Serbrina and her marriage survive and thrive post-transplant without children
Serbrina and her husband survived a 10-year waitlist for her life saving transplant made necessary by the progression of Primary Sclerosing Cholangitis. While her feelings about motherhood at this stage in her life are complex, she holds possibility for that and all areas of her life. She discusses the shifting considerations, emotions, and frames of mind that PSC brought to her lived experience and how a successful transplant has transformed how she approaches time and living life.
Transcript
Serbrina 00:00 I feel like when you're literally facing death with somebody. It's something that we faced it together and we got through it together. And now I feel like we can get through anything.
PSC Mami- Monika 00:22 Welcome to PSC Mami, where we share stories at the intersection of PSC and parenthood. PSC or primary sclerosing cholangitis is an autoimmune disease, and it affects the bile ducts and in turn can affect your liver. All stories and information shared on PSC Mami, are personal experiences and opinions and should not be used as the basis to treat yourself or others, please make sure to check with your medical team.
PSC Mami- Monika 00:49 I am very excited about the interview you'll hear today with Sabrina. I've had the pleasure to connect with her online and to witness some of her journey. And I was very excited at one point last year when I saw that her and her husband Aaron were traveling near to where I lived, we were able to meet up and I cannot say enough about how generous they were with their story. I had been a recent transplant just four months out and Serbrina just shared so much wisdom and really shared her experience so openly. That was such a comfort to know both the challenges and the wonderful hopeful things that were to come. As you listen, keep in mind that in the United States, the organ allocation is done by region. So in different regions, people will have different experiences as far as at what point in their illness they can receive a transplant. So in some regions, they might be transplanting at a meld of 20 while in others it is much higher. MELDs range from six to 40. And in California where Serbrina was transplanted often you are not even considered close to the top of the list until you're over 35 and usually closer to 40. So something to keep in mind as you listen to her story and how it affected her and her relationships. So I hope you enjoy her story as much as I have.
PSC Mami- Monika 02:16 Tell me a little bit about your PSC journey.
Serbrina 02:20 I was diagnosed with what they thought was ulcerative colitis first, so sometime around 2002. I had had no symptoms at all. I one day had gone to get coffee before school, my stomach was hurting a little bit. And then when I got to school, I literally spent my entire class in the bathroom. And I thought this is not right. And so I after, like the next day or the next few days, I called to make an appointment to see like my primary care doctor, he referred me to a GI specialist and I made an appointment to see him. So after tons of testing, I was diagnosed with UC, unfortunately, the only medication available at the time did not agree with me.
Serbrina 03:18 So, I would see him on a regular basis. We noticed that my liver enzymes had been elevated, but I was also anorexic bulimic. And so the thought was that because I was throwing up on a regular basis that was causing my liver enzymes to be elevated. The hope was that I would not continue to be in my eating disorder, and then the liver enzymes would go back to normal. And then we could just deal with my UC. Unfortunately, when I stopped throwing up on a regular basis, my liver enzymes did not go down. And so it was sometime in late 2004 maybe, I think it was like right after Aaron and I had gotten married. I had had a liver biopsy because they were just not going down. I mean, they weren't totally high like but they were high enough that there there was a concern. He suggested having a liver biopsy. So I went ahead and had the liver biopsy and he came I had an appointment after work one day and this is horrible. Like, I went to the doctor's office. I was sitting in the room all by myself, and he comes in and I knew I was gonna have the results from my liver biopsy but I you know, like I didn't think anything of it. I thought oh, he's just gonna tell me that everything like there's no damage from the years of being bulimic and you know, now I needed to really focus on being healthy. He walks into office and he says to me, you have cirrhosis on your liver. And I was like, oh, what's cirrhosis. You know, I was like, in my mid, early to mid 20s. And I had no idea what that was I, I didn't drink on a regular basis, I was a social drinker. And I was not very social at that time. So, I mean, you know, it was a very rare thing that I would drink. And so he said to me, I think you have something called primary sclerosing cholangitis. It typically affects men in their 40s. And you will need a liver transplant within 10 years.
