A father of a young son reflects on his son’s recent diagnosis of PSC
Bill discusses going through the process of getting his young son’s Ulcerative Colitis and Primary Sclerosing Cholangitis diagnosis, a diagnosis that is incredibly rare in young children. He speaks to what it meant to find a fellow parent of a young PSCer to support him through the emotional challenges and navigating the medical world of pediatric PSC.
Transcript
PSC Mami- Monika 00:00 I am lucky to have found someone so early on that I really feel like pointed me in the right direction where I really think we could have gotten it I could have gotten to a bad place, but I was lucky to have that person find me.
PSC Mami- Monika 00:21 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's own bile ducts. Over time, inflammation leads 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.
PSC Mami- Monika 00:56 A reminder that all stories and information shared or personal experiences and opinions and should not be used as a basis to treat yourself or others. An invitation to you. Yes, you. Whether a PSCer yourself or a parent of a PSCer, what is your story at the intersection of PSC and parenthood? Has it been smooth and uneventful? Have there have been challenges, has PSC made becoming apparent impossible? More challenging? Or was it an uneventful journey? Has parenthood turned out drastically different than what you had envisioned because of your diagnosis? Or Is everything fine and PSC fades into the background of your parenting and living? I believe that our stories are connections that we can make across time and geography. As we 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, it's a process where you hold control over your story and how you would like it shared. contact me at PSCmami@gmail.com. Or on the podcast website PSCMami.com/stories. I look forward to hearing from you. Now, let's get to today's interview.
PSC Mami- Monika 02:31 Today I'm a podcast we have a first. We have a father of a PSCer. And we are again, because it is a parent of a young person, using an alias, another name. So we're going to go by Bill and Bill lives in the Chicago area with his family. He has two children. And he's going to talk today about his experience finding out that his young son had PSC. Welcome Bill.
Bill 03:01 Thanks for having me.
PSC Mami- Monika 03:03 Tell us a little bit about the journey that your family has had with PSC.
Bill 03:13 For us, this started just about a year ago, this time of year actually. My son has a Christmas party at his school each year. And by the way leading up to this time is completely healthy. No issues, no symptoms, nothing. And at this Christmas party, he was running around with his friends as he normally would. And he took my wife aside because I was watching our younger son, because they both had the party at the same school. He took my wife aside and she came over to me after she had taken into the bathroom and came over and said, You know, he'd had an accident, which he had that had since he was much younger. And she said actually, there's a little bit of blood in it. And I said Oh, that's, you know, scary, obviously, you know, anybody would be thinking, just seeing that is scary enough, right? So we took him to the pediatrician, right away. And, that first bout, that first trip there was essentially, you know, it's nothing to worry about. It's probably either this, this or this. Let's give it some time. Let's see if it clears up. Let's see what happens. But while we're doing that, you know what, we'll just do some blood work anyways. So we kind of figure Okay, this isn't great, but doesn't sound like it's anything too serious. And we get we get him home and he seems to kind of be okay. But it's still happening for the next couple of days. And then they call us back with the blood work and the blood work tells us that he has C diff. And we thought that that was extremely strange because what we had heard from C diff was it was this massive infection with these horrible Side effects or you know, you know, things that go along with it. And he didn't have any of those, the only thing that he had was that little bit of blood. And that was it. So we got a course of antibiotics, we ran through the course of antibiotics. And the issues seem to have cleared itself.
