Kiersten, a child of a PSCer, has 2 healthy children after difficult pregnancies
Kiersten knew the dangers of Primary Sclerosing Cholangitis as a result of her father’s diagnosis. She faced her own diagnosis as a young adult and found that her PSC had a different progression. In the 3-year window that her doctor gave her, she had two pregnancies that included a lot of uncertainty, bed rest and ultimately, vibrant young children.
Transcript
Kiersten 00:00 Being the child of a parent who had PSC and how much different it was like I kind of know how hard it is emotionally.
Monika Aldarondo 00:19 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 wrongly gets the message to attack its own bile ducts. Over time, this leaves them scarred and blocked and in turn can shut down the liver, which is in charge of over 300 functions in the human body. To be diagnosed with this rare, unpredictable and incurable disease can rewrite anyone's life journey, including their vision and experience of parenthood. All the stories and information shared on PSC Mami are personal experiences and events. and should not be used as the basis to treat yourself or others. Today I'm talking with Kirsten, she is the first person I've spoken with, who knew about PSC before her diagnosis. Her experiences and her work in hospitals have given her an interesting perspective on living and parenting with PSC. She lives in Beaumont, Alberta, Canada with her husband and two children.
PSC Mami- Monika 01:27 What was your PSC journey? Tell me about your diagnosis. How did you find out this was something you were living with?
Kiersten 01:35 Well, mine's kind of interesting. Kind of doesn't happen very common way as uncommon PSC already is. My dad had PSC. He was diagnosed in 2000 and I want to say 3. He got very sick very quickly, and so had a transplant in September of 2004, I've known about the disease for a very, very long time before I was diagnosed.
PSC Mami- Monika 02:11 And how old were you when he was diagnosed?
Kiersten 02:14 Oh, I want to say 15 or 16. I think I was just starting High School. We learned about how rare it was. And generally, most of the time from what I understood had affected males and it's not genetic. And then yeah he was transplanted, successful transplant, one of the fastest discharges that the units of unit had ever had. Then after they did the biopsy of his liver, they had found out that he had a very early stage of the Cholangiocarcinoma. And since he had already been on the immunosuppressant, it had already gone through his whole body and he had ended up passing a few weeks later. So
PSC Mami- Monika 02:58 I'm sorry.
Kiersten 02:58
So, I was in Yeah, it was December 23 of 2004 that he passed away. So then, oh. So then from there, like we kind of forgot all about the disease other than what how it had just affected our family so deeply. And then in 2006, I was writing my first midterm ever for college. And I started to get extremely sick in the middle of one of the exams, and I had felt nauseous, like in the morning, I thought it might have just been nerves, I tend to be a bit of an anxious person. It just kept getting worse and worse than worse to the point where I have to leave my exam because it felt like my ribs were going to break. My stomach was starting to distend I started to throw up and I could barely speak, not two words from how much pain I was in. I called my mom to pick me up. Didn't think I really needed to go to a doctor or anything. So just kind of waited it out at home took at least eight, nine hours for this pain to subside. And then I kind of carried on and then they went to go pee in the bathroom and I noticed that my urine was like thick, orange, like orange juice in a way.
So I called health link, which is in Canada, it's our information line, you can call and talk to nurses 24 hours a day, and they advise that I should probably go into a emerge or at least try and get into my doctor that day. So I got in and they ran some bloodwork. They did a urine analysis. My doctor kind of started to see from my urine analysis results or whatever she saw in there and my bloodwork my liver enzymes are extremely high and bilirubin was climbing and she got me into the hospital really quickly and they just ran more tests but didn't really come to much conclusion then, but she had seen that I had liver disease in my history. So she got me into, she sent my results to my now liver specialist who was also my dad's doctor. And he looked at everything and kind of red flagged to me and instead of me waiting the six months to a year to get into him, I got into him within the week. And that's when he started running all the tests and they started showing markers and everything in my bloodwork.
