Welcome the PSC Mami podcast project. A collection of stories at the intersection of PSC and Parenthood. We explore the questions, possibilities and challenges of people living with Primary Sclerosing Cholangitis and how it reshapes our expectations of parenthood.
recorded October 2021
““Not only can somebody save my life by giving me an organ but someone else can also bring life into the world by carrying one of my children.””
Photo credit Michelle Kirkby
Nicola 00:0 Not only can somebody save my life by giving me an organ but someone else can also bring life into the world by carrying one of my children. I mean, it doesn't get better than that. You know if you want to see a picture of something that's amazing within humans, I mean the thought that somebody, two people, would do those those acts for somebody else is, is so touching.
PSC Mami- Monika 00:31 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. That, 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.
PSC Mami- Monika 01:11 A reminder that all stories and information shared our 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 01:28 Today we have Nicola. So excited to have her, and she lives in the greater Boston area. She lives there with her spouse and two children. Welcome Nicola.
Nicola 01:39 Thank you. I'm so happy to be here. Thanks for having me.
PSC Mami- Monika 01:42 Tell us a little bit about your PSC story.
Nicola 01:46 My PSC story began in 2005, I was living out in the San Francisco Bay Area. For a, I just taken a job at a local advertising agency and life was great. I was feeling really good, really happy with where I kind of landed after college. And everything kind of changed one morning when I woke up with a really sharp pain in my right side, which at the time, didn't know much about the body but just assumed, oh Jesus, might be appendicitis, I should get myself checked out. So I drove myself to the emergency room and multiple tests were done. And the only thing that came back was elevated liver function tests, which didn't mean a whole lot to me at the time, I didn't know much about the liver. And I immediately had relief from that pain in my right side, and was referred to a gastroenterologist in the Bay Area who did a few more tests, including a liver biopsy. And the results came back with primary sclerosing cholangitis, which was, it was a definite shock to me at the time. I didn't know much about any liver diseases. But I was surprised that something like this could happen to me, it just seemed unusual. Why would a female in her early 20s have a liver disease. as someone that's taking care of themselves their whole life. So my family's back in the Boston area. And being young at the time, I wanted a little bit more support from my family, as well as a second opinion. So I came, I was able to transfer my job back to the agency's headquarters, which were luckily based in Boston, and was able to get a second opinion, which again confirmed the PSC diagnosis. So it was a tough transition moving back across country dealing with a health issue, but feeling fine. I was asymptomatic at the time. And I just remember thinking over and over again, how could I have this I feel great. I feel fine. I don't have a liver disease and things progressed your year. And when you live with a chronic illness. I think a lot of times you don't realize that what you're feeling isn't normal, because every day it feels a little bit different. But that's just you, you think oh well it's normal to feel tired at five o'clock at the end of the day because everybody does don't they, they don't realize until they all add up. And I didn't realize until later years later how sick I was getting each and every day.
Nicola 04:11 My main health issue was not only the symptoms of primary sclerosing cholangitis but also the fear of cholangiocarcinoma, which is the bile duct cancer which comes a lot of times hand in hand with PSC. I would have scans every three months and new tumors and growths would show up on my liver which required frequent biopsies. And every time, every three months we did a cross your fingers do a lucky dance and hope that those biopsies came back negative. But eventually one of those was going to come back positive and I didn't want to be staring down the face of cholangiocarcinoma in my early 20s and then have a very different life ahead of me. So things progressed over the next couple years. So when I was 26, my team in Boston sat me down and said I think it's time to start seriously thinking about a transplant. The risk of carcinoma is getting greater and greater for you. And it just seems like that was the best option for us to move forward. And that was a shock. I knew I wasn't feeling well. And I knew that maybe it was in my future, but you also hear that not everyone with PSC will need a transplant. So I took a little bit of time to digest that. And I ended up getting a second and third opinion other major well known centers in the US who also agreed with the suggestion of considering a living donor. And the issue that PSC gives all of us is that we'll never, most of the time never get high enough on the transplant list to receive a cadaver organ. So a living donor really is the best option for us.
Nicola 05:47 So I'm lucky that I'm one of four children and I had a large support system come forward to try and be a donor for me. And I have all of my siblings and their spouses, and my parents, and my then boyfriend, now husband, all stepped forward to say, let me help let me give you part of my liver, which is an amazing thing that that's even an option, right? That someone can take a piece of their organ out of themselves and give it to you, and it grows there, grows larger or shrinks depends on the size of you. But it's an amazing thing that that can even be done. And it was my older brother who was originally supposed to be my donor match. And after a couple scans, final scans, he had a benign lesion on his liver, which eliminated him and so my younger brother was my match. And in July of 2009, he gave me 58% of his liver. And I am forever, forever grateful for that. I can't thank him enough for it every day, I want to call him and say thank you when he you know, he says you would do it for me, you would do it for me, just stop thanking me. But I really am so very thankful. So since since transplant, I had a great recovery, I was back hiking, and running around after three months, and I was back to work full time, and was lucky to have a fairly quick recovery. And it helped to that I was younger and determined and had family members that were continually making sure I was taking care of myself both eating and moving and doing everything I could possibly to make sure that everything would go as smoothly as possible. Since the actual transplant itself, I've had quite a few bumps as it's not always an easy road. I've had a lot of problems with biliary strictures, which come from the surgery itself and recurrent infections. But going into transplant, it's always a game of trading one set of problems for another right, a transplant isn't a cure, we need a cure, so that people don't have to face transplants.
