Aviva describes herself as one of the “lucky” people walking around with two rare autoimmune diseases that not only make her pregnancy high-risk, but which could have taken her life before she would have ever met her kids or even got married. The miracles and extraordinary medical professionals that brought Aviva to becoming pregnant allowed her to witness something she hardly allowed herself to hope about: becoming pregnant with their first child. Aviva shares the importance of waiting for that second opinion that gives you hope rather than to worry.
“Aviva’s Story, Part One: The Drive to Have Children”
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Dr. Fox: Welcome to the “Healthful Woman” podcast, the fastest growing podcast in women’s health. Today’s Monday, June 13th, 2022. My guest today and next week is Aviva who is going to tell her birth story and it’s a great one. Today, Aviva is going to talk about the drive to have children. You’re gonna hear about Aviva’s complicated medical history, and how despite these challenges, she ultimately decided to go ahead and get pregnant. It is a really inspirational story and you’re gonna love it.
Next week, we will hear about her actual pregnancy and delivery, which is also quite uplifting. As a reminder, if you would like to share your birth story in this podcast, you can reach out to me through the website, or email me at email@example.com. All right, enjoy today’s podcast. Thanks for listening. See you next week.
Welcome to today’s episode of “Healthful Woman,” a podcast designed to explore topics in women’s health at all stages of life. I’m your host, Dr. Nathan Fox, an OBGYN and maternal fetal medicine specialist practicing in New York City. At “Healthful Woman” I speak with leaders in the field to help you learn more about women’s health, pregnancy, and wellness.
Aviva, welcome to the podcast. Thanks for…I would say volunteering to tell your story. But I did…how do we say request you come and tell your story. So thanks for saying yes.
Aviva: Oh, thank you so much for inviting me to share my story. I have a lot of gratitude to you and others to give me a wonderful story with a happy ending to tell.
Dr. Fox: Yeah, you know, a lot of people when they listen to this podcast, or they’re thinking about listening to this podcast, I guess because we call it High-Risk Birth Stories people think they’re all gonna be disasters. You know, and it’s like, “Oh, my God, so why would I want to listen to a train wreck? You know, that sounds horrible.” But it’s not a lot of it…well, most of them are really happy, uplifting, good stories, maybe amongst people who had a difficult time getting pregnant or had concerns going into pregnancy.
And I would say there’s a lot of very uplifting and happy stories that are still high risk, so to speak, yours is one of them. I’m really happy for you to tell your story because it’s just…obviously I was a part of it. But it’s just a really cool story, for lack of a better term.
Aviva: Thank you.
Dr. Fox: Give us a little bit of an introduction to who you are. And maybe coming into your first pregnancy, you know, what’s going on in your life? Where are you? What’s your family situation? What’s your health situation? Just so everyone can get a sense of what the concerns may have been.
Aviva: I am one of the, I will use “lucky” members of society who walk around with chronic autoimmune issues. And those can vary in levels of severity. And for me, I juggle a couple of pretty significant and challenging autoimmune conditions. I’m lucky in that they’re now very controlled, and I’m stable, but leading up to getting married and choosing to try to have or starting a conversation on having children, I was really concerned that the autoimmune conditions would impact my ability to have kids. There were really two areas of concern.
One was medication that I had to be on, and whether or not that would impact the health of a potential fetus and viability of the pregnancy. And then the other was whether or not I was strong enough and stable enough to have a child because of the concerns around my particular medical circumstances.
Dr. Fox: When were you first diagnosed with them? And then after that, when did you start thinking about pregnancy?
Aviva: So the first autoimmune issue I was diagnosed with about six years before getting married, and that one was actually in some ways, the scarier of the two, but it was one that I was more familiar with before getting married. And it was something that I was able to talk to my husband about, we spoke with specialists and they were pretty sure that I would be okay and that the baby would definitely be okay.
The autoimmune issue isn’t something that crosses the placenta so it wouldn’t put the baby at risk, and like most autoimmune, there’s an interesting kind of probability of thirds. So a third of patients do the same, a third do better, and the third do worse. But with a two thirds probability of staying stable or potentially even doing better being pregnant, that one my husband and I realized like getting married and having a kid would not be the reason that we wouldn’t try to have a child.
Dr. Fox: Which condition are you talking about, the first one?