At that point, early on, that was still in 2006. It was still trying to decide whether it was between PSC or sarcoidosis, or autoimmune cholangiopathy because you said those kind of all string together and then eventually they fork off and they have their own specific characteristics. I can't remember exactly when but he said this is definitely trending towards PSC. So he said, he didn't really want to believe it because he so very, very rarely hear about having two in the same family, let alone like a father and a daughter. So that was quite hard to hear and kind of the whole, like with lots of diagnoses of that everyone gets sick. It feels like your world is coming down. It's crashing around you thinking like I'm 18 years old. I, it's my friends are all going to bars and I am now dealing with this life altering diagnosis.
PSC Mami- Monika 06:47 What was it like when you heard the doctor, so many people when they get diagnosed have never heard of PSC?
Kiersten 06:56 I was my mom and she wrote Like, it was like going she had flashbacks of going through this with my dad all over again. She knew how this disease worked and what it does and everything that all the struggles and garbage that goes along with it. So I kind of didn't really fully understand the extent of it. It seemed to hit my mom a lot harder than I hit me at the beginning. And then I started learning about it more and then the emotional part started diving in. Yeah, it was very confusing not knowing what my life was gonna hold. I just I had a lot more questions of just what was I going to be able to do and because... I also, I also worked on the transplant unit at the hospital. I could see how full of a life you could live post transplant. So I also had that side of things. So I kind of knew that living post organ transplant, living a full life is possible and a lot of the people usually they go on to live very normal lives. And I don't know if I turned up blinders now that I think about it. I feel like I kind of put on blinders and was like, Okay, I still need to carry it with my life. I need to think about that a bit more.
PSC Mami- Monika 08:35 The challenges and benefits of youth, right?
Kiersten 08:37 Yes, yeah. Totally. Goodness. Yeah, that's very true.
PSC Mami- Monika 08:44 So how did your PSC progress?
Kiersten 08:46 Very slowly. I'm very fortunate that I haven't had much change until recently. So 11 years later, it's been, I have the occasional.. actually, at the beginning, I seem to have cholangitis flares a bit more. And then they died off for a few years, my enzymes would be elevating. And I was on the slow mountain app, but nothing that alarmed my doctor at all. So it's been a very slow process. Thankfully.
PSC Mami- Monika 09:23
Did you have a vision for motherhood before you were diagnosed? I mean, you were quite young. Yeah. Did you had you envisioned or did you have an idea of what you might want?
Kiersten 09:35 I knew I wanted a family.
Kiersten 09:38 I don't I didn't have a number in mind. I thought I had always kind of hoped for two children. And I grew up with a brother so I liked having another sibling around. And once I met my husband, it was talks of two or three. That was kind of all I had really thought about. I worked with children. To at the hospital that was way worth the most. So I knew that I definitely, I had that want amd everything to have a family and hoping that the disease wouldn't affect my chances of getting pregnant because on top of just the risk of having fertility issues and everything like that you could then to have like a liver disease thrown on top of that it kind of felt like I had more odds stacked against me.
PSC Mami- Monika 10:32 Do you remember talking to your doctors about pregnancy?
Kiersten 10:36 Yeah, my doctor brought it up quite early on. He had always said there's possibility that if I got really sick really quick, we could find do some hormone therapy and get some eggs and freeze them for the future. Then once I was married, and actually I think even before I was married, when he knew that, like my husband and I were most likely going to be staying together. He talked to us a lot about having children sooner rather than later. That was a actually, I think he brought up with us a lot just saying, at any point, this disease could take a dive and things could start to get worse. So if we had wanted to wait, we needed to reconsider that a little bit. And he said, at one point, I think it was right before we got married. He said, I can kind of see or predict how your next few years will go. I don't know how he knows. But he said that and he said, I will give you three years to have as many kids as you want. Whether that's one whether that's 2, 3, 4, if you manage to get twins or whatever he was, but I'm only giving you three years because at that point, he's like, we should have some good trials coming to Canada. I want you done childbearing, being of the childbearing stage, and breastfeeding and anything like that, so that we can just start and focus on my health at that point.
