Katrina has second child and peace of mind post PSC diagnosis
Katrina’s medical journey began at 15 with her Ulcerative Colitis diagnosis, but as she found experts that provided much needed relief, she was diagnosed with Primary Sclerosing Cholangitis. She discusses her shift in outlook, her support system, her second pregnancy and what role PSC plays, or doesn’t, in her day to day life.
Transcript
Katrina 00:00 I just it's hard to talk about it because I don't, I don't think about it a lot.
PSC Mami- Monika 00:15 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, this leaves them scarred and blocked and in turn shuts down the liver. Many people learn they have PSC through testing for other reasons. Relevant to today's story is that 70 to 80% of PSC patients also have either ulcerative colitis, or Crohn's disease. being diagnosed with too unpredictable and incurable autoimmune diseases can rewrite anyone's life journey, including their vision and experience of parenthood. All stories and information shared on PSC Mami are personal experiences and opinions and should not be used as the basis to treat yourself or others.
PSC Mami- Monika 01:13 Today I'm talking with Katrina, we connected online through PSC support groups. I have witnessed the loving joy with which she has shared her photos as her family grew from one child to two and was curious to know more about her day to day life as a mother. She lives in Parkersburg, West Virginia in the USA with her husband and two boys.
PSC Mami- Monika 01:34 Tell me a little bit about how you're diagnosed with PSC.
Katrina 01:39 I was diagnosed with ulcerative colitis in September of 2007. And then I had a total colectomy done in March of 2008. And I had a j pouch formed and everything was fine after that. I wasn't stick anymore. I was my health was getting better and better. I actually ended up getting pregnant in 2012 and had my first son. And after his birth was when I noticed that I was kind of getting sick again. I had symptoms of colitis all over again. And it was kind of scary for a while because we thought maybe it had turned into Crohn's. But all of the testing came back that I didn't have Crohn's, everything looked fine. I was just getting more and more sick. And I was getting kind of annoyed with my doctor because I didn't feel like he was taking me seriously. So I asked for a second referral. He referred me to Beauchesne up at Cleveland Clinic who is an amazing j pouch surgeon, and within a few days of seeing him actually found out that he pouch had failed. So I found that out in September of 2014. So I've been two years of being sick and having all these crazy symptoms. We actually scheduled my surgery the same week that we found the news out because I was so ready to just get my life back. We opted for a temporary ileostomy again, because I knew when I had my bag in the first time that I was healthy. And September of 2014 I had the surgery and I was actually going back for my six week checkup and I gave my surgeon a huge hug. And I thanked him and told him that I was so grateful for for him doing this because my previous surgeon actually would not give me an ostomy he told me that I was too young, which is insane because at the time I was 24. This surgeon in the Cleveland Clinic when he gave me my j or my ileostomy, my health just rapidly increased. And so I went for my six week checkup and everything was fine. I was doing wonderful. And then I get a call from his physician assistant.
She said that my liver enzymes looked elevated. So she wanted to do an mrcp to possibly rule out PSC. This is the first time that I had heard of it. So of course I go on Google, which is a horrible idea when you're looking up something like that, because there's not a whole lot of good info about it. Everything I was reading said, you know, you don't live past 10 to 15 years after you're diagnosed. And so in my mind, I'm like, Oh my gosh, this is a death sentence. So I had to wait two very, very long months to get the mrcp. So I go and we had to spend the night at the Cleveland Clinic because it's about a three hour drive. I go and I have a done and then I had to stay the night and wait the next day to get the results. But I ended up getting sick. I don't know it was a crazy how it happened and I just I was puking and it was awful. So we ended up going to the ER and I missed my appointment to get the results of the mrcp while we're sitting in the ER waiting room. Yeah. While we're sitting in the ER waiting room. I actually got the email from Cleveland Clinic my chart with the results and I just got the stick feeling and I couldn't bring myself to open it. So I was like, I'm just gonna wait, we talked to my doctor, he said, we could come in after I got done with the ER appointment, just pop in and get the results that way. And I ended up having to like be hooked to fluids, and it was taking a lot longer than I thought. So I'm sitting in the bed. And I was like, I'm just going to open it and see what it says, though I opened it, and my mom was there with me at the time. And there's this huge, long list of all these big words, and I'm trying to like, you know, make sense of it all. And get to the bottom where it says results. And it said, results compatible with primary sclerosing cholangitis. And I looked at my mom and I was like, I think I have this. The ER doctor comes in. And I was like, can you just read through this and tell me, you know, if it's saying that I have PSC. And so he reads through it and he's like, yes, it looks like you do. And I just lost it. I just started bawling. Like that's, that's what I remember most about it is I just had not stopped crying. And I looked at him and the first thing I said was, so you're giving me a death sentence. I mean, that's in my mind what I thought that meant when you got diagnosed and PSC. And he couldn't answer any of my questions, because that's not my specialty. And he told me, he could give me a pamphlet on it. But I politely declined that. And it was just kind of a blur from there because I just, I was crying. My mom was crying. She had to leave the room. It was just, I hate reliving that moment, because it makes me so emotional even now. Yeah. Because it's not.
