Meredith Prescott

I mean, there was a thought it likely would rise. So anything that would happen would likely be very short term. So that always made me feel at ease.

Narrator

Welcome to the PDSA podcast, Bruised but Not Broken: Living with ITP. The diagnosis of a bleeding disorder like immune thrombocytopenia may leave you wondering, how can I really live my life with ITP? PDSA's podcast, Bruised but Not Broken: Living with ITP, brings empowering stories, the latest research and treatment updates, lifestyle tips, and answers to the real life questions the ITP community is asking. Here’s your host for this episode, Barbara Pruitt.

Barbara Pruitt

My guest today was diagnosed with ITP when she was a senior in college. She had no idea what platelets were or ITP. But let me let her tell you a bit about that. So let me introduce Meredith. Thank you for being with us today.

Meredith

Thank you so much for having me.

Barbara

Great. Tell us a little bit about yourself. What was it like when you were diagnosed and where has your life led you since that diagnosis?

Meredith

It was extremely hard. I was a senior in college. It was fall semester. I was like super excited to be, you know, a senior enjoying the last bit of college, having fun with friends, and all of that. And I noticed some bruising. It was right around Thanksgiving, so I went home to, when I was going home anyway, I ended up going to the primary care doctor and they did like a lab test. And I thought, oh, it was probably just iron or something, something like, fixable and easy. And then they called me when I got back to school already to tell me that my platelets were really low and that I needed to do something immediately about it and to see a hematologist. And I had no idea, like, what platelets were. I didn't really understand kind of, why this was happening. And then from there, I did, I found a hematologist and did more of a workup where they were able to diagnose me with ITP. So that's sort of how the story came about, you know, just all, my only symptom at the time was bruising. I didn't necessarily think it was anything serious.

Barbara

Right. Well, a bruise here or there doesn't seem to be serious. But when you get the blood work done and they're calling you and saying, this is really important, then that changes your whole attitude towards it. So, were you able to finish college then or?

Meredith

I was, I actually, it's something, sometimes things happen in mysterious ways. And I've gotten a lot more spiritual in my journey, you know, since I've been diagnosed now. But, I only had 13 credits after that semester to finish in order to graduate. And I think the max amount was 15 that you could do remote work. So I was just under that. So I finished out the semester and I had one more semester left, just the winter semester to get through. And the Dean that I had asked, you know, hey, look, I'm doing this new treatment, you know, I wasn't sure I was going to be back and forth between New Jersey and New York and Maryland, because I went to University of Maryland for undergrad. And, Dean had said to me, you know, my sibling has ITP, you know, no problem. Do what you need to do at home. You know, go to your doctors, go to your appointments. You can finish out the semester.

Barbara

Wow. That's really fortunate that he actually knew what it was.

Meredith

Yeah. So, I was really lucky in that regard. And then, you know, of course, after I graduated, she actually retired the year later. So it was like crazy timing that this person was in my life. So I was able to graduate on time and finish out the semester, even though it was obviously very different for me than you know my friends or peers who are not navigating ITP during their senior year.

Barbara

Right. Right. And did you go on to study anything else after that or what happened in your life?

Meredith

Yeah. So ironically, I was trying to, you know, as all seniors, are you're trying to figure out like, what you want to do out of your life, you know, do you want to go to grad school? What kind of job do you want? And so, I didn't really have as much time to think about what I wanted to do initially because I was so, kind of burdened with the ITP diagnosis and the medical appointments. So a lot of my focus was, you know, navigating ITP as opposed to other seniors. But then I realized, you know, maybe this is my calling. Like maybe there's something I can do to give back or help other people that are dealing with health challenges or just in general other emotional challenges in their life. So, I applied to grad school, and I went to, so I ended up getting into Fordham Social Work School, and I wasn't sure exactly what I wanted to do at the time. I just knew I wanted to do something to help. So, the social work program is pretty, you know, there's a lot of options. It's pretty diverse. So I figured, you know what? This is a good degree to have. I can figure it out once I'm there. Let me just get in there. And so, I, the following fall, went to social work school at Fordham University in the city. And I moved to the city for two years. It was a two-year program. And I was able to study there. And the first year I worked with adults with special needs and I really, really liked that. And in the second year I asked for a placement in a hospital and I worked in the bone marrow transplant unit counseling cancer patients, like end of life at Cornell.