PSC Mami- Monika 12:18 What was that like for you?
Kiersten 12:20 I was very ready and really wanted to have a baby. So I kind of was like, Oh, all right, like off birth control hit go. And I wanted the to get pregnant very quickly, and really hoped I would. And then luckily I did. I think my husband felt a bit more of the stress. But I was ready to go and
PSC Mami- Monika 12:49 It's a very intense conversation before you get married.
Kiersten 12:51 Yes. And I think he and my husband knew how important it was to me. So he was like, Well, yeah, like You never know if it's gonna take a month or a year or two years, and we only are able to have one in that three years. So we might as well get going because we knew it was something we wanted. So it just gave us a starting point of not going, Oh, when should we? When do we start late? It just made that he just made the decision for us. That was one easy decision to not have to really think about.
PSC Mami- Monika 13:28 And did you have both of your children between those three years?
Kiersten 13:32 I did. Yeah. I have them both. I think they're 17 or 18 months apart. So quite quickly, I was pregnant with my second when my first was 10 months old.
PSC Mami- Monika 13:47 Tell me a little bit about your pregnancies. What were those like for you?
Kiersten 13:50 Um, I got pregnant very quickly, luckily, and we were very lucky that way. They started out. My son, which was my first Out normal, like, kind of the usual we won't see you until your nine weeks and then we'll listen to the heartbeat we'll do the screens. And then once my doctor kind of like my general practitioner thought, oh, maybe we should look into a bit more of how this could affect your disease. And, oh, I haven't read much about women with PSC being pregnant. And so she referred me to the high risk clinic at the Lois Hole Hospital for Women here in Edmonton. And I'm met with the high risk doctors starting at 12 weeks. And then, so that was the high risk ob gyn team. And then from there, they hooked me up with the obstetrics internal medicine doctor who's going to monitor the labor. Their job was to take care of me and the OB GS was to take care the baby. So the internal med doctors really were the ones that monitored my enzyme levels, my bile acid levels because I learned early on that those can if they're high they really increase your chance of having a stillborn baby if the pregnancy goes too long. Yeah, I started this meeting with those teams and having very regular bloodwork very regular ultrasound, and then the pregnancies seemed to or at least with my first it seemed like the enzyme levels started climbing the bile acid levels start climbing.
It was an emotional roller coaster of, 'we just want to get you to 30 weeks', like that was the ultimate goal with the obstetrics team Then everything is am I enzyme levels were creeping up. And my bile acid levels were starting to climb up a bit. And so the point where they were getting quite concerned of how quickly this was happening, and because of those bile acid levels been so high, I was starting to get extremely itchy. So I was quite uncomfortable, just being pregnant, and now having the itchiness from liver disease, as well as the higher bile acids, making the itchiness even worse, so the Urosidil all is supposed to help with that. It didn't really seem to be helping at all since this was such like a foreign territory for these doctors. She was calling other connections that she had kind of made since she became my doctor. She was calling doctors in Australia. Africa, London, all of which they've had maybe one or two experiences. There's probably I think she called when she called the lady in the states to, with having women that were pregnant with PSC, one of the doctors had mentioned that a drug called rifampin, which is mostly used to treat tuberculosis also is supposed to help with bile acid levels. But then I went on this rifampin dose, we started out low, didn't work, increase that and then increase the urso. And we kind of that was where they kept out. They said they did not want to go any higher on the drugs, though, just to monitor from there.