That was in December of last year, then we get to, I think it was about February. And I have no idea why I decided to do this. Because we had been checking in while he was having the issue up front. We had been checking in and saying, you know, is there blood? Is there blood and cleared up? And then for some reason, in February, I asked him, Hey, do you know, have you got any blood in a while? And he said, Yeah, actually a little bit. And again, we were like, man, I can't believe that he has this going and again, so you took them back to the pediatrician. And again, they kind of ruled that is probably nothing too serious, just either maybe about the cdiff coming back. Or maybe it would be something but they weren't sure. And we should just be bringing him back in. Because this was over the weekend, this time. Maybe we should just bring them back in on Monday. And then they would they would see him again. What ended up happening either that day or the following day, as he had an episode where there was a lot of what were significantly more than we had seen before. So we thought that was pretty serious and serious enough to actually take him to the emergency room for the urgent care because we read a couple horror stories online. And you know, you all do that. So we're like, let's just get them somewhere, we better gotta put our mind at ease. So we took him to the, like Urgent Care slash emergency room. And while we were there, the nurse at that office was asking us, you know, what's his health history about we told him that he had had a bout of C diff. She said c diff, in a six year old is extremely uncommon, especially if he's not someone who's been in and out of the hospital. That's really strange. For someone like that, to get that. And she said he asked as your pediatrician actually never asked you to follow up on that. Then we had said no, we, you know, we took hom in. We got the the the antibiotics for the cdiff, we were told that was cleared up. We just went from that, you know, you obviously want to get that good news. That's what we thought was good news. So we just moved on from it. But she told us that her recommendation was that we actually go to Lurie's, if, you know, they were able to see us and if our insurance covered it, and to get him seen by a specialist ,GI specialist. Lucky for us, Lurie because we're in the Chicagoland area, right downtown in the city. And one of the best pediatric GI hospitals, you know, in the country. Definitely in the area, lots of people come from around the Midwest and go there. So we were able to get him in pretty quickly.
PSC Mami- Monika 08:02 And we had talked to this GI doctor there. And he had basically told us after doing a couple of tests and talking to us, he kind of confirmed that same thing, really strange for a kid of his age, to get C diff, unless there was some sort of weakness in his colon. So he said, we really have to prepare ourselves for a diagnosis of either Crohn's or ulcerative colitis. So we kind of got that news. And I think that news shook us enough, where we were essentially like, what are we going to do, you know, our child has this debilitating disease, you know, and we had taken a couple of days and we had come to grips with it, you know, as much as we could. But then we got a follow up call from the nurses there because he had also got bloodwork done at that time. And they told us, you know, some of his liver enzymes look a little off. And that can mean a couple of different things. And actually, this doctor is was very thorough and wrote a few different things that it could be one of them being PSC and he said that he really wanted us to meet with the hepatologist on his team. So a couple weeks later, we meet with the hepatologist. And she tells us that when he goes under for the colonoscopy that the GI doctor was ordering because he's like the only way he could actually diagnose it, unfortunately, was a colonoscopy, an endoscopy, and then she said because he was going to be under for that hepatologist wanted to add in a biopsy, liver biopsy, and a... I think they did an ultrasound as well but she's like while you're in there, these are the things we want to go in for and these are the things we're testing for one being autoimmune hepatitis and the other being PSC. So obviously reading up on PSC reading up on autoimmune hepatitis, trying to make sense of all the liver numbers. Lurie's has the MyChart system, which I'm sure a lot of people are familiar with, or some form of that. That thing's probably not the greatest thing for me because I go on it, and I read up on everything. And then I tried to decipher what everything is and went to school for health care. So I felt like I already had a pretty good grasp of what was going on. But anyways, we fast forward this, this. So this goes across all that time. That happens from February, March. And now we're into the beginning of April. And he had gone in for the biopsy, and he had gone in for the colonoscopy and the endoscopy, he ended up having ulcerative colitis, we got that diagnosis right away on that day. And he was just he started on meds for that right away. And then he, we got the call about, I don't know a few days later to potentially a week later to tell us that he also had the autoimmune hepatitis and the PSC. And that was in April, and we were frozen, I guess, would be the best way to describe it. Once we got that diagnosis. We didn't really know what to do or where to turn, you read everything online, as I'm sure you know about all the you know, all the what what that means for whoever has it. And for a child that has it, these thoughts are just rolling through your head. And luckily, I had someone who found me while I was on a forum writing about it, because again, you don't know where to turn. And there's the community, it is not huge until you know where to find it. So I ended up being at another forum. And I had someone reach out to me who happened to be on that same forum that day, even though she doesn't really visit there at all anymore. She happened to be there on that day. And notice that I posted that. And she found me and asked me to call her and we met up or not met up, I called her and that person is someone who I consider to be a lifesaver to me, someone who found me and then got me into the community, who then got me in touch with the whole entire PSC Partners Community. And really, that's it. So went to the conference this summer, have met and spoke with a lot of other families met with a lot of people on the board there. And I mean, what I can say is that it is an amazing community. That's for sure. And everybody's looking to help. My son right now is doing well is symptom free. At least at this point, he takes his medicine every single day.
