Alicia finds purpose in her toddler as her PSC progresses

Alicia was diagnosed with Primary Sclerosing Cholangitis almost 20 years ago. Her PSC has been relatively quiet until this last year. Alicia shares how she deals with her new reality as she cares for her 22-month old daughter.

Transcript

Alicia  00:03 You know you can't live your life differently because you are waiting for this tragic thing to happen.

PSC Mami- Monika  00:12 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 it own bile ducts. Over time, inflammation leaves them scarred and blocked, and eventually shuts down the liver, which surprise 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. A reminder that all stories and information shared on PSC Mami, our personal experiences and opinions and should not be used as a basis to treat yourself or others. An invitation to you. Yes, you. If you're a PSCer yourself or a parent of a PSCer, what is your story at the intersection of PSC and parenting, has PSC made becoming a parent impossible, more challenging, or was it an uneventful journey? I believe that our stories are connections that we can make across time and geography, as we all figure out what PSC means to us. Each story has the power to make someone or many people feel less alone. Your story has that power. Contact me to talk about the process. And yes, you hold control over the story and how you'd like it to be shared. contact me at pscmami@gmail.com or on the podcast website at pscmami.com. I look forward to hearing from you. Now let's get to today's interview with Alicia.

PSC Mami- Monika  02:19 Today on PSC Mami, we have Alicia. I'm so excited to talk to her. She is in Portland, Oregon, and has a little one. Welcome, Alicia.

Alicia  02:31 Thanks for having me. We've been talking about doing this for the past year. And we're finally doing it.

PSC Mami- Monika  02:37 We're finally doing it. It is time.

Alicia  02:40 Yeah.

PSC Mami- Monika  02:40 Tell us a little bit about your PSC journey.

Alicia  02:44 Well,  I was diagnosed as a kid. I was I think in like fourth grade and had elevated liver enzymes. And it took them a while to figure out what exactly was going on, I think I was officially diagnosed in 2001. That's in like, 10th grade at that point. So I've always just had this thing. And I was pretty asymptomatic. And you know, it wasn't something that I had to think about every day of my life. You know, it would come up when I would have doctor's appointments or, you know, meet with a new doctor, and they would spout out some statistics about my prognosis and needing liver transplant 10 years and all of that. And

PSC Mami- Monika  03:33 How is that to hear that?

Alicia  03:35 It was, it was funny, as a teenager, I was like, oh, somebody's giving it to me straight. Like somebody's finally telling me the truth. And then my mom was just shocked. Like, why would they say this to you? And but I really I just took it to be the truth that this was gonna be out 10 years and I'd need transplant. They didn't really talk about what that meant or anything like that. And I was diagnosed with the UC at the same time. So they were like, you need a liver transplant and you're gonna have a colectomy. You know, it's just like, this is how it's gonna be. But when that stuff wasn't happening, I was pretty normal. You know, everyone saw something would pop up. I had a weird thing with my gallbladder for a number of years and finally had it removed in 2011. I sprung a bile leak and I got to like take a ambulance ride from one hospital in Olympia Washington up to Seattle and was finally connected with like real hepatologists up there. And it's like oh, I really do have this, this thing. But then they come back down and they just continued monitoring and I was living a pretty normal life. And that's h ow it's been until like, really, really recently.

PSC Mami- Monika  05:11 So how long ago was that diagnosis? I know you said it was when you were young.

Alicia  05:16 Yeah. So official diagnosis was 19 years ago.

PSC Mami- Monika  05:23 And what began to happen a couple years ago, he said it started and becoming present in your life.

Alicia  05:28 So for the last year, the liver enzymes have been going up, and I didn't even really realize how I just have been so stable, and I don't really feel any different. But then, in the last couple of months, they've just been going up and up. And so like, in June, I finally had a, an actual meld score, like before, it was just a normal range. And like, Oh, it's, it's not bad. But, you know, we're gonna have you evaluated for transplant, mostly so you could just meet that team, and they know who you are. And then they started doing tests, and then the transplant team rejected me. Like, you're not sick enough we're not going to talk to you. And then a couple months after that, then, my bloodwork was worse, and my meld had gone up four points. And so they were willing to talk to me at that point, and then the doctor thought, Oh, well, I don't expect to jump again. You know, just because you jumped four points, and in a couple of months, I mean that's not how I going to go, but it is it is continuing to go up and up and up. So, um, you know, it's actually present and I am going to be evaluated now, and probably listed and who knows how long I'll be on the list. And but that, you know, I always knew that it was something that could happen, but because I've just been stable for so long and really like it. This is so on the back burner. And I thought I'd have a few more years before really having to think about it.