Kiersten 17:47 So then at the 24 week mark,and a bit before I was starting to get a lot of Braxton Hicks, so they brought me in, because I said they're happening throughout the day, and I was working full time at that point. So then I did an ultrasound and found that my cervix was almost completely gone. It was almost completely efaced, and I was going into preterm labor. So whether that was just my body, whether it was how my body was reacting to the drugs, whether it was like who knows with these pregnancies and everything that could be a million factors could have been the liver disease. They just read a loss of what was happening. So then they put me immediately on bed rest at 25 weeks, they gave me the lung maturity drugs to help mature my son's lungs faster so that if I did have a pre mature delivery, then at least we've given my baby a little better chance of surviving outside my womb. And so then I started getting home care every day, which relieved me in a way. I felt safer at that point. Although this was much, I was getting more, I hate the word critical, but that's what I was like. That's the only word I can think of. It was my health was getting more critical like as the days and weeks went on, but I did feel relief. I was able to see the nurse every day and they were making sure that my son was still alive. So starting at 25 weeks I was in there, getting all the measurements done to make sure that the drugs weren't affecting how my son was growing or his brain development, about like everything just making sure there was nothing funny going on. And then at 32 weeks, my enzyme levels got a high enough that they were just a bit too concerned. My bile acids were just getting too high that they actually admitted me to the hospital. So that if the I was having a few stress tests per day at that point, so if because the bile acids were so high, they were so concerned that the baby was going to be a stillborn. So they have a stress test me a few times a day and if something went and looked remotely scary, they would immediately rush me in for an emergency c section so that my son can have the best chance of living.
Kiersten 20:35 So yeah, once I was admitted, it just of course is the everyday emotional rollercoaster ride of. I was very torn between having a premature baby or losing my child. And at that point, I wish I would have taken I would take a premature baby like I've worked in children's hospital. I've worked in ICUs. I've seen babies born at 25 weeks that survive and do just fine. And so to make it to 32 weeks, I was more than happy. So I felt a bit conflicted with the doctors because I just wanted to have my baby out because then I could physically see that they were okay, that wasn't just a guess and test behind this curtain of my stomach, not letting me see into anything. And so then at 34 weeks, I think, trying to remember how long my labor was, I want to say like 34 weeks and four days in or five days, they induced me because I was beyond stressed. They had no idea what to do. So I went for an ultrasound quickly before like a abdominal, like liver area ultrasound before they induced me, they just wanted to check kind of pre labor and how everything looked. And I was starting to show a lot more scarring and some of my bile ducts so the radiologist, not that he really had a say in it that said, Okay before this liver gets even worse because of this high exposure of enzymes for so long, and this baby needs to come out. So a random radiologist, as well as my obstetrics team that all agreed as well as myself and my husband to finally deliver our son. They induced me. I started, I was already in preterm labor for the last 10 weeks so they I took onto labor very quickly and delivered a healthy baby boy, in the afternoon on July 17, 2013.
Kiersten 22:52 He weighed five pounds, eight ounces, he came out crying, screaming and Along with 15, I think at least people in the room with me and I see recessive station teams, the whole high risk team, residents, students, everything like it was a big relief that he came out so well and thrived very quickly. He didn't have any issues with the delivery. Yeah, he went straight to the NICU, the only issues we had was some blood sugars, which from what I understand can be fairly common full term or not. We spent 10 days in the NICU with him, just to get him growing and feeding well enough that we were able to move on and go home. And then I was just closely monitored after that, for how my house was doing and responding. My body crashed a bit and my enzyme levels went up even higher and higher and kind of peaked I want to save in the thousands. Pretty darn close. And then they started to taper off, which my doctor had expected because now my body was gonna start re regulating itself with like a different volume of blood and and not having extra stress on it anymore. Oh yeah, that was my first baby.
PSC Mami- Monika 24:26 What was that journey like for you and your husband?