Serbrina 05:40 I was like, Oh, my God, how are you telling me all of this, I'm sitting here by myself. This sounds like a death sentence. And I just started crying.
Serbrina 05:50 I had, you know, like, what do you suppose to do when somebody tells you that he just looked at me and had no response? It was terrible. And so that really began my PSC journey. It was not a fun thing, having to deal with especially just being married and having to go home and tell my husband that I would need a liver transplant. And not even really knowing what PSC was. You know, at the time, the literature was very limited. I mean, as it is now. But in the early 2000s, it was, there was a lot less information out there. And so I mean, for the first few months, I couldn't even pronounce it correctly. Like I would get it all jumbled. That's when people would say, oh, what's going on with you? And I called primary? colangitis, sclerosing? I don't know. Like, I would just get it mixed up. So it was shocking, and scary and frustrating, to say the least. Yeah.
PSC Mami- Monika 06:59 In those initial months, would you say that the diagnosis affected how you viewed your future? Or did that take time to sort of process it?
Serbrina 07:09 I think it sort of took a little bit of time, it was obviously shocking, especially since we had just gotten married. And you know, we were hoping to start a family. I mean, to be quite honest, I don't even really remember. Like, if we had talked about starting a family, or if we were going to wait. But I just kept thinking, Oh, my gosh, what do we do? Like? I mean, can we have a family? You know? Yeah, it was.
Serbrina 07:38 So I'm not sure that I really, like I think it took some time before I actually realized what was going on. And it wasn't even till years later, when we, I was diagnosed with portal hypertension and varices. And we were still sort of talking about maybe starting a family. And the doctor said, I don't think that's such a good idea that it kind of like hit me like, oh, my gosh, maybe I can't have children. Maybe this is it, this is it, you know, like it's just gonna be Aaron and I for the rest of our lives. So that was kind of shocking to hear that, like,
PSC Mami- Monika 08:13 How did you to process that?
Serbrina 08:16 You know, I'm not sure. I'm very, very fortunate. My husband is an amazing human being. He just had the attitude, like, if it's just us, then it's just us, you know, and I've always been the one that's like, well, maybe we should have a child. And then they go back and forth. Maybe we shouldn't, you know. But during that time, I think like the focus was on me just being healthy. And getting me through till I needed the transplant. Because initially, when I was diagnosed, my GI doctor sent me to the transplant center right away to transplant center right away shortly after diagnosis, I was listed for transplant, even though my meld was very low. At the time, they didn't know how quickly the disease was going to progress because I already had cirrhosis of the liver. So the thought was, well, she has cirrhosis. So, you know, it could be weeks that it gets worse. It can be months, it could be years. So I was put on the list. And so we were kind of in limbo for a very long time. Like, well, she's, you know, she may be getting the liver soon. She may not be we don't know. And we just kind of went with the flow with it. You know, like, every time I got sick, we were just okay. You know, like, what do we there's nothing that we can do about it. We just kind of go with it.
PSC Mami- Monika 09:48 And how long were you listed for?
Serbrina 09:51 I was officially listed for 10 years.
PSC Mami- Monika 09:53 Wow.
Serbrina 09:55 I was listed at USC in 2005. And I was there for three years and the hepatologist that I was seeing, he was moving to a hospital in Seattle. And in 2008, I was relisted at UCLA. And then in 2015, I was given the gift of life.
PSC Mami- Monika 10:19 While you were on the list, how did that affect how you thought about time your future? How did you plan during that time?
Serbrina 10:29 Well, for the first few years, I was pretty asymptomatic. I was just, we were living our life working, I was working. We were going on trips, just living our life. But that was always the black cloud over our head, we knew something was wrong. And I think that it prevented me from fully living my life, I think, always because I wasn't sure what was going to happen. I don't think I ever thought that I wasn't going to get a transplant. Like that never really crossed my mind. But it was just a question of when it was going to happen. And so it wasn't really until I'd say 2013 that I started getting very sick. And spending, I would have, I would end up in the hospital probably every other month. And being there for about a week with infections. It was mostly infections. Actually, it was awful. And after that, my health just slowly declined until the time of transplant.
