Emily has her son post diagnosis and survives UC, PSC, cancer and transplant with optimism
Emily has been battling serious illnesses, PSC, UC since she was 19, and liver cancer at 33. As a mother, she has done her best to create an optimistic life with as little fear for her young son as possible as she has survived a colectomy, cancer treatment and a liver transplant. She discusses what it was like to be in survival mode for most of her adult life, what it meant to be a “sick mom” and how her outlook since transplant is all about her zest for life and what might come next.
Bonus resource mentioned by PSC Mami in the podcast: Selfless Snowman | Doc McStuffins
Transcript
Emily 00:00 You know, from day one, I've done the best I can for him. And I hope that you know, someday he'll be he'll be proud of me.
PSC Mami- Monika 00:18 Welcome to PSC Mami where we share stories at the intersection of PSC and Parenthood, PSC or primary sclerosing cholangitis is an autoimmune disease, which affects the liver. All stories and information shared on PSC Mami are personal experiences and should not be used as the basis to treat yourself for others. Today we're talking with Emily and she reached out with to be through Facebook, and we've seen each other on the chats on the marvelous support groups online. And she has a very interesting story also diagnosed young and has gone through many of the challenges that PSCers are faced with or think about. She lives outside of Sacramento with her husband and her son. Welcome, Emily, thank you for being here.
Emily 01:12 My pleasure.
PSC Mami- Monika 01:13 You were also, as we've heard some other PSC women, that you were diagnosed young, what was that experience like to be was at 19 and diagnosed with PSC?
Emily 01:25 Yes, I was 19 years old, I was a freshman in college, very excited to go off to school and start my young adulthood. And all of a sudden, I started having really bad gi problems. And I went to the doctor and they said, you know, you're just starting off, you're going to college, it's just nerves, it'll be fine. I wouldn't worry about it. So one night, my mom went to drop me off back at school, I used to go home on the weekends, because I was still liking to be home. So I was back off at school. And all of a sudden, I had really bad, bloody diarrhea. And so I called her immediately. And she came to pick me up when we went straight to the emergency room. And I've never had pain or discomfort like that before. So we went and go ahead and we got looked at. And they said, you know, we have no idea what's wrong with you. Why don't you just come back tomorrow during the daylight hours, and we'll do a whole gi workup. So we did that. And they did an emergency colonoscopy and did a whole bunch of blood work and diagnosed me with ulcerative colitis. Right off the bat, I fast forwarded through all of those tests and treatments. And they said, but wait a second, there's something wrong with your liver enzymes. And so that's when they told me you know, it looks like you have primary sclerosing cholangitis on top of the ulcerative colitis. And at 19, I thought that that was just absurd. I just had these horrible symptoms of gi distress. And that was my main concern. And having something like PSC was not even a factor on my radar. They sent me to a hepatologist. And he went over the ins and outs of what PSC was. And I kind of just sat there dumbfounded, and my mom, and I just kind of looked at him with blank faces. And when he said, you know, you're probably going to need a liver transplant sometime in your life. That was just, we just wanted to say, No, no, what are you talking about? That's just not even, that's not even gonna happen. So it was quite a shock to be blasted with this. Basically, as I was starting off with my, you know, my life.
PSC Mami- Monika 03:33 Do you remember your conversations with your family or with yourself at that point of diagnosis?
Emily 03:40 You know, at the time, I was never sick as a young child. And so now all of a sudden, having these serious problems and having to take all this important medication that made me even sicker and actually had to drop out of school because my symptoms were so severe that I couldn't make it through my classes and being away from school and like, not close to a bathroom living in the dorms. It was really disheartening having to go back, and kind of I felt like a failure almost that I couldn't survive, going away to college. But then at the same time, I realized, you know, I have this serious thing I have to deal with now. And so my main focus was just to do what I could to get better. And, you know, try to to manage this and kind of restart what I thought my life was going to look like, you know, I had an idea that I was going to go to college and get this career and now I was kind of faced with this, okay, we got to take a step back and realize you might not go to college anymore, and you might not have this career. And so it was it was frightening, and it was overwhelming. But you know, I tried my best to make do with it as best I could.
PSC Mami- Monika 04:47 And how did you go through that restart? What did that look like for you?