PSC Mami- Monika 12:58 He's he's living his life. He's a travel soccer player plays three days a week, goes to school, we haven't had issues yet. And we're lucky that we haven't had issues yet. More symptoms yet. We're lucky that we caught it when we did catch it. And we hope to be on the front end of hopefully any new drugs that are coming through. But as you just never know. So really, that's where I'm at. And that's that's the story. So far, I'm in the very beginning stages of it as I'm only I'm not even a year from diagnosis, I'm six months from better, so six or eight months from diagnosis. So still very early in the process for us, but lucky to have found someone so early on that I really feel like pointed me in the right direction where I really think we could have gone. I could have gotten to a bad place. And I was lucky to have had that person find me. So that's where I'm at. That's the story. Yeah.
PSC Mami- Monika 13:53 Thank you. And one of the things that I appreciate you sharing this early part of your journey, because sometimes when you've been in it, you know like I have 10 years, it's sort of hard sometimes to remember like, wait, what was the order? What happened? So thank you for sharing emotions while they're still raw a story while it's still raw. Can you go back to that moment when the nurse at the urgent care and think we are have are many of us have that one individual that sort of pulls out of the pulls us out and says wait, there needs to be more investigation here that leads us on the right path. What was that like for you to have her? You've had this moment of like relief. And then she's like, I think you should look into this more.
Bill 14:42 Yeah, I mean, that's obviously it's tough. I wasn't there for the actual moment. But as my wife was the one who took him and I stayed home with my younger son, but when she got home, we were just like, I think we just went into whatever it takes to figure it out mode, you know, we knew we had been dealing with it. And we had been going back and forth with it for a couple of months already. Now, we didn't know how serious it could be at that point in time, but we knew something wasn't right. And the fact that things kept popping back up was, you know, was was alarming to us. And that's when we said, you know, there's a lot of hospitals or places much closer to us, than driving into the city. Now, I still live in the Chicago suburbs, I'm not far but driving into Chicago. And this Lurie's is in the loop, like, in the heart. So it's not easy to get to. But we were, because we knew it was the top rated GI Hospital in the area, it was like, it's time to go into action mode and do whatever we have to do for him. If our insurance is going to cover the best hospital, who cares where it is? We're going there. Yeah. So I think that was the point too. Yeah, you thought you were, you were gonna have some relief there and things were sorting themselves out. But as soon as we knew they weren't, we were like, We got to do whatever we can. And lucky to have the resources to do it to be honest.
PSC Mami- Monika 16:12 And what was it like for you, you know, having this background in healthcare, to sort of listen to the specialists tick through these possibilities?
PSC Mami- Monika 16:26 It was, it was concerning, because when I looked at his numbers, so I think my wife kept thinking kept putting it in the back of her head like, No, he's going to be fine. There's, it's not going to be the serious things. Because it's rare as everyone that I'm speaking to now knows. It's extremely rare. And that's what you keep hearing as it's going along. I'm hearing it's rare, and knowing it's rare. But then I'm looking at his numbers. And I'm reading probably more than I should. And I'm going yeah, this is rare, but like it I am kind of made peace to my, with myself. Like, I think it's this. Like, I'm pretty sure when I look at this, I think it's this. I don't know, well, what else it could be? And I think when it came time for diagnosis. I don't want to say it was easy, because it certainly wasn't. But at least I was prepared for it where I think it shocked my wife a lot more because she wasn't. So I guess in a way it prepared me for it. But I kind of suffered with it longer. Because I knew I felt like I knew what was coming. But I think it was probably a good thing almost, to have that background. And I think it still is because I always look into these kinds of things. So I'm somewhat familiar with it. So yeah, I'm used to it almost.
PSC Mami- Monika 17:46 It's an interesting perspective. I think. Sometimes I feel like I was spared some of the heartache at the beginning. Because when they said it, I had no idea what it was. I was like, Okay, I have that. Don't know what it is. Okay. (laugh)
Bill 18:02 Yeah. Absolutely.