Kiersten 24:29 Extremely stressful, very emotional. Lots of tears, lots of not knowing if we were even gonna meet our son. Really. And yeah, just the bile acid thing really threw us for a loop and just going for a week in between ultrasounds It was like so like, how's he doing? Like how are things going and You're funny, like 23, 22 or 23 weeks ago when I started feeling my son move that there so it's like a butterfly in your stomach it's fluttery and not very strong. So then to not have those personal like me feeling, how he was moving, and then waiting in between doctors tests, we just were like, is he moving enough? Is he not moving? How much more can my body handle? We have like, and I think my decision for my husband was, if my health starts declining, like what decision is he going to me? Like, wife baby, like, Who? If it got to that point? It was I think he really struggled with that for a bit because he
PSC Mami- Monika 25:52 Did you talk about that?
Kiersten 25:55 Well, I think he said like I would always choose you But I don't know if we ever made a formal I feel like we did not make a formal decision over health wise, if it came to the point where I was unconscious or so ill that it would be me or the baby. We're in the 30 ish week marks too. So if the baby was delivered and delivered alive, so yeah, I think he, I think she kind of felt a lot of the stress being the partner and the support person. For me, going through all this and in a way feeling helpless, that there's nothing he can really do except for be there to support and help. The needs I had as far as like being on bed rest and stuff. That's the stress with the mums. There's nothing we can really pass off to do. You're the only one that can grow the baby
26:59 After having gone through such an sort of intense first pregnancy, what was it like to think about getting pregnant again?
Kiersten 27:07 I knew that I could do it and make it through and have a healthy child. I was not excited for all of the constant doctor's appointments and tests and bloodwork and everything like that. But we were so focused on having this three years be successful, or this timeframe that my doctor had given us. And the fact that we really wanted our child to have a sibling that we thought, well, we might as well just go for it because in the end, my body recovered pretty well. Like my baseline once again became higher than my baseline blood levels were pre pregnancy, but nothing that my doctor had said, No, you can't go on he still said I was stable enough to have another pregnancy.
PSC Mami- Monika 28:01 Did you ever consider not having another child?
Kiersten 28:05 Hmm, I don't think so. I think we thought as long as my health was good then we try again. I don't remember ever wondering, not in our son was such an easy baby think he was a good eater, sleeper, all that so we thought, Oh, we could probably probably do this again.
PSC Mami- Monika 28:34 And what was your second pregnancy like?
Kiersten 28:36 Very similar, except I was quite sick. I had no nausea with my son. So, I had a lot of nausea with my daughter. And then the fatigue seemed even more with being fatigued in life anyways, and then having 10 month old then because my son was around 10 months old when I got pregnant, have small amounts of sleep just from breastfeeding through the night. I went on all the same drug same urso dose, same rifampin dose, I managed to make it to 27 weeks this time before I started going into preterm labor again. So then they put me off on bestrest again with the daily homecare and bloodwork and that was all the same, had the lung maturity shot. My OBG was just nervous again, just how this was gonna go and she kept asking me when I would be ready to deliver because she would be ready to deliver it any time. So at my 34 week appointment, we decided to induce me at 35 weeks so I made it a few days longer than I did with my son. Yeah, I went in for my induction, everything started going great a lot quicker of a delivery. But my daughter, when they broke my water, they found that she had a lot of there's a lot of meconium in the water. So they were a bit nervous about how she was going to do because she was she didn't move as much either, like her stress tests always took a fair amount longer. So she was born on February 12 at eight at night, and she came out in full respiratory distress. She wasn't very responsive. She was quite bluey purple. I got to see her for a minute before they have to take her off to the resuscitation room. And my husband went with my daughter, and he said it was kind of hard to watch them because they're having a bit of trouble stabilizing her. She was on c-pap for a while. IV antibiotics because she was showing signs of a bit of infection there assuming it was just from the meconium. Her stay was very different from my son's we were in there for over a month; she had a lot of respiratory issues. She was very sensitive to patch she didn't really like to be bothered much better than being fed. Like my son, she breastfed for a while but eventually started take a bottle.