Katrina 06:43 Sorry.
Katrina 06:55 Just really hard reliving that moment, because I never, never expected it. And it wasn't something that I was even aware could have happened to someone. But yeah, let's say that's the way that I kind of found out and it's, it was crazy and unexpected and emotional for sure.
PSC Mami- Monika 07:13 What were your thoughts? Do you remember? As a mom?
Katrina 07:16 Oh, gosh, yeah. I don't think about it a lot. Like I don't, I don't let it you know, control my thoughts anymore. For the first year, it was really hard. Just because, you know, it's such an unpredictable disease, and it affects everyone differently. So I didn't know what to expect, I didn't know if I would get sick very quickly. Because when I got diagnosed with colitis, it just literally hit me out of nowhere. So that's what we were thinking with PSC, it's just gonna come with a vengeance out of nowhere and just kind of take over. So I was really, really worried about, about, of course, dying, because that's what was on my mind. But I had in my mind of what PSC was doing to me, it was slowly killing me. That's pretty much what you find online is that you don't live very, very long life, though. It was scary, for sure, thinking that my child would grow up at the time, he was three years old. And you know, thinking that I would be sick for most of his childhood. And then you wouldn't have a mom anymore. It was was very scary. But I have a really good support system. I actually, I live right beside my mom and my dad. And my husband is very supportive, and my brother lives right down the road. So we have this really close bond. So I knew if anything were to happen, that everything would be fine in the long run. But it's scary to think that you're not going to be there possibly for your child, for him to grow up.
PSC Mami- Monika 08:51 How do you think you worked through that? Because you're saying it was really hard, especially the first year did anything shift for you?
Katrina 08:59 I was very proactive and getting like lab work done. Because to me, that gave me peace of mind to be able to see on paper that my liver levels weren't necessarily as bad as you know, somebody else. And I think in my mind has not defined my health for a while because I thought that what your labs looked like look like on paper reflected what that looks like inside of your body. And I came to find out that wasn't necessarily true. But I was getting lab work every three months between a local doctor here and then going to the Cleveland Clinic every six months to see a hepatologist, so I found a really awesome support group online called PSC Partners Seeking a Cure. Just within talking to that community of people who have PSC. I realized that there are people who are living 10, 20, 30 years with PSC and they're not getting sick like I thought they would. They're, they're not dying. And it's actually it's not a death sentence at all, though I think in realizing that it helps me to really see the full picture, it's not something that I have to dwell upon. And then just time honestly, time I was in denial for so long that I had it, it was really hard for the first year like, I cried a lot, just randomly, when I was think about it, I don't know, I'm not one of those people that just gonna bury something in the back of their mind until I have to deal with it.
Katrina 10:37 I've been pretty lucky to be asymptomatic. So I think that's helped to just that I can not necessarily like think about it all the time, it doesn't control my life. I've come to terms that I have it now. So I think just with time and knowledge that's really helped me kind of get over the fear of having it.
PSC Mami- Monika 10:57 It sounds like you had your first child pre diagnosis. And then had your second after. Sort of what was, can you talk a little bit about your process of having your second child and the similarities or differences or just kind of go through that process.