PSC Mami- Monika  07:30 Yeah. And you have a little one, can you tell us a little bit about?

Alicia  07:37 Yeah, so she is almost 23 months old now. And she's awesome. She's a lot of work, but she's like, so cute. And I don't know how I would have gotten through really anything the last two years if I didn't have her. In a lot of ways, you know, she's what I always wanted. I feel like with this PSC diagnosis, like all the things that I enjoy in life, and all the things I want out of life kind of don't jive super well with, with PSC.

PSC Mami- Monika  08:24 Can you give us an example?

Alicia  08:26 I mean, like, I am a more pleasant, friendlier person with alcohol. Um, you know, so not being able to do

PSC Mami- Monika  08:40 PSC does not do well with our social life in alcoholic settings.

Alicia  08:45 Yeah. Um, I, you know, want to travel and I mean, I did do a lot of traveling as a teenager and in my 20s and but as this progresses, it's, you know, it just doesn't work to take off and go live in another country for six months and not have health care. It just, so it was always kind of like, well, either I need something else to make this life worth it to me. Or I'm going to kind of just ignore the fact that I have PSC and I'm going to go do what I want and travel and and live a really fun life. But if, but, or I could have a child and she can be my reason to fight so hard. You know, I really need like something to keep me going make me want to go through having a liver transplant and you know, something that makes me want totake care of myself.

PSC Mami- Monika  09:59 What was Your like internal conversation or conversation with your doctors or when you were thinking about getting pregnant.

Alicia  10:07 So I first talked to them, probably in, like 2013 or so was the first time I'd really talked to them about it and like, oh, you're stable and healthy, and if you want to get pregnant, I don't see any reason why you shouldn't do that. And that's kind of all they told me. And then it but sort of, as I approached 30, they were like, well, if you if you want to do this, you should really, he's really hurry up and do it. But it wasn't really so much about my PSC. So I thought I had I mean, everyone's blessing. And so when I got pregnant two years ago, and, and was pretty much immediately diagnosed with intrahepatic cholestasis of pregnancy, ICP. I was like, What is this thing? And why did nobody warned me that this was a pretty common?

PSC Mami- Monika  11:09 Can you describe it briefly, for folks who may not know what it is?

Alicia  11:13 Yeah, it's, it's funny because I was so like, obsessed with it when I had it, and now that I don't have it anymore, and I have a healthy child, I could care less. So ICP, high bile acids in the blood, and it does something or other to think maybe the placenta or something, they don't really fully understand it as a disease. And it causes stillbirth.

PSC Mami- Monika  11:45 And this is something my understanding is that also women without PSC might have as well, right. So just in the

Alicia  11:53 Yeah,

PSC Mami- Monika  11:54 So like you're saying, the data and the understanding of it isn't, to my knowledge either, very well understood. So there's sort of that heightened monitoring.

Alicia  12:02 Yeah. They, yeah, they don't understand. They don't really understand how it relates to PSC. Certainly, there are plenty of PSCers that don't get it when they're pregnant. It's it's not a sure thing, but it's a really stressful thing to have. Because there's just there's nothing you can do about in. The treatment is urso. Okay, well I'm already on that.

PSC Mami- Monika  12:31 I am only laughing because I had the same exact experience. Yep, I'm already on that.

Alicia  12:38 Yeah. Got to experience prior to having any other kind of cholangitis attacks, what extreme itching is like, has that so that's the that's like the main symptom of it. And that's how they generally discover it. And most people is, it's here, really, really itchy in your pregnancy. Yeah, you're like super, super stressed out. And it's only going to get worse towards the end of the pregnancy, not really sleeping, because your're itching so much. And so the only treatment that they have, well, the way that they resolve it is because there's a higher incidence of stillbirth, the closer you get to 40 weeks, and they just have you delivered early. So then you have to, like weigh the pros and cons of having a preterm birth versus carrying full term and, you know, potentially losing the baby. I had second opinions, and they are like 36 weeks, and my doctor was like, 38. And I'm like, No, the better hospital says 36. We're gonna do 36 weeks, and I had to argue with them the entire time, and really fight for 36 weeks. And I did like 36 weeks, on the day, I was induced, which means my daughter was born on Christmas. And everyone thinks that I'm insane for scheduling that. But I was just like, so scared and so convinced that I was going to lose her at the very end. And then I gave birth and suddenly, like that whole part of my experience just went away. You know, it's like this thing that stressed over for so long, like just didn't matter anymore.

