specialist really didn't want anyone who was blood related to me to donate. And actually in my family, there wasn't a lot of people with the same blood type. My husband has a different blood type. And so we had to start looking for a non-family donor. Very early in the process. I was always He's really open about eventually possibly needing a donor so that people kind of have that seed was planted. And so if there was any sort of exceptional person that might consider it that they would have time to sort of think about it. So I was always very open about the disease and about the transplant to try to educate people about the transplant process. And I actually had three donors like two donors tested before the third one was a really good high school friend of mine, my friend Gord who's just awesome, he came forward right away. He checked out, but his anatomy didn't check out like his bile ducts didn't line up to my bile ducts. And they said it wouldn't, wouldn't be probably a successful surgery. And then I had another person go through the process, she was approved, but then at the last minute, she decided she didn't feel like she could do it. Like she just felt freaked out at the last minute. And you know, and I totally respect that that has to be part of the process, but it was emotionally very difficult for her as much as for me so at that time, I was very, very sick, you know, I could feel organ shutting down and, and sleeping all day, basically. And, and I was very ill. And I didn't know if I had the time to actually start the process again. And I get a third donor over the same time that the the ability to withdraw at any point, I totally, totally respect that.

Laura  31:27 So and then a third donor was actually my daughter, Clementine's Sparks leader who like brownies is, so I never would have met her if it wasn't for my youngest daughter, my donor. So that's pretty, pretty neat. So she's just a, Nyssa. She's just an exceptional person. She's one of those people who when somebody needs help, she's not like, oh, somebody should help that person. She's like, why don't I help that person and that's just the way she lives her life. And, and she went to Edmonton. She was tested, she was the perfect donor. And she phoned me. And she said, "So you ready to come to Edmonton next week for a liver." So she was she was, and then a week later, not even a week later, six days later, we were in the OR. So

PSC Mami- Monika  32:17 Incredible.

Laura  32:18 Incredible. So she was also from Victoria. So she had to leave her children fly to Edmonton and get it all done. But I just, I'll never be able to, how do you ever repay something like that? like, it's just such an amazing gift. Every  bonus day that I get is just for her to go through that. It's just extraordinary. And she had to she has two kids of her own, who were quite young. When she did that. I had her, a couple of my other PSC friends who had had live donors, I put Nyssa in contact with their live donors so that she could really get a perspe... unbiased perspective of what the whole process was and what it entailed. And she was in the hospital for about 10 days after the transplant. And then she flew back two weeks after the transplant to Victoria and recouped here. So, yeah, good friends. And it's an extraordinary that it was another mother who came in take my life, basically. And a lot of her reasoning was that this was happening to me and I had children and I that's what I would want somebody to do for me. So, you know, the mother kinship was a big part of of that transplant.

Laura  33:27 So yeah, another thing. I went into quite severe rejection, probably about five days after the transplant, and I had it was treated, but it was treated with pretty heavy duty stuff. And one of the doctors said, you know, one of the issues with you guys is that I've had three kids, she said to kids, it's all the DNA because you take on the DNA of your children. It's all this DNA kind of, you know, kind of clashing. So, but once we got that figured out, it was it was great. So yeah, and I recovered from that surgery. Um, so yeah, yeah. So yeah, it's another mother who saved me. And I don't think that this coincidence is through my youngest daughter that I met her. So it's a pretty extraordinary but it's a very emotional experience. And I felt guilt that she was putting this on the line for in regards to her children. But yeah, I, what do you say? What can you there's no way you can ever repay such a gift. I'm just so grateful every day. She really is an extraordinary person.

PSC Mami- Monika  34:28 Thank you to her.

Laura  34:30 Yes,

PSC Mami- Monika  34:30 Because you are here with us.

Laura  34:32 And she gave me a good liver because it's still going strong like this. You know, it's almost getting close to Well, yeah, almost like we're coming on to five years. So yeah,

PSC Mami- Monika  34:43 We were we were transplanted not too long apart from each other.

Laura  34:48 Yeah. Almost five years. You were 2017?

PSC Mami- Monika  34:53 Yeah, for me, it's February 2017.