Emily 04:52 You know, what I thought my life was gonna look like was just gonna have to be different and that's fine. I accepted my diagnosis, especially ulcerative colitis pretty easily because it was first and foremost, I had the most symptoms from the UC, that was part of my everyday life. You know, I couldn't go somewhere because I was worried about bathrooms. And so that was my main focus. And so it's just getting through each day with the symptoms and the best that I could. So I decided that I would continue my education at home, there was a local community college that I could still take some classes that were a little easier, but I still got college credit. And then my hopes was to get strong enough that I could return to college and, you know, be able to get my my four-year degree, once I kind of swallowed the fact that this is what I have to deal with. I just basically tried to make the best of it and be as optimistic as I possibly could.
PSC Mami- Monika 05:45 You know, your PSD wasn't quite as present. What was that process like? What was it to think about? This one that, in some ways has some scarier outcomes
Emily 05:55 Right.
PSC Mami- Monika 05:55 that are placed at your feet, even though if you can't feel it, even though that UC often plays a bigger part in our lives, for those of us who are diagnosed with both. What was your relationship with a PSC? How did that develop?
Emily 06:09 Right, so for the most of my 20s, the PSC, you know, which is always kind of this cloud that followed me around, but like, it wasn't raining yet, you know, it was something on the backburner that I had to think about. And it still was looked at, but I was fortunate enough not to have as many symptoms present. So I kind of just ignored it, honestly, as much as I could. So you know, it was there. And I worried, but not to the point where I was gonna freak out about it, basically, I was diligent and trying to stay as healthy as I could. And to start with the fact that, you know, yes, this may be an issue, but for now, I'm gonna just hope that it stays dormant, you know, one step at a time.
PSC Mami- Monika 06:47 When you say you tried to be as healthy as you could, what did that look like for you?
Emily 06:51 That was, you know, eating as healthy as I could, trying to exercise as much as I could through the fatigue and the discomfort, but honestly, you know, the UC impacted my life, that I to the fact that I didn't want to do a lot of the things that I could do. So I had to just kind of readjust with what would work. And so eventually, through diet, and just, I guess, perseverance, I decided to get back to school, I graduated with my degree, decided that, you know, wasn't going to let you see and PSC stopped me. So then after I graduated from college, I got married, actually, two months after I graduated to my high school sweetheart, so he actually knew me before I was sick. And so he was with me through all of the diagnosis of PSC, and UC, and was there, kind of hold my hands put me through this, it was a great honor that he still, you know, wanted to be a part of my life. And I thank God every day that he, he has been there for me from day one. So we got married, you know, enjoyed newly married life as best we could. I had a couple small jobs here and there that allowed me flexibility. If I didn't feel well, I was able to, you know, call in sick that day. And I had a lot of supportive employers that understood that I was dealing with two rare autoimmune diseases, and it was a serious thing. We decided to consider having a baby about four years into our marriage. I'm sorry, excuse me three years into our marriage. It came quickly. And it was easy. And very exciting.
PSC Mami- Monika 08:28 And had you spoken to your team, like your hepatologist, or your GI doctors, when you're doing that consideration?
Emily 08:37 Yes, I talked to both of my physicians about it. And they were hesitant but helpful in my decision. They told me you know, it, risks can be involved, healthy women can have babiess, sick people can have babies. So it all just kind of depended on what I was comfortable with. We weighed the pros and cons, and decided I was kind of the healthiest that I was going to be. My flare was kind of minimum with ulcerative colitis, and the PSC was, you know, still there, but not causing enough of a problem to deter pregnancy. So we just decided to we'll give it a shot. And if it happens, it happens if it doesn't, it doesn't and we'll be okay with either way.
PSC Mami- Monika 09:21 What were some of those discussions with your husband?
Emily 09:24 Like, you know, I think my husband was really excited to start a family. I obviously was more hesitant because I had to do the majority of the work obviously. I was worried that symptoms would get worse. I was worried that, you know, I could possibly lose a pregnancy. I was concerned that medications would impact a pregnancy. I was definitely a little more I guess hesitant about it, but still, you know, we wanted to have a family and it was something that I think we both were willing to to try.
PSC Mami- Monika 09:59 And what was your Pregnancy like?