Aviva: It’s called the primary sclerosing cholangitis. It’s a very rare condition in which the body attacks the bile ducts, and it can create complications…all sorts of complications. For a lot of people it results in total sclerosing or scarring of the liver and liver failure. For people who are very fortunate they either the disease doesn’t really progress very aggressively, and they get to live out their years feeling relatively healthy. And for a lot of others, that’s not what they experience.
I’m someone who’s very lucky, who was a part of the study at Stanford University, their medical system, where they were looking at using oral vancomycin to control the progression of the disease, and I was lucky to respond really well to that treatment. So that’s something that’s enabled me to live my life as normally as possible, just being very married to a pretty rigorous dose of oral vanco to stay healthy.
Dr. Fox: So you were diagnosed with that well before you got married. When you initially got that diagnosis, obviously, it’s very shocking, because at the time before, then you’re basically young and healthy. And now you’re being told you have this potentially, really severe liver condition, and you may need a transplant. I mean, you’re like, “Whoa,” and that’s sort of I mean, obviously, that’s gonna like having an anvil dropped on your head.
I’m just curious, when you got that diagnosis. And you know, you your family are thinking about it, obviously, the first thing that’s going through your mind is your own health. At what point from that diagnosis do you actually start thinking about, “Wait a second, is this gonna affect my ability to have kids?” Because you know, you’re not even married at that point you’re not thinking about it. So did it come up even before you started to sort of, you know, date or think about getting married?
Aviva: Yeah, I mean, I guess this is a conversation about high-risk issues. And I’m sure some of your listeners will relate, the first thing that I thought of was, I’m going to die before I have the opportunity to meet my future husband, or have my children. You know, there are lots of different ways that people process or manage their fears and anxieties, especially when it ties to medical issues. And for me, I journaled a lot. And there was one journal entry I wrote, and I’ve read it, and I cry every time I read it, where it was a letter to my unborn children, I was convinced that I was not going to live five years past date of diagnosis. And advice I got from the hepatologist I was seeing was, “We can’t promise you that you will be okay. We can’t promise you that you’ll have, you know, 5 to 10 years or longer. But I can tell you that you don’t want the diagnosis to stop you from living your life.”
And it was a mantra that I tried to just really internalize. I had better days and worse days, there were definitely days where I went to very dark places. But it did give me the courage to fight for answers and for hope. And I think that that enabled me to get access to the trial at Stanford. And again, I was just lucky, really, in terms of place in time to find that protocol and for it to be effective.
Dr. Fox: How old were you at the time?
Dr. Fox: So you’re 28 and you’re not from California, correct?
Aviva: I actually am. I was in California, really by luck. I was transferred to California for work. I wasn’t living there prior to 28. I was living abroad, actually, for several years. And the company I was working with was opening operations in the Bay Area. And so I was moved out to the Bay Area for work. And that just happened to put me in a place that wound up saving my life. And it was before I was symptomatic, it was before there was a diagnosis. You know, as soon as I started experiencing some of the symptoms of PSC, I contacted my primary physician, and she did a workup and my liver panels were just a mess.
And so she immediately submitted them to a couple of health systems to see if I could get admitted to their liver centers. And Stanford immediately gave me a call. I went in, had a biopsy and MRI, and then the call that you don’t want is for the head of the department to give you a call and say, “Can you come in tomorrow?” and you know that they don’t work on that day. And it was like, “Well, do I need to come in tomorrow? How scared should I be?” And the response was, “We need to have a serious conversation, you may wanna bring someone.”
So that’s definitely not the news that I was anticipating and just the stomach sinking feeling that, you know, I don’t know I’ve seen portrayed in books and movies. Just it’s true when you hear something like that it really knocks the wind out of you.
Dr. Fox: So obviously, you went into Stanford and they gave you the experimental treatment of the study treatment, which has been going very well. When did the next set of diagnoses hit you?
Aviva: This one is a story for the ages. And at some point maybe I’ll be brave enough to actually write about it. It was six days after I got married. So I walked down the aisle as healthy as I’d been in, you know, post-diagnosis, really stable feeling…and at the time when he was my fiancee, we actually spoke with Stanford to talk about being on oral vancomycin and trying to have children, and having PSC and trying to have children. And they said it would not be an issue, they really were very confident that I’d be fine.
