Amanda is expecting her first baby post diagnosis and transplant
Amanda was diagnosed with Primary Sclerosing Cholangitis at 23 and one-year into her marriage. A little over a year later, she received a living donor transplant. She shares how her diagnosis and transplant forced her to rethink what her expectations were as she has forged a new life path with flexibility, grief, gratitude, community, redemption and even a little anger. She shares what it’s like to be expecting her first child any day.
Amanda mentions the Transplant Pregnancy Registry
Transcript
Amanda 00:05 We went from, you know, not knowing if I was going to survive the next year to bringing a new life into the world. It's just, it blows my mind when I think about it.
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, inflammation leaves them scarred and blocked, which eventually shuts down the liver. And surprise, the liver is in charge of over 300 functions in the human body. To be diagnosed with this rare, unpredictable and incurable disease can rewrite anyone's life journey, including their vision and experience of parenthood. A reminder that all stories and information shared our personal experiences and opinions and should not be used as the basis to treat yourself or others.
PSC Mami- Monika 01:10 I usually do my pitch for stories at the end of an episode, but I want to share with you that even though I have not posted an interview in over a year, I still get emails from women who are deeply impacted by the stories that have been shared here on the PSC, Mami Podcast. I have heard from families and friends about their deeper understanding of the experience of their PSC peers, because of the stories that have been shared, even if it's not their loved one talking. These are not my stories. These are the stories of PSC peers, like maybe you and each story is unique and has the ability to impact someone else who might be feeling alone or defeated or wondering if anyone else has lived an experience with PSC that they have. You have lived that story, and I welcome you to share it. I'm also expanding the scope of the podcast if you are a father who has PSC if you're the spouse of a PSC or if you are a parent of a PSCer, or I'd love to hear from you. Of course, women who have lived the PSC and parenthood journey including surrogacy adoption, fostering fertility treatments, all the journeys. I truly believe someone will benefit from hearing your story, contact me at pscmami.com/stories, or send me an email at PSCmami@gmail.com. Now let's get to today's interview.
PSC Mami- Monika 02:46 Today we are talking to Amanda, and I am super excited. I have been following her on Facebook and some of her journey, and I was just so happy to see her happy and she'll talk about why in just a minute. She lives in Pittsburgh with her husband. Hello, Amanda. Thank you for joining me, tell us a little bit about your PSC journey.
Amanda 03:13 Thanks for having me. I was diagnosed with PSC in May of 2014. At the time, I'd been married less than a year. So it was a major shift in our lives and what we thought our lives were going to be like, so a very scary time for us. But I had been really tired for a while. Just very like fatigue, no matter how much I slept, really weak. One day, I woke up and I was just really fluish feeling, but my husband kind of thought it was more than that just based on how I had been feeling. So we went to the ER and that just led to my diagnosis. It took a couple weeks though, because PSC is so you know, rare and not widely known about. I was initially told I would need a transplant and maybe 10 years, which rapidly changed to being listed for transplant in September of that year.
PSC Mami- Monika 04:16 Wow.
Amanda 04:18 Yeah, so it was a really big change in our lives. I didn't really have time to think about it. Like I was just kind of in survival mode at that point. And I kept getting sicker and sicker that year, and I still wasn't really moving up the list at the rate that I wanted to or my doctor was hoping for. So they encouraged me to look into living donation. And I was very against that at the beginning. But then a couple of months later, I said let's revisit that. Because I realized that I wasn't getting the call and I was getting sicker and I just didn't know how much longer I'd be able to go on that way. So we started that process. And fortunately, I know this isn't the case for a lot of people, but the first person that came forward was a match for me. So I had my transplant in August of 2015.
PSC Mami- Monika 05:14 That is a very short version of clearly a very intense story. Can you talk a little bit about...in this case, it was fast. What did when you say I was getting sicker, you know, everyone's PSC story is very different, what did that mean for you?
Amanda 05:29 I was just getting more and more tired, I started getting very itchy all the time. So I wasn't sleeping either. And with liver disease, a lot of people don't realize it messes with your internal body clock. So I would be up all hours in the night and then sleep until like one or two in the afternoon the next day. So I had to stop working. Because I just couldn't keep up with it. I was also working with kids. So you know, that's very high energy. So I started staying home. And I just didn't have energy to do you know, the things that most 23, 24 year olds are doing. I got, looking at pictures now it's hard to believe how like, sickly and skinny and everything I was getting, but I was just getting very fragile. I was hospitalized once with what they think was the start of an infection. I started having a lot of pain, like upper right quadrant pain. So that's what led me to go to the hospital that time. And after that is when I had to resign from my job because it was just too much to keep up with.