Emily 10:01 I got pregnant off the bat. So it was really easy to get pregnant. I was very fortunate actually cried when I read the pregnancy tests because I was honestly, I think really surprised that it happens so quickly. And all of a sudden, here I am, you know, and this is happening. My pregnancy was probably pretty normal to a lot of pregnant women, you know, we had morning sickness. And, you know, the tiredness is kind of hard when you have, you know, constant gi problems with the UC, that was an issue, I was fortunate that the PSC was manageable, and actually only had one time in the hospital with cholangitis. And that just required a few days of IV antibiotics. And then I was able to continue with my pregnancy, pretty healthy. Um, he did arrive early, we had a scheduled c section, but I just, I guess he wanted to come early. And so I went into labor about two weeks before the scheduled c section. But we decided to go ahead with a C section anyway, because my gi doctor and my hepatologists were both on board for that, that it'd be easier on my body, I didn't gain as much weight with my pregnancy, I think it's because of the GI issues were a factor. He was a little smaller, but he was totally fine and healthy and the biggest blessing and that we could have possibly imagined.
PSC Mami- Monika 11:21 Once you had your son, do you think that having PSC and UC, do you think they affected how you approached mothering?
Emily 11:32 Definitely, you know recouping from the C section and getting back on my UC meds. And getting back on track was seen, you know, gi doctors and hepatologist. You know, raising, raising a newborn is hard, it's hard for healthy moms. And honestly, it's a real challenge for sick moms to I was grateful that I was able to be a stay-at-home mom. So I was able to spend a lot of really good quality time with him, but also be able to be flexible with my own needs, if I needed to be close to a bathroom, or if I need to take a nap because the fatigue of the PSC was really, really draining on me at that time. In all honesty, I think pregnancy, I don't, I don't want to say it's made the PSC worse, but I think it just kind of created this environment where maybe I was more attuned to the symptoms of PSC looking at him, I just realized, you know, I need to be the best mom, I can for him. And I knew that there was going to be moments or, you know, times in the future that I was going to need to have, you know, possible liver transplant or I was going to have to have, you know, possible hospitalizations, with motherhood and my whole philosophy, it was just a day by day, hour by hour basis with me, because that's kind of how the disease is you can feel, you know, pretty good on one day, and then the next day be completely different with, you know, a fever or severe fatigue. And, you know, I just had to become a really flexible person, which was kind of different for me, because I used to, like, always be in control. And so giving in to the randomness of you know, a newborn and the randomness of you know, to pretty serious diseases, I just decided, you know, I have to just give it up. And I'm not going to be the perfect mom that I think I'm going to be, but I'm going to be just as good as mom as I possibly can. Because that's who I am. And this is the best that I can do.
PSC Mami- Monika 13:31 Can you think of any specific occasions that might exemplify that?
Emily 13:36 I don't know, just being able to be home with my son. I, we got to read a lot. I got to you know, play with him a lot. You know, there was always the time I was worried to take him out in public because I was always concerned. You know, what if I get sick and I am out there with my baby, but I was really grateful to have a support system with my mother and I don't know, I, no actual moment stands out. I think it was just, you know, every time I could be with him every day, I could be with him. It was, I was his sole focus. And he was mine. And I just really cherish the times we could spend together. And you know, the if we didn't, if I didn't feel good that day, we could just kind of hang out at home, if it was a good day, we could go to the park. So I just had to realize that everything was going to be a day by day basis. And that was okay. Because that was going to make me happy. And that was going to be a good experience for him. Because at the end of the day, I just wanted to be the best mother I could and in that moment, because I didn't know what the next day or the next month or the next year was going to look like.
PSC Mami- Monika 14:37 And what did those next months and years look like for you what came after having your son?
14:45 After my son was born, my ulcerative colitis got actually worse. It got to the point where I had tried all the medication out there. I did all the injectables, I did all the IV treatments, and it got to the point where my large intestine was just not savable. So I went ahead and had a colectomy and a temporary ileostomy. And a j pouch formed, he was three years old. That was really, really stressful time because I had lost so much weight, I could really barely pick him up, I had to have my you know, my mother come over and help me throughout the day with him, because it got to the point where I just couldn't function. And so I think the the sheer fact of losing weight and the horrific, all sort of colitis symptoms that I had, and the PSC fatigue, I just my body couldn't handle it anymore. So we went ahead and scheduled the surgery. That was the best decision I ever made, honestly. Because for once I finally was able to feel like I was taking a valid effort moving forward to try to get rid of, of this situation, one more, more roadblock into being the mom that I wanted to be.