So I went into my marriage thinking, “Great, I found a man I’m supposed to…I’m excited to spend the rest of my life with and we get to have this really wonderful journey together. And we’ll get to live out our years in bliss and have a beautiful family.” And six days after I got married, I wound up in the hospital, unable to breathe, too weak to walk from my house to a car waiting outside the door. And with some physical impairments, as well. My eye was very droopy, and I was very just…I felt like my body needed to be rebooted. And it took about a week or so to get a diagnosis.
And I’m lucky that it only took a week because I’ve since learned that for others, it can take longer because the symptoms can mirror the symptoms of a variety of different ailments. But I was diagnosed with something called myasthenia gravis, which is a neurological issue in which muscles fatigue. So the receptors that are supposed to help smooth muscle just function normally, they start to wear down or fatigue and they don’t respond the way they should.
So things that you do all the time and that one takes for granted, like swallowing, breathing, blinking, it becomes challenging for your body to do. And that one is, I mean, I was not in the headspace to be punched in the gut, so to speak, I was supposed to be celebrating my union with my husband. And instead I was just a wreck and in and out of the hospital and trying to figure out whether or not I was going to be able to walk normally again or look somewhat normal again.
My initial thought wasn’t children, it was just, “Will I survive? Am I dying? And how will I be okay?” And the more interesting complication for me was I knew how to be a warrior, a medical warrior as a single person, where you’re only responsible for your own survival. I didn’t know how to be a newlywed, let alone to be a newlywed figuring out how to survive another medical diagnosis. That definitely tested my marriage very quickly. And in some ways, my husband and I joked that we’ve been married, you know, the 25 years even though we’ve only been married a handful at this point, not even. But we’ve been through some things that people don’t usually experience until later in their marriage.
Dr. Fox: How did he respond to this?
Aviva: He’s really stoic, and really pragmatic. And as long as there is a plan, and there’s something for him to focus on and a problem that can be solved, then he’s fine. And sometimes it’s actually a point of contention where I’m like, “No, I just wanna vent and I wanna be emotional,” and he just wants to figure out a path forward. And that balance of things actually worked out well, because then I had the space to be emotional. And I also had a partner to strategize on what were the steps we needed to take for me to be okay, and for us to be okay.
And initially, that was really just me being functional, like baseline, not thinking about children yet. But as soon as I was okay enough to start thinking about what was next beyond breathing normally, and walking down the street normally, the first thing I thought of was, “Gosh, am I gonna be able to have children? Or did I just lose the ability to do that?” And that started a whole other saga for us.
Dr. Fox: Yeah, I mean, I guess it’s possible that you got diagnosed sort of quicker, like you said, than many people, unfortunately, get, A, because you got so sick so fast that you didn’t have like mild symptoms, you had really severe symptoms very quickly. And so I guess, you know, that’s one reason but also, you know, because you have this unusual, or rare autoimmune disorder that you’re walking in with, and this is another one. And so they’re sort of thinking, you know, your setup for an autoimmune disorder, in that sense.
And so, you know, it may be higher up on the list than something else, potentially. And I guess it’s good that you guys, you know, you have a different approach. You know, since your hand you know, you’re sort of addressing this, you know, the health concerns are on you, but you’re a unit and you’re addressing this together.
It’s good for like one person at least to be a planner. You know, if both people are just planning, then there’s probably too much, you know, bottled up emotion. And if both people are just, you know, throwing emotion all over the place, you may not have an appointment next week. And so it’s probably good to have that balance of personality between you two, and maybe it’s why you guys are, you know, you’re a good match for each other.
Aviva: Yeah, I definitely feel fortunate. And he’s not in the medical field, but he really enjoys reading medical literature. And I’m someone who, one of my ways of processing a diagnosis and kind of managing my care is to learn as much as I can about the condition and about treatments and probabilities of different outcomes. I find data empowering. And so that was something that we were able to do together is just do a lot of research to better understand what I was facing and what that meant for me.
Dr. Fox: And so from that point, you know, you’re admitted to the hospital a few days after your wedding. How long did it take for you to get, let’s say, functional, that you can, you know, go home and walk and sort of go about your daily business? And then from that point, how soon did you start thinking about upcoming pregnancies?