PSC Mami- Monika  14:40 I remember feeling like my peers who were pregnant. Had this approach of like they got they started getting scared towards the end that they could take care of the baby. They sort of like didn't want and I was like No, no, I've heard that the baby is still in me like

Alicia  14:56 Yeah, yeah

PSC Mami- Monika  14:58I need the baby to be out so that he's safe.

Alicia  15:01 Exactly, exactly. It's safer on the outside. Yeah, and I just said, I wasn't worried about so many other things, that the pregnancy I was just, I just wanted my baby to be born alive. That's what I was looking for. And I was diagnosed with ICP really early in the pregnancy because they just like checked my blood for bile acids, for fun knowing that I had PSC, and they were already really, really high. And so before I had any other symptoms of it, I got this diagnosis. So I was stressed out the entire pregnancy. So it was Yeah, it was just like a relief to finally have her. But I'm still really annoyed. Like, why didn't any doctor mention that this was even a possibility. Like, I just had no idea.

PSC Mami- Monika  15:59 Do you know, if your OB had seen folks with PSC before?

Alicia  16:03 Yeah, yeah, my OB that was referred to my actually by my primary, she referred me to this guy, because she had another, she had another patient with PSC who was pregnant. Like, how is that possible? There's not many of us. And can you like, drop my name? If you know, like, here's my name and number. Can you just like, give this to her? Cause I'd love to meet her? Um, yeah, I don't I don't know if she had ICP as well or not, but

PSC Mami- Monika  16:42 It's just one of the challenges for those of us of childbearing age, right. Having folks who followed people with PSC.

Alicia  16:51 Mm hmm.

PSC Mami- Monika  16:52 And how has it been having a small child, as you're working through sort of these new adventures with PSC, let's say,

Alicia  17:04 It's hard cuz I, you know, I've always known that it's gonna happen, but like I said, I, I thought I had more time. And so in my head, I was like, I have to have a baby right now. Because I want to be I want her to be, you know, seven, or eight or something before I have to do anything that's going to, uh, you know, before I'm sick Mom, I feel like, that's, that's not what's going to happen. So yeah, that's, it's pretty stressful to have to think about, you know, but she is what keeps me going. But I do have all these other worries, you know, it's not like liver transplants are always successful. And it's, you know, a lot of things can happen now. And here, we have this, this little one, and what are we gonna do if I'm not around?

PSC Mami- Monika  17:59 Do you engage in those thoughts a lot? Or do you feel like it's something you avoid thinking about?

Alicia  18:04 I try to avoid thinking about it as much as possible. But you know, it creeps in sometimes. And, yeah, I mean, it's not like I can do anything about it. But I do find myself thinking about like, Okay, I need my partner to get a really good life insurance. Because what if something happens to him, and then I'm just like, sick mom by myself. Like, I that's not going to work out. So like, the things that I can I'm such a planner. And I can't plan for anything with PSC. But I can, like, try to, you know, fix some of the things on the, on the sidelines that I maybe can plan for?

PSC Mami- Monika  18:46 Do you think it's affected your parenting at all? Or any ways that it kind of creeps in?

Alicia  18:52 I'm not sure. I think it might when I'm, when she's a little bit older. I could definitely see what yeah, if she's older, and we weren't in the middle of a pandemic, I could see, you know, trying to, like, do a lot of things with her, you know, take her places and show her things. Make sure that he had a lot of quality time now. But as far as like day to day parenting, I don't know. Probably adds to like my general stress level. And I feel like I'm always kind of maxed out and I wish I wasn't. So that probably contributes to parenting that in ways that I'm not particularly happy about

PSC Mami- Monika  19:43 What are some of the things you hope for her?

Alicia  19:46 I hope that she's healthy, and that she doesn't have to go through any of this stuff herself. I hope that she learns how to be really independent and through all of this too. yeah, I just want her to be like a little fierce firecracker.

PSC Mami- Monika  20:02 Parenting toddlers takes a ton of time and energy.

Alicia  20:07 Mm hmm.

PSC Mami- Monika  20:07 How do you either through your own energy or supports? Like, how do you make it as a mom of a little one? With the chronic conditions you have?