PSC Mami- Monika 11:41 During that time, how did you look at your future? How did you look at things like family things like career? What was that thought process? Like? Was it there? Were you thinking about those things?
PSC Mami- Monika 11:54 I think that we were just living day to day, like trying to stay afloat, and get me to a healthier place. In 2013, my, the company I was working for, they eliminated the position that I was in. And about that same time as when I started getting sick. So it's kind of a blessing in disguise. Because I was able to stay home and take care of myself and go to doctor's appointments when I needed them, or had them and so not having to work was such a blessing because I was able to do that. And then as far as family, like that was the least of our, like, we were not even thinking about that at that time. We literally were just existing with each other and Aaron was taking care of me. I mean, it was it was really awful. And hard and stressful and scary. And I'm so grateful that we are not in that place anymore. Because it was just, it really was frightening. I mean, we were still doing things, going on trips to visit family or trying to go camping, but like it was not we were not living life. It was it was really just trying to make sure that I'm you know, getting through the day.
PSC Mami- Monika 13:22 How long did that last would you say?
Serbrina 13:24 For about two years, two years before my transplant. I mean, like pretty much all of the end of 2013 and then all of 2014 and most of 2015 that was our life. And it was scary. I mean, you know, spending more time in the hospital than your own home. It's, it sucks. Yeah, it's just it's very scary to think that. That at the time it was very scary to think that that's what my life had become. But like looking back now I see that it was just a coping mechanism. Like everything that we were doing was just a coping mechanism. You know, like, I don't really...
Serbrina 14:16 Oh, Monika I'm sorry...
Serbrina 14:27 It was just a really scary time.
PSC Mami- Monika 14:32 What do you think you were most scared of ?
Serbrina 14:39 Just the uncertainty. I think I was scared of dying... but... um...I tried really hard not to let that fear get into my head. Like I said before I, I really, the thought of not ever receiving a transplant, didn't know, it never crossed my mind. I think what scared me the most was when I did get it, if I would make it through the surgery. And just waiting, I knew I was getting worse and worse. And that was really hard. I mean, alright, you know, I physically felt awful every single day, I had to stop driving long distances. So I was just driving around my house, like going to the grocery store. But I would fall asleep once I'd get into the car. If we went somewhere far. So obviously, driving distance for me was impossible.
Serbrina 16:06 Yeah, that...um...sorry.
PSC Mami- Monika 16:15 No, don't be sorry. Again, this is the space. I am, I am relating to everything you're saying right now. So I get it. It's hard. It's hard to even think about those times.
Serbrina 16:35 I think...um...I think what the hardest thing was like, now looking back, seeing my marriage was crumbling while I was sick. But it was by no fault of our own. It was just the circumstances that we were in. And I feel like it was very difficult for us to even think about having a family or moving forward. Because I had been sick the entire time we've been married.
PSC Mami- Monika 17:07 Yeah.
Serbrina 17:11 And so now that I'm healthy, think we really don't take any day for granted. The things that used to bother us. It's, it doesn't even matter. And was that shift?
PSC Mami- Monika 17:32 Did that come quickly? Or easily? or How did you get to that place?
Serbrina 17:38 It was very difficult. I remember laying in the ICU, talking to my mom and telling her I'm not sure if Aaron and I are going to make it through this, even after my surgery. And not because we didn't love each other. But mostly because I was a different person. Like I felt that immediate shift in myself, like now, I knew that I would be able to do things that I hadn't been able to do before. And I wouldn't need him in the same way that I needed him when I was sick. And so that was a very scary thought to think that I wasn't going to need this person who's been sticking by me, literally through thick and thin. And it was an awful feeling. But I know not everybody is for therapy. But we thought it was necessary to help our marriage. And it did. It literally saved us.