Aviva: So I was back at work, I think, three weeks later, on very high doses of steroids to just kind of quiet down my immune system and just allow me to be better able to respond to other treatments, so they didn’t have to worry about like this continued flare. I’m lucky that I faired okay on high doses of steroids. Steroids are both a blessing and an enemy. To those who’ve had to be on steroids for long courses, I can relate. It does all sorts of things. You know, I suddenly became a lot more conscious, I was a relatively healthy person going into this well, at least I had healthy habits. I don’t know if I could say that I was actually healthy with all of my autoimmune issues. But I became even more focused on or attentive to my diet and my exercise regimen. Even though exercising was difficult when you can’t breathe and your muscles fatigue, you kind of have to be patient with yourself.
But knowing that steroids has all kinds of side effects, I tried to really be cognizant of healthy habits and set a bunch of rules for myself about what was okay and what wasn’t okay. And that seemed to work. So, three weeks in, I was back to work. It was probably another three months before I was able to kind of take my first deep breath and say, “I’m going to be okay, I don’t know what okay, will look like, I don’t know that I will ever be able to, you know, run a 5 or 10k again, but I will survive. Like this will not be the thing that kills me. And if either of these autoimmune issues are going to kill me, it’s going to be PSC because something’s gonna happen with the vancomycin and, you know, I’ll wind up having a relapse, it won’t be the myasthenia.”
And that actually was an interesting and an important mental shift for me were the first physician and this actually speaks to finding the right doctor and how that’s so important in a medical journey. Where the first neurologist I saw at, you know, a wonderful institution here in New York, was really just negative. He wasn’t someone where I met him and I was like, “I’m going to be okay.” He just had a lot of like, “Well, these are the hardships you’re gonna face. And this is the standard protocol.”
And I didn’t feel better after seeing him, I didn’t feel like I was going to be okay, or that I could trust him to support me in finding a path to health. He could treat the symptoms but not make me truly better. And through a network of medical providers, of health providers, I was able to find my way to a neurologist at Mount Sinai who, the first time I met him, he’s like, “Okay, I’m so happy you’re here. Because I see a lot of really sick people, as one does as a neurologist. Myasthenia is my favorite neurological issue because it’s something I can treat.”
That to me just allowed me to feel like it was going to be okay, I didn’t know what okay was gonna look like and I was accepting of that, not happy with it, but accepting of it. But I did appreciate the fact that to him, myasthenia is not…and I know that there are probably listeners who have these conditions. So I apologize if this kind of lands the wrong way but for me it was helpful to hear that this wasn’t ALS, or Parkinson’s, or MS. You know, some of those also you can…through just experience in life I have friends who have…are young, vibrant, specifically women with MS diagnoses who are having kids.
So there is paths to happiness and a full life and dreams fulfilled even with other conditions but for him myasthenia is even “better” autoimmune to have in that you really can for a lot of people with myasthenia you can control your symptoms and lead a very robust life.
Dr. Fox: I wanna go into that a little bit more what you were describing sort of the day difference between the first doctor you saw and the second. And I’m curious, is it your impression that they had a different prognosis for you? Like, do you think that the first one actually thought you were gonna do worse or have more difficulties in life or difficulty treating than the second? Or do you think they sort of both thought about the condition and your prognosis the same way, but the first one focused on the negatives, and the second one, focused on the positives?
Aviva: I never really considered it. But I think it’s a little bit of both. I think, the second doctor really listened to me and understood me as a patient and saw that I was someone who would really adhere to a protocol, you tell me to take a pill at 3 p.m., I will take it at 3 p.m. I will not play, I will not mess around. I will be meticulous in my adherence to the protocol. I’m also someone who will fight for health. So if there’s something that is within reach, but it’s just outside of my current abilities based on medical limitations, I will work my way up to being able to tackle that.