PSC Mami- Monika 15:56 And what was it like going through major surgery, having a three year old?
Emily 16:01 Having the colectomy and the J pouch. And all of that was very stressful, to be honest, I was very nervous going into the surgery, obviously, and trying to prepare him for the fact that I wasn't going to be able to pick him up as much and I was going to be gone in the hospital. So I got him a little medical kit. And so I told him, when mommy comes home from the hospital, I need you to give me daily checkups. And so he thought that was the cutest thing in the world. And so he would take my my temperature with the little plastic thermometer and pick my blood pressure like around my wrist with a tiny little blood pressure cuff. And so I tried to explain to him, you know that mommy was doing this to get better, and that he was going to be part of that process to help me heal.
PSC Mami- Monika 16:40 And he did in more ways than one did your health improved from there? How were you feeling after you had your surgeries?
Emily 16:47 After the full recovery of the J pouch and everything, it was amazing, I was starting to finally feel healthy, I could leave the house with confidence. I was gaining energy gaining weight, I was a much happier mom, because I didn't have that stress of the of the UC. I knew that PSC was still on the back burner. But for me, it wasn't a daily reminder. So actually, my husband and I considered that we would might have another baby. And so we went to the all the high risk specialists. And they looked at my chart and listened to what I had to say. And they said that they would bring it to their board and give me a call later. And I remember getting that phone call. And they said that it was in their opinion that if I had another baby that it could be catastrophic to either me or the baby or both. Because at this time the PSC had, unbeknownst to me, I had developed the portal hypertension and the esophageal varices that was slowly getting worse. And so they decided in their opinion and their expert opinion, I guess, that another pregnancy would not be a good idea.
PSC Mami- Monika 17:59 And what how is that for you? how was there receiving that news?
Emily 18:04 And it was, it was challenging. I think I was more emotional than I thought. I loved the fact that I was able to have one baby. And the fact I always thought I'd have to I was really kind of sad. I was sad. Honestly, I was disappointed. I was pretty heartbroken that my son wouldn't have a sibling. But at the same point, I was almost relieved that, you know, it was going to be okay that I had one baby, I was very, very grateful that I was able to have one. And you know, I was gonna be okay with it. Eventually, I mean, I there was times where I would get very jealous because at that time, a lot of my friends were having babies and I had to work out things of jealousy for sure. Part of me said, you know, let's just risk it anyway, you know, it'll be fine. And my husband I decided, you know, if worst case scenario, it would be, it would be really horrible. You know, that, that my son to be left motherless or, you know, we just decided the risk wasn't going to be worth it at that time. And we were just going to be grateful for the one baby. Yeah. And honestly, looking back that was that was a very good call that we made. Because I had no idea what PSC had in store for me at that time.
PSC Mami- Monika 19:19 And what did it have in store for you?
PSC Mami- Monika 19:21 The portal hypertension and the esophageal varices got worse. I was put on medication to try to treat those. I was very lucky that I never really had the itching or the ascites. But I certainly had the fatigue. And I certainly had the internal complications. I got to the point where my hepatologist suggested that I try a medical trial. And so while I was getting worked up for that, going through all the MRIs and the CAT scans and all the blood work, they actually found a couple spots on my liver. My hepatologist that you know, that doesn't look right. That could be cancer. And I just, I remember in his office, I was like, I almost started to laugh if that if I just was like, really, like, that's where I'm at now. Now I have cancer, like, seriously, I went through UC and I have PSC. And now you're telling me I have liver cancer? So, um, it was, it was quite alarming to finally see that. Okay, now PSC was going to rear its ugly head and become a major factor of my life.
PSC Mami- Monika 20:27 And how old was your son at that point?
Emily 20:30 My son was nine years old. So they went ahead and put me on the transplant list right away when they realized that yes, in fact, they did have cellular carcinoma. On top of the PSC, obviously, it was, it was it was a relief, it was a scary sense of relief. But it was finally, again, another step that I was taking to become that healthy mom that I wanted to be. Because often, so often, these diseases, they have a mind of their own, and we can do all we can to try to prevent them or to keep them at bay. But at the end of the day, you know, we're kind of at their mercy. So I was very relieved that I was finally going to get on the transplant list, obviously very frightened that, you know, an option might not become available. You know, honestly, I was confident from day one, that everything was going to be okay. It was going to be a challenge. And it was going to be a journey that I didn't really want to have to take, but it was a road I was on. And I was willing to, you know, do it. kind of happy.