Katrina 11:14 My first child, it was with a j pouch, and his pregnancy was very rough on me on my body. I didn't know at the time that I was sick. And I didn't know that my J pouch had failed. So I actually got diagnosed with HG, he, when I was pregnant with him, because I couldn't keep anything down. I was always in the hospital getting fluids taking Zofran. He was born healthy. And he's thriving. He's a wonderful five year old now who is super healthy and smart and intelligent and perfect. And that was pre diagnosis. And then after I had him, started getting sick, and then found out that I had PSC, which was unrelated to my sickness, actually. And then I started thinking about how you would be an only child if we decided not to have another one. Because at first, when I was diagnosed, I was like, there's no way that I could, you know, bring a child into this world knowing that I have this illness that could potentially take him from me. But that's a silly thought, because no one's granted another day. So in realizing that I wanted another child and I actually had baby fever like crazy. Everyone around me was having babies, my brother was having a baby, my friend was having a baby. So I met with my whole team of doctors and specialists, we went to an out of town fertility specialists. We got their opinion before we even started trying just to make sure that, you know, they thought it was a good idea. And that it was safe. And they all gave me the go ahead. And we started trying and ended up taking a lot longer than expected and took probably close to two years of tracking ovulation and charting temperatures and everything that we possibly could do. Naturally, I had an HSG to roll out blocked tubes. And luckily, my ob is the high risk ob so I didn't have to go out of town for that. But I ended up just getting really frustrated with the whole process of trying for another one and decided that I was just done. You know if it was meant to be it would have happened. It was so stressful. And it was emotionally draining. After that two years of trying. So we just sat down. And two months later, I ended up getting pregnant. It was very exciting. That pregnancy. My second pregnancy post diagnosis was actually perfect. My health is wonderful with my ostomy. Now I'm no longer sick. I was not sick at all my pregnancy, he was growing like crazy. It was just it was perfect. It was a perfect pregnancy. And I had a completely natural birth. We hired a doula we took a birth class. And it was I mean, it was just all around perfect. So it's crazy how, how different my births were. My first one was an induction due to low fluid, and not enough knowledge on my part, to be able to advocate for myself what I wanted. So that's why it was really important for us to take a birth class this time around and hire a doula. And it was it was such a good idea. So highly recommend that if someone is wanting to advocate for their own birth.
PSC Mami- Monika 14:45 So we all kind of have visions of motherhood and pregnancy and what that's going to be like, do you think your diagnosis with PSC affected that at all? Or was it just kind of something you were able at that point to put on the backburner Because things were going well?
Katrina 15:01 Everything has been going really well since my ostomy surgery, health wise that I took a good year of just coming to terms with the fact that I have PSC, lots of crying, lots of anger, lots of whys to get to a point where I'm finally okay with it. So by the time I got pregnant, I had learned to kind of just live with the fact that I have PSC. And that's not something that I think about, you know, daily or let you know, control my thoughts or my mind. I don't think it had any effect on my pregnancy. But just the fact that we had tried for two years, and then finally got to a point where I was like, done trying. And, you know, trying to come to terms with the fact that maybe Barrett would be my only baby. And then it surprisingly happening was just such an awesome thing to experience that, that joy just completely overrode everything.
PSC Mami- Monika 16:02 Have you seen your diagnoses of either PSC or UC having affected your parenting style?
Katrina 16:09 Actually, it's affected it tremendously. I had my first son hadn't quite found my voice yet, I was still really shy and backward. And when you have children, you can't be shy and backwards, you have to stand up for them tremendously changed my outlook, because I have a more natural parenting style, I guess you could say, a more gentle parenting style. It just changes your outlook on parenting, because you realize the smaller things truly do matter. And you can we can take that into view instead of, you know, you're getting upset about the little things.
PSC Mami- Monika 16:53 What were the conversations between your husband and you around parenting and having kids and being sick? Was there anything that you guys struggled with or that you felt you were really on the same page about?
Katrina 17:06 So we've been together? Since I was 14, we started dating when we are just babies. And I got diagnosed at 15 with Colitis. So we had been together for about a year, when I was diagnosed, my mom looked at him and she goes, you know, this is gonna get really bad. So if you're going to get out, leave now. And if you want to stay, that's fine. But you're not going to stress her out by you know, staying halfway through her, you know, bad days, and then deciding you don't want to do it anymore. So he stayed, thankfully. And here we are, almost 12 years later, he has literally gone through everything from the very beginning. I think he's kind of learned to, to live with my bad days, and is able to notice, you know, when I'm not feeling well, thankfully, that doesn't happen often. I wouldn't I don't, I don't see myself as sick. I don't call myself sick. And then you know, something happens and like, I'm not feeling well. And I have to go to the ER for fluids. And I'm like, oh, maybe I am sick. I think that's just part of like, being able to shove it in the back of my mind. Since he's been there from the very beginning. I don't I don't think he really sees me as being sick, because I don't view myself as being sick. And I don't talk like I'm sick. If that makes sense. We just kind of live with that together. And, you know, he picks up the slack if I'm not having a good day, and he is wonderful about it. So I don't think I don't think we really had a conversation about how it would affect it other than like, potentially down the road, when I get worse, you know, and that I don't think that's something that anyone can really prepare for, because we don't know what to expect. But I think it's really hard for him to talk about it. Because every time I bring up another person's story that I've read about, you know, getting a transplant or possibly passing away and you know, they have children, he just kind of shuts me down and doesn't want to talk about it and says, you know, we'll deal with that when the time comes. I think that's kind of his way of dealing with it is he just doesn't want to talk about it.
