Stuart makes life changes after PSC diagnosis to spend more time with his family
Stuart made a conscious decision to make time for his children and spouse when his Primary Sclerosing Cholangitis diagnosis focused him on what was important in his life. He shares about what it’s like to be the financial provider for his family, the essential role his wife plays as his support and how he chooses to take advantage of life experiences and keep positive for his three children.
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Transcript
Stuart 00:08 Everything now is around spending as much time as I can with the kids, being there was something you take for granted before.
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 its own bile ducts. Over time, the inflammation can leave the bile ducts scarred and blocked, which could eventually shut down the liver, which surprise is in charge of over 300 functions in the human body. To be diagnosed with this rare, incurable, unpredictable disease can rewrite anyone's life journey including their vision and experience of parenthood.
PSC Mami- Monika 01:00 A reminder that all stories and information shared our personal experiences and options and should not be used as the basis to treat yourself or others. Please consult your personal medical team.
PSC Mami- Monika 01:16 An invitation to you. Yes, you whether you're a PSC or or the parent of a PSC, or what's your story at the intersection of PSC and parenthood. Has PSC made becoming a parent impossible? more challenging? Or was it in an eventful journey? I believe that our stories are connections that we can make across geography and time, as we all figure out what PSC means to us. Every story has the power to make someone for many people feel less alone. Your story has that power. Yes, your story. Contact me to talk about the process to be interviewed. And yes, you hold control of your story and how you would like it to be shared. You can reach me by email at pscmami@gmail.com or go to our podcast website at pscmami.com. I look forward to hearing from you. Now. Let's get to today's interview.
PSC Mami- Monika 02:25 Hello, everyone. Today we're speaking with Stuart and he lives with his family in Livingston, New Jersey, with his three children and his lovely spouse. Welcome, Stuart!
Stuart 02:38 Thank you for having me.
PSC Mami- Monika 02:39 Tell us a little bit about your PSC journey.
Stuart 02:42 Sure, I was diagnosed about 2013 I had Ulcerative Colitis since 2001. And then my liver, during some regular routine physical with my doctor, my liver functions were high. And it happened to be in line with my gastro doctor's annual appointment. So I handed him the the bloodwork paperwork and say you don't have to, you don't have to revisit again, because the liver functions are high. And all the sudden he had this look on his face. And he said, "Well, you know you might have this disease called PSC. We only know by taking an MRI. He said don't worry about anything yet. Let's make sure you have it," and so of course that made me nervous. And of course, we looked on the internet about it and all the bad things it says about the disease and how you don't have a long time to live. And so I went straight to get the MRI and then the next day the actual doctor called me, which never happens you know, it's usually the nurse that calls, he's saying, "Can you get, can you come to my office now," At the time I lived on Long Island and I still do work in New York City. So that's about a two hour commute. So I just ran out of my office told my manager I'm just leaving and went. My wife came with me and he told us yes, I do have PSC, pretty much said there's no no cause, nothing you could do about it. We just need to have a colonoscopy every year, bloodwork and an MRI every six months and and that's about it. There was not much more he could tell us, so we did some digging again online and things got worse and worse. So my wife thankfully found PSC Partners Seeking a Cure, their Facebook page. And they've just been a tremendous help and a big family of support. You know, I learned that yeah, I could go 30 years or my whole life without anything happening. So I just kind of keep that glass half full attitude that yeah, this could be one of those that just don't really ever have problems. Just keep doing what I need to do to monitor.
PSC Mami- Monika 04:44 So that was in 2013, what how has PSC treated you since then?
Stuart 04:50 Oh, it's every time I get that MRI it's been nerve racking because every time since day one, they find something new on the MRI to the point where now It started off with a lesion on my liver, and then the lesion got bigger and then shriveled up to nothing and then my whole left lobe was just completely atrophied. So thankfully, supposedly the important bile ducts aren't there. So I'm down to one lobe of the important bile ducts and, and thanks seems stable so far. But I've just been getting my semiannual testing my annual, my annual colonoscopies, which are always a lot of fun, and we just keep monitoring it, I found a really good doctor that used to be with Mayo Clinic. And he was recommended by hepatologist that I found in New York City. That's really good. And supposedly the queen of hepatology of PSC. So she does a lot of research. So I'm confident that the right people looking after me.