PSC Mami- Monika 21:41 Yeah. And you're in California, so many folks may or may not know that California has a very high wait list time. What was that waiting period like for you?
Emily 21:56 Yes, California is very, very long wait. And so they actually told me, you know, maybe you should consider trying to find a living donor, while we treat the cancer. So I actually reached out to some friends and family and I had some prospects, I'm kind of waiting in the wings. But while they were treating the cancer, they decided that it would be best for me to go ahead and get a full cadaver deceased donor liver. And so I waited, waited patiently. And in the meantime, they treated the cancer, I was able to, I guess, honestly, I was very blessed. Because I guess my symptoms, again, were more internal than external. A lot of people didn't think I was sick, even though I was I could see the yellows of my eyes, I could see the wasting of my muscles, I could see me losing weight. They didn't know that I took naps throughout the day. But you know, I waited, I got treated, and I was on the list for about one to two months before I got the call.
PSC Mami- Monika 23:02 And you talked about how with your first surgery that your son was really involved, or you involved him when he was three. What was that like when he was older?
Emily 23:13 When he was older, it was a little more of a challenge. I think when you're younger, they have a certain sense of, you know, you can, they're kind of naive to it, like mommy has a boo boo, she's going to get better, it's going to be fine. When he's older now he realized, okay, this is a little more serious. This is going to be a wait and see. And I'm trying to explain to him organ donation trying to explain to him, you know the process. But he's, he's a very in his head boy, and he likes to know all the facts and all the figures and he likes to know it. So we sat down and explained everything to him. And, you know, I think he was fine with it. And I'm speaking for him, but it seemed like he was well versed with what was happening. You know, he did his best to speak but to understand it, and we did our best not to, you know, put any fear in him. From day one. We said, you know, this is going to happen, and it's going to be fine. And it'll be fine.
PSC Mami- Monika 24:08 And how is that holding that space where you're you have your own feelings, and you're also trying to protect his feeling. I guess I'm putting words in your mouth. I think I know, how did you approach that?
Emily 24:21 No, it's true. Yeah, no, it's, um, there was always a sense of optimism. I was. Like I said, I've always been very optimistic. And though sometimes that that bites us, but sometimes it propels us. And, you know, I just tried to relay that optimism in him that you know, it's going to be okay, I'm going to need your help. And I'm gonna need your support, or it's going to be okay, because you know, mommy wants to be as healthy as I can for you. And so I really feel that you had a good grasp on the situation. I feel like we were prepared and so when I got the call in the middle of the night, of course it was in the summer he was out school, he had had a playdate that whole entire day and I had done errands and it was just like any other day. And I got the call in the middle of the night and you know, hands shaking answering the phone and realized that I had to pack up and go, and I did what I had to do. And then I went to go talk to him in his room, and at night, obviously, and I woke him up, and that, you know, mommy's gonna have to go, they have a liver for me. And he just kind of sleepily said Yay, and rolled over and went back to sleep. So, you know, it's like, he was kept aware of the situation, but there was still a good amount of distance to keep him, you know, safe and comfortable.
PSC Mami- Monika 25:39 And you had a little bit of traveling to go to your transplant center, what was it like planning for his care? While you were thinking, not only kind of planned how to get there? But yeah, what would happen? Once you got that call in the middle of the night? How did you prepare for that?
Emily 25:56 Right, I was actually very fortunate that if you have liver cancer, and you're on the transplant list, you get a certain number of exception points. And so my coordinator was very open with how I was doing as far as my MELD score was, you know, how I compared with the waiting list for my blood type, and everything. So I was kind of getting to that point where she said, it could be tomorrow, or it could be six months from now. But you know, you're getting closer to that, to that call. As we were kind of heading into the summer, I was thinking, you know, this could be our timeline. So I packed bags of clothes, and I gave them to a random friend just in case, you'd have to go over to their houses, I made these for a house just in case people had to come in and, you know, get things or do things for us to take care of, of our son, I was very lucky that my in laws live next door, and my parents live very close by so I had a very strong base of support. Knowing that, you know, I could count on them to, you know, to take care of him at any at any moment's notice. And tried to get him involved in a bunch of summer camps and just keep him happy and occupied, for his sake. And also for mine, because I didn't know, you know, how long my recovery was going to be? Or what that looked like.