PSC Mami- Monika 06:44 What did what was that like? How did you feel about that turn?
Amanda 06:47 I remember being really kind of embarrassed about it, which looking back. I don't know why, it wasn't my fault. But I just was kind of ashamed that I had went to school for human services, which is like social work. So I was really looking forward to going into my field. And, you know, using my degree. And so the fact that I could it was just really upsetting to me. And I kind of want to just power through it. But there comes a point when you're sick that you can't do that. So I was just very, you know, kind of ashamed of it and angry that I couldn't, you know, do what I wanted to do.
PSC Mami- Monika 07:27 I think anger is one of those feelings that comes a lot of a lot in PSC that is not a talked about as much as some of the others. But there are definitely those moments.
Amanda 07:36 Yes.
PSC Mami- Monika 07:37 And can you talk a little bit about the living donor process? He said you were initially against it, for you what what was that like?
Amanda 07:45 I was against it, because I just didn't want someone to go through something so major for me. At that time, I didn't really grasp how long the list was waiting for the deceased donor. And so it was just kind of seemed unnecessary at first. But then once I realized it was necessary, it was just this sense of not wanting to put someone else through that. And it's just so much to ask of someone. When we decided to go that way. I really didn't talk about it that much either. It was mostly my family and friends who shared about it a lot, which I'm so thankful for. Because my mom talking about it at work is what led to my friend from high school who worked with her, she reached out to me. So if my mom hadn't been talking about it, she might have never even known because I was really quiet about the whole thing.
PSC Mami- Monika 08:40 And what was the process for you? Getting to transplant and especially being so fast? What are some of the things that came up for you?
Amanda 08:51 Well, it's definitely a shift in focus in mine in my husband's life. At the time, he was in the Marine Corps, so we were in North Carolina, stationed down there. So you know, we were far from family. And all of a sudden, I was really sick. We, I had always thought that we would start a family like pretty early into our marriage. And so that was definitely put on the back burner. I never really like remember having the thought that I wouldn't be a mom. I guess I just didn't let myself go there. But it was just definitely a shift from, Oh, this is our future to like just surviving the day to day. So my life just became a lot of doctor's appointments. Fortunately, the Marine Corps was really understanding when my husband needed to be with me, so I was thankful for that. But it was still just a lot on our marriage to you know, go from being newlyweds to basically he was my caretaker whenever he was able to be. Our families being so worried about us and not being able to be there all the time. So it was definitely a scary time, but um, I don't really want to look back. I don't really know how we did it. But I guess you just kind of survived what you have to survive
PSC Mami- Monika 10:07 And post transplant, can you talk a little bit about your healing journey? Having been through it? I know, it's not just a physical healing of what was that time for you?
Amanda 10:21 Well, I had my transplant in Philadelphia, which was kind of odd, because I lived in North Carolina at the time, but they had a very good living donor program. So that's where my hepatologist referred me to go. And I really trusted him. So that's what we did. So we were in Philadelphia, my husband was there for I think, three weeks with us afterward. And then he had to go back to work. So my mom was able to stay with me for the remaining time. They had a transplant house that was like two blocks from the hospital, so I stayed there for, I think, two and a half months. Because they have to, you know, keep a close eye on your labs, and make sure that you're doing okay, before they'll send you home, especially if you live that far from the hospital. So I was there with my mom and my donor and her mom. And then I think she went home after about a month. And I was there for about two and a half. And it's honestly, looking back, we have so much fun because we were in Philadelphia, and it was a new city. And we did a lot of exploring, like as we could, as our bodies would allow us to, physically everything went pretty well. You know how they want it to go. The only thing is, I would like push myself too hard sometimes. So then you'd have to rest for like two or three days to recoup. Once I got home, it kind of shifted from like a focus on my physical recovery to more the emotional recovery. So it took me a while. But eventually I started going to therapy, which really helped because I was able to talk it out with someone who wasn't involved. There's kind of like a sense of, I don't know if I should call it guilt, but sort of guilt where you're sick of everyone focusing on you and your problems. So it was kind of nice to have an outside person to talk to about it. But it's definitely been an ongoing healing as far as the emotional and mental side of things.