Nicola 07:59 But it's one way to help relieve some of the symptoms, but there's always a risk of the original disease coming back, which is something that those of us post transplant, live with that fear every day that you could hear the news that you have recurrent PSC, something that we never want to hear, but unfortunately is a reality and the risk of that grows each year post transplant. So it's always something that's in the back of our minds. And certainly in the back of my mind, every time that I have labs drawn or scans done, there's always the chance that that news could be delivered. But all in all, I consider myself a quote unquote healthy person, even though on paper, I look chronically ill with a liver disease and a couple other autoimmune issues, and I'm in and out of the hospital, a decent amount. And but you know, I think every day, I'm really appreciative of that time that I get with my friends and family just because you really it sounds so cliche, but you really never know what the next day is gonna bring.
PSC Mami- Monika 09:03 Absolutely. Can you tell us a little bit more about the process of living donor? Like what was that like for your family? It sounds like it was very much a family affair and your husband and every one stepping forward. I know for many of us that question when we're told like okay, you have to go ask people to give you part of their liver. What was that process like for you? And I know everyone has a different experience in that that time.
Nicola 09:30 The living donor process is a rollercoaster ride, to be honest. I'm lucky enough that I had multiple siblings and their spouses and my boyfriend now husband at the time all stepped forward to be a donor. And I have an identical twin sister actually who was a match but wasn't chosen due to just the thought that maybe my body would just think it was the same organ again and I'd be in the same position a few months later. The process started with me telling my family that I needed an organ sooner rather than later, I didn't have to ask everyone step forward, without even skipping a beat everyone, I'll do it, I'll do I'll do it. And that's a really humbling experience knowing that all those people would literally put their life on the line for you, without even thinking about it for a second. And I would do the same thing for them. But it was certainly a trying time for us, there was, we started with my older brother, he's the tallest of us all, I won't say biggest, he's the tallest. And in theory, the smaller piece of his liver will be taken to donate to me. And unfortunately, he wasn't 100% a total match. So my younger brother ended up being the match, and the phone call of from the surgery team in Boston to tell me that he was a match was, I'll never forget it, I was driving home on 93. And coming home from work and seeing that phone number on my phone was one of the most nerve wracking phone calls I've received. And I couldn't literally remember physically sitting in my car and thinking I should probably pull over I'm so excited, nervous, anxious every feeling you could possibly have, knowing that you're going to be facing this this major surgery. And we made the most of it to have to say if we had the surgery in July in July of 2009. And I remember July 4, just a few days before the surgery, we all got together and we tried to make it as fun as possible. We had a cookout, we played yard games, and there were definitely moments of emotional breakdowns and kind of moments of fear. But we we tried to use him humor as much as we could. And just think how lucky we were that this was even an option for me, and for all of us. And that, you know, together we'll we'll get through it. And we did. And I'm so thankful that the team in Boston was able to guide us through the whole process, we knew exactly what to expect. And I think it went as smoothly as it could have gone really.
PSC Mami- Monika 12:09 And what was the recovery process for you and your brother? What did that entail? I know a lot of people have questions about like, oh, the person is going to donate, like, what is that process?
Nicola 12:22 My brother had never actually had any type of surgery before. I don't think he'd actually ever even had an IV. So going from nothing to donating a piece of your liver was a big was a big jump. And he recovered. Miraculously well, he was even younger than me at the time, actually still in college, so was probably in the best shape of his life. And we went into the surgery, it was a little bit longer than we had planned. But I can only imagine what it's like to have two children in the operating room at the same time having kids myself, I'm not sure I could do it. But Steve, my brother, was out of the hospital, I think within six days of the original surgery, and I think the hardest part for him was honestly staying on top of the pain meds because you and I both know if you don't stay on top of it, the pain will just it's hard to get back on track once you've slipped off the path.
PSC Mami- Monika 13:16 Absolutely.
Nicola 13:17 Once you realize that the pain meds were necessary to be taken every few hours, I think he was in a much better place. And he was back to living a completely normal life by the time he went back to college in September. And the scar was just a joke to tell all his friends and how he would say you know where'd you get that scar? Oh, like you know, every day it was a new one, oh it was a can opener accident, or I was bitten by a shark, or you know. He really made the most of it and still to this day it's a good joke we all have in terms of my recovery. I was in and out of the hospital in 11 days and then was home for a day and then ended up with an infection and went back in for a few more. But I think in terms of transplants, it was fairly a fairly fast recovery. And like I said earlier, I think a lot of that was just because I was so young. I'm sure if I went through it now it would be a little bit slower but I think age was definitely on my side.