PSC Mami- Monika 18:49 I think that's a huge shift. Especially when your entire length of married life had this, as you call it cloud or shadow.
Serbrina 18:57 Yeah. It's awful to think that, like looking back, that that's how it was.
PSC Mami- Monika 19:06 Through the process of recovery and going through therapy together and recovering in that sense. How did your perspective shift?
Serbrina 19:15 I think now I'm more excited for what the future holds. I I feel like we do have a future. I'm excited to grow old with him. And like the bond that we have now is undescribable. I mean people that have never experienced this, I don't think that they could ever truly understand. I mean, everyone goes through their own things. I don't want to minimize anybody's problems. But I feel like when you're literally facing death with somebody, it's something that you just we faced it together and we got through it together. And now I feel like We can get through anything. There's nothing that can stop us. And it's so funny because I think it was the day after I woke up from a surgery. My mom, who was also taking care of me at the time, she was living with us a few weeks before my surgery, and then she stayed with us about a month after my surgery to help. And so her and Aaron went to like the post transplant family meeting where they were going to find out like how they were supposed to take care of me and like what it could be, you know, those. I think every Transplant Center has one of those. And Aaron comes back into the, to the room. And he's like, your mom is just going crazy. And I was like, what's going on? My mom runs into the ICU room. And she's like, Oh, my gosh, you have to use protection from now on when you look at it, like, What are you talking about? Just like you can get pregnant now.
Serbrina 21:00 And I'm like, Are you serious? Oh my gosh, it was the weirdest thing to think about that. It was actually a possibility. Because before my surgery, like we hadn't really talked about it, because I had been so sick for so long. And so, you know, once we found that out it like, it became more of like, Oh my gosh, we can start a family if we really want to kind of thing. So since then, we have discussed it. And you know, there's been moments where we're like, maybe, you know, if we have a kid, that would be great. But if we don't, that's also great, because we have each other. And I think Aaron's have the mindset that he doesn't want anything to happen to me. And so if I'm putting my health at risk by having a child carry a child, it's not worth it. And I feel the same.
Serbrina 22:04 Yes, that is where we are with children. Since then, the transplant center told us to wait, that we had to wait at least two years before we could even start trying, which I think that's typical for all transplant centers. Once we hit the two years, we actually discussed it with the transplant team. My transplant team is wonderful. I love them. They I've been seeing the same hepatologist since 2008. So she's pretty much seen me through everything. But she wasn't. She wasn't as excited as I had hoped she would be when Aaron and I went in there and discussed pregnancy with her. She did want me to go see the high risk ob gyn, which I did. We also discussed fertility, so we had to make an appointment to see a fertility specialist, which we did. And so we went to the fertility specialist with the idea that we would have a surrogate because, you know, if we were gonna have a child, I did not want to put that strain on my body, it had already been through enough. And unfortunately, I don't have enough follicles, basically, that she said that I would need to have several rounds of IVF. And Aaron and I both agreed that it wasn't worth that to put my body through that because you don't know the effects of IVF. You don't know what's gonna happen. And again, it doesn't always work. And it's a lot of money. It's, you know, insurance, our insurance does not cover it. So that was something that we had to we had to decide whether or not we wanted to move forward with. And then we saw the high risk ob gyn and she said that I am healthy enough to carry if that's what we wanted. But the last trimester probably would not be that fun. And that she has had some patients who are post liver transplant that have had to spend the last trimester in bed. I mean, that doesn't sound that fun to me. So my options are pretty limited right now.
Serbrina 24:18 We have talked about adoption and fostering. But it's not. The reality is, whatever is going to happen is going to happen. We're not super careful. So if I do get pregnant naturally, then that's what's going to happen. And if I don't, then then I don't. And we're okay with that too. So I think we're we've accepted the fact that maybe we won't have children, but if we do that, we would be very, very happy with it.