Barbara

Wow.

Meredith

And then from there, I was like, wait, maybe I do like this health stuff, you know, maybe I want to be in the health world. And given my understanding, I felt like my medical literacy, you know, improved greatly since being diagnosed and understanding the medical jargon and just what patients' lives were like that were, you know, diagnosed with challenging situations. So, I ended up taking a job after that for five years at the Mount Sinai Hospital in the city doing counseling for cancer patients.

Barbara

Wow, that's wonderful. It's interesting how people's journeys with ITP can lead them into other medical fields or, you know, their understanding of what they're going through, can really lead them in directions to help others, because I've seen that time and time again. I think that's why I went to nursing school, because as a child I was so familiar with all of the medical environment and jargon. So, it seemed very natural for me. And then you, I guess, got married and had a baby, right?

Meredith

Yeah. So then, yes. So, I met my husband actually right after I had graduated grad school. We were living in the city, and I was dating my husband throughout my career at Mount Sinai. And then I ended up, I got married in 2021, fall of 2021. And then I actually left the hospital right around the time, I think it was right after COVID actually, like, and I started up my own practice. So, because there's a lot of limitations of things I wanted to help clients with that I can't do in that type of setting. And I wanted to expand the people that I was helping. And I think as much as it's so great to help people, you know, end of life, it's super, super depressing. And there's only so much work that you can do. So I wanted some of that to be my focus, but I didn't want, like, I wanted to have other clients that were not necessarily navigating just that. So now I work with clients that are grieving or families that are grieving, but not limited to that. I'm working with couples. I'm working with, now I have my own practice. I work with, you know, all types of challenges, all health issues, not specific to cancer necessarily, a lot of autoimmune stuff, chronic pain, and some, a lot of conditions that are not medical.

Barbara

OK, well, that's great. It sounds like it's well-rounded.

Meredith

Yeah, and I think I needed that after, you know, working in the hospital and watching so many people die.

Barbara

Yeah, yeah, there's, there's other avenues for you to follow, which was great. So you have a little son from what I understand.

Meredith

Yes. So, my son, Oliver, he's amazing. So, he's 19 months now. It's crazy to believe that. So yeah, so I began that journey. Like shortly after we got married, we started trying. And I wasn't sure what it was going to be like, not only as a mom, but also as like an ITP patient and what the process would look like, you know, throughout pregnancy and postpartum. So it was a lot of changes, but it's been such an incredible journey, and I'm so blessed to have such an amazing son.

Barbara

And now you're pregnant with your second, correct?

Meredith

Yes.

Barbara

How far along are you?

Meredith

I'm actually due next month. I am like 33  weeks this week.

Barbara

Oh, wonderful, wonderful. Well, let me ask you, when you decided to start a family, did you meet with your hematologist or your obstetrician to talk about your journey with ITP or?

Meredith

Yeah, I did. I didn't have, like, an OB at the time that I was like seeing so regularly, but I was more in contact with the hemo because I had seen her every three months. I had a closer relationship with the hematologist. So prior to even, because I feel like I'm pretty proactive, even prior to like being ready to have a family, actually right before I got married, I had spoken to her about options, what medications were safe, what she thought, you know, what the likelihood is that your platelets drop, you know, in what, in what trimester I had asked like a bunch of these questions. I felt pretty prepared in terms of like what I knew, but I think the reality is, there's so much uncertainty with the platelets rising and declining that you don't really know until you're in it, until you're pregnant, right? You don't know, they can't tell you, oh, this week you're going to have to go get an infusion, or this week, you know, your platelets are going to be fine and you don't need anything. So, I mean, I had some answers which were helpful, but I think I knew a lot of it would just come down to like,

Barbara

Wait and see.

Meredith

Exactly.

Barbara

Yeah. Because everybody's journey is very different.

Meredith

Exactly. I think that's the hardest part. You don't really know. And even every pregnancy, I mean, I can speak how different this pregnancy is from the last pregnancy. So, I think even if you, I think, for people who are thinking about getting pregnant, even each pregnancy is different. So don't think just because it was really hard one time, the next time it will be equally as hard. It might be easier or it could be really easy the first time and more challenging the second. It's really not, it doesn't really make sense.