And I think he understood that. So for me, there were certain things that he saw as being feasible that the other clinician didn’t even consider, because he just saw me as another myasthenia patient. And I think the way that a patient manages their own care outside of the doctor’s office is really important. And that has been in a number of circumstances in my life, the reason that I was okay versus not, okay, it’s because of the ownership I took over my own medical state. But I think the other piece of it, it’s not that I think the first doctor is a bad doctor, I’m sure he’s a phenomenal physician. But the way that he coaches or engages with his patients, at least-based on the experience of me as a single individual, is that it wasn’t meant to empower is almost to like, temper expectations. And maybe that’s important. And maybe for certain patients, that’s actually the right message, like, “I don’t wanna get your hopes up. I don’t even want you to be cautiously optimistic, let’s just get from point A to point B and not think beyond that. ”
But for me, and what motivates me and what makes me feel like I have a good partner in the management of my care is someone who can think optimistically and help me plan for a future state where I continue to improve. And that’s what I found in the second physician.
Dr. Fox: Yeah, and I think that’s a really important point, because, you know, one of the themes that comes up on our podcast is this idea sort of what makes a good doctor? And, you know, it’s not necessarily something objective, I mean, yes, there is, you want someone who has, you know, knowledge, and sort of wisdom, and insight…
Aviva: I hope so. Yeah.
Dr. Fox: Yeah, that is obviously important. And I would imagine that there’s clearly people who know more about one thing, than someone else would, or if it’s a specific procedure you need to have done or an operation, that someone has more technical skills than the other. So that does exist, there certainly is a hierarchy of skill and competency. But many times, it’s not that, right? The difference between who you’re gonna wanna see and who you’re not gonna wanna see. And it’s more than just, in my opinion, the idea of like bedside manner, and you know, sort of your relationship and how you know, whether they’re nice, and whether they’re kind, which is all very important, but it’s sort of finding that match what you’re talking about, like any other relationship.
You know, you’re gonna connect to somebody on a deeper level, just based on so many subtle things that are hard to maybe tease out. Like, why was it that that second doctor really was the right person for you? Like you said, they have the same, you know, shared vision about what you’re looking for, they got you, they sort of understood you, they listened to you. These are sort of very abstract concepts, in a sense. And for somebody else, they may not have clicked with that doctor, and they may have clicked with the first doctor because they’re a different person. And that’s why, you know, there are some things where you can recommend to others, “All right, this person’s great, they’re really smart, like this, they’re really kind, their office runs well.”
And those are all true, but it doesn’t necessarily mean that that person is gonna click. And you have to just sort of go for yourself and figure it out. And if you don’t click with that person, it is good to see somebody else because you may click with that person. It’s like dating, right? When you meet someone they can be…
Aviva: It very much is.
Dr. Fox: …they can be smart, and wise and kind and funny, and all good looking, and all these things, but this is not the person I want to be with for whatever reason, and it’s it’s not so different with doctors, especially if it’s gonna be a longer term relationship. If it’s a one time thing, “Who’s taking out my appendix?” it may not matter, right? Yeah, “Someone’s good. I’ll get out of here. I’ll be okay. I’ll never see them again.” But this is gonna be your neurologist for the next you know, 80 years right? This is like an important person in your life. And so it is important to have that connection and that sort of deeper level, that’s hard. It’s hard to put your finger on it even.
Aviva: Yeah, it’s something that I’ve advised friends and family about where it’s okay to get a second opinion. And sometimes the second opinion isn’t because you think you’re gonna get a different first medical perspective, or a different diagnosis, but you may just have a different personality delivering that message that makes the next step feel better. And that helps you make better decisions as the patient. And so it really is just like dating, like, you have to find the right provider to partner with you because it is a partnership. You can only do so much without their guidance. And they obviously don’t have anyone to consult and to help heal if you don’t show up. So it’s really about making sure both people are speaking the same language and speaking in a way that helps create good outcomes.
Dr. Fox: So you have your neurologist, you found your guy, everything’s, you know, looking up. When did you start your journey into getting pregnant?
Aviva: So I waited about another, say, three months or so before meeting with the first…and this is another example of getting a second opinion, the first MFM that I sat down with. So I waited until my neurologist said, “I think by three to six months out from here, you may be stable enough for you to try to have a child. So a part of it was just how stable, you know, my condition was. Part of it was my steroids dosing and trying to get everything to this, you know, perfect place for me to at least explore.
So I wanted to have a preliminary meeting with an MFM to just see what the complications were that they first saw, and then how to prepare so that way in three to six months’ time, my husband and I would be ready to say, “Are we ready to take that leap of faith? Is this something that we want to test? Do we think that we’re emotionally ready, that I’m physically ready?” but it would be our decision, we would have all the data leading up to it?