PSC Mami- Monika 24:56 How have those conversations been for you emotionally? What does that felt like as you've gone through that process?
Serbrina 25:04 It's... I'm very indecisive. So one day I could want a child. And the next day, I could be like, Yeah, no, it's cool. I'm okay with my nieces and nephews. So for me, it's a little bit more emotional and irrational, I think, than with Aaron. He's like, seriously, just make up your mind, what do you want to do? I've had my moments where it's been very difficult. In the last few years, I've had a nephew, and my sister-in-law has had a child who I absolutely love more than anything. But it was very hard during her pregnancy. Because that's what I want. You know, like, it's so it's been emotionally difficult seeing other women, my age or younger, go on to have healthy pregnancies. Because I don't know if I ever could. And that's just the reality of it. It's, it sucks sometimes to think that, you know, my body doesn't, is preventing me from doing something else. I mean, it's already prevented me from living a healthy life for so long. And now, it may be preventing me from having a child, which is it? I don't I have a lot of guilt. I don't know. That's, that's all I can say is like, there's so I think it's more guilt that anything that I feel, if that even makes sense. But I think having PSC or having any chronic disease, you feel that way. You know, I mean, you feel guilty that this is your life, then you're sucking people around you into it. And and I think that's kind of how I feel, I felt guilty that I'm not able to give Aaron a child, because I'm pretty sure when we got married, he thought that we were going to have kids. And now this is what her life has turned out to be. Not that it's bad, but it's just not what we expected, or not what he expected. And I think that's hard. I mean, even as I'm talking about it, I'm getting teary eyed. And him and I have discussed this so many times. But it's just, you know, it's one of those things that I think it's just part of having a disease,
PSC Mami- Monika 27:29 Can you talk a little bit more about your own shift your perspective on possibility after your transplant?
Serbrina 27:36 My shift as to having a family?
PSC Mami- Monika 27:38 It can be a very much relate to this idea of facing mortality and how that impactful that can be. And I guess it just love to hear a little bit more about how that "opportunity" to do that
Serbrina 27:54 So when thinking about motherhood, post transplant, I think the fear of rPSC is very real. That is also something that scares me.
PSC Mami- Monika 28:08 And when you say rPSC being the recurrence of PSC?
Serbrina 28:13 Yes. Aaron has always said that my health is the most important thing. So initially, when we discussed having children post transplant, if it was going to be harmful to me, or put me at risk, we were not going to do it. Because as he says he does not want to raise a child by himself. That's not what he signed up for. And so that the thought crosses my mind, I, I can't imagine having gone through what I've gone through pre transplant, like the hospital stays all the time in bed, the appointments, any of that and having a child, it seems like such a difficult thing. It was a full-time job taking care of myself. And sometimes I couldn't even do it on my own. So the thought of raising a child pre transplant. Like in hindsight, I am very grateful that we did not have a child. It wouldn't have been fair to Aaron. And it definitely would not have been fair to my child. Post transplant. I it's the same thing. Like if rPSC happens. I know that Aaron and I can handle it together. But it's still would it be fair to Aaron to have to raise a child on his own if I did not survive. And I just mean, I try not to think about that too often because I'd rather live in the moment and And enjoy what we have now. But I think that's just the reality. I think when transplant is not a cure for your disease, the thought of having to go through all of that, again, is very frightening. And I don't I don't know that I, I don't know that I would want to expose another human being to all of that. I don't know. I mean, that's just me. I don't know. I don't think I have it in me to do that. Seems so selfish and wrong. And people that are listening to this are probably going to get so pissed off that I'm saying that I'm so sorry.
PSC Mami- Monika 30:57 It's okay, you are living your truth.