Barbara

Well, your conversations about the birth of your child, did they recommend that you see a pediatric hematologist or a neonatologist? Were they concerned about maybe the baby having ITP?

Meredith

No, they weren't. Actually, that was something I had asked, you know, my hematologist prior to getting pregnant, and you know, in my experience, it's not really genetic. I mean, a lot of people I know that have ITP in families don't have it. So I really wasn't so concerned. I did do genetic testing in general, and everything you know was okay, thankfully. But I wasn't so worried about the baby. I mean, there was a thought in my mind, like, oh, I hope that the baby doesn't have it temporarily. But they sort of explained to me there would be like a small chance that maybe if you had low platelets when you delivered, the baby may have low platelets for a period of time, but they likely would rise. So anything that would happen would likely be very short term. So that always made me feel at ease.

Barbara

Well, when I was pregnant, that's exactly what happened. And the way it was explained was that the antiplatelet antibodies cross the placenta and went into the baby. So, her platelet count was 16,000 when she was born, because that's what mine was. So, it took about five months before her platelet count was normal. She did not have ITP, but my antibodies lived, you know, for that long before she had a normal count. And I mean, and she's been normal ever since. There's never been a question.

Meredith

It was just probably really stressful for those five months.

Barbara

Right. Because, you know, a newborn baby, and you're worried you don't want to trip and fall when you're holding your child, you know, because with that low platelet count. But, you know, like your doctor said, if that happened, it would pass. And it did. And it did for me. Now, you said that every pregnancy is different. What's been different about your second pregnancy from your first?

Meredith

A lot so far. So, the first pregnancy for me was really grueling. I mean, again, I don't know how much of it was, I mean, yes, it was ITP related, but not fully. I think that's the hard part, right? How do you decipher what's ITP symptoms, which is what's just like aggravating pregnancy symptoms that would happen even if you didn't have ITP. Cause I think a lot of people find pregnancy to be pretty challenging. But for me, the last pregnancy in general was just much harder in terms of like my appetite, I mean, I feel like I was always hungry. I wasn't sleeping as well. I had actually a thyroid issue early on in the pregnancy that, you know, I don't know if my metabolism, it seems like my metabolism just wasn't the same. And so, I think that caused like more inflammation in my body, which I don't have that thyroid issue in this pregnancy. So I think in terms of appetite, my blood sugar is more balanced. But last time I got the flu at like, maybe I was 20 weeks pregnant. And so then my platelets dropped and I had to get an infusion. I had to get the IVIG. So I think from 20 weeks, which is like basically halfway, I would say the pregnancy was particularly hard. And then my platelets kind of never recovered. You know, let's say they were like 50,000, which I didn't need treatment for for the first 20 weeks, I would say from 20 weeks to 37. You know, they were below 30. So I was getting infusions every few weeks. So I think that was much more challenging. This time around, knock on wood, I'm 33 weeks, like I said before, and I had not had an infusion yet.

Barbara

Wonderful. I also didn't get sick. I didn't, you know, knock on wood, I haven't had the flu this time around yet.

Barbara

Yeah. Cause I know viruses, I mean, for most of us, they really knock your platelet count down and they'll rebound, but sometimes it takes a while. How often have you been told to get platelet counts during your pregnancies? Is it different from the first to the second or the same?

Meredith

So I think it's been helpful actually getting less platelet draws for me because I find it just really stressful and a lot of times it feels like it's like more anxiety than it is worth it. So last time, I actually switched doctors, not hemat- well, hematologist too, because she left the practice, but also gynecologist, and I'm having a better experience this time around, which I think is also helping with the pregnancy. But last time, I think I was getting platelet draws, I felt like almost every week after 20 weeks, and it was just too much. Like I feel like you identify too much as the sick role, and I felt like, you know, you're always on edge. Like, well, what's today going to bring? And do I have to cancel my work or my obligations or whatever I had knowing that I might have to get an infusion. So this time, and I didn't have so many symptoms. I think that's the difference. And I wonder, for other people, like for me, if I drop below 30, I really don't have symptoms. So for me, I'm like, well, why am I going to go sit for an infusion if I don't have symptoms and I'm not delivering a baby this week, like It just didn't make sense. I think that was challenging. So this time, I'm monitored a little bit less. That's every few weeks I'm getting. And I actually, this time around do it at the gynecology office because they draw labs. So instead of having to go twice, I feel like that has been really helpful for me.