Dr. Fox: How did that first meeting go?
Aviva: The doctor was less…so PSC, you know that one is a rare one. There are about, I think, 30,000 PSC patients in the United States. So I wasn’t so surprised that he didn’t have much context there. Myasthenia also not a very common disorder. But I was hoping that based on what my neurologist was saying that he would be a lot more optimistic. He pretty much shot down the idea of us trying to have children the old fashioned way, right out of the gate between just my history of autoimmune issues, and I guess how severe they are and the way that they had flared in the past, he was very concerned that just even trying to have children would put me at risk.
And you know, the health and viability of a pregnancy was kind of an afterthought. So the biggest concern was, “Would it be endangering my life?” And he said, “Yes, if you were my child, I would advise you to go the surrogacy route, I don’t even know that it’s worth the conversation.” So to be in your first year of marriage, and to have gone into your marriage, getting the green, you know, assuming that you’re gonna have kids the way that, you know, people assume they’re gonna have children, only to be told after months of persevering that surrogacy is the way to go, that was devastating. I was not expecting that.
And to me, that was just in some ways another diagnosis, there’s like, you know, the diagnosis with a medical condition and a diagnosis with a medical limitation. And I didn’t really know how to tell my husband, and I didn’t know that he wasn’t there at the appointment with me. And I didn’t really know what to do next. I didn’t know if that meant that we had to think about saving up for this massive expense. I didn’t know how that, you know, in terms of the family that we envisioned, what that would mean in terms of number of kids that we could have, because you’re talking about it’s an exorbitant amount of money for every child.
And it also would change…it would be yet another way that our relationship with each other would have to evolve from the way that we anticipated we would relate to each other. And that to me was also just like a terrifying thing to think about tackling. Like our marriage had already been through so much, how was I gonna put this wonderful man through yet another lost dream, another struggle and how was I gonna give up with another loss? You know, there’s loss of physical capabilities, there’s a loss of sense of self and then there’s a loss of being able to have one’s own child the natural way.
So that was a very emotional number of months actually, where I was just kind of grappling with it and started to actually investigate surrogacy and that was…gosh, that was really hard.
Dr. Fox: Who else did you bring into your circle? With I mean, these are really dark times, right?
Dr. Fox: So other than your husband, who else did you talk to about these things?
Aviva: My parents, I worry that I’ve like to shaved years off of their lives by having to do all this kind of unfortunate medical trauma, but they are just an incredible support system. And, you know, my mom will listen to me then, you know, for all the hours of the day, and my dad, he is in the sciences. And so he really understands a lot of the underlying medical considerations.
And so he, in addition to just being a source of just stability and comfort, he’s also just someone to talk through what we’re reading and hearing rationally. And they’re just unbelievable. And lucky that I also have a pretty big family. And my siblings do their best to be there for me in all sorts of ways. That’s wonderful as well.
In terms of friends, I actually didn’t confide and haven’t confided in many, over the years, just because it’s something that always made me feel other and I hated feeling other. And you know, I got…this sounds…this is really morbid and a little bit gross, actually. But I remember with my PSC diagnosis, I almost wished it was cancer, because I’m like cancer, you wear outside all the time. And people know that you’re sick, and that you’re fighting for your life, but there all of these kinds of hidden diseases like PSC, where you’re really doing it in the privacy of your room, and no one realizes, you know, when you go to work every day, that there’s this thing that’s slowly, potentially killing you.
And so it just made me feel because I kind of had this private fight for health, I didn’t really want it to interfere with my friendships and to figure out how to navigate being my normal self, while dealing with this kind of invisible issue that they may or may not understand. So there are a couple of close friends that I kind of brought into the fold. But for the most part, I stayed pretty private about what we were dealing with.
Dr. Fox: What did your neurologist think, because he obviously felt you’d be okay to get pregnant? And then the MFM you met with felt you wouldn’t be okay to get pregnant? Did he just say, “Oh, like I defer to the MFM?” Or did he push back on that in any capacity?