PSC Mami- Monika 14:16 Here we we talk a lot about our the intersection between PSC and parenting. Can you tell us a little bit about your parenting journey? At what point did you decide with your husband to that you were going to start a family. Did you decide and if so, what was that process like for you?
Nicola 14:33 Yeah, parenting with PSC is always an interesting topic. My husband and I met in 2008. So a few years after my diagnosis, and I remember thinking, Oh gosh, I'm gonna have to tell him about this little liver disease I have and I chose to pick- I conveniently chose the time to tell him. We were driving to a drive-in-movie. It was pouring with rain. And he seemed distracted by the driving. So I just kind of slipped in and mentioned Oh, just so you know, I have a, I have a little liver disease. It's not a big deal, but it's this thing called primary sclerosing cholangitis. And I thought if I said it really fast, he'd never remember it. And then I'd feel some relief that I got that off my chest now he quote unquote, "knows" and everything's gonna be fine. It just takes a couple pills a day, you have a couple scans, it's not a big deal. Because our relationship was still new. I didn't want to scare him off thinking that, gosh, does he want to be dating this girl with liver disease? And what's the rest of our like, life gonna look like? And he came back the next day with a whole list of questions about primary sclerosing cholangitis and had done some research and kind of pulled out a list and said, "Yesterday, you mentioned primary sclerosing cholangitis. I have a lot of questions." And I think that was a turning point in our relationship. I think that, Wow, he A listens, which is amazing. And B, he actually went home and did research and came back with questions, some of which I couldn't answer. So at that point, I knew okay, this guy's probably all in. And I was so thankful that he didn't run and that he was there instead, we dated for a few months, and I was facing transplant within six months of starting to date him. So I think the relationship just kind of accelerated anyway, just because I was facing this major surgery, you're either in or you're out.
Nicola 16:28 And obviously he was in and we'd always wanted children and one of the reasons why I was transplanted. Another reason why I was transplanted is I was not going to be able to carry children on my own. If I hadn't had a transplant- I had esophageal varices and portal hypertension and a lot of other things that wouldn't have made carrying a child safe. And so while it wasn't the main reason for needing a transplant, it was certainly a factor. I'd always envisioned myself with multiple children. And so facing hearing that knew this was crushing. So when a transplant became an option, that piece of having children made it also more attractive. I was able to be transplanted, obviously. And while it's not recommended to have to be pregnant within the first year of transplant, I was still young anyway. So I ended up, we ended up having our first child within four years post transplant. And I was seen by the high risk team at Boston hospitals and was watched very closely and I had an amazing pregnancy. I loved being pregnant, I felt amazing. My liver numbers all looked great. I was one of those annoying women that loved being pregnant and would have been pregnant my entire life if I could have been. There's there was no better feeling in my world other than being pregnant.
PSC Mami- Monika 17:54 What do you think contributed to- Was it the feeling of being pregnant? And I guess I ask because for me there was a piece where I had thought for so long that I couldn't that when I was it was like I was so excited, I was so joyful. How would you describe that for yourself?
Nicola 18:12 I think I feel similarly. I think when you were diagnosed with a chronic illness, there's so many things that you feel like you're taking away some things are small, like not being able to have a drink and some things are big, like not being able to have a child and having the chance to actually do one of those things that you thought you couldn't is so it makes it so much sweeter.
Nicola 18:38 And I always say we always say in our house here that you have to have a bad day to really appreciate the good, and I know that sounds cliche but there's no better reality check than all of a sudden waking up one day and you don't feel good and need to be in the hospital and you're ripped away from your family for a few days and not knowing what the next week doesn't look like. It could be surgery, it could be you could be home, but you could be facing surgery or some kind of drain or procedure that you don't want to have. And that's really good perspective to have that all of a sudden you realize how good life is you know, and I think that was a big part of it is that I really appreciated being able to do that because there was at one point where I wasn't going to be able to. And I always had in my mind that I wanted five kids and which is funny now, because when you have one kid you think oh gosh what was I thinking with five, but I think I went from this mindset of wanting five to "wow I'm so thankful that I can just have one. I mean what a blessing than I could do this, and I and that I feel so good." It's was awesome and while I wish everyone had amazing pregnancies,
Nicola 19:55 I'm really thankful that I had such a great experience as I, after my first son was born, I had some complications from my transplant that required me to have additional surgeries, which made it a little bit tricky for us to have a second child. So the team came to me and said, you know, after all the trauma that your body has been through, we don't really recommend a second child for you carrying yourself. So that led us down a path of I know, you've talked about these on podcasts before around, do we adopt? Do we have a surrogate? Do we just have one child and be incredibly thankful that we have one, and it went down, we spent months if not years, researching and trying to figure out what the best path for it for us was, and we ultimately landed on surrogacy. So our second child was born through a gestational carrier. So it was our biology placed in another woman. And he was born healthily for years after our first and that alone is also an amazing experience, not only to, to be told, not to be told, first of all, that you can't have another is crushing, but then to realize that not only can somebody save my life by giving me an organ, but someone else can also bring life into the world by carrying one of my children. I mean, it doesn't get better than that, you know, if you want to see a picture of something that's amazing within humans, I mean, the thought that somebody to people would do those those acts for somebody else is, is so touching.