PSC Mami- Monika 12:32 Can you say where you're at right now in your journey? And then we'll talk about a little bit how you got there.
Amanda 12:37 Sure. So I was four years post transplant in August. And at about three and a half years post transplant, we discovered I was pregnant. Right now I am almost 30 weeks pregnant, which is just been the most humbling and amazing experience because after going through so much being so sick, my body's failing me the way that it did, the fact that it's able to do this has just been amazing. And everything has gone fairly well. They consider me high risk because of my transplant and being on the immunosuppression. So you know, there's extra monitoring, they do non-stress tests bi weekly, just to keep an eye on everything. But it's been going really well my liver has been happy. So yeah, it's kind of just like this balancing act. They have to do labs every other week now, which I was going every three months before pregnancy. So it's definitely more frequent, more monitoring, but worth it, you know, for the end result
PSC Mami- Monika 13:45 And you've spoken a little bit, you know, mostly I know you online to the the healing part of where you are now to where you've been, can you talk a little bit about that, like what for you is the connection?
Amanda 13:58 I have been able to accept the negative emotions that have come from all of this more so than I did at first. I tend to be like a very optimistic person, which helped me as I went through everything. Then on the other side, I feel like I didn't let myself experience the negative emotions or what we consider negative emotions, like anger and guilt and sadness over what I went through. But I have been able to kind of reach a better place with that, being able to grieve that even though things are okay now as people like to find, okay, I can still grieve what I lost. You know who I used to be. I was just a different person than I was before diagnosis. And so, I've definitely been working on accepting that and seeing it as you know, something, I don't always have to be thankful or happy about that still, you know, learning from the experience, if that makes sense.
PSC Mami- Monika 15:08 Yeah,
Amanda 15:08 It's hard to describe.
PSC Mami- Monika 15:09 Absolutely makes sense. Preparing for a baby as an intense time for anyone, what has it been like for you? Can you describe a little bit about what it's about, like, and what are the things that you've processed in this time?
Amanda 15:24 Well, it's been stressful, like the best kind of stress, we also moved recently. So I've been trying to get the house ready at the same time, and I've been trying to take the time to make sure you know, I'm taking care of myself physically, as well, with, you know, being immunosuppressed, you have to really be conscious of that, more than a lot of people do. So that's kind of my focus. And then I've also had a lot of thoughts about all these medical appointments and the feelings that that can drum up. And even though it's a, it's a good reason to be going to the doctor, and, you know, having all these checkups, and it brings up a lot of emotions. And so, you know, just working on processing through that. And then thinking about being possible eyes after labor and delivery and everything, it's been something I've had to really spend time, you know, thinking about and preparing for mentally, because I don't want, you know, my PSC, and transplant journey to take away from the joy of this time. So it's kind of like a separation that has to occur, in my mind that, you know, this is a good reason to be at the hospital and be seeing doctor than everything.
PSC Mami- Monika 16:44 What are some of the other things that have come up for you?
Amanda 16:47 Just the adjustment to being so highly monitored again. So I've had to, you know, I have the more labs, so every other week instead of every three months. So at first, I was just very resistant to that. But now I see the value in it, because you know, they have to adjust your medications and stuff as you go in pregnancy. So it's just been a lot more time spent on, you know, the health aspect of life again. And so that kind of brings mixed emotions. The fact that, you know, it's for the baby helps, it's not just a focus on me. So I guess that's been helpful for me emotionally, that it's not like, we're monitoring me getting sicker, and trying to manage it. We're just monitoring my health to keep it where it is, and keep the baby healthy, too.
PSC Mami- Monika 17:44 Have you had any opportunity to speak with or connect to anyone else who's been pregnant post transplant?
Amanda 17:51 Yes, I'm so grateful for social media for this reason. Even after being diagnosed with PSC, I found the PSC Partners group. And that was like, amazingly helpful. And then I found a Pregnancy After Transplant group on Facebook, too. And so there's women in there who have had all sorts of different transplants. And they're either trying to conceive, or they've had babies. And so it's been very helpful to talk to them. And there's also the Pregnancy Transplant Registry. And so I registered with them. And they're able to send you research articles and things about like what medications have been found to be safer or not as safe for pregnancy. And then also with breastfeeding after the pregnancy. So it's definitely helped to connect with them. And you know, realize I'm not alone in this balancing act. And this sense of like wanting to, you know, keep your transplanted organ healthy, but also be a mom. And so it was definitely helpful before I got pregnant to see that it was possible. And now like as I'm going through the journey, I just love seeing the posts from them to, you know, just have the sense of community. Because it's hard to find, you know, people around you who have been through what you've been through.