Barbara

Well, that's great that you, you're able to join them together. And then I'm sure the lab results are sent to your hematologist so that they know what's going on. So did they consider you, I know nowadays they do this, but did they consider you a high-risk pregnancy because you've got ITP or did they not give you that?

Meredith

Yeah, they did. I do see a high-risk practice. Look, I'm sure that a non-high-risk doctor could manage it, but I do think there is a lot of alarm around ITP with low platelets. Like I think even physicians, when they see the number low, they're like, you know, they have their own emotional reaction to what's happening.

Barbara

Absolutely. And all of them have different reactions. It depends on their contact with other ITP patients and what those journeys had been like if they had had a patient with ITP that had a bad journey, then they're going to be more anxious about you as an individual as a person, right?

Meredith

Like when you pick up on the doctor's anxiety about it. I'm like, I walked in, I think it was like, was it two weeks ago, my counts were in the high 30s, which I was like, doc, this is great! Like I don't have to get an infusion because we agreed that if it was below 20, unless I was going into labor or like closer. And he was like, well, they're not good, Meredith. They're just, they're not as bad as they were. I'm like, no, this is good for me, right? So I feel like some of these doctors, like they even take for, I'm like, this is amazing! Like I'm not going to take any of these numbers for granted.

Barbara

I think as an ITP patient oftentimes once we are comfortable with the count that we have and the way that we are physically presenting ourselves. In other words, do we have a lot of symptoms? I think there's, very frequently, I've had to educate doctors about this is good for me. You know, I'm doing okay with this number. This number is okay. I don't, I don't need you to worry. And it's unwarranted, you know, for you to worry about this number. Okay. Yeah.

Meredith

Now sometimes we don't give our bodies credit. Like how long can you hang out a number before things become problematic? Right? Like is everything urgent? Again, if you have symptoms, you're bleeding out, totally different story. But if you have no symptoms, you have energy and you wouldn't know unless you had a blood test, that information isn't always helpful. Like I feel like that just causes more anxiety. And for me, it's been one of the most challenging parts about the pregnancy isn't actually even being pregnant. It's that getting these appointments for IVIG at the hematology office when I'm pregnant has been very hard. This time, it's a little easier. But you know if my platelets were to drop and I needed IVIG tomorrow, like there's not always a chair. So for me, I'm like, so why am I going to get stressed out about something if, like, you can't definitively help me at 9 a.m. tomorrow with this problem?

Barbara

Right. Right. I get that. I get that. Have you had any specific precautions? I know that sounds kind of broad, but during your pregnancy, have you been worried about anything that you normally wouldn't worry about in your normal day to day life? As you get larger and larger, your balance is different. You've got a baby at home that you're taking care of. I mean, I guess you probably need to be a lot more careful about your movements and things is what I'm thinking of.

Meredith

Yeah, I don't honestly, you know, God willing, I'm not really symptomatic. So I, and I never really have been at this type of count in the 30s, let's say. So I don't really think, I don't really worry about like, oh, if I fall, well I believe, I mean, look, if I fall, I'll get a bruise and maybe it will take longer to go away than the average person. But I don't know that I, I really fear at this point and with these levels that I, I'm restricted with movements. You know, I think in general, like picking up a toddler, you know, I kind of -

Barbara

You know your body. You know that you can tolerate.

Meredith

Yeah, and you don’t feel scared. Like, you know, I think obviously if you're like skiing or something, that's different, but I'm not doing that anyway pregnant. I actually think a lot of the things that you don't do pregnant because of pregnancy actually make ITP easier, right?

Barbara

Yeah, true.