Laura  34:56 Okay, and I was March

Laura  34:59 Yep. Oh, because you know the people who transplanted around you within the PSC community, it's like your transplant siblings. It's like you go through this journey and you look at each other's pages and your Caring Bridge and your Facebook pages and you're kind of rooting each other on.

Laura  35:14 Totally. Oh, no, so much so. like, you know, Nate Baggett, too. He's, he's, uh, him and I were less than 24 hours apart. And we both had living donor.

PSC Mami- Monika  35:23 Yeah, you have a special connection with the people who are transplanted around you.

Laura  35:28 You really do. No one really gets what you are going through and I find just with the PSc community at large. That's one thing I did find PSC Partners, probably within like a week of being diagnosed. And and that was just huge. For me. That's how I found my specialist in Calgary. That's to be able to connect with other PSC people and other mothers, you know, very quickly, you kind of build up your support network of, of people, and they really do feel like family very much like family, because nobody can really understand what, what we've been through than us.

PSC Mami- Monika  36:03 Yep definitely. And after transplant, how have have things shifted? How has it been with your children with your family?

Laura  36:14 It was interesting, the the year post transplant, we made a lot of changes, like we lived in a big house that we had built, with a big mortgage. And we sold that actually, so that we had more time, we weren't under such financial constraints, and that we have more time to spend time with our kids and travel with our kids and had money to fund their education. We just felt as a family, we all really needed a fresh start, there was a lot of trauma that had happened in that old house. And we just really all wanted a fresh start. So I think that was really good. It did take time, though, like the anger that my kids had, towards me being sick. And it wasn't so much anger towards me as it was the situation. A lot of that came out like a lot of the and also my middle daughter, she kind of missed the chance to do that teenage rebellion because I was really sick. And she really felt like she needed to make everything okay. And so she missed though that sort of teenage rebellion. So it came out later. And it was a lot of trying to get our footing in this sort of fragile, new new world. And, and, you know, I was trying to get my footing as a recently transplanted patient trying to get my medication sorted, trying to figure out, I think you have a lot of things that need to be resolved in your head and everything feels a little bit touch and go at the beginning. But as soon as like I was a year out, and I kind of got the all clear after a year, we really started traveling a ton.

Laura  37:52 Like as a family, we really did tons and tons of, of trips together, which was really a great sort of bonding experience. We I think we really went through that sort of healing together. We're all doing it individually, but we're doing it together as well. And we really try to spend time together the five of us, like we're going to Montreal on Thursday, the five of us to spend, I realized how precious it is quickly as the two older ones get older and are university to really spend time as a family talking and processing. I think that's really the best kind of cure, not cure so much. But the best way of moving forward after this, after this kind of trauma is for one thing set up therapy for everybody outside of the family. So they have somebody objective they can talk to without ever feeling guilty that they're seeing X, Y or Zed or so I can't say enough about excellent therapy. And then spending time together, I think and really talking openly about about things. And it took time for the openness to happen for to be able to kind of crack that shell and to be able to talk about what happened, what they were going through while that was happening. And there were points in the process where I was so focused on my own survival, like particularly when we got to the stage of looking for living donors, and that whole process and stuff that I I did sort of check out a little bit from the family thing because I was just had to put all I had was very sick by that point too. So I had very little energy and bandwidth. It was basically survival tactics at that point. So I kind of lost touch a little bit, you know, during that that last kind of six to eight months. And I felt like we kind of rehashed a lot of those things, but it took time it took time for everything to to come out and it took concerted effort to spend time together and we felt like away from our everyday lives as well because everyone's busy here going off in different directions like our household when all three girls are here. It's very busy. So it was important to like, go away for weekends, go away on a vacation somewhere, just get out of the physical space of a home and just go somewhere where we could really reconnect. So we're still even now like, you know, almost five years later, we're still really trying to do that we realize how important that is. So, yeah,

PSC Mami- Monika  40:19 I really appreciate you sharing that I feel like in these conversations I learned so much for like, Oh, I'm noting that for my future for my child is older, you know, what are the techniques and ways that people have thought about this challenge, right, and how to connect how to heal in community, you know, so much healing has to happen in community, we can do our own individual work, but there there are these things that happened together that to heal together.