Serbrina 31:01 It just, you know, like, it seems so, so difficult to raise a child, and then to have to deal with a disease while raising a child. I mean, I know, I've seen women do it. And it's incredible. And I have so much respect for that. But in me, I don't know that I have it... ...and I'm scared that I mean, there's so many fears that go into the thought of having a child post transplant. I don't want anyone to think that I'm a horrible person for feeling the way I do about having kids like pre or post transplant. It's, it's a huge decision that we have to really think about. I mean, I, you know, I wish that we could have had children before I got really sick, I really, really do think that it's Erin would make such a great father. But that just wasn't in our cards.
Serbrina 32:23 And so I think that that has sort of skewed the way I look at things now, post transplant. And I'm not very young anymore. I mean, I'm almost 40 So being a 40 year old first time mother, I think that would be very, very difficult.
PSC Mami- Monika 32:42 That damn biological clock
Serbrina 32:43 I know that it's truly, truly sucks. I always I joke. It's really, the thing that is funny is that my donor was a 30-year-old woman. So I save that I have liver of a 30-year-old woman, why can't the rest of my body still be 30? I mean, like, you know, it's you feel so different after surgery, you feel so healthy, and so young and vibrant, like, in a way that you haven't in so long, or ever. And, and so you feel like, like, honestly, I don't feel like I'm whatever 40 is supposed to be like, I feel like we can still go out and try and have kids for another five years, which is not possible. But still. Like that's just how I I think about it. Yes, Mother Nature is telling you that I'm getting very old. So
PSC Mami- Monika 33:41 What are the things that you are excited about now that you've kind of gotten the second or another? Who knows how many chances we've gotten? Right? Right? You're in a different space health wise?
Serbrina 33:56 What am I most excited about? Oh my gosh, everything. It's like the first probably year after my transplant. It was like everything was new to me. Going on a walk was the most amazing thing ever. Singing at the top of my lungs in the car, by myself was so incredibly awesome and freeing. Like when my husband and I would go hiking. That was amazing. Riding my bike. I mean doing all the things that him and I had wanted to do for so long but couldn't because I'd been so sick. Those were like the most amazing things ever. And now it's like the list just keeps on building like 2018 I keep saying this is the year that I travel and I want to go everywhere. I think a lot of times I let having IBD Crohn's stop me from doing things because I feel like like I need to be near a bathroom all the time, which I'm sure a lot of people who have Crohn's/Colitis feel like. But I this year, that's all I want to do. I want to go places and see things that I've never been, I want to do things that I've never done, I want to hike Half Dome in Yosemite, I want to go to Hawaii and run around on the beach in a bikini and show off my scar. Like, it's so ridiculous. Like, I want to do everything in anything. But that's the wonderful thing about being post transplant is that now I have time to do all of those things. I mean, at first after surgery, I constantly wanted to be doing, I would have this list of things that Aaron and I had to do. And I remember him saying you have time to do everything. You don't have to do it all at once. And I was like no, I have to. But I realized that I have time now. And nothing has to be done in a certain amount of time. Like I don't have to get it all done at once. I can just take my time and enjoy everything. And it's a great feeling. It's something so amazing. To be given a gift. Yeah, it's great. I I look forward to what the new year brings.
PSC Mami- Monika 36:26 What's the advice you give people when you meet? Those who've just been diagnosed with PSC
Serbrina 36:33 Stay off the internet. Just kidding. It's very, I mean, it's very scary what the information that is out there. And if you don't know somebody who has it, who can really explain to you what life is like, then you can feel like you are all alone and that it's a death sentence. But truly, I don't think it is. I think you can live your life, a very healthy life for a very long time. I wish that I would have been more present before transplant. I wish that I wouldn't have worried so much about the what ifs. I wish I wouldn't have allowed myself to be in limbo. So those are all things that I would hope that somebody new to PSC would learn from just live your life. It's going to be okay. It really is.
PSC Mami- Monika 37:37 Gracias mamis for listening. I'm sorry you're here, but I'm so glad you found us. Visit our podcast website at pscmami.com for resources, a link to share your story. We'd love to hear from you. And also links to subscribe and all your favorite podcast platforms. If you have a moment. Please also rate and review us as that helps other folks find us as well.