PSC Mami- Monika 27:11 And how was your recovery? And what was his role in that?
Emily 27:16 My recovery was actually pretty, pretty good. I was in the hospital for one week, which was, again, I was very, very fortunate that things went so smoothly, he decided to want to come visit about the third day, and I was out of the ICU, and a lot of the IVs. And by the tubes were gone. And so I was probably a little less scary to him. He came in and you know, of course, just wanted to get involved and hug me and also just kind of get a lay of the land and see, you know, what's new? And what's different about me, and why is that attached to you? And what does that do? And what does this do? And I remember one moment, he I asked him, you help me walk because I needed to get my laps in. And he was super excited to help me do that. Because at my transplant hospital, if you did a certain amount of laps, you got a T shirt. And so I said, Dude, dude, you got to help me get my T-shirt. And so we were walking the halls and you know, I was in a lot of pain, obviously. And he turned around and he said, Why are you walking so slow? And I said, Hey, wait a second, there was a time when you were just learning how to walk and you were walking really slow. So don't give me any of that though. It was kind of a nice chuckle that we had. And maybe he'll remember that as a funny moment. So yeah, he stayed around. And then he, you know, wanted to go see the city and see the sights. Yeah, it was it was good to have him there to kind of see, this is, this is what happened and everything's gonna be okay and saw me smiling. And, you know, it wasn't all smiles. There were lots of moments of, you know, little, little discomfort, little stress, little, little worry, but we tried our best not to, to give in to that and let him see that. I've always tried my best be all smiles with him. Because I didn't want him to look back and think, you know, things were scary. I want him to look back and say wow, my mom was tough.
PSC Mami- Monika 29:11 And how was that for you to have that motivation to be tough, or that pressure? We can I guess look at it either way.
Emily 29:19 Oh, for sure. Definitely. There were days where I just needed to recuperate. I needed to kind of take in everything that happened. I guess I was in survival mode for so long. I guess since day one at age 19. I was in survival mode. I had to get through each day get through each symptom. The best I could realize, I don't know what my life has in store for me. I don't know what journey that is. Do I need a transplant? Maybe do I not hopefully, you know, so I I tried my best to just give in to those moments where I needed. Just peace or just myself, because I knew if I had to take care of him or be around him, there were there were moments that I didn't want him to see. That would just be, you know, too overwhelming. So he was my motivation to get better. But he was also my motivation to just, you know, step back and take a deep breath and realize things are different, good and bad. We've been through a lot together, I hope he understands that, you know, from day one, I've done the best I can for him. And I hope that, you know, someday he'll be he'll be proud of me, from what I've overcome, and, you know, tried to be the best person I could in his life.
Emily 30:38 How have things been since your transplant? How long has it been now?
30:43 It's been two years and seven months now. I definitely feel like that recovery window is, you know, getting smaller, I feel like, finally, this is my life. And it's a strange, strange feeling to all of a sudden be on this other side thinking, Okay, I don't have to worry so much about all the surprises anymore, because that's pretty much been taken care of, and the PSC, although it could possibly come back, I, it's not going to be on my radar, it's gonna be moving forward. From this time on, I've been through all of that I've had the transplant, I have survived all those things. And now I can take a step back and realize, I can do whatever I want, we can do whatever we want. And so I find myself with him, like pushing to go do stuff, like, let's go do this, let's go do that. And he's the one that's saying, No, I just want to stay home or no, I don't feel like doing that. And I find that finally, I'm the one that wants to branch out and have a new experience and have a new adventure, because I guess I, you know, I'm the first to remind him, there's a time where you might not be able to have that adventure, or you might not have that experience again. So I don't know if it's this new zest for life, or this new ability to kind of just walk away from the dark clouds of the PSC, and also colitis, but be able to finally move on and live a life that is, you know, positive and helpful and good and, you know, beneficial and fun. I just, we know, we just want to have fun now. And I and I'm pushing him to do that.
PSC Mami- Monika 32:19 And how does he react to you, when you're kind of really bringing this new zest?
