Jen Grimes

It's hard to understand having this chronic autoimmune disorder that people don't necessarily see the sick.

You can feel very alone and very isolated. You can spiral in your mind. There are days where I say to my husband, I feel like a crazy person trying to navigate this sometimes just because my brain just works in this way where I'm always trying to think about the what ifs of living with this.

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

I want to welcome from Maryland, Jennifer Grimes. Jen's connection to ITP began in 2008. when she was diagnosed with this rare autoimmune bleeding disorder. For more than 15 years. She has been an active member. of the PDSA community. She draws strength from its resources and giving back through advocacy, fundraising and research initiatives. Jen has worked as a pediatric nurse for more than a decade. Her perspective as both a patient and a healthcare professional puts her in a meaningful position to advocate for compassionate patient-centered care. Jen currently sits on the PDSA Board of Directors. And she has also served on PDSA's Patient Research Panel which reviews grants, and proposals to help that which reviews grant proposals, to help ensure that innovative ITP research remains grounded in the real-world needs and experiences of patients.  So, welcome, Jen. So, glad you could join us today.

Jen Grimes

Thank you so much, Barbara. I'm so excited to be here. and share my story and you know, continue to bring ITP to the forefront so people know what it is that we're talking about and just bring awareness. So, thank you so much for having me. I appreciate it.

Barbara Pruitt

Oh, great. Jen, for listeners who don't know your story. Could you briefly take us back to 2008 when you received your ITP diagnosis. And what was happening at your life around that time?

Jen Grimes

Yes, of course. So, in 2008, it was a very busy time in my life. I had just had my second daughter in February of 2008 and at the time I was just trying to get my life in order. I had a 17-month-old toddler And then a newborn. So, I was very, very busy and very, very tired. And life was just chaos. And anyone that has two kids that close in age can certainly attest to everything that comes along with that.

Barbara Pruitt

Oh absolutely.

Jen Grimes

Of course. So basically, what happened, I was very busy taking care of both kids. But then decided I'm so tired all the time. I need to get my life in order. So, I made an appointment with a doctor. I said I wanted to get my yearly physical so that I could get on track and kind of get a baseline. I was going to start going to the gym and doing all these things for myself because I felt like I was drowning with two small kids and so I went to the doctor in June of 2008 for my annual physical, explained kind of the symptoms I was having basically, just a lot of fatigue, feeling overwhelmed and of course the primary care provider said, of course you feel that way. You have a baby and a toddler and stuff like that. But we did blood work anyway. So then at that point, I did my bloodwork and I got my CBC back and it said my platelets were low at that time; initial diagnosis, they were in the 70 thousand somewhere. So, they didn't really say much at first. It was, come back, we'll see. We'll recheck. Not too much but then they were like, okay, we'll just check in a few months. And then it kind of got a little bit better. So, then I started to go about, you know, kind of daily life, still tired, went back again. And so, this was probably, May of the following year. That is, I went back for my next physical and they did blood work. I left to go on vacation, didn't think anything about it. Came back to a letter in the mail from my doctor's office. And the letter said. you know Dear Ms. Grimes, just to let you know, your CBC showed an abnormal platelet count of 34,000 platelets which I immediately started to panic. Nobody said anything me about anything. They just mailed it. There were no phone calls. There was nothing. And I immediately just burst into tears and then of course, Dr. Google; you go down this rabbit hole and you just start spiraling. So, I did call the primary care provider. And started to ask a bunch of questions and they basically said you just need to go see a hematologist.

Barbara Pruitt

Did they recommend somebody that you go see?

Jen Grimes

Nope.

Barbara Pruitt

No, that was left up to you.

Jen Grimes

Nope. That was left up to me. They basically said, you know, you have low platelets. This is something that you need to look into. You just need to make an appointment with a hematologist to follow up further.

Barbara Pruitt

Wow.

Jen Grimes

So, fortunately, my very best friend of 35 years at this point; she's a physician's assistant. So, she gave me some names and some phone numbers. So, I just started making phone calls. Fortunately, someone was able to see me pretty quickly, which was fantastic. So, went; just saw them. Did the CBC again and basically, they explained to me what ITP was; that it more or less is a diagnosis of exclusion. And with that, then; that started my journey of this roller coaster that we call ITP.