Laura  40:47 I think the worst thing you could probably do is to avoid speaking of it, like pretend like it didn't happen, I think that would be really harmful for the children, in my opinion, because they experienced it, you know, even though we tried to minimize the impact, they definitely experienced it. And it's important not to, to minimize or try to, you know, it's tempting, after you go through transplant to just want everything to revert to Okay, and to just be okay, like we're past that, or done that. But at the same time, there is a lot of things that need to be addressed in an open manner. And that the getting away together, it sort of serves a double purpose to because it creates a bunch of new memories, better times, and healthier times. And together times and, and it creates new memories. And then it's also time to, to talk about past and talk about any issues that come up. And yeah, I found it's really valuable as we go forward, we realize how valuable it is. And to have those memories of those things that we did together as a family, it just seems to be really important for that family cohesiveness.

PSC Mami- Monika  41:56 And now that you're almost five years out, what is your mindset now, your perspective?

Laura  42:03 Um, I mean, I feel so grateful for the bonus time I've already had, I don't, I don't know, I'm not the personality that I'm, I'm always a questioner, I'm an overthinker. And so I'm not the kind of person that's just like, Oh, it'll be clear sailing from here on out, like, just assume that that's just not my personality. And you know, there has been bumps in the road, like I had some pretty, I was in reje..., I've been in rejection, like two or three other times since transplant, not as severe as that first time. But you know, something to keep an eye on, and my kidneys are great to keep an eye on. And basically, I just, I appreciate every day, so much and every every day that I'm feeling healthy and able to do things, I just, I appreciate that so much. So, you know, going to Montreal, like a week with my kids, and we'll be away from work and our computers and everything. And it's just spending time together. To me that it's so wonderful to be able to do that. I just feel so so grateful to be able to do that. So really, when I was diagnosed, my priorities got really clear, like my first priority was my daughters and my husband, and then my extended family, and then my friends and then writing and travel. And that's basically I'm fine having a small house, everything became really simple when I was diagnosed, and that is still that is never left me even though I've been transplanted. Like I purposely keep my life very simple. And my priorities very clear. And my family is my first priority.

Laura  43:38 And so we try to maximize time with them and spend good time with them have talked to them a lot and have fun with them too. Like to build in time for fun, it shouldn't be all about trauma like to to actually do things that are fun to goof around to listen to music to you know, have jokes that sort of thing. It's it's it's really important. So yeah, I would say that those crystal clear priorities that I had from diagnosis they they haven't gone and I feel so grateful for that because I feel so many people, I'm almost 49, and there's so many people my age that are so I don't know still kind of tripped up by really having the wrong priorities, like a lot about image and they have friends that aren't really supportive and loving. And for me like I just everything even my friends like I don't have I have just some wonderful girlfriends and anyone who sort of is really egotistical or or really concerned with image or gossipy or backstabbing and stuff. There's just no energy for that whatsoever.

PSC Mami- Monika  44:45 There is something about bonus time where you're like- I do not have time for things that do not have me on the path.

Laura  44:56 Like why would you complicate your life like that, you know, like Yeah. So I know you just and I have to say that you find this mentality is very freeing.

PSC Mami- Monika  45:06 Mm hmm. Yep.

Laura  45:09 Like to all of a sudden things are just like, Yeah, I'm not wasting any time with that. I'm not wasting any time with that. Yeah. So

PSC Mami- Monika  45:18 I feel like you can't actually fake it. Like, you can't actually fake having face death square in the eyes.

Laura  45:25 Yeah.

PSC Mami- Monika  45:25 And then come through and be like, I'm still here.

Laura  45:29 Yeah.

PSC Mami- Monika  45:32 And I was still here because of another human being too, with the transplant. Right.

Laura  45:36 Exactly. Exactly. Yeah. So if anyone comes at you with like, BS of any kind, you're just like,

PSC Mami- Monika  45:45 Nope, can't do it.

Laura  45:46 Or drama you know? Yeah, it's so true. It really changes your perspective. And, and I do feel very grateful for that. And I always think, you know, none of us have any idea how long we're going to be here. Like, since I was diagnosed, you know, I felt like I had like the sort of death hanging over my head. But sadly, you know, since my husband, his mother was diagnosed with a really rare, really aggressive cancer when he was about 17, or 18. And she had a quite a heavy duty treatment, and but she's still alive. Like she's, you know, in our early 70s. And she's still alive. And he said, he said, when I was diagnosed, he's like, what he's like, you know, you think that you have like death all around you right now. But he said, you'll see like, people will die, people that we know will die of weird things like between now and the time you know, you have your your transplant and stuff. And sadly, that is true.