PSC Mami- Monika 05:55 That great. Can you take us back to that initial visit with your doctor and kind of the preview that you had? It sounds like you did the thing that they always tell us not to do right, to go research? What was that like for you and your wife to go through that process? And then to find out indeed that you did have that? Can you take us back to that time and what the conversations or the feelings were at that time?
Stuart 06:22 Yeah, it was scary. I mean, I compared to when I first got diagnosed with ulcerative colitis, and I was much younger, single at the time, and I didn't know my wife, you know, my doc, I had a bad doctor, and he just didn't tell me anything. So and you know, that young, I was really scared and then changed doctors have found more. So this was just as bad except there was still nothing to find I had a good doctor, but nothing to find and, you know, I really didn't have much hope for my future. As far as how long I would live. Now the suffering, I would end up going through in between now and then. And of course, the impacts, you know, my kids see me go through this. So I was quite frightened. And no one we got the proper research from PSC Partners and talk to a lot of people I found, okay, it's not always like that. And, you know, nothing's going to be so obvious to my kids until I get really sick. And that's if I get really sick. But it was a really scary feeling, knowing that my life is going to change dramatically going forward.
PSC Mami- Monika 07:25 How old are your kids at the time?
Stuart 07:28 My oldest child was eight years old. So then I had my middle child was four, and then I had a two year old.
PSC Mami- Monika 07:41 So really little.
PSC Mami- Monika 07:42 There is no way of hiding how gross it is.
Stuart 07:42 They were really little. So it wasn't something we had to go out and just say, Hey, Daddy's sick. You know, my wife and I are very open with our kids, especially now at this age. Like when my father was diagnosed with cancer years ago. We told them, we didn't hide it from them. We thought it was important for them to know so they could spend whatever time they could with him. And let's face it, they, it couldn't be hidden from them. So, you know, at that age, we didn't have to tell them but as I've gotten older, and they know we go away to these conferences, and you know that Daddy drinks the poopy juice once a year. You know, they are like, Why are you doing that? What are you drinking? You look like you're disgusted? You know, I explained to them why and what
Stuart 07:43 No, no. So we gave it a fun kids named poopy juice. And now every year, they giggle. It's like a party almost. They get all excited. But you know, they know more and more about it. My daughter just got bat mitzvahed. She did not only a huge fundraiser for PSC, but part of her speech was about PSC. And you know, how she wanted to be there for her father and everything and that was quite touching. So it's good to know, they understand that. You know, this is pretty serious. But you know, there's still a lot of fight left to find a cure.
PSC Mami- Monika 09:04 How did that feel for her to make those choices? In that moment?
Stuart 09:08 I think it was easy for her. You know, she knew I had it. She has to do what's called the Mitzvah project. So something good, which is usually some type of volunteer thing. So she decided for that to raise money for support and research for PSC. And it was a no brainer to her. She went on live on Facebook and did a video pleading people to donate and she raised, you know, $1,300 and we promised everyone who donated that we would match so, you know, that's a lot of money raised right there for my daughter and she feels, I think she feels good about what she did. And that she was supportive and she even said she wants to go to conferences. You know what she can, and learn more and meet more people. So now it's touching to me. It feels good. You know, I don't, I hope and I don't want her to worry a lot.
PSC Mami- Monika 09:58 Do you remember telling her for the first time about your diagnosis, what that process was like?
Stuart 10:05 Oh, we I don't really I think it just organically grew that Daddy has, that he has problems with his liver. And you know, we didn't turn it into a 'hey, he could die and this and that,' we didn't go to details. We let them know that there's a problem and that he's got to be careful and know, get these tests all the time and and make sure that he's okay. But as they grow up, they get more curious. Maybe they read about it on the internet, ask more questions. So like I said before, we're very open with our kids. And, you know, we have to word it properly. You know, and it's really telling the truth that, yeah, I'm fine right now. And I could be fine for the rest of my life and live a long, healthy life. And that's why I take these tests, so we could catch anything, just in case. So always, I'm always positive, we always have to be positive about it. I really don't want them to have to worry until they have to worry, which is when I feel and look ill which hopefully does not happen during their childhood, or ever.