PSC Mami- Monika 21:38 Absolutely. Can you go back to that process of from finding out-your team coming to you and saying, We don't recommend this? Right? What was that like for you? As someone who wanted five kids, and then not have kids, and then I have a kid. What was that moment for you? And sort of how did you process that to where you got to?
Nicola 22:04 Yeah, I think in the moment, hearing those words that a second child probably wasn't a good option for us, well for me to carry a second child. At the moment made sense, I was recovering from a fairly major surgery, I had a three-monthold at home that I wasn't able to see because I was in the hospital. And honestly, the furthest thing in my, in my mind at that point in time was carrying another child, I just thought, Gosh, I'm I'm trying to recover from this. And I already have a baby at home. So in the actual moment, it seemed rational, it made sense. I agreed. I thought that sounds like a smart choice. But then months down the road, when you realize how amazing your six month old is and how cute they are, and how much you didn't think you'd love someone as much as you love your baby. I think it's sunk in a little bit more. And we have a kind of like, gosh, is that? Is that really the best option for us? Should we really not have another child? Or is it was it just kind of in the moment maybe maybe we should revisit? Maybe they didn't really mean that? And so we continue the conversations. And the same answer was there that probably wasn't a good option. And my husband's very rational. And I think he always sees these things. And he's able to take the emotion out of it and make a decision. And I remember we had to kind of many, many conversations about it. But I think at the end of the day, I think his comments were, you know, we need you here to raise the one child that we do have while it would be amazing to have another child He's like, I can't risk losing you and another child for something that there might be another option for us. So we are lucky that there's adoption is an option and surrogacy is an option. And we also have many nieces and nephews that we love dearly that are like our own children. So lucky to have them too. So I think as as gut wrenching as the conversation was, we were somewhat enlightened that there were other options for us.
Nicola 24:21 And well, 20 years ago, if you told me that, I'd have one child of my own, and that would be it. And maybe I'd have to adopt or use a surrogate. I would have probably told you you're crazy and that won't happen to me. But going through the surrogacy journey was one of the most amazing things that I've ever gone through in my life. And I, our surrogate that we used was an is one of the most amazing people in the entire world that they would put their body on the line to carry a child for you is a bond that you can never really understand. Until you've gone through it. And she's, she's a member of our family and we love her dearly and I don't- I can't speak highly enough of her and her big heart for doing that for us and helping us to complete our family.
PSC Mami- Monika 25:17 And could you speak a little bit about the surrogacy process? For folks who don't really know or haven't been exposed to that process? You can give like a quick overview and then tell us a little bit about how it was for you all?
Nicola 25:30 Yeah, surrogacy is an interesting topic. There's a lot of information out there about it. And unfortunately, some of the information is negative. You hear about these crazy stories about surrogates taking babies, and I hope I can clear the air and say that that doesn't. That's not a common occurrence and doesn't happen when you do it the right way. We ended up using an agency out of Boston to help us with our surrogacy journey. And that meant that we didn't know our surrogate before that we started the process. So we engaged with the agency to learn about us and what type of surrogate would work well for us, how we live our lives. It's an extensive extensive interview and application process. They want to know everything about you every how you how you live your daily life, what what kind of foods you eat, how is your what's your driving record, like and their job is to find a match for you that matches as close to 100% as possible.
Nicola 26:33 So we signed on when our oldest son was 11 months old, we ended up being matched. Well, we signed down when our oldest was 11 months old. But then we paused just because I wasn't able to go through the IVF process because I was having some infections. So we paused for about a year until I was able to get those infections under control. So when we finally signed on again, within a year later, we were matched. It took six months to find a surrogate that was a perfect match for us. And originally we had wanted someone on the East Coast just because I want it to be at the appointments. And this agency has a really strict process for for finding surrogates, they have to be literally angels on earth with the most perfect health record. And I mean perfect driving record. Just people that honestly I'm not sure they even exist, but they do. Well, we couldn't find someone on the East Coast, we were ended up matching with a woman out in Montana, we first met over Skype because nobody uses Zoom back then we used Skype, she flew out to meet us a month after we had first talked to her and had a medical screening done in Boston to make sure that she was medically cleared by my team as well as her own team. And the process started from there, she went through IVF treatment to get herself ready to accept the embryo that was going to come from me I went through IVF to create eggs to them become embryos to place in her. It was, it was incredible. I, we'd talk every week, I we flew out for the 20 week ultrasound, we, I mean we've become we became super close. And she's one of my best friends today. And we actually just talked last weekend and still sit stay in really close contact and she's a part of our life. And we're a part of hers. And our youngest son always tells everyone that he was he was born in Montana. And his bedroom is now themed after Montana. And it just holds a really special place in our heart.