PSC Mami- Monika 17:42 Is there any advice you would give like if you met someone, a young woman who had just been diagnosed?
Katrina 19:27 I think just finding someone that you can relate to who has been through it before as critical for at least it was for me, there's a local woman who had PSC and she actually had a transplant. I was texting her, you know, any questions that I had or concerns she was always there. So that's, that was one thing that I loved. It's such a hard thing to come to terms with. I think it's really important that you just let your yourself feel whatever you're feeling at that time. Don't try to suppress emotions. Because I did that for the first year, I was completely in denial about it. And I didn't allow myself to just kind of break down and take everything in. So I think that's important is to just let yourself feel, whatever you're feeling at that time. They were probably, oh my gosh, I probably cried like once a month of how to when, when I was diagnosed that after that first year, for the last three years that I've been diagnosed, on the day that I was diagnosed, I have this crazy breakdown, and I would just cry like all day. And last year, it was the first year that I actually didn't do that. And I think it was because I, I've been able to, like help myself, kind of heal. And it's okay to be in denial, it's okay to not want to, you know, think about it. I don't, I don't think about it on a daily basis. It's not something that controls me. So I'm just reading about other people's stories have helped me to realize, you know, what I was googling isn't necessarily the truth for every everybody.
PSC Mami- Monika 21:26 Would you say that being diagnosed with PSC, and UC and the things you've gone through? Are there any things that have brought strengths to your parenting?
Katrina 21:36 You know, I wake up every day, not expecting to just wake up tomorrow. And when you go through an illness, or a diagnosis, like PSC, it kind of changes your way of thinking, or at least for me, it did. And you really realize like how how much people take for granted. So you know, all the extra kisses all the extra hugs and snuggles and I love us and you know, being able to say goodnight each night, that's I make that a priority now, where if I wasn't diagnosed with something like this, I don't know that it necessarily would have been as important to me as it is now.
PSC Mami- Monika 22:23 Any challenges or fears that you feel are made worse or harder by your diagnosis?
PSC Mami- Monika 22:29 I definitely fear, getting more sick, getting more ill. I'm pretty asymptomatic. Now since I've had Cooper, my youngest, I've probably had at least 10 times where my liver just hurts so bad. And it lasts for like an hour and a half to go lay down. And it actually didn't pass one time. So I ended up in the ER. And I'm exclusively nursing him. So I had to take him with me. And I was laying on the bed nursing him and I had to get some tests ran and they found out that a gallstone had lodged in my bile duct, but it had broke free. And so that was what was causing it. So I'm having issues now with stones getting lodged in my bile ducts are inflamed. You know, we kind of take that as it comes. And I think that's all you can do when it comes to parenting with an illness as you just take each day as it comes. But I definitely fear getting more sick, you know, possibly being transplanted and missing out on that time for recovery.
PSC Mami- Monika 23:43 And is there anything that as you'd have thought about this interview? You wanted to share? But I haven't asked about,
Katrina 23:51 I don't let PSC control me. And I think that's really important to keep I keep like reiterating that because in the beginning it did. For for so many months, it was in the back of my mind. And I kept trying to suppress it. And I kept trying to you know, keep it in the back of my mind and not think about it. And it didn't control me for a long time. Because I was so terrified of, of what to expect. I didn't know how quickly I was going to get sick or you know, I just assumed that everyone with PSC ended up with a transplant actually read the other day that there's a 40-year old who was diagnosed at 13. And she works a full-time job and she she has not had a transplant after all this time, so that kind of gives me hope that you know, it's not going to happen anytime soon, but if it does, I'll be prepared as much as I possibly can. I just it's hard to talk about it because i don't i don't think about it a lot. Yeah, like it's not something that is you know, a daily thing for me.
PSC Mami- Monika 24:55 But it's really great to have somebody say that right? You can have this and not think about it.
Katrina 25:00Yeah, Yeah.
PSC Mami- Monika 25:03That's an important story to tell. Thank you, Katrina for your perspective and encouragement for self care. And gracias mamis for listening. I'm sorry you're here, but I'm so glad you found us. Visit our podcast website at PSCmami.com. That's pscmami.com. For resources, a link to share your story, and links to subscribe to this podcast on all your favorite podcast platforms.