The fatigue of being at home with a two year old or not even free two year old boy, as well as making trips to the NICU twice a day. Usually. We also live close to an hour away from that hospital. So it was probably about three to four hours of driving a day. As well as myself doing weekly bloodwork and checking in with my doctors and trying to keep myself healthy because once again, I have That surge of bad blood work and and elevated liver enzymes after her. So to be wanting to be there for my daughter and to be pumping milk and that my body was surely dealing with a fair amount, and yeah it was hard to balance like being a mom like and mom again and also trying to keep yourself healthy when you're kind of not the most healthy sometimes anyways, so yeah, that one. Yeah, she eventually came home after about a month and she was on caffeine. Just to kind of have like a daily liquid caffeine to keep her brain awake enough to remember to breathe. We kind of expected her to be our delayed child. She was late to feed late to obviously breathe just seemed a bit slower than our son did. Movement wise and that that to sure showed us wrong that we were wrong. And she was our walking at nine months running by 10 talking a mile a minute, just over one. She ended up being just this. She had a rough start that this extremely healthy, vibrant little girl, which is she still is now. Stubborn from the beginning, I guess he could say didn't want to breathe and wanted to be stubborn that way. And now she's just as strong willed and stubborn. If you haven't been hearing her screaming during this whole interview.
Kiersten 33:43 Yeah. Oh, two similar but different pregnancies. Um, I breastfed both my kids. And as soon as I was done breastfeeding my daughter which was I think she was 12 or 13 months. My doctor said Okay, we're close enough to three years, I want MRIs, I want bloodwork and your baseline is now increased yet again. So if you guys are fine with two I would say stop at that which with Kate's stressful delivery and pregnancy and all that we were very much happy just was to get a boy and a girl. So we're we're happy with that. We're supposed to be getting all these trials starting in Canada soon and now that I'm not going to be having any more kids and I'm not going to be breastfeeding or anything like that. I'm open and willing to do whatever he deems necessary to help treat my PSC and focus on that. So I want to Yeah, just really say that being diagnosed with PSC young was very crummy, and it was hard to kind of look into the future. But also being young, it gave me the opportunity to have my kids young. And also have a bit of say I'm useful, useful energy still to help me with these kids while combating the fatigue that comes along with this disease anyways. But now that I'm done, I just turned 30. So I had my daughter when I was 28. I can focus on my health now and get me healthy so that I can be the best mom and be around for my kids. So that I can watch them grow and be older and stuff and be as strong as I can. For if and when when this disease starts to go on the fast downhill and if I need a transplant, and all that Now I can move past and focus on me and my health.So that I can be the best mother I can be.
PSC Mami- Monika 36:09 Do you think having PSC has affected your parenting style?
Kiersten 36:14 I get frustrated that I do have to deal with this. As well as the stress of parenting. That means me mad. Emotionally, I think the PSC kind of affects me a bit more because I think about what, how will I deal with all this while having kid. I don't really know what I expected my parenting style to be, anyways. I'm a lot more high strung than I thought I would be and all that. I think I'm not as energetic as I would like to be. I do get tired quite quickly. Like yesterday. We had a fairly busy day. My kids are still raring to go and I needed to just have a nap and so I had to put them in front of the TV and I had a snooze, just to kind of help me get through the rest of the day. So yeah, I think the fact that I feel tired a bit, bugs me a lot. I did have a quite bad cholangitis attack in June. And it was horrifying to hear the kids yelling for me, like my husband is trying to keep the house quiet. Because I just like laying in our bed, I get a hot pack and ice and I just kind of work and breathe my way through it. And then if it lasts longer than like eight hours or so I usually go to the hospital or if I start noticing that I'm turning yellow. It was hard to hear that they had no idea and I couldn't explain to them what was going on. Like the husband just kept saying like oh, Mommy's not feeling very good. We just need to be quiet. We just need to let her rest. So that was hard because that they're so young, they can't really understand anything. They're only two and a half and four. But yeah, just having them around for that kind of made me feel sad that they have to witness that and see that. And it doesn't help that my son has a major phobia of hospitals. So I think about if I ever was admitted if he would even be able to come and see me. And being the child of the parent who had PSC and how much different it was, like, I kind of know how hard it is emotionally.