Laura  46:42 And I think this knowledge that that none of us are guaranteed anything as far as time, I think it certainly makes you live in a completely different way. And how you treat your relationships that are really important to you. It really, it just makes you that your perception of the people around you in life. And what you want to get for it is very simple. Whereas I think a lot of people have this that suffer from this thing that they think they're they're immortal, somehow. They just can't seem to figure it out. They can't seem to figure out what the priorities are. And they're always kind of getting lost. And I just think, like you said, once we looked death in the eye, once you've been rolled away for transplant, and you've had to say goodbye. You realize what you're left with, right? And so, you know, money doesn't matter, that much, your house, what it looks like, doesn't matter, that much, the clothes you have in your closet, doesn't matter. It's you know, it's love.

PSC Mami- Monika  47:16 And as a creative, can you speak a little bit to the role of creating in your journey post PSC and transplant?

Laura  47:46 Yeah, that's been really a lifeline. For me, I would say it was a way of preventing, leaving something for my children. And another, it was one of the most life affirming things I could do. I felt like in the act of creating, which in my case was writing, but it could be anything, it could be painting, it could be jewelry, it could be anything. The act of creating made me feel like I was saying, I'm here, I'm here and I'm creating this thing, out of, out of nothing. And then also in my case, it was the era that I chose to write about was completely separate from my PSC and my PSC journey. And so when the PSC got really intense, and sort of started to feel like it was consuming all my life, it was so wonderful to have this outlet to be able to go to a place where I was creating something, I felt like I was moving. It's so much of PSC, you feel like you're in a waiting game. Whereas with creating, you're constantly moving forward, you're constantly creating something new or having the idea for something new. And it felt like that one area of my life that I had control over. And that was a real escape from the PSC world. And that was so huge, and it really was incredibly life affirming, like, I would go and write for a while, and then I will come back to my everyday life feeling more empowered and feeling more positive. And that's also a wonderful way to work through some of the trauma.

Laura  49:16 Like I have a really good friend who's a painter, and I picked up the hobby of painting and my paintings were just like, ahhh, just like, everywhere, but it was just letting all that all my emotions out on a canvas. And it wasn't something I worried about selling or it was just just for me and just this release that was was so crucial to my to my mental to mentally keeping it together and staying strong enough to to get through the whole process. So I can, if anyone has a creative drive whatsoever, I can't encourage them enough to practice some some form of creativity, if not multiple forms of creativity, and it continues to be a lifeline for me. It's really what I love.  When I was pushed away to transplant, like there was there was love, my children, my husband, and then I was really glad to have written to, I was really glad that I had left something on myself. That was that was something that really resonated with me. So, yeah, I really do find that it's, it can be very transformative in those times. It's it's a great way of expressing that we're human and we're alive. And we're here and exploring, you can explore so many things through creativity. Yeah,

PSC Mami- Monika  50:32 As a former art teacher, I concur to all of that.

Laura  50:37 Things you can't put into words you can't verbalize like feelings and stuff. It just, yeah, you it's, it's wonderful to be able to do that.

PSC Mami- Monika  50:46 Are there any resources? You know, you mentioned creativity. And you mentioned therapy, are there other resources that you engaged in that maybe you learned about along the way that someone might not know about?

Laura  50:58 Well, PSC Partners was really huge to feel like to getting information, for getting emotional support, for connecting with people who just get it. For me, that was super important. And then even within that group, I found like, sort of my cohort of transplantees and stuff that kind of became this like Inner Circle as well that I just can't say enough about, it's really hard for other people around us to understand what it is living with something like PSC is such a rare, unknown disease, it's really hard. So it's wonderful to have that. One other thing I did, as soon as I was diagnosed, I march myself to my doctor, and I said, I need some anti anxiety, anti depression medication, because I will take all the crutches I can get, I have three kids, I have to stay on a relatively even keel. So for me, that really made a difference in being able to cope versus not being able to cope. So I have no, I have no shame around medication for anxiety or depression. That was really key.