PSC Mami- Monika 11:09 Yeah. That's our hope right. That's what we're working for.
Stuart 11:13 Yeah, yeah.
PSC Mami- Monika 11:14 Did you sense any shift in your parenting once you were diagnosed, and you're kind of from having those thoughts initially of like, uh oh, this is not good. And then eve...you know, obviously, you learn more, but has there been any shift in how you think about parenting, how you show up for your kids, because of your diagnosis?
Stuart 11:34 I try to spend a lot more time with them. Life was all about my career and work-- and I did spend time with my kids. I didn't work on weekends or anything. But I did, as I said earlier, commute four hours a day, and I leave in the morning, and when they were really young sometimes come home and they're sleeping, you know, sleeping at night, and they're sleeping in the morning, when I leave. When I was diagnosed, I decided, you know what, it's time, I wasn't changing my career. Cuz I love where I work, but and what I do, but it's time to move our family closer to the city number one, so that I'm around more for the kids in number two, so I could be around what should be some of the best doctors in the city to help handle this. So it was a long road selling the house took us five years, we had this beautiful house, but you know, it just it was a tough real estate market, but we finally sold it and it's been the best move we've ever made, I get home I can still spend plenty of time with my kids, I'd put my kids before work. If they have anything going on, I just work from home that day period and I make sure that I'm there with them. So everything now is around spending as much time as I can with the kids being there for something you take for granted before.
PSC Mami- Monika 12:48 That's a pretty big shift to make and a choice to make. Are there on the day to day, can you think of anything that has shifted for you and how you approach parenting?
Stuart 12:58 On a day to day, you know I just try to be more positive around my kids anything that's going on to the back of my mind with my health or anything, I try to just keep it there speak to my wife later at night and that there and just make sure my kids know that I'm happy and healthy and and that you know I spend time with them. They see me try to exercise and stay in shape but I make sure they know it's so that you know I can be in good shape and and keep this disease under wraps and as much as I can by being healthy.
PSC Mami- Monika 13:31 And what are the some of the things that for you come up that maybe you don't share with them. What are, as a dad, what are some of the challenges- I told you you're the first dad I've interviewed PSC Mami, so super excited to get this perspective. What are some of the things that come up for you as a dad that you think about or worry about that? Maybe some of the other dads listening also might worry about?
Stuart 13:53 You want to make sure that they know you're there for them. You know as a dad, I just I know know most fathers in this world there know the breadwinner is that's changed that dynamic has changed a little to both spouses, which is great. In my particular household. I'm the only moneymaker right now. The only support so should something happened to me, that's going to be tough. So, you know, I just really made sure that they don't worry. Right? So you know, the feelings of fear when I get that MRI that just doesn't look good. You could tell something progressed, you know, even though I feel good, you know, something's going on. And now you've been through it. Things change quick, and I worry that that happens, but I don't show them that worry. That's really between my wife and I until something happens. If I feel any pains or you know, sometimes I'll feel quite fatigued. I don't know what's going on in my body. I mean, I do have two autoimmune diseases, but I don't know if it's old age, being out of shape or if it's PSC. But you know, I'm not going to- they'll see when I'm tired. And I just explain to them out that I worked really hard. I kind of keep it at that. I don't want to them to know that it's a disease making me tired. If that's the case, I find other ways to spend time with them. If it's not active ways that I'm too tired for, thankfully, I don't have the fatigue so bad that I just have to lay down all day. So you know, sometimes if I'm feeling like pain in my upper right quadrant, you know, that maybe something's clogged in a bile duct or something, that's what's happening. You know, it could go on, on and off for days. And that makes me nervous. And I, again, I don't portray that to the kids, it's not their responsibility to worry about it. That's mine. And my wife's until the time comes where maybe something is worse, so, you know, I kind of feel bad leaving it from them, but I feel like I'm doing the right thing. They know I have this, but they don't have to know the details quite yet.
PSC Mami- Monika 15:55 What are some of your favorite memories you have with your kids?