Emily 32:26 I think he thinks I'm ridiculous. I think he honestly thinks that I'm crazy. But I'm trying to just, you know, remind him that there's so much joy in this world. And there's so many fun opportunities that can be had. And we just got to let loose and, you know, don't sweat the small stuff and be grateful for the big thing to be grateful for those small things. Because, you know, you hate to say it can always be worse, but I guess you know, I'm living breathing proof that it can be worse. And let's focus on those good times and the opportunities that lie ahead, you know, find joy and gratitude. And each and every day and as an 11-year-old boy, it's hard to come by sometimes. But you know, I'm still trying.
PSC Mami- Monika 33:06 And what do you say to, I'm sure you've met other women with PSC. Given your experience, what do you share with them? What do you tell them?
PSC Mami- Monika 33:17 I tell them basically, do whatever makes you happy. You know, I guess it's true for everybody. But we don't know what, what day each day brings for all of us. But especially having PSC, you have to be able to go with the flow. And so just pick those times those opportunities, find the joy that you can find your path and make the best of it. And there's going to be days where you know, you obviously want to stay at home in your pajamas and watch movies all day. And that's fine, because that's helpful for your sanity. And then there's going to be days where, you know, you're going to be grateful that the sun is shining, and you feel pretty good and you've got enough sleep and you're not itching and you don't have a fever. So, you know, I try to explain to them, don't let it stop you, live your life the best that you can. The life might not be the life you thought it was gonna be. But it can still be great.
PSC Mami- Monika 34:12 And looking back to your 19-year-old self who had to really readjust her vision of her life, what would you say to yourself now?
Emily 34:23 I guess I would say you know, just be confident in yourself, you know, you're, you're a survivor, you're a fighter, you're going to be in survival mode for a while, there's going to be times where you definitely want to give in and just say forget it. I don't want to do this. And there's going to be times where you're going to have to just push through and push through some difficult days and difficult decisions. But at the end of it, you know, there's the promise of pure, positive joy and have a life that is worthwhile and beneficial and you're going to be such a stronger person at the end of this. And you know, you're going to appreciate life so much more and appreciate your family. So much more because they walked the walk with you, and they held your hand through it all, you know, with friends and family, you know, having a good support system is is truly a big blessing. And just realize, you know, you're gonna make it through, definitely gonna make it through.
PSC Mami- Monika 35:16 And now you've gone through this second reimagining of your life. What does that look like for you now?
Emily 35:24 We're still in the questioning, (chuckle) questioning stage, I guess for me now is just do the things as a mom that I couldn't do, you know, be able to volunteer in his classroom, be the driver on the field trips, take him to anything, you know, sports practice that he decides to do get involved in, you know, his Cub Scout group a little bit more branch out, not just for him, but for me to, you know, just enjoy those things that I guess I took for granted before. And for me personally, I'm still trying to decide what that means for me. But I guess in this part of my journey, and the time that we are in, I just want to be a good mom. And I want to be a helpful mom to him. And I want to be a supportive mom to him. And I feel like I certainly owe that to him, having you know, been basically, you know, obviously he was raised while I was sick the whole time. So make up for the loss times make up for the times that we couldn't do something because I was sick. And you know, to take one day at a time and just try to instill that. That positive outlook on life, I guess and what I decided to do personally, I guess we'll just kind of come into place, then I think I'll find my way somehow. But for now, I just want to be a healthy person, a healthy wife, the healthy mom and just enjoy life, the best I can.
PSC Mami- Monika 36:49 Thank you, Emily, so much for sharing your story. You have definitely been through a lot of ups and downs. And it's just really great to hear where you're at now and all the possibilities that you have.
Emily 37:00 Thank you. It was pleasure, Monika.
PSC Mami- Monika 37:05 Gracias Mamis for listening. I'm so sorry you're here, but I'm glad you found us. I've really been admiring these moms who have young children and how they've included and talk to them about the process. I did see this week, as I was waiting with my son in a doctor's office, an episode of Doc McStuffins where they talk about stuffing donation and I it was meant to be about blood donation, but I definitely related to it and my experiences with organ transplant and thought it might be an interesting way to talk about it with my son. So if you want to look it up and I'll put a link to it on our Facebook and Twitter pages, but the episode is called Selfless Snowman.
PSC Mami- Monika 37:51 Have you connected to one of our stories, but still have a different experience or a different experience entirely. We would love to hear from you and would love to share your story on the podcast please go to our website pscmami.com and there is a link there to contact us and to share your story. We'd love to hear from you.