PSC Mami- Monika 19:14 So what are you excited about, like what's been bringing you joy in this time that I think with PSC so much is mixed emotions? What are the things that have made you really excited.
Amanda 19:27 I'm just very excited for the fact that we went from, you know, not knowing if I was going to survive the next year to bringing a new life into the world is just, it blows my mind when I think about it. I love watching my husband and my family being so excited for you know, the baby coming, and I'm just really excited to watch the interactions between them and to be able to just have these happy times. Together, I think when you've been through something like that, it makes you appreciate these times a lot more, not that other people don't appreciate them. But it brings a different perspective. Is there such a contrast between what was and then what's going to be? So yeah, I'm just excited for like, daily life, I guess just watching the baby grow up and our family, grow and seeing the joy that all of it brings.
PSC Mami- Monika 20:28 I saw your maternity photos online. They were gorgeous.
Amanda 20:32 Thank you.
PSC Mami- Monika 20:33 Talk a little bit about that experience, you wrote a little bit. But I would love to hear what that was like for you.
Amanda 20:40 It was really fun because, well, I love photos. Like I don't get that weird about photo shoots for some reason, like, I'm not a super outgoing person, but I love just a time and life being captured like that. And it was one of my best friends who is able to do the photos. So that made it more special. But she wanted to do some, like with the baby bump, and being able to see my transplant scar. And so that part made me a little more like, okay, but once I saw them, I was really glad that we did. Because I just think it's amazing to see you know what the human body can go through. So it was just really, the pictures are very redemptive to me, I think the post you're referring to was, I was talking about the color yellow in it. And the pictures were surrounded by a field of yellow flowers. And for me, yellow is like a very loaded color. Because it is, you know, the color of being jaundice when you're sick. And I was so self conscious of that when I was sick, like I never wanted to go anywhere, because I felt like people were always staring at me. And it kind of made you realize like how much stock you put in your physical appearance, when all of a sudden you don't look like yourself anymore. So the color yellow just kind of puts me off a little bit. But as soon as we got there and I saw the yellow flowers, it like kind of redefined that color for me. So I love that the pictures have those in the background now. So it was just a very redemptive, photoshoot. She has a ton more that she's still working on. So I'm excited to see them and just be able to display them in our house and be able to, you know, tell my little boy or girl one day about it, that just really painful to have those.
PSC Mami- Monika 22:34 Are there any other images from your journey that are significant to that journey?
Amanda 22:40 Yes, my, one of my friends came to the pre op room, and she took some pictures, which I'm really thankful for, because it's not something I would have thought I wanted, or that I even asked her to do. But now I'm very thankful I have them, she has a picture of my husband, I hug him before I went back, she has a picture of me being wheeled back into the operating room. And at that point, they'd given me something for anxieties. I look like I'm very happy about going back in the operating room, which is just kind of funny to look at now. I'm thankful she took those because it's not a moment that you're like, oh, let's take a picture or a selfie or whatever. So it's really cool to see, you know, the evolution of the images. And then we have a few like from after transplant and just watching the transformation is pretty amazing.
PSC Mami- Monika 23:37 Are there any other supports or things that have really been helpful to you in your journey? Diagnosis to now, people don't always think about pictures in those moments, are there other things that have really reached out to you?
Amanda 23:53 Yeah, I would say just trying to find a community of people. Whether that's, you know, through social media or in person, when you're sick, you know, it's hard to have the energy to keep up your social life. I think it's really important to be part of something even if you're in a group text with like your friends and they check in with you or in our case, we had a really supportive church in North Carolina that really helped us through I just think it's really important not to totally close yourself off if you can help it. Just be able to let people help you, which can be really hard. I'm not someone who likes people helping me but it's something you kinda have to humble yourself in those situations and then helped helped me to know that one day if I got better, I would be able to give back and help other people. And I think sharing about my story is really brought me more community to because I've been asked to speak at a couple events. And it kind of helps give you a sense of purpose and what you went through. And to be able to, like show other people, you know, the importance of organ donation and making it more real to them. So that's been really big. I've been volunteering with an organization that focuses on raising awareness of organ donation. And so that's connecting me with others to who have either they've had a transplant, or they're part of the donor family. So being able to see that side of it has been really rewarding, too.