Meredith

You know, a lot of things like I actually think in some ways, like you don't feel as discriminated against because no one, I mean, you could ski pregnant, but that's not really a wise thing, regardless, unless you’re this amazing Olympic skier. So it's like a lot of the restrictions are kind of like across the board restrictions, right? Like ice skating, like, yeah, they don't let you, I was actually just went with my son and my husband to Bryant Park, my husband took my son ice skating, I just took pictures on the side, but they don't let you go pregnant or not, let alone if you have ITP, you know, so I think these things, you actually kind of feel more like, oh, okay, well, at least it's not just me.

Barbara

Right, right. Exactly. Question, did you have a delivery strategy prior to your son being born? And now this time around?

Meredith

Yeah. So that I think was actually the most challenging part of the whole thing outside of getting the infusions was like this anticipation and anxiety of like, well, what's the delivery going to look like? So, I actually wanted to get a c-section from the beginning. I thought it was, I was like, you know what, they could do the IVIG, we can make sure the count's above 70, because this whole thing with the epidural, and I don't know if people are listening, are like, oh, well, what like why does it matter? So, in order to get an epidural, and it actually varies per hospital, so you have to decide where you're delivering. So some hospitals, it's 80,000 to have an epidural, and at Cornell, it happens to be 70,000, which is actually more beneficial for ITP patients, which most people all probably don't think, oh, maybe I should pick a hospital that has a lower number, because you might miss the cutoff. I had spoken to anesthesiology in advance prior to delivery to talk about pain options, but I think the hard part is that if you go into spontaneous labor, which is one of the things I feared and your platelets aren't up, then what happens? Then they have to pull you out and do a C-section. Unless you can deliver, you know, I don't, you know, I guess it depends on what your numbers are. So I did not, I ended up getting a c-section, but it was a really long 36 hours in c-section, which should have just been in a c-section to begin with. So this time around, I will do a planned c-section like I had requested, and I think it will be more controlled in terms of being able to get my numbers up. But I was blessed that I, the two infusions I did last time, I think my counts went to 78. So I was in the ring and I was able to get an epidural. So that was no issue. Sometimes when you have less platelets, your actual platelets work better. So even though I only had 78, which I assume most people with c-sections probably have 200 or whatever, 300 or whatever, 150 let's just, that don't have itp and this is not a variable, I actually lost like less blood they said than a natural birth like I really had no bleeding. Again I think this comes back to like your body kind of figures out a way to heal in some ways and so it kind of compensates for what it lacks so if you're less symptomatic maybe your platelets are clotting better but there's just less of them

Barbara

Yeah, I agree with your body's always trying to find that equilibrium. When something's out of balance, it tries to equal it out. My journey was, my obstetrician let me decide whether I wanted to do a c-section or a natural birth. And I decided, my husband and I, that we wanted a c-section, just because we could, my counts were so low, and I felt that they could address any bleeding much better.

Meredith

Yeah. More proactively with the platelets, yeah, rather than-

Barbara

Right. And I had steroids a couple of days before delivery because it was a planned c-section. And then as I was being wheeled into the OR, they gave me platelet transfusion. And that's the only time I've had a platelet transfusion in my whole life. And my doctor said the same thing, that my bleeding was absolutely mental. One thing that I learned recently is that the American College of Obstetrics and Gynecology, they actually have anesthesia guidelines for patients with ITP. And I don't know what they are, but I was told by a physician, a hematologist, that she actually had to print them out and hand them to an anesthesiologist and say, yes, you can give this patient, you know, an epidural. And that's because of their guidelines. I also know that the University of Oklahoma is working on publishing guidelines for the treatment of pregnant women with ITP. So that will be very helpful, I think, moving into the future.

Meredith

Doctors don't want to be liable if something happens. But I do think this 70 cutoff is so arbitrary because what if it's 65 and you have no bleeding? Why are you making that person suffer without an epidural? Or why are you going to put them under general anesthesia? You know, it just doesn't make sense. And I think there's not an option to like, sign your life away. You know, they just won't do it.

Barbara

Right. And especially when it's something that they don't understand and work with on a regular basis, they're going to be much more cautious. Yeah. You know, which you can understand, but I think, I think these guidelines will be very helpful in the future. Now, when your son was born, did they check his platelet count?