Stuart 15:59 Oh! When they were first born, of course. You know, just like when it snows out. I know you guys don't get that in California. When it snows out. I mean, we have some good videos that pop back up on Facebook of us playing out in the snow. Now, them throwing snowballs at me and stuff. You know, those those times when they were younger, and I could just go out and play with them and do fun things. And then when they'd be dancing and singing around in the house, where the family likes music a lot, so they would just put on music and start dancing around. And you know, that's grown for one of my daughters. At least she does theater and singing and everything. So you know, I missed- I'm enjoying those times now. And I missed those times when they were younger, it's just no worries in the world.
PSC Mami- Monika 16:50 Do you remember what it was like that first week? When you moved, well maybe not the first week, because obviously moving is stressful in general. But when you sort of realized your commute changed, and you had all this time? What was that like?
Stuart 17:04 A sigh of relief, it was a sigh of relief, I have a lot more energy now. You know, one, any disease you get one thing you can do to prolong it. In my opinion, I'm not a doctor, but in my opinion is to reduce stress. And the amount of stress it reduced on me has been tremendous. You know, I just have so much more energy. And then you add in the time I could spend when my kids I get home and the kids aren't sleeping or on their way to bed, they haven't even showered yet. Sometimes they're doing their homework, you know, so they come running, and you want to show me what they did talk to me about what they did for the day. And, you know, it's great that I can have that versus before we move that's kind of yeah, they're either in bed, or they're about to go to bed at the too tired to talk to me,
PSC Mami- Monika 17:48 What are some of your hopes for your kids for their future?
Stuart 17:52 I mean, I just hope they're successful in whatever they want to do. Now my daughter wants to be in theatre and on Broadway, you know, if she makes it great, if she doesn't I am confident that she'll find something in the area that will make her happy. Whether it's teaching it or just anything, journalism, who knows, just being in front of the camera is what she wants. So, you know, I want to see them succeed. And whatever makes them happy. My son, he wants to ride trains, he wants to be a train conductor, you know, he's 16. He likes riding the New Jersey Transit a lot. And he's become interested. And you know, if that's what he wants to do, and it makes him happy, and he finds a way to be successful in it, then then that's it. So and then my youngest, she's too young to figure out what where she's going to be, you know, really long story short, I just want them to find what's important to them in life and just stick with it and go for it and not have high anxiety over every little thing
PSC Mami- Monika 18:48 As you shared, it sounded like your wife is a big support system for you.
Stuart 18:53 Huge.
PSC Mami- Monika 18:53 Can you talk a little bit about that, and what that journey has been like for the two of you?
Stuart 18:58 Yeah, show me she's my rock. You know, she, she just, she takes care of the whole household. I mean, I'm done at work, she's taking care of the kids for good or for bad. You know, my son has mental health issues, she's got to deal with a lot of it. You know, she also comes back to me when I'm not feeling well, you know, she's right there understanding, making sure I get rest, or, you know, whatever I need to do forcing me to see a doctor even though I think, you know, things will just pass over and let's just not deal with it. Just going to the conferences, being involved, and just really being a huge support system and everything I do in my life and everything that I do as far as getting through ulcerative colitis and PSC and just being that positive support holding me up showing concern and yeah, taking me to those doctor's appointments, like the colonoscopies when she's sitting around for 45 minutes and then has to deal with me after all, everything. So, you know, she puts up with a lot, and she's just stays strong and continues taking care of the family, you know, I try to do everything I can to make sure she takes care of herself. Try to make sure that, you know, we do things together, whether as a family or just me and her. As far as vacations, when there's no COVID around each year, just make sure she has time to herself. And that's difficult with our family dynamic. I feel like often I'm not doing enough, and she's doing so much, which is a terrible feeling. But I could only do my best.
PSC Mami- Monika 20:34 And do you all have, we've talked often on here about the support systems, we need to make it through as parents with PSC, are there support systems that you all as a family have in place that help with those moments. So it sounds like there's moments where both of you and her are at doctors, you're at procedures, how do you as a family kind of find support for those moments?