PSC Mami- Monika 25:37 And one of the things a lot of young women will ask about when I'm in conferences, or doing mentoring is about relationship. You were diagnosed very young, in your marriage, what has that journey been? Like, for the two of you? It's a big question.
Amanda 25:57 Yeah, it's, it's been different at different stages, for sure. Like I said, that first year, we were both just kind of in this disbelief, survival mode. And it was very humbling and strange to go from, you know, just a married couple to my husband became more of a caretaker for me. And there was a lot that I could still do, but it just wasn't at the level that I could be for. So it was definitely, you know, a hard shift. But what had to happen at the time, even now, I think that he probably worries about me more than the typical husband worries about their wife. Which, you know, it will always probably be there a little bit. Yeah, but um, we definitely had to, you know, intentionally have fun sometimes, because I feel like, it's made us more serious in our relationship in a lot of ways. But I'm thankful for him, because he has a really weird sense of humor. So I think that God knows what he's doing when he gives you your partner in life. So he's definitely helped to keep me more lighthearted when I don't want to be as light hearted. But I think just taking the time to still focus on your relationship, like not as it is related to being sick or your transplant, but just being like, able to be who you were before all of that. We started dating in high school. So you know, we knew each other for a while before all of this happened. So I think just drawing on that has helped us. But it's definitely strengthened our relationship. I feel like, if we made it through that, we can make it through anything. So it kind of puts things into perspective, like, yeah, we still have arguments and fights like normal couples do. But in the grand scheme of things I can usually see like if it's really a big deal or not, because you've been through something so big together.
PSC Mami- Monika 28:02 When we started, you talked a little bit about your leaving your job and how hard that was, what is your thinking about working or career or PSC transplant can really throw a wrench in all that, what what has been your approach to thinking about what that means for you?
Amanda 28:22 I think it's made me think differently about career and purpose to where before, I just saw a lot of purpose and you know, working full time and whatever field that you chose, now I kind of have a more flexible view of it, to where if I don't get back to doing that, eventually, I'm okay with that. And then my focus has kind of shifted a little bit because with being a mom soon, I want to be able to be home as much as I can't, to raise them. So I've kind of accepted that I can still, you know, use my skills, my degree and you know, my passions in different ways. Like I love volunteering with that organization. And eventually, maybe I'll work like part time and social worker or something, but I feel like I'm able to use those skills even like when I do the speaking events, or just talking to other people about their experiences. It's kind of like just made it more of a flexible thing for me, and less rigid. Like, I have to do what I wanted to do originally, because it kind of just has evolved since then.
PSC Mami- Monika 29:39 A lot of our audience is young women who have been diagnosed Is there anything you would want to share with someone who was recently diagnosed with PSC?
Amanda 29:51 A lot. But, um, I would say that it helped me to just take it day by day. If I ever started looking too far into the future, that's when I really started to panic and feel really defeated. And it's not really something you can do anyway, because this disease is so you know, variable for everyone. Like, while my experience was very sudden, and then transplant was pretty rapid. That's not the case for a lot of people. So I think just realizing that it's a day by day sort of journey. And hopefully stories like mine can, you know, bring hope because they can feel like your life is over when they give you that diagnosis. And I definitely had days where I felt very defeated. But focusing on the better days is probably what got us through being able to focus on what I could still do. And the possibilities that were ahead of me, was helpful. And then like I said, before, finding a sort of community that you can connect with just, if anything, just to know that you're not the only one that feels the way that you feel. I know when I was diagnosed, they told me it was typically a middle aged man disease. So that kind of made me feel really alone. Like well then why is it happening to me? But I soon discovered that that wasn't always the case. Which it really helps more than you know, more than you realize to feel like other people your age, other women your age are going through something similar.
PSC Mami- Monika 31:42 Thank you so much, Amanda. I know this is an incredibly busy time for you. And we wish you the best and can't wait to see the little one.
Amanda 31:51 Thank you so much.
PSC Mami- Monika 31:53 Gracias for joining me and honoring Amanda's story. If you are inspired to share your story about your intersection of PSC and Parenthood, please contact me at PSCmami.com/stories. At the redesigned website. You will also find more stories and resources. You can also follow us on Facebook, Twitter and Instagram @PSCmami