Alicia  20:19 Oh, so my mom lives next door to us now. And I don't know what I would do without her. And so I, I rely on her for for breaks, and I'm still working part time. And so she's really essential to me getting stuff done. But I also go over to her house with my daughter to, like, take some of the pressure off so that I don't have to be totally on. But yeah, I, there are days that I'm just like, well, I don't really want you to have so much screentime because you cry when I take away the iPad, but I guess this is what we're doing today, because I just can't do anything else. You know, the fatigue part is an interesting one, me because I've, I've had this for so long. And like I just I don't even there are days that it's harder. But like, I think my normal level of fatigue is like I mean, if that's just my normal is just like, it's just slightly fatigued all the time. So I don't really notice a big difference in my level of fatigue now versus before. But I just, I have like a certain number of hours in the day. And then I'm just, I'm just done. And I just can't. And I have no idea if we were living in normal times. Like I can't imagine going into work and doing the commute and coming back home and trying to cook dinner and have a toddler, like there's just I there's no way I can do all of that. I think I have about a good like eight hours in me in a day. And then I'm and then I'm done. Yeah, I just have to turn off.

PSC Mami- Monika  22:13 And that's so real. And 22 months old, have more than eight hours don't they?

Alicia  22:21 Yeah.

PSC Mami- Monika  22:24 What convresations, or have you had any conversations with your family, about the path you're on to transplant, what have or have those happened or what have those conversations been like?

Alicia  22:37 So they've happened with my mom and my partner. And now this most recent, I was in the hospital two weeks ago. That was like the first time that my partner ever really took it that seriously, like he's known for a very long time, the name of the thing that's wrong with me, you know the basics of it. And he's never gone to an appointment with me or anything. But this most recent time, he started looking things up. So hopefully, that continues that he can kind of understand without it taking all of my energy. And, you know, my mom has always been sort of my, my medical person. I think transplant and as things have gotten more serious, it's it can sometimes be harder for her to accept that this is actually happening now. There's a lot of like, Oh, they must be wrong in some way.

PSC Mami- Monika  23:43 We all hope they're wrong, right?

Alicia  23:44 Well, yeah. Like, yeah, be great if they're wrong, but I don't, it's not really helpful feedback. We've talked through the transplant evaluation and insurance and all of that, but haven't gone as far as, you know, spelling out the nitty gritty of 'Okay, so what are we going to do during this time.' But luckily, you know, with her next door and and my partner here, like, I shouldn't be able to have enough care for me and Amelie. And my brother is actually in town as well. So like, you know, there is I do have help around.

PSC Mami- Monika  24:31 How do you hope the transplant if, if and when you have one, what are your hopes for that?

Alicia  24:40 Oh, it would be really cool to be one of those amazing people that are like, ah, I have a new liver and suddenly everything is this better and I beat the odds and I'm walking down the hall and they released me early and You know that that would be really, really cool to have this relatively easy recovery? I don't, I don't really think that's going to go that way. But that would be my hope. Um,

PSC Mami- Monika  25:19 We can have hope and realistic expectations.

Alicia  25:23 Um, and I guess my, my realistic hope is that, that I am that I don't have to, you know, get the call five times before I actually get a liver and I, I hope that because my with PSC that my progression has been so slow, I'm hoping that it would if I get rPSC it's the same sort of path and not super fast path as I could get a new liver and now 20 years, I'm okay with that. I know, that's not always how it goes.

PSC Mami- Monika  26:05 Where do you find support for yourself when you're feeling scared or uncertain about the future?

Alicia  26:13 I don't really. I don't really have any anything right now. I can. I can certainly talk it through with my partner or my mom, but needing support when I am scared for the future and all. I don't really know.

PSC Mami- Monika  26:33 It can be hard to talk about it with folks who are deeply intertwined with that future, right?

Alicia  26:39 Yeah, yeah. Yeah. And it's, you know, my friends that know about it, like, none of them really get it. You know, I'm finding that there are people that I've definitely talked to about this, but that when I say something about transplant now, they're like, Oh, what? What are you talking about? Like, you know, that liver thing? The reason I don't drink that, that thing? Yeah, that's, that's real. Because it's a disease that people haven't heard anything about. It's like, they just kind of forget that it exists. Especially if you're asymptomatic. Now, what are they gonna remember about it?

PSC Mami- Monika  27:23 What part of parenting right now brings you joy.

Alicia  27:28 She makes a lot of really funny sounds. She wants to think Baby Shark about everything. So she has to tell us what the next verse is going to be so used to just be mama data, Baba, who's our dog, Bernard. And she would just rotate through those. But she started adding through pointing she's not super verbal through pointing inanimate objects. So like, now we have to sing about like, baby refrigerator. And flashlight. And so that's, that's pretty funny. And just kind of like, she's working on talking. So when she learns a new word, and they all kind of on the same, but they're there. It's so cute. Like, there's so many words that are almost the same when we think we know what she's saying. And she says ball, but she also says, bear as a bea. And you know, cats are maos, but that's very close to maok which is milk. And, you know, everything is just like, so close. But yeah, she's it's, it's just it's so, so cool to watch her learn thing. I feel like she's just like, on the brink of almost talking.