PSC Mami- Monika 28:40 I know there's often a lot of questions about IVF with PSC in general. What was the process and the conversation with your team about IVF post transplant?
Nicola 28:50 Yeah, it's a good question. I had a lot of questions about it as well myself, I was nervous about the implications and how it could affect my meds and my liver, obviously. And so I had weekly labs drawn throughout the entire process just to make sure everything was still in check. And at one point, my liver function tests elevated slightly. And so I think that week I had labs drawn a couple times, but it was just a fluke or something, but they ended up going down on their own. But it was a conversation about the risk of benefit. And we as a couple decided that the risks of IVF for a few weeks, were worth the benefit of having a child at the end. And I think it's if I had to I was lucky enough that I only had to do one round of IVF and then I was able to produce enough eggs to move forward and freeze a few embryos. I think if I had to do multiple rounds, it would have taken a toll on me and I'm not sure the team would have they would have recommended it with close monitoring because I knew it was that important to me and then I'm a conscientious patient I was gonna take care of myself and raise the flag if I didn't feel well. But I think it's a hot topic and I know one that I've talked to a lot of PSCers about and I think I would just always encourage it. You know if it feels something that you're really passionate about. And it's really important to you. I think it can be done with just close surveillance and like anything with any chronic disease just to use your common sense. And if it doesn't feel right or you don't feel well or things aren't going well, then your health is the most important thing.
PSC Mami- Monika 30:18 And can you tell us a little bit about how parenting? How old are your children? Now?
Nicola 30:24 My oldest is eight and my youngest is four.
PSC Mami- Monika 30:27 What is it like to parent now? How has PSC and transplant influenced how you approach parenting? I know it's hard not to know, you know, you didn't parent without it. But you know, if you're able to kind of think about what are ways that you think that this journey has influenced your parenting.
Nicola 30:47 I see, you know, members of my family parent, without a chronic illness or some friends, but you know, chronic illness or not. Everyone has something right, everyone has something that they're dealing with in their life that makes that makes parenting a challenge. So while I may be different, that it's an illness in my case, there's always going to be something I think we've always believed in being honest, but not too honest, in terms of what we tell our kids, they both know that mom had a transplant, and that she takes medicine every day to keep her healthy, we'd like to check in and have these honest conversations regularly. So not just when I'm not feeling well and need to go the hospital. But hey, we're just sitting around the dinner table. And remember, Mom takes those medicines. And sometimes mom needs to go the hospital and just kind of get checked up. And sometimes mom wakes up and doesn't feel well and needs to be seen really quickly. Just so that it's, we're hoping that if we practically talk about it, that when it does happen, it doesn't seem so shocking, because in my case, it can be shocking, the infections that I get, come on very fast, so I will be completely fine. And an hour later, I'm really unwell and need to get to the hospital as soon as possible. And unfortunately, my children have witnessed that, and no parent wants to see their kids see them not feeling well.
Nicola 32:10 But my youngest is a little bit too young now. But my oldest has an enormous amount of compassion, and almost too much if I say, just because I think he's, he wants to take care of mom. And I struggle with that a little bit daily, on a daily basis to tell him you know, you don't you don't have to take care of me, I don't want him carrying that burden of feeling like he has to take care of me. I can take care of myself I can do it, you can help me but you don't need to take care of me, I don't want to you know, as an eight year old, he doesn't need to be carrying that burden.
Nicola 32:40 And we also try and make chronic illness fun, right? So although I had a transplant, and occasionally I'm in the hospital, and I have another autoimmune disease, which causes some problems, I think we try and get out there for you know, the liver walks and the fundraisers and really try and show them how important it is that we do our best and to try and find a cure so that no one else has to go through this. Or if mom happens to get PSC, again, that we feel good knowing that, gosh, we're doing everything we can to try and save mom and save everybody else that's fighting this fight. I think that kind of normalizes the event. And I hope both of the boys grow up knowing that their job is to make the world a better place and help those who need it most. And I think having a mom with with a liver disease and health issues, I think, will hopefully teach them that.
Nicola 33:38 And I think Lastly, we really just enjoy the time I mentioned it earlier, but there's really no better way to gain perspective than to be sitting at home one minute and then in the hospital the next minute and realizing, Oh wow, that, you know, I was stressed about you know. what I was going to make for dinner that night. And when you're in the hospital dealing with something that could potentially be fairly major, that dinner did not matter. And I feel like it's a really good reality check as to what's important in your life. And we all get bogged down in the day to day but you know, the times that I have in the hospital, I take it as a really good moment of self reflection and say, I can't I really can't be wasting my time worrying about whether or not my son went out the door with matching socks on it doesn't it doesn't matter. And we're enjoying the moment because you really don't know what's gonna what the next day is going to bring. And I think when you have a bad day, it makes you gosh, it makes you really appreciate the good days.