Barbara Pruitt

Right. How long did it take them to actually diagnose it once you saw the hematologist? I mean, was it a matter of weeks or months or?

Jen Grimes

To be completely honest, I think it was more a matter of weeks than months because, you know, they did the CBC, but then they did a full panel that checked. All of the things, right? Your thyroid.

Barbara Pruitt

Leukemia, et cetera.

Jen Grimes

Liver, and the leukemia, the stuff like that. And basically, everything else for the most part came back with no red flags. It was very isolated. I wasn't feeling unwell. It wasn't like I was battling some virus or something that could have triggered it to be more of an acute type situation. So, at that point, I just I started to go to the hematologist, which you know I’m a new mom; I’m 30 old at that point with, you know, we're 28 years old at that point with these little, teeny tiny kids and you go into this hematology oncology office and then it's awful. It's awful. It's scary. I was scared walking through the door. I was scared the whole time we were in there. They're taking my vitals; my you know, my blood pressure is off the; through the charts. My pulse is racing because, you know, you're scared and it's such a scary thing, and I did not feel at all supported with my primary care at the time. That relationship ended at that point.

Barbara Pruitt

Well, did you have other symptoms aside from the fatigue, did you have bruising or petechiae or did you know what to look for?

Jen Grimes

So, I knew I've always been one of those people that has bruised very easily my entire life. I'm also not super graceful. I can be kind of clumsy at times, constantly bumping into things. And honestly, with having two small kids that are constantly running into you with their tricycles, or you know just kind of moving around too quickly or kids that run into you and hug you I'd never really thought anything about it because my bruises for the most part. Even to this day, the bruises are more on my legs and the lower half of my body. And I never had any unusual nosebleeds, mouth bleeding, gum bleeding, anything like that. I do get bruises now kind of on my arms or my hands, but more again, clumsiness, putting away groceries, carrying in groceries, stuff like that. But I never really thought about it. As far as petechiae goes. Maybe little bits here and there, but it wasn't anything really that stood out to me. It was more just; I will get these large. bruises. Got it. Sometimes come out of nowhere. I have Sometimes I'll look down and I'll say, I have no idea what I did. But then there's other times. when I'll bump into something and I'm and I'm like, yep, that's going to leave a mark. And it certainly does.

Barbara Pruitt

Well, I think also as we are traveling this journey of having ITP, we kind of learn. What amount of pressure? A bump is going to leave a bruise in what is maybe not going to leave a bruise.

Jen Grimes

Correct.

Barbara Pruitt

And I know, I try to explain to people sometimes I feel like. I walk through life differently because I am very aware of my surroundings whereas my husband has no idea if there's people behind him or besides him. You know, I know how far I am from everything around me. It's kind of my force field that you build naturally to protect yourself from getting bumped and into and from getting bruised. So, it develops.

Jen Grimes

It definitely. Absolutely does. And it's funny. I like how you put that, that it's this force field. Because It's; I feel very much the same way in that I am constantly aware of my surroundings and not that I immediately go to a worst-case scenario, but. I think about things that other people; it would; probably would be something that may not even cross their mind.

Barbara Pruitt

Oh exactly.

Jen Grimes

I go on a walk with my dog. And I think about you know if she pulls me too hard. And cause she's a big girl. She's a, a lot of Labrador, but you know, if she pulls me too hard and now I'm not paying attention to my footing, and I fall and I trip. Then I'm dealing with that. With another problem whether it's a bruising or you scrape your leg and now you're bleeding everywhere. These are silly things that cross my mind. Not a lot of people. Just it's not even something that's on their radar that for those of us that are navigating everyday life with this disease. It's tough. It's tough. You wake up with it on your mind. You go to sleep with it on your mind. There's not one moment in the day where it's not on my mind.

Barbara Pruitt

How do you live with it? What do you do that helps you? And everyone has little tricks of the trade, kind of and I think it's important to share that because we do walk through life differently.

Jen Grimes

Correct.

Barbara Pruitt

People don't understand it because they're not in our shoes.