PSC Mami- Monika 18:04 And what was it? So thinking about, you know, what, the, this whole intersection of PSC and parenting, right, what is it like to prepare a six year old for procedures? Have you talked about, he had to go under and he had, you know, obviously, in 10 minutes, you gave us a very long and intense journey. Speak to a little bit sort of what the process in just guiding him through this really medical journey at such a young age.
PSC Mami- Monika 18:36 Yeah, so I guess the best way I can describe it is a blessing and a curse to be going through it with a six now seven year old, because, in some ways, him not knowing what was going on was better. Right? Because him not knowing the severity of what was going on. He kinda was able to help us keep some of that from, he wasn't really scared of a colonoscopy because he didn't know what it was. He wasn't scared of an endoscopy or any of these other procedures or a biopsy because he didn't know what it was, we use a little bit of humor with the colonoscopy, someone's got to put a camera inside of you, you know, that kind of deal. We did that. And he kind of, him and his brother thought that was kind of funny. And we just kind of told them, you're going to go to sleep, they're going to take pictures of your insides and they're going to tell us what's wrong with you. That's, that's how we're going to find out. That's how we're going to know so he kind of knew and he's known all like, there's something wrong with my liver. There's something wrong with my, you know, intestines. And I have to take my medicine every single day to make sure that I feel okay. And that's kind of the extent of it. And he'll he'll say a lot of stuff. I mean, I think it makes them kind of grow up a little bit. And he'll say things like you know what, dad, sometimes kids are born without arms or legs and I was born with a broken liver. So he'll just, it just stuff like that, you know, there are so young, they're so innocent. That's what makes it hard that you hate to see them going through something like this. But that also, it's like, well, at least you can kinda, for the time being, you get to shelter them from it a little bit still. Yeah. And still keep some of these things, the seriousness of this stuff from him, you know?
PSC Mami- Monika 20:20 And how did you and your wife, think about like, how, how did you and your wife think about how to approach it in general? Like, how do you even talk to your child about this, like even saying, like, okay, we need to figure out what's wrong? Or here's what the doctors have found? Did you sort of work that through on your own? Did you seek out support with how to talk to him? Or did it just flow?
Bill 20:49 It kind of just flowed? Honestly, we didn't seek out support for that part. I think we've always been pretty open with them. And I think we decided to take the the approach with him as you know, we'll keep the gory details out of it. But we're always going to be honest with him about like, you have a condition and it's serious. And that's, that's, that's kind of how we, we've had to talk to him about it. And his doctors at Lurie's also, talk to him very honestly about stuff, even though he's always they won't meet with us without him in the room. They don't allow it. So he's a part of every conversation we even said for like the first one we want to talk to, like, Can we put headphones on them? And they're like, no, he should be a part of like, you should talk and, and his doctors, they were all they're a very young team, which I really like. I don't know why. I think it's just like the way that they interact with him. And the way that they interact with us, it's a very much like, we're like partners, like we're a team and in fighting this. So it's kind of nice, and they're always very, they're upfront with him, they know that they tell him their stuff going on. So it's he we've always just been honest, and upfront, that's the method we've taken with it. And also not taking it far enough where we could really scare him, I guess, would be the thought process.
PSC Mami- Monika 22:12 And how has, or has his diagnosis changed your parenting, so you had a parented him for six year boats before. And then there's sort of this moment of shift in perspective, to a degree. Did that shift how you interact with him or how you parent him?