Aviva: He encouraged me to get a second opinion. But I think the person who really championed getting a second opinion was my neuro-ophthalmologist, you know, just another specialists that when you have myasthenia, you should probably have [inaudible 00:32:48], she’s particularly fantastic for her patients where she thinks about you holistically, like, yes, she is an ophthalmologist or neuro. But I mean, she’ll spend, you know, 30 minutes, just going through my entire…all of my medical updates, and all of my well-being updates to have a composite view of me as a person, which helps her better manage my care and think about ways in which the workups that she does can help me to derive better outcomes.
And so in one of my follow-up visits with her, and we were just talking and I was kind of bemoaning to her just like my situation, and she was like, “I’m watching you get more…you’re stronger at every visit. And I’m looking at the levels of steroids you’re on and I see a lot of myasthenia patients, I think you should be able to have a child at least.” And so she really encouraged me to find a second opinion. And obviously not to only look for the opinion that would say, “Yes, try to have a kid,” but that it was worth it to try to find an MFM that may look at things differently.
Dr. Fox: And how did that second opinion go?
Aviva: I was shocked by just the difference. It was really a nice day, like meeting with you is like, well, you’re a very gregarious and optimistic person. And I thought that I was gonna take the smile right off your face after, you know, telling you my back story, you’re gonna say like, “Well, sorry, I can’t be optimistic for you.” But you weren’t, like we can work with this assuming that you’re stable and your medical team signs off on this. There’s no reason we can’t try.
Dr. Fox: Yeah, I was gonna pause for one second because I just wanna be clear to our listeners that I think that most MFMs who you would have seen, had you seen them, you know, initially, they would have told you what I said. And I think that you happen to see an outlier who was particularly pessimistic about your outcomes. Because again, I don’t know if outlier means 1%, 5%, 10%. But I think the majority would have been okay with it. And I think that’s what I told you that I said, “I don’t think we’re being too nuts here.” Like I don’t know, we’re not being cowboys. I just think that this has been done like people with myasthenia get pregnant it happens like we have literature on it. Like we see people with this, it’s not that uncommon, it’s uncommon, but it’s not like the most uncommon thing in the world, that’s for sure.
Aviva: Yeah, and I think, you know, kind of on the other side of it, I know that to be true, where, you know, there are support groups, for myasthenics and their support groups for expecting myasthenics. And there are a lot of very involved women who are all you know, myasthenia patients having kids, and maybe if their first, or second, or third, some of them, you know, their first pregnancies or pre-diagnosis. And then subsequent pregnancies, they had myasthenia, and all navigating different sorts of challenges and trying to answer different questions. But the thing that is uniform across all of the participants is that they are expecting.
So to your point, I think that the initial physician I saw was more conservative and pessimistic than the majority of MFMs out there.
Dr. Fox: You have your first opinion that says, “You can’t get pregnant, because essentially, you’re gonna die,” right? Or something close to it. And then, you know, several months later, and you’re getting some more optimism, and you have a second opinion, that says, “No, let’s do this, you can do it if everything is okay.” Did you have trouble processing that saying, like, “Wait, which one is right? Which one is wrong?” Or were you just like, “All right, I’m in, let’s do it?”
Aviva: For me, personally, I was like I’m in. Someone said, “It’s okay, I’m going, I’m running.” My husband, on the other hand, was a lot more cautious. I think, in some ways, it’s easier to be the patient than it is to be the person close to the patient. Because you wanna take care of the person, and you only have very limited control. And so he wanted to be protective of me and was worried about what trying to have a child could potentially do to me. So I was ready and he needed some coaxing.
Dr. Fox: How much coaxing? What did you have to do?
Aviva: I’m really lucky, you know, we have great communication. And maybe that’s a muscle that we developed because of the challenges of our, you know, first week of marriage, we just had to really talk it through and talk about the pros and cons of trying, and what we were willing to try, and what risks we were willing to take on. And when we would back off, if we saw, you know, certain red flags, like what that would mean for us. And as soon as we aligned on those things, then he was comfortable with us trying.