Laura  52:02 And then another thing too, is I found a really great reflexologist, massage therapist, who really was a huge part of me staying vertical up until transplant like it was her therapy was just so relaxing, and gave me such a sense of well being even when I was really sick. And so I did that for like an hour every week. And that was sort of a place where I could go and my body would be sort of cared for in a way that was very soothing and and it became almost like in the first sort of 1020 minutes of our session, I would sort of vent about how I was feeling what was going on and everything. And then we were kind of work through all that through massage. So if you're somebody not everyone likes massage, but for people who do like massage or bodywork and stuff I really, that was really key to me getting through it. Yeah, those are those are sort of the the resources that I tried a lot of stuff at the beginning, I tried a lot of different things. And those are the things that I really stuck with. So writing, medication, massage, and I did have therapy for part of it. But then my therapist retired and, and the massage was kind of helping as a bit of therapy as well. So but also I always recommend therapy.

Laura  53:18 So yeah, those are the things that really, and then also, I realized that in my life prior to the diagnosis, I didn't put a lot of priority on having fun. I was more like I need to earn this amount of money or I need to accomplish this, I need to clean the house I need to whereas after the diagnosis, I would be ready in a heartbeat just to drop everything and just have fun

PSC Mami- Monika  53:44 I love that

Laura  53:45 like a fun seeker, I would, anytime friends were getting together even though obviously I wasn't picking a drop of alcohol I would be like yeah, I'm there. Yeah, let's go.And I remember one summer used to go to France in the summer to visit Frank's family and then one summer it wasn't looking like I was healthy enough. And then my my my PSC specialist, she said he said oh actually you're probably okay to go and then like four days later I was on plane. I was just like, Okay, let's just grab

PSC Mami- Monika  54:12 Let's go.

Laura  54:12 Yeah, just grabbing every opportunity to have fun like

PSC Mami- Monika  54:16 You were like, "I'm on the plane before you change your mind"

Laura  54:26 I gave everyone else in my family whiplash, but I was just Yeah, any opportunity to have fun just goofing around, to have a good time with spend time with friends or family. I just jumped on it. And and I think that that attitude is still persisted to even post  transplant like I'm going to have lunch with my girlfriends. Don't forget to enjoy life. So I cultivated that more after my diagnosis than I ever had before in my life. Great.

PSC Mami- Monika  54:54 I love that.

Laura  54:55 Yeah.  

PSC Mami- Monika  54:56 Thank you so much. Is there anything I haven't asked about or something you wanted to say to those listening about your journey?

Laura  55:05 Well, one thing is just to say everyone's journey is totally different. So some things that occurred to me might not, might not happen to them. But you know, emotionally I think we all kind of get where we're, where we're coming from. Just all my love to everybody, all the women with PSC and all the moms with PSC, you know, it's just it's a, it's a tough road, but there is, there is a lot of good that comes out of it as well. So closer relationships with my family, for sure. I think that has definitely happened with post PSC, just all my love to everybody and my support.

PSC Mami- Monika  55:44 And where can folks find your fantastic books? Where would you direct them to?

Laura  55:49 Well, my websites easy to find. It's Laurabradbury.com. And so that's really easy. My books are on Amazon. They're in a lot of bookstores, I have a cookbook and eight memoirs and going on four novels. So yeah, I became very productive creatively, but that's all since I was diagnosed with PSC a 2012. You just don't you just don't wait around for stuff anymore. You just do it. So yeah, so put a fire under me, which was which was really needed. So I really am grateful for that, too. So yeah, so Laurabradbury.com or Amazon any bookstore, you can you can find me.

PSC Mami- Monika  56:30 Thank you so much, Laura. I'm so excited to have chatted with you. This was wonderful

Laura  56:35 I was great chatting with you, Monika, thank you for doing this podcast is so important.

PSC Mami- Monika  56:41 Gracias for joining me and bearing witness to this story today. Every PSC journey is unique. And I'm so glad that we were able to share this on today. Please reach out to me if you'd like to share your story at the intersection of PSC and parenthood. There's a link at the website pscmami.com as well as other stories that have been shared over the years. Also, if you could share these episodes with your networks, you never know who they may reach in their time of need. Gracias.