PSC Mami- Monika 34:40 We recently, well, in the last couple of years I've got through, like our son is young right, he's six now, and and when do you tell how do you tell? What was that process, like at what point did you start talking to your oldest, and then your youngest, but at what point did you start talking and kind of how did you figure out what language to use? It sounds like you're very thoughtful and communicative. At what point were you like, okay, we're gonna start talking about this. How old was he? Do you remember?
Nicola 35:08 Yeah, I think my eldest was probably around four, when he really kind of started to get it. I remember having a biliary drain. And for those that don't know, that's, you know, a drain that comes out of your side that drains bile from your biliary tract into a bag that you carry around with you. So not exactly the fashion accessory that I was hoping to carry around. But I found ways to make it work. And he saw it, and he would see me changing it, and he would see me flushing it, and he would see me, you know, taking care of it. And I brought him into that process. So well, it's time to clean mom's drain. And as disgusting as that probably sounds, he really enjoyed helping me help myself. And we made it an activity. And I think at the moment, he didn't put the dots together that I don't think he realized that not everyone else's mom had a drain until later in life, but kind of normalizing health things in the house. And he'd see me with an IV pole getting antibiotics. And he'd helped me with that. And we'd play games about, you know, follow, follow the little bubble or countdown on the timer. And he thought it was fun.
Nicola 36:22 And I think it's a fine balance of giving some details. Because there are moments where I mean, and you can't do that today, because mommy's not feeling well, giving him some kind of details. But he doesn't need to know the gruesome details. I think it is a fine balance. And honestly, I'm still struggling with that balance today. Sometimes I think, gosh, did I share too much there was a little was that a little much for an eight year old? Or was that a little much for a four year old. But generally the kids know, you know, if they come back with more questions, and some kind of deep questions, I think that might have been a little deep there and kind of will pull it back the next time. But I think it's always a challenge, getting the right amount of information out there. And sometimes, I think it's going great.
Nicola 37:06 And then other times we had a couple weeks ago, my oldest son was a little bit fiery in the afternoon, one weekend, and we kind of said, Yeah, what's going on, buddy? Like, why what's going on? And he said, "Well, no one else says, Mom, no one else has moms in the living room with an IV pole, because I was having an infusion that week for my other autoimmune disease. And no one else has mom goes into the hospital for procedures. And I'm just kind of annoyed." And I kind of sat there and said, oh, gosh, I should have pro-actively addressed it a little bit more. Now I was having to reactively go and say, "Yeah, your mom's getting this infusion in her living room. But how amazing is that, that we have healthcare that can give you medicine to make you feel better? And how awesome is that, that there's a nurse that can come to my house so I can get it on my couch, which is really nice. And how amazing is that, that this medicine is working for mom, and that? Sure I have to have it a few every few weeks, but I'm here with you," and trying to find the silver linings. Again, it's cliche, but I think that's really the best, the best way to handle it. And so that they know going forward that hopefully if they meet somebody with a chronic illness, or if they have a chronic illness themselves that they can have that perspective. And if if they do that, then I'll feel I feel pretty good about it.
PSC Mami- Monika 38:32 And it sounds like you have a big focus on really helping them through the process in those moments when he is frustrated and shares those things. How does that feel inside of you? How do you work through those feelings?
Nicola 38:45 Yeah, it hurts. I'll be honest, I I wish he didn't have a mom with like that. And I wish he didn't have to see it. But he, he does. And that's the life that we were given. And everybody, like I said, Everybody has something. Mine might be more visible to him than someone else's. But I'm hopeful I can show them resiliency and that his mom is brave, and that we can do anything. And while they don't understand the- how large of a surgery and liver transplant is, you know, they see my scar and not a daily basis, but they see my scar, you know, in the summer. They have questions about it. And I think I use it as an opportunity to say my mom was really brave, and Uncle Steve gave part of his body to mom, and that was able that allowed me to have you, which is that chain of events. I'm putting it really simply, but that's amazing and that I'm hopeful that by talking about it normally and on a frequent basis, then when it eventually all sinks in, it won't be so overwhelming.
PSC Mami- Monika 40:08 So it sounds overall you hold your continuing care and your children and their emotional mental health. I'm sure your spouse also is in there, self care has become very cliche and you know, very like bubble bathy. But what are things that you are able to do have, coping mechanisms isn't the right word, but also just how do you care for yourself and keep yourself steady? Because it sounds like you're very steady for your family. And really thoughtful about your family. How do you maintain your own internal ship? If you will?