Bill 22:35 I don't think it changed how I parent him or interact with him. It's changed my outlook. I mean, we have a sign that we hung up in our kitchen that, you know, don't waste today worrying about tomorrow. It's, there's so much unknown, as you know, and everyone knows what this condition. So our thought process with him is take every single good day and try to appreciate it. Now, that's a hard thing to do. You have bad days, you have rough days, but you know, we can look at it one or two ways we can look at it as you know, we can be concerned that down the road, he's going to have complications, issues, whatever else, or we can take every single day that he's healthy and doing well. And kind of you know, seize life by the horns, right? So, you know, we think about well, he plays soccer now and he loves travel soccer. And, you know, my wife has even said at times, like, you know, she's concerned that he won't be able to do that throughout high school and whatever else. I'm like, we have no idea what High School holds for him. Right? Clearly, it's easy to have those thoughts. And in very, you know, there's a lot of reason to think that way. But also, like, he loves it now when he, he's doing great, like, let's appreciate the fact that he loves it now and let him do it as long as he absolutely can. So I just I don't want to think about other things that might happen down the road. So I guess that's my biggest thing with him. It hasn't changed how we feel about the future or how we, you know, parent him now but it's really just changed my perspective on his day to day like, Just be happy and excited that he's doing well now and because not every kid gets that not every person gets that when they get this diagnosis, right. So you have to be happy that he is symptom free.
PSC Mami- Monika 24:25 And you mentioned that you had a fellow parent of a PSCer sort of find you and and give you the support you needed. Can you talk a little bit about where you were right before she found you like what were you seeing on those forums? We all go to online forums for different reasons, right?
Bill 24:45 Yeah, that's right. Like oh my god, yeah.
PSC Mami- Monika 24:47 What were you seeking?
Bill 24:49 So when I was on those forums, I was seeking help, initially, answers. What are people doing? Like to our treatment plans that you're using, that are working, that aren't working. That's kind of where I was going when I was trying to initially seek people out. But I can tell you that I distinctively remember walking to work. I know where I found out because I was on the train home from work. That's when I got the call from my wife, and got the diagnosis. And from that point, through that evening, into the next morning, because one of the forums that I was actually posting, and they didn't let you post until a day after they approved you, there was this period of time, where I was, I call it frozen is the term that I use, I probably already said frozen once on here before, but that's how I felt. I got that call, I was on the train, we were actually at a, supposed to go that day to like a little banquet for his soccer team. And I just remember sitting there with my wife, and we were both kind of just like, we're here at this normal thing. He's here, he seems completely normal. But we just got this news. And that night, and then the next morning, just went into work. And I was like, just going through the motions started to type up that thing. And she found me. I don't know how it happened, why it was so lucky that she happened to be checking back in at a like a forum that she said she doesn't go to any more than one that she said she doesn't like. But I happen to be on there. And I posted my story. She found me. She was like, you have to call me. I was just there. This just happened to me X amount of months ago, I need you to call me. And I called her that evening. And we probably talked for two hours. And she dug me out of that hole she dug me out of the the scary diagnosis, the what is my kids future going to be like to hear telling me, your kid will be fine, he will drive a car he will, you know, he will go to high school, he will have this there, you need to get in touch with this person. And she put me in touch with you know, Ricky Safer the founder of PSC Partners, she put me in touch with Rachel, the person on the head of registry. I can't say she saved my life. That doesn't really make sense. But she just dug me out of such of a dark place. I can't tell you how much that meant to me at that time. Which is why like when my wife initially asked me like, why would you want to do a call like this with you? And I'm like, because if my story can reach anybody, and I can help anybody? I need to push that out and give that to somebody else. Like somebody else if you can, my story helps one person, one dad , one mom whomever. These stories help people, I feel like I believe that 100% and that helps you get in touch with people you need to get in touch with in order to get through this stuff. Absolutely.
PSC Mami- Monika 28:02 I'm clearly a believer in the power of story. So thank you for sharing yours. How has being an a, also a marriage and thinking about parenting? Like how does something like this affect your relationship? As you're making, you know, hearing this news, and we each have our own ways of processing, hard crisis kind of things? How does it affect your relationship to have a child that's been diagnosed with these conditions?