Stuart 20:56 *Sigh* We don't find enough, that's a big, big issue. We don't have grand- parents that- our parents, the kids', grandparents that live close enough really to support us. So it's really just us supporting each other at this point, which is tough, you know, and mentally, it's, it's tough. And, you know, we really need, we really should seek more mental support. As a family. Like I said earlier, my son has mental health issues, and we try to support that and get him support as much as we can. And it makes it real difficult on us. But one thing I could say to any father, mother, family, learn from my mistakes, I guess, and, you know, get that support. And that's something I know we need to do, we will do, it's always on my mind, we have to take care of ourselves, if we're not there for... if we're not there for ourselves, we won't be there for our kids or each other.
PSC Mami- Monika 21:50 And I definitely understand it's a real challenge when you don't have family nearby, we're in the same boat. So, you know, part of this podcast is me also looking for tips. What do you what does everybody do? How do we do this,
Stuart 22:03 Ah, it's tough
PSC Mami- Monika 22:04 How do we find the support we need?
Stuart 22:06 It's tough. You have to have a good relationship with your managers and your co workers if you're not self employed, and make sure they understand and be open and honest with the family dynamic. So that they're understanding if you need to work from home a certain day or, you know, take an extra day off or you know, you have to, you know, cut out at three o'clock, to take your kid to a doctor or whatever the case may be, I think it's really important that you're open and honest with your work superiors. So they understand, and they're flexible, and they don't give you a hard time. And I think any human being managing you would would understand that. I'm wide open with my PSC and everything with the people I work with so that they understand
PSC Mami- Monika 22:51 How were those conversations for you? I know people always have questions about do I say anything at work? How do I tell people? How much? What was that process like for you?
Stuart 23:02 I mean, I've been through several managers. So I've had to go through this at least twice. You know, I think when the first appointments come up, that we have something medical, usually like a colonoscopy. You explain to them, you know, I have to take this day off, I have a procedure, of course, they're always concerned, you just explain what's going on. Or, you know, you have those company gatherings, whether it be through the holidays, or random and everyone's celebrating with some alcoholic beverages, and you have to explain to everyone why you're not drinking alcohol. I don't like to be a Debbie Downer. So I just say, listen, I have a rare liver disease. Let's leave it at that. And, you know, everyone enjoy, and I have my non alcoholic beer here. So we have a good time. But you know, especially when you have to take days off, that are related to anything medical, they can support and for your superior to know why. So I just explained to them, I'm getting this medical procedure, I forget it every year because I have this rare disease. And I explain it to them. And you know, they understand they're like, oh, yeah how do you go through this. And just let me know how I could help. I think most superiors will be understanding of that. Either that I've just been really lucky with good ones.
PSC Mami- Monika 24:16 I know that in the conferences, you're often talking to folks about your finances, sort of how people prepare that side, give any thoughts or advice of how within family planning or if that's too broad,
Stuart 24:29 I'll make sure you do with whoever your professional is you do a financial plan, really get to know what your current situation is possible things could happen in the future, you know, plan out scenarios like Okay, what if I have to stop working at age 50? That's a really young age or 45. Or, you know, what could happen? How much do we have to save up every year to make sure that we're successful with that, and we don't have big issues. So you know that that'll help you with your budget, you know, sometimes you're going to have to make cuts, but that money to savings and investing and let that grow and just really put yourself in a position. You know thankfully for myself before I was diagnosed, I had life insurance, and that I had purchased. And I happened to purchase, literally a month before that I had an old colleague of mine that was now selling like the Aflac type of insurance, Cancer Insurance and accidental insurance. And I was like, why not? Now, it's, I've always wanted that to be offered by my company, I don't have it. And it's not expensive, so why not. And now all the sudden a month later, I have this thing where I have the cancer screenings every year and you know, it gets me a good chunk of money every year. You know, and sometimes it doesn't matter that you already have PSC. So look for things like that. So you can look out, understand your company's benefits, especially the disability benefits and the life insurance benefits. If you could work it into your budget, get the extra life insurance benefits, definitely get the disability benefits, maxed out the most you can, because those you don't need to take medicals, those are given to you. So make sure you take advantage. So again, do the financial plan, work your budget and understand your work's, medical benefits. Because if you do have to leave earlyand its for disability, that's going to be a huge help. So I hope that helpful
PSC Mami- Monika 26:26 That is definitely something I wish I knew before I cancelled my disability insurance, like a couple months before I was diagnosed.