Meredith

They did. Yeah, and it was normal, thankfully, right away. So that was not an issue. And they also checked it at his, like, I think at the pediatrician, he had like a, you know, I think even a year out, they check all labs or whatever. So, they had rechecked it even later on. It was fine.

Barbara

Wonderful. That's the best news you can hope for, yeah right?

Meredith

Yeah. Yeah, yeah.

Barbara

What kind of support have you had, you know, through your pregnancy and all of this, you know, your ITP journey?

Meredith

Yeah. I've had such great support from family, from friends, from the medical community, and I feel really blessed in that department because I think pregnancy by itself, when everything goes smoothly and it's boring and easy and non-problematic and non-complicated, is hard. And then you factor in these other variables. So, I'm really lucky to have had, you know, such great support from my husband, from my parents, from friends, from, you know, doctors, you know anyone that was, you know, PDSA, anyone who was able to help me.

Barbara

It makes a big difference. It really does. You know, people concerned about your welfare and wanting you to do well and stuff, it does make a big difference. I know my advice to you, just one thing when I'm thinking you have a toddler and now you're having another one, the hardest time in my life, physically, with my ITP, was when my children were young, when they were preschoolers. You're just a very busy mom, you know? There's so much going on. You're watching them constantly. You don't want them to hurt themselves, you know. You're concerned about their safety, and then it's all the other stuff in your life that you have to take care of. And, I put my sleep on the back burner. I was busy doing all this other stuff and I was not getting enough rest. So, my advice is make sure you put yourself on the front.

Meredith

Yeah. Hands down the most. Yeah.

Barbara

Yeah. I was not that smart and I suffered for it. I ended up in the hospital with, you know, no platelets, but hey, I'm here. So, I'm, I'm not complaining, but take good care of yourself. Do you have any advice that you would give to a person with ITP that's thinking about becoming pregnant or somebody that has ITP and is pregnant?

Meredith

A few things. I think I would talk to, you know, make sure you find a doctor that's experienced with ITP if you're thinking about, you know, who you're choosing in terms of gynecology, and making sure you like your hematologist and they'll be working together. And also, I think know yourself and be able to advocate for the treatments that you want or the treatments that work for you in the past while understanding that maybe they might be necessary, they might not be. But I think you have to sort of advocate for what, be comfortable advocating for what you think is best. And again, I mean, there are a lot more options, but I think that anytime you're pregnant, right, like nothing's 100% safe, even if they say it is.

Barbara

Right. Right.

Meredith

So I think whatever you can do to do less treatment and get by is the best answer. The other thing about the complication with the vaccines, and this is like a whole other thing, it's like there are a lot of shots that you have to take or that you're supposed to take, especially when you live in New York. And I think we have to be mindful of that because that causes that, you know, that causes platelet drops. So, I think just being mindful of like what are your options and can you wait till the pregnancy is over to get vaccines? I know that's been a conversation for a lot of people.

Barbara

Right. I know that you know not everybody experiences that platelet drop, but it is, it does happen. But I know the studies also show that they do rebound. They'll go back up. You know, they might go down for a little bit, but then they will go back up. So, you know, if you can time things correctly in case that is your issue, you know, that's also helpful. When you look back and think of yourself pre-pregnancy the first time, is there any kind of advice you would want to give yourself now that you've gone through this?

Meredith

Maybe just faith, like it'll be okay. You know, things have a way of working out.

Barbara

Yeah, I understand that though, you know, because sometimes when you're going through something like that, you know, your brain starts to take you to worst case scenarios and that's not where you want to be.

Meredith

Absolutely. And also just like not, yeah, I think there's so much unknown. I mean, even if you don't have ITP, I think like, again, I'm saying this, like it's just an added complication or variable, right? Like, you know, you want a healthy, but even people who don't have ITP are worried, is the baby going to be healthy? Is everything going to be fine after, right? So then you add in ITP and it just makes it even more stressful because there's more variables or things to think about. So, I think it's like people knowing like, wow, it's really possible to have this, like, amazing, healthy kid that nobody would know that the mom had any health conditions, and that there are a lot of people who nowadays have various health conditions, ITP or not, other autoimmune things or, you know, kind of cousin-diseases or disorders of ITP and have healthy kids.