Alicia  29:14 You know, there's one thing about having a toddler and having all these other worries is that like your toddler needs your full attention. If you're not giving it to them, they're going to get into something. So if you don't want your house covered in Sharpie, and then you need to focus on that and you don't have any other time to think about other stuff.  And that's really, that's why having her it's gotten me through the last two years is like I don't, I can't dwell on things. And then she's always there to do something that's silly and be extra cute, you know, so she can just be like this little spot of brightness in the day?

PSC Mami- Monika  30:02 Is there anything I haven't asked about that you want to make sure to share?

 Alicia  30:08 I feel like for people that have just gotten diagnosed, like, you know, I say this all the time, but it's a totally different disease for different people. I mean, it's nobody can say, how long before transplant or, or anything, so, do what you need to do. To get the most out of your life. You know, if, if you want to have a kid, this doesn't have to be the reason not to. If you don't, that's fine, too. You know, you don't have to do anything. But if you It shouldn't be something that it shouldn't dictate your entire life.

Alicia  30:57 You know, on a personal note about my family, like, with PSC, they say like, Well, you know, we never know when we're gonna go and get hit by a bus tomorrow. You know, I think that people with PSC, we often just have like this cloud over our head that, oh, we just don't know when it's gonna happen. And it feels like a death sentence. It feels like a death sentence because of this, like, unknown. But like, right after my daughter was born, and my dad had sudden cardiac arrest.

PSC Mami- Monika  31:29 So sorry.

Alicia  31:30 Nobody was expecting in. And she was two months old. And, you know, that was really, really hard, because we had plans that we all had. My parents moved down here to be closer, they are so excited about being grandparents, especially my dad. And there is so much that he wanted to do still. But then one day, he wasn't there. And, you know, that could happen to anyone. And then, two months after that, my partner's dad was killed in an accident. And, you know, he was hit by a semi truck.

PSC Mami- Monika  32:18 So sorry.

Alicia  32:20 It was the truck driver's fault. 100%. And, you know, the, so when Amelie was born, she had two, two grandpas, and then four months later, she had none, you know, both these things were just like, immediate, sudden, unexpected, tragic things. And they could happen to anyone at any point. And I think that, you know, I spent so much of my life worrying about this possibility that I that PSC could kill me at some point. But, yeah, you're more likely to die with PSC than from PSC. And, you know, it's, it's true, like no one, you know, you can't live your life differently, because you are waiting for this tragic thing to happen. And it's okay to grieve your diagnosis and be anxious about the future. But we can't, we can't control everything and still need to live your life.

 PSC Mami- Monika  33:48 Thank you for bringing that I know. It's very hard. And it's been a really hard time.

Alicia  33:56 Yeah.

PSC Mami- Monika  33:57 And I think it, you know, a lot of us struggle with that piece that people kind of are dismissive with those lines that we all know, having had your experience. And I really appreciate you bringing that insight about your own family members. Yeah. And sort of how it's affected your own outlook.

 Alicia  34:18 Yeah.

PSC Mami- Monika  34:20 Both the long term anxiety, and at these very set of losses, and there's a lot to hold on. So I really appreciate you sharing that.

Alicia  34:30 You're welcome. I hope it can help someone.

PSC Mami- Monika  34:35 Yeah. I am wishing you the best, whatever that may be. It's hard to even know what to wish time. Do you want to be listed, do you not? Yeah. And, you know, we're in that unique position to know how you don't really know what answer you want sometimes.

Alicia  34:55 Mm hmm.

PSC Mami- Monika  34:57And I really appreciate you taking the time. Share your story with us. This is really powerful.

Alicia  35:04 Thanks for talking with me. And thanks for doing this podcast.

PSC Mami- Monika  35:09 Thank you, Alicia.

Alicia  35:12 Take care.

PSC Mami- Monika  35:16 Gracias for joining me and honoring Alicia's story. As you heard, we need a cure for PSC that is beyond the treatment that is a liver transplant. A team of five PSCers and myself have been virtually making our way across the USA. Yes, 3521 miles over the last two years. We are transplantees and PSCers we've been counting miles earned walking, running, biking and even shuffling around hospital inpatient floors. We have a goal of 200 donors to support our last 200 miles. To support this effort and fund a cure for PSC, go to PSCMami.com or on any of PSC Mami's social media accounts. Thank you. And as always, please share this story. You never know who it may reach. Gracias.