Jen Grimes

Correct. Well, again, it's hard. I think it's hard too for people because; if people don't necessarily see the bruises or they see the physical symptoms of it. It's hard to understand having this chronic autoimmune disorder that people don't necessarily see the sick. Right? So, it's very hard for people to understand how to navigate this and kind of how we have to navigate this. And it can be very lonely.

Barbara Pruitt

Right. Absolutely.

Jen Grimes

You can feel very alone and very isolated. You can spiral in your mind. There are days where I say to my husband, I feel like a crazy person trying to navigate this sometimes just because my brain just works in this way where I'm always trying to think about the what ifs of living with this. And that's hard.

Barbara Pruitt

Well, and also because you have children you're responsible for and you have a marriage and you've got friends. and you know, you worry about your future. Am I going to be okay here? Am I going to have an accident or something? Something you mentioned earlier about going into the hematologist office, which we know they're all hematology oncology offices. I know I have felt. Over the years, you go into the office and you're the healthy looking one.

Jen Grimes

Yes.

Barbara Pruitt

And there's a guilt feeling that you get. And it's like you want to say. I feel so badly for all of you with cancer. I don't have cancer, but I do have;  you know I mean, you don't need to make an explanation, but I know there's this underlying feeling of guilt, you know, sitting in that waiting room.

Jen Grimes

There is, and it's interesting that you mentioned that. Because I do remember. The very first time I went. to the hematology oncology office. And I was so scared, but I got up that morning, and I showered and I washed my hair and I did my hair and I put on my makeup. just to feel good about myself just to calm my nerves. And, you know, when you get yourself together, if you look good on the outside, it helps you to feel good on the inside, right? And I remember showing up in there and I felt sad. For every single person in there, I was ashamed of myself that I put so much effort into getting myself to look that a certain way, just, although I was doing it for myself to help myself feel good because I was so nervous; anxious about the situation. I went into this place where, like you said, there's very sick people. There's people with no hair, people with, you know, needles and bags and ports and scarves and wheelchairs. And here I am walking in with hair and makeup done. And even still to this day, if I am showering and getting myself ready for my appointment, I often feel bad if I go in feeling good because I know there are so many people. there that are suffering. Because again, this isn't necessarily a disease that you can see.

Barbara Pruitt

And a lot of our symptoms are covered because if we have bruising and petechiae, we've got long sleeves on and pants.

Jen Grimes

Correct.

Barbara Pruitt

So, nobody can see that you know. And they can't see, oh, you're fatigued. There's not a visible sign of that necessarily.

Jen Grimes

I say my hardest time with this a lot of times is in the summer when you are wearing shorts, or if you're in a bathing suit because I am typically covered in bruises on the lower half of my body and you know nobody's really looking at my legs anyway, but it's something there that it's not like one or two little things there could at any time be 10 plus huge bruises and then I; then I start to spiral. Are people staring at me? What do they think? They don't know that I'm sick. And then it just; kind of, you know it just very much spirals from there.

Barbara Pruitt

And oftentimes people feel like, oh, if they're looking at you, they're thinking you're an abused wife

or an abused woman, you know, and you want to stop that, you know.

Jen Grimes

I have the most loving, supportive husband. that any girl could ask for. And the other thing that I feel like is, is kind of, I'd like I believe it's unique to me and my hematologist tells me all the time that I am this special snowflake. That a lot of times, I can go in for my appointment, and I can be covered in bruises, meaning large golf ball size bruises. And I will walk in and, and she greets me and she's like, Hey, how you doing? And I'm like, oh, I'm really nervous. I'm covered in bruises and I feel terrible. I'm just not feeling myself. I'm really nervous and anxious and I'm extra tired. And. She's like, well. Your platelets don't agree. Your platelets are at 100 ,000 today and I'm like, oh my gosh, this is insane. And then there's other times when I go in and. I'm feeling good and I've got tons of energy. And I can tell the second she walks in the door and she's like, hi how you doing today how are you feeling and I’m like oh I feel great; I’m feeling good and she's like Well, you know, your numbers were, we're looking in the 30s. I just. you know let's talk about what's going on. So, for me, what's happening on the outside as far as physical symptoms do not necessarily match up.

Barbara Pruitt

Correlate.

Jen Grimes