Barbara

Right. Right. So, you're very blessed to have a wonderful, healthy child and another one on their way. That's terrific. Yeah. Strange question, but if you could give your baby a superpower, what would that be to navigate his or her life with?

Meredith

The ability to heal physically or emotionally.

Barbara

Wonderful. That's terrific. That's great. I, that is, that rings true. That's great.

Meredith

I feel like you can't put a price, or you can't like, on general healing, and I mean, emotionally, spiritually, physically, I think like we all can use more healing in our lives.

Barbara

Right. Right. We can't take the healing of a scratch for granted. There's more healing that needs to be done, like you said, emotionally and physically. So well, is there anything else you would like to contribute? I appreciate everything you've said. This has been terrific. But is there any, you have any other thoughts that you want to share?

Meredith

No. I mean, if anyone on that's listening on this podcast, you know, wants, you know, any type of advice or has a question about my experience,  any way that might help them with their own pregnancy journey with ITP or process there, I'm happy to have them reach out.

Barbara

Okay. And they can reach the PDSA with any questions and they can forward them on to Meredith, which is, which is one of the wonderful things about our organization. They really try to connect patients with other patients

Meredith

Yeah, it's amazing. Especially because when you don't know people who have gone through it, you're not sure what it could be. Or you know maybe you've read something, but you don't, you don't know them personally, really, or they're not vetted. So I think having people that are vetted, that are trusted to at least say, hey, this is what happened to me. Everyone's different. You don't know if that will be your story. But it gives hope. It gives like some, you know, some context.

Barbara

And so often I think ITP patients are in their own little island because they don't know other people with ITP.

Meredith

And I think the difference with other autoimmune, and again, it's not a comparison to like, oh, you'd rather have this autoimmune disease versus this one. But I think in general, when you talk about, oh, I have an autoimmune disease or I have, you know, this chronic illness or whatever, the other ones who get more recognition, maybe they're more common, you know, more people have them. So there's a little bit more people to be like, oh, when I was pregnant and I had this, this is what I did. I think with ITP and pregnancy in general, because it's rarer than some of these other ones, you naturally have like, your exposure with people who've been pregnant with ITP is just less than other, for doctors, for patients, for caregivers, for, you know, so I think that makes it a little bit more complicated.

Barbara

Yeah, absolutely.

Meredith

Finding the support and feeling like, oh, they really understand this.

Barbara

And especially when you're going through trying times with your ITP. If you know someone else with ITP that you can contact, it's very helpful because, in as much as your family and friends love you and support you, they don't know what it's like to be in your shoes. And whereas another patient really feels that they understand that. And that's like, not a blockade when you meet each other. It's like, hey, we're like soulmates here. We're on the same on the same journey.

Meredith

No, it's a really, it's like really, I actually had become friends with someone who reached out to me through Facebook. She just had a baby, and we've connected over ITP, and she lives in New York, and she happens to be in the medical field as well. And she had kind of connected with me when she was diagnosed because she was thinking about getting pregnant and I was at that point on the other side. And so, she wanted to know about it. And now she's checking in on me at this pregnancy now that she's delivered. Hey, how are you doing the second time? So, it's really nice to have loved, someone who gets it and understands.

Barbara

Absolutely. That's great that you've got that friend there and close by. Well, thank you, Meredith. This has been, this has been terrific, very enlightening. And I know that being on the journey with ITP, it's important to learn more and more about it in your journey. It makes it a lot easier and especially now for women that are pregnant or contemplating getting pregnant, listening to your story, I'm sure has been very helpful and enlightening to them. So, thank you so much. And we really appreciate it.

Meredith

Of course, thank you so much for having me.

Narrator

Thanks for listening to the PDSA podcast, Bruised but Not Broken: Living with ITP. Made possible by our presenting sponsor, Amgen. Special thanks to Gus Mayorga for composing our theme music. To see what's coming up, visit our website at pdsa.org and subscribe wherever you get your podcasts. Please share this podcast through social media with anyone who you think might benefit from the information and stories we share with the ITP and other platelet disorders community. As always, please speak with a health care professional before making any treatment decisions. But know that pdsa.org is a wealth of information and resources to help you navigate life with ITP and other platelet disorders. Remember, you are not alone.