PSC Mami- Monika 38:38 Actually, are there any strengths that you feel like PSC has brought to your parenting?
Kiersten 38:46 Hmm, sometimes that's hard, but I tried to just embrace everything for what it is not knowing if I'm going to not be able to feel well enough. Take my kids to the park, or anything like that, or if I get super sick and I start missing out on taking my daughter to dance class and I don't know, I really just want to take it all in with them. Okay? I know you just kind of get this feeling well and even if you've been through tragedy with your family or anything, you kind of get that feeling like you want to live life to the fullest and stuff because I just feel like I have the higher chance of something going a bit more sideways. So I kind of since I am feeling well these days, I really love and focus on enjoying watching my daughter. Like today at tap dance, and doing her ballet, and my son doing gymnastics, and swimming, and school. Like I just started really yeah kind of take it all in. Because you never know when might not be well enough.
PSC Mami- Monika 40:06 What kind of support have you had needed/ wanted as a parent with PSC?
Kiersten 40:12 I have found amazing, like mummy friend that knows all about my health and has taken the kids to watch them if I need anything and whenever requires hospitalized doctor's appointments. I feel like just having that you see the term link village a lot in mom groups and blogs and stuff. I think just having a group of core women that you trust and support and can lean on during anything like whether you have PSC or you have another disease like I think that's just super important. Just having those core supports with family and friends and obviously my husband is an amazing support and my mom will always check and see if I need a day to rest or for her to take the kids for the day.
PSC Mami- Monika 41:18 Is there anything you would tell someone who's sort of at that stage of wondering whether they should enter parenthood, having been diagnosed with PSC.
Kiersten 41:27 If it's something you want, you do it. And you will find a way to deal with the kids. They light up your life they as much as you can be tired and not feeling well, and stuff like that. They will. They will always brighten your day. And if it's something Yeah, if it's something you want, do it whether you carry your own or someone else carries it for you, or you adopt, really I think it's very possible to have children and a family and still have PSC.
PSC Mami- Monika 42:11 And is there anything I haven't asked about that you want to share?
Kiersten 42:15 No, I've seen this come up a few times on the PSC like the, the women's page is like the genetic component of it. That very much still weighs on my mind a bit. I think just because I had that familial connection with my dad having it and then me getting it. I have asked my doctor, I think he's annoyed of me asking because every time we go in, I'm like, should we be doing genetic testing? Can we see with my children have this or he's, he assures me that it really is not like a genetically passed on things. It's random, although I have seen different things on the page, but if that's something that concerns you, at least my doctor has told me that it's not something to really be concerned about. But I guess each doctor says their own things, I think there's some out there that say you can't get pregnant have babies. And you can.
Kiersten 43:28 Yeah, that's just something I think I'll always be on the lookout for. Like if my daughter has a distended stomach and she's crying a lot. I usually start to panic a little bit. But then she has the flu or something. Yes. Yeah, the genetic thing kind of worries me sometimes. But my doctor is so so wonderful, and I trust him with everything. And yeah, he's assured me that the chances are that may pass something on genetically to my kids are very slim to none.
PSC Mami- Monika 44:09 Well, thank you so much.
Kiersten 44:11 Oh, you're welcome.
PSC Mami- Monika 44:13 Kiersten was diagnosed young, and I'll be posting a bonus clip from our interview where she talks about what it was like to be diagnosed in her early college years.
PSC Mami- Monika 44:23 Next episode, you will hear from Jessica and how her life saving procedures led her and her husband to choose a life without children of their own. Gracias Mami's for listening. I'm sorry you're here but I'm so glad you found us. Connect, share your story and find resources at PSCMami.com and please subscribe rate and review the PSC Mami Podcast on your favorite podcast platform to help others find us.