Bill 28:37 I think at times, it's tough, there's no doubt about that you have your ways of you both have your own opinions on how things should be done. But I mean, in the long run, it just makes you stronger and a more powerful couple, in my opinion, because of what you need to be a extremely strong unified team for your child. And both of us have, you know, had to be the strong person at times, and both of us have had to be the person who's had a rough day. And you have to kind of know when to step up for that other person. I think I was I had to be my wife's strength when we first got the diagnosis. And I think it was important that I kind of already knew we were going in that direction. Because that let me let her grieve in a particular way allowed me to kind of keep the house going during that period of time. And there have been times where I've needed her to me the strength, you know, so, you know, you just know how to play off of each other and you know how to play your role. I mean, she's very strong. My wife is very strong for my son. And she does some amazing things. But, you know, like when he comes out of anesthesia after procedures, he has a tough time. So that's really, really hard for her where I can be there and be like, that's okay. That's not him. You know, that's him coming out of the drugs, you know. And she can do the same for me when I start to freak out after I read too much about something, and she can kind of talk me off that ledge. So I think it's just being a strong partnership. And being a strong team makes you a stronger couple in the end honestly.
PSC Mami- Monika 30:21 And one of the things that we talked about briefly, is the different sort of how it's felt different for you, adult PSC conversations versus pediatric PSC conversations, can you speak a little to like, what some of the differences are? What are the different needs for families with children with PSC?
Bill 30:44 Well, I think, you know, PSC is rare to begin with. But then to have a kid and a very young child with PSC, there's not a ton of us out there. I think that goes back to how hard it is to detect, how often are you going to detect it in the child that young because if they have something going on it might be, they might not even know they have an issue to tell you about something. So the amount of people who have it is small, which means it's being studied even less, you know, there's no trials on kids. So what you're hoping for is them doing a trial involving an adult that eventually will trickle down to a child, we went to the PSC Partners conference. And it was a great conference, and it was in Rochester this year. It was a great conference, but it's very adult focused, there are a few pediatric sidebars or you know, side sessions, where you'll meet with some of the doctors that will talk to you about pediatrics. And there's not a ton of parents that have a kid that's as young as mine. So we weren't able to find those connections there. And even the mentor that we had there, their child was quite a bit older. So what we found is just the family or the community is even smaller than the small community that PSC is, but that community, albeit small, everybody is very strong, vocal and very willing to help. So I think that's just what we found with pediatric PSC or so far,
PSC Mami- Monika 32:18 What are some of your hopes for your son?
Bill 32:21 My hopes for my son is that for as long as possible, he lives as though he does not have this. And once, and if when he does start to have symptoms, that he has the strength to power through them, like all of you have done so far. And I think that he will, and my hopes are let's, let's get a cure, obviously. I mean, what's what's the hope? What's everybody's hope, right? Let's, let's get rid of this. So my hope is that he eventually doesn't have to deal with it. But if he does, I mean, I'm just hopeful that he continues to go to the right place and see the right people and be surrounded by this, you know, the right people. And I think that's what he's doing right now. But I don't want it to ever control his life. I just want it to be a part of his life, you know, until it's not a part of his life, which I hope for some day.
PSC Mami- Monika 33:14 That's a beautiful hope. If you were to meet another dad, right now, right? Someone listening to this is like, Oh, my, I need to talk to this guy. What would you want to tell him?
Bill 33:28 I want to tell him the same message that was given to me when I needed somebody. And that was, there's hope, you know, you've got to hang on to that hope. There's so much going on right now. In the studies in the fields, there's so much more awareness now for this condition than there ever has been. And you just have to have that hope. And like I said, that sign that's up in my kitchen is the mantra that I really do try to live by and that, you know, you can't waste today worried about tomorrow. So take advantage of every minute that you have with your child now and realize how precious that is. Because none of us know what tomorrow holds.
PSC Mami- Monika 34:11 Great. Thank you so much.
Bill 34:14 Thank you.
PSC Mami- Monika 34:15 Definitely Wish you your son your family the best and that it is true that very soon he doesn't even have to worry about this at all. That would be amazing.
Bill 34:24 Yeah, absolutely. Thank you.
PSC Mami- Monika 34:29 Gracias for joining me and honoring Bill's story. I could ask you to rate and review the podcast. But let's be honest, the target audience for this podcast is small. We're not going to make it to the top ratings. PSCers and our families are who this these stories are meant for. More powerful is if you would share these stories in your networks. You never know how many degrees of separation there are between you and an unknown PSCer. I once met a young woman in an art class of seven who had PSC because I shared a piece of art about processing my illness. So please share on social media or other networks so that those who need this story and the others on PSCMami.com get to hear them. Gracias.