And he wanted to be on, you know, the phone calls and in the office rooms, or, you know, in the offices with the doctors as they all gave their blessing. So you know, on the phone with Stanford, we actually spoke with someone at the Mayo Clinic who was doing vanco research. As far as we know, I’m the only PSC and myasthenia mom on the planet. And so I did give away I guess, I happy ending there. I’m also, I believe, one of the first PSC patients on oral vancomycin to try to have a baby. And there was a lot of unknown. And it’s a weird thing when you’re talking to, you know, these really renowned GI hepatologists and researchers in their field and they’re like, “Actually, if you could track your liver panel, and if you could track, you know, certain other tests and potentially share them with us as data because we assume we know the answer. But we don’t know empirically how this will play out. So if you could share the data with us, it’ll help us counsel future PSC patients on oral vancomycin.” That’s both a blessed place to be where, great, I could help people, but also a little bit terrifying and unnerving because there isn’t any data.
Dr. Fox: First what?
Aviva: So my data is the data, which is just a fascinating place to be.
Dr. Fox: How long did it take you to get pregnant once you decided to start trying?
Aviva: This is where you know, I’ve got to laugh. We got pregnant right away.
Dr. Fox: There you go. Well, I guess, finally.
Aviva: Yeah. Right. And that just I think is, you know, the irony of all ironies, I’ve got this, like, very battered medical history where, you know, I assumed that like, every card is, you know, stacked against me, and somehow getting pregnant was not difficult.
Dr. Fox: We’re gonna have you come back to talk about your actual first pregnancy and then another spoiler alert, second pregnancy to tell that story. But just in terms of wrapping up this story, your journey to get pregnant. I mean, it’s so crazy, right? I mean, for this to happen just so out of nowhere, you know, looking back on what it took for you to have I guess the courage, and also the…I don’t know, motivation to get pregnant. What was it that was driving you? Was it more just, you know, “I don’t want this to stop me or was it, you know, I really wanna be a mom and sort of do it the natural way,” so to speak. I’m just…because it was so much right? So many people would have just not tried. And I’m curious what it was that drove you?
Aviva: So a piece of it is my parents used to tell me that I was very stubborn as a kid. And that was always a negative thing. Like they weren’t saying that as a compliment. But I think that with most traits, there’s the positive and negative side to it. And so the downside is that means that I was probably a difficult teenager and very opinionated. The positive side is that I’m very stubborn and if I want something and I want an outcome, I’m willing to roll up my sleeves and put in the effort to get there.
I have learned that whatever…I’m only in control of so much, right? I hope this isn’t the case. But I could easily wind up with another terrible diagnosis tomorrow. And I’m not in control of my future and of future outcomes. But I can fight for the outcome that I want. And that was really what I think enables me to be okay, or as okay, as I’ve been. It’s just this kind of the stubbornness, where I do not want the data, or the diagnosis, to have the final…to be the determinant. I want to have a say in how my life plays out.
And I think being a patient, especially when you have some really unfavorable diagnoses and conditions to manage, it makes it really hard to feel like you have any control or any say in what your future looks like, because it’s hard. Being sick every day is really hard and having to deal with medical issues that, I mean, people write books about and their movies about because they are hard and they don’t use up. And a good day is a day where you don’t need to complain about it. But it doesn’t mean that that issue isn’t still nagging you in the background. It is hard and it is unyielding, but I think the thing that is helpful, at least for me, is knowing that I can try to make, you know, the ending that I want for myself. And even if I only get, you know, 15%, 20% of the way there, that’s better than had I not tried at all.
Dr. Fox: No, it’s amazing. And I think that, you know, that drive is so impressive. And also just one of the really, you know, practical lessons that I take away because it happened a few times to you is find the right doctors, find the team that works for you. Because it totally changed your outlook, it changed, you know, your management, it changed everything for you. Just from, you know, finding the right person, or people
Aviva: I probably should have led with that because I think you put it perfectly is it is also a joint effort, right? I would be literally nowhere. I would be probably, you know, not around if it wasn’t for the work that, you know, Stanford and Mayo are doing right now. And for the doctors being willing to work with me on figuring out how to manage my care and to try to make me be okay, and to deal with the myriad of insurance issues and all of the complications that come up with dealing with these issues. So it takes a village and I think it’s about finding the right village.
Dr. Fox: Wow. Well, this podcast is one that ends happy because it’s ending with you pregnant. And then when we bring you back next week, it’s also gonna end happy because you have babies.
Dr. Fox: So again, we wanna set up this is all gonna end well. So we’re gonna have another happy podcast next week with Aviva. Thank you so much for coming on. We’ll have you back next week so we can hear the rest of your story.
Aviva: Thank you so much for having me.
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