Nicola 40:47 Right, it, yeah, I like that term, internal ship, I think it's a challenge, I will say I, I definitely have moments of weakness, I think I typically turn to exercise, I feel like I move in my body is definitely helpful. And I can feel your body, you can feel it when you just need to, you just need to move. So that's, that's a big part of my life. I think I also journal a lot. And every time I have a scary feeling, or really anxious, or I'm worried about something, I write it down. And it sounds really morbid to say that I have a book that I write to my children, but I do I have a book that I write to my children that if something were to ever happen to me, they would have it. And so I write everything in there. Something I'm proud of them for something funny they did. I just, it helps me sleep at night, knowing that if heaven forbid, I didn't wake up the next day, they could read this and know everything that I was thinking and feeling for them. That's very private, I don't know. And you know, no one reads that except for me, and I hope no one ever has to read it. But it makes me feel better knowing that it's there. So I do turn to writing a decent amount. And I have an amazing husband who is a great listener. And we can talk about all of the feelings that either of us have. And I'm so thankful for that I've you know, I've seen therapists before. And it's, I always find it hard to find the right therapist that works well for you. But I have found one that works for me. And if I feel like I need that that's always an option. But I'm usually able to steady myself through talking to my husband or my sister or my parents or my brothers. And my kids. You know, I I'm not afraid to tell my children that I'm I'm feeling really emotional today. And I'm feeling really anxious and I need an extra hug. They're so good with that. And I'm really thankful. So I think it's a it's a continuing motion. It's not, you know, there's it's not all of a sudden I'm anxious one day and not anxious the next. I think I always have an underlying level of anxiety, just living with health issues and the fear that maybe the liver disease disease could come back or maybe tomorrow I'll be in the hospital, but try and take it one day at a time. And for that moment when Gosh, the sun is out and my youngest wants to go for a bike ride. Gosh, darn it, I'm going off for a bike ride because I can you know when there's been plenty days when I can't. So yeah.
PSC Mami- Monika 43:23 Can you think of a moment of joy with your children? Can you tell us about just a really fun time.
Nicola 43:35 A real moment of joy for us is we go to Martha's Vineyard every summer. And my husband and I have been going there every summer since before we had kids. And while it's changed a lot of things. The first time we went was we went over on the ferry with bikes and backpacks. And now we go over with an SUV full the top stuff. It's fun how it's evolved every year. But one of our favorite things to do is ride our bikes on the bike path and get an apple fritter. And the apple fritter that we get is typically the size of both of my sons heads. It's huge. And so I think one of my favorite moments is getting over to Martha's Vineyard, getting on our bikes and riding to get that apple fritter. And it sounds so silly when I talk about it. But the joy seeing on their faces that they've waited all year for this moment, and that they see the size when you're a kid and you have a treat and it's that big. That's exciting, and seeing their eyes light up when they try and compare who got the bigger apple fritter, and how look how big this thing is. Oh my goodness, can you believe that mom and dad bought us this. It's awesome. And I love that moment. And it's something so so small, right? riding a bike to get like, basically a donut, they love it. And I love it too. And I, I always, we always talk about that moment when they get their fritter. And they're sitting on the bench, and they're grinning from ear to ear about how good their life is at that point. And I agree, I think in that moment, and in those times, life is great. And if they can have moments like that, all year long, I'd be thrilled.
PSC Mami- Monika 45:26 That is a beautiful tradition. What something you're proud of in your journey?
Nicola 45:37 I'm proud, I'm proud to still be here, which sounds dramatic, but I'm proud, I'm proud to be able to not look sick. And while on paper, I look sick, you know every time I go in the hospital. The doctors kind of say, oh, oh, you've been through it. And nobody really wants to hear that. But I love seeing people's faces when I don't know that I've had a transplant, or I stand next to my twin sister, and they can't tell which one has been through it. I love that feeling. Because that makes me feel like I'm normal. And I'm really proud of that, that, although I have some health issues, and I've had a transplant, and I take a lot of pills every day, and I do a lot to take care of myself. That to the everyday person on the street. I look healthy. And for the most part, I feel healthy. And I'm really proud of that. Because I know there's not a lot of people that are that lucky. And that fortunate. And I feel an immense amount of gratitude that I could wake up every day. And I look normal on the outside.
PSC Mami- Monika 46:56 Right? And it sounds like you do, and knowing you from where I know you from, I know you do a lot of advocacy. Can you tell us a little bit about that? What do you get out of that? What's your motivation? What is something you've received from that work?
Nicola 47:12 Yeah, I think one of the, I think everyone is gifted with some kind of blessing on the earth. And if one of my blessings is to help somebody that's going through something similar, then I'm going to do everything I can to help them with that. And I've been fortunate enough to be active with PSC Partners, which is a nonprofit that is helping to find a cure for a PSC. And I've also been very active with the American Liver Foundation through various events. I've done a lot of speaking to pediatric patients and their parents about what it's like to go through a transplant, I've also had the opportunity to speak to a lot of pharmaceutical companies about what PSC looks like. So those that are actually researching to find a cure, it's helpful, I think, to some to sometimes see a patient with it, or to hear a story and they get just kind of is a little bit of a motivation, motivating factor to help them. I don't want to say work harder, because I know they're already working really hard, but maybe a little bit of gives a little bit more depth to their everyday work. And I've also gone up to Camp Sunshine in Maine, which is a camp that's put on over the summer, and they have varying weeks of a theme for each week. And I my husband and I have gone up for the transplant week where patients and their families can go to this camp free of charge for a week to enjoy what a summer camp has to offer the kayaking, the canoeing, the arts, and crafts, all that kind of fun stuff. And being able to talk to parents, or for parents to see somebody that's gone through a transplant, I think is helpful.