Stuart 26:33 Oh god, that's tough.
PSC Mami- Monika 26:36 So I'm a big proponent now people go in to talk to somebody who knows what they're talking about, you know, and getting things in, in line and in shape as much as we can.
Stuart 26:46 It's important you don't want to think about money, especially, you know, I got into my career for money. And now it has nothing to do with it. No, just family's more important and living the life you have. And you want to prepare yourself for that. Even if you have PSC, you know, work a budget, if there are some things you want to do to experience life, no certain vacations every year, you know, just save, save wisely aside for those and do it modestly. And make sure you do live your life. Don't let the disease take over your life, and financially either or physically. And just ya know, live the life you can, you know. Right now, I I feel- I know I have this disease, I know it's progressed, but I feel fine. So as long as I feel fine, I am not going to sit and worry about it every day. So if I do, it'll just make me sicker. My kids will see it, it'll drive my wife crazier than I are drive her. You know, I just feel it's not the way to live life.
Stuart 27:39 I was given someone to mentor several years ago, and this guy went through liver biopsies and this and that. And it seemed like he was like me kind of asymptomatic. So I don't know why his doctor was putting him through all this. Every time I spoke to him, he was just negative, like he was gonna die tomorrow. But this I mean, this guy's in much, much better shape than I am. You know, I tried to talk to him about just, if you feel fine, live life, don't worry about it every day, get your testing twice a year and just do it. So it's so it's sometimes it's tough. So it's easy for me to say here on this podcast, but not as easy to do. So, you know, all I could say is encourage people to do out there, the fathers and everyone who has this disease or has a loved one with it. Just you know, as long as everyone feels good, maximize your life experience. The best you can.
PSC Mami- Monika 28:30 What's one way you feel like you're really living your life right now?
Stuart 28:34 How do we go on a vacation every year? Before COVID I was supposed to go to Europe with the family three nights in Rome. So every five years in my company, I get a one month sabbatical, which is amazing. So I'm now overdue. So we're going to go to Rome, off the coast on a cruise across the Madrid back. And we were so excited and had a lot of other trips planned that year, including PSC conferences and things along those lines, and then COVID hit. Now we have all these credits built up that we have to use. So we're going on- we go to Disney every other year. We're since my kids were born, they since eight months old, they've gone to Disney every other year. So we'll go in this year and the opposite years, we go on cruises. And this year, we happen to be going on both because we have to use credits. So you know, I live my life by to the best by just creating experiences for my family by traveling and just try to have activities on the side of that.
PSC Mami- Monika 29:34 That's definitely something to look forward to. Yeah. Is there anything I haven't asked that you want to share? Or again, thinking of those dads out there that might be listening, something you'd like to share about your experience?
Stuart 29:47 Yeah, I'll just share that I understand how tough it is. Especially having kids, going through this, worrying about your career, your job, your relationship. I'm sure you know I've seen with other diseases and PSC, relationships get broken apart. And you can't let this disease control you, just don't, you know, stay strong, stay positive, do everything you can to feel good. And you know, and don't take the life that you have, the kids, for granted. Spend time with them make the time, I have a very busy career. We all do. We all feel like we're the busiest people alive and it doesn't matter. It's your life, you can make the time. That job needs you and they're going to keep you just, you know, make sure you balance that life out, do your responsibilities at work, but make the time for the family.
PSC Mami- Monika 30:37 Thank you so much. It was so awesome having you and I really appreciate your perspective.
Stuart 30:42 It's my pleasure. Thanks for having me again, and glad I can help.
PSC Mami- Monika 30:49 Gracias for joining me and bearing witness to this story today. Every PSC journey is unique, and I was so glad that we were able to share this on today. Please reach out to me if you'd like to share your story at the intersection of PSC and parenthood. There's a link at the website pscmami.com as well as other stories that have been shared over the years. Also, if you could share these episodes with your networks, you never know who they may reach in their time of need. Gracias.