Nicola 48:51 My story isn't perfect, none of them are. And while I still may have a few bumps in the road, I wouldn't trade anything for where I am now. And there's so much there's there's such a good feeling if you go somewhere and you're able to share your story or help inspire someone to kind of keep fighting the good fight. That's an incredible feeling. And while I wish I didn't have the story to share, I'm really thankful that I do and I I'm hopeful that if I can just make a difference in one person's life then I've done my job. I think especially in the early 20s that's a scary time in your life trying to go into a lot of life events. You're might be looking to get married, maybe looking to have kids and that was right where I was when I entered the PSC world. I know at the time I wish there was someone that I could have said, hey, you've been through this tell me your story. Give me some give me some feedback or advice and I'm hopeful that I can do that for for somebody.
PSC Mami- Monika 49:57 Yeah. I will say I knew some of your advocacy but wow, you do so much, so much for everything you do. And it's so true this story right when you need it makes such a difference. Man, I remember right after transplant, I was in a wheelchair, not happy right outside the hospital, you know, jsut fresh after. And a gentleman just walked up to me. And he's like, "Did you just have a liver transplant?" I was like, Yes. And he like told me his story. And that just gave me so much energy and like to go through that, you know, what was coming in the next couple weeks, you know, because I saw him so vibrant, and alive. And I was like, okay, that story is just so helpful. It's so powerful.
Nicola 50:42 Yes, there are some moments I feel like in the transplant process that are hard. And I've had a couple moments like that to where you've seen someone or I've seen someone in clinic struggling and say I was where I was, where you are five years ago, or whatever the time frame is, and you got this, it's, it feels impossible, but you've, you've got it. And it's, I'm hopeful, I can help like that, and encourage and because I'm sure, you know, a bump will hit me, and I'll be out there looking for that in return from someone else. So I believe in karma and feel that if I can give it to someone, then maybe when I get it back when when I need it. It'll be there for me too. So it's wonderful.
PSC Mami- Monika 51:30 And are there, obviously you've very much engaged your family support network and those around you. Are there other resources that you tapped into during your process that you want to share other organizations or things that people might want to look up in their journeys?
Nicola 51:49 You know, I think I follow the same resources that have probably probably been mentioned before. But you know, PSC Partners is a big one, a lot on social media, although I will say social media is a tricky space for everybody. I think there's some amazing stories out there. But there's also an element of people living normal lives that are not on social media. That I think it's hard. If you get buried in threads and threads and threads to get into a bad headspace, I know I've done it myself, that it's hard to kind of keep that perspective that maybe that's only one side of the story. But between I think between social media and PSC Partners in America Liver Foundation, I think those are generally my go tos. I also love reading medical research. That's how I spend a lot of my free time is researching, researching, researching. And I'm always in the doctors offices or emailing them with questions about research studies, and probably driving them nuts, but I'm interested and try to be as informed as I can as a patient, because you've, you've really got to advocate for yourself. There's a lot of information out there. And I think it's just a matter of taking the right pieces for you not getting kind of bogged down into the details that might not necessarily be applicable to your journey.
PSC Mami- Monika 53:09 Well, your story has been so wonderful and so powerful. And I'm so grateful to you for sharing before we close out. Is there anything I haven't asked you about that you want to share? Or if there was, you know, someone in a similar position, what is something you might share with them as we close out?
Nicola 53:28 Well, first of all, saying thank you to you for having me, I had so much fun chatting with you. And I'm hopeful my story can help somebody else and share a little bit of a bright light in sometimes the darker room. But I think I would close by just saying we're so lucky to have every day that we do have. I really try and wake up every morning and say, two feet on the ground. I'm still here. And what an amazing feeling that is. And we take it for granted. And I try not to but we're human and it does to wake up every morning and are able to function, and play with your kids, and ride your bike, and talk to your neighbors I think it is an amazing blessing that I I certainly am thankful for every single day.
PSC Mami- Monika 54:17 Absolutely. And there's so much I feel like to say that statement. "I am still here," after these kinds of journeys, right that
Nicola 54:25 Yeah, exactly.
PSC Mami- Monika 54:26 I've also have had that feeling of "Yes. I am still here."
Nicola 54:30 Yes.
PSC Mami- Monika 54:31 Well, I am glad you're still here with us today. Thank you.
Nicola 54:37 Yeah, thanks for having me.
PSC Mami- Monika 54:41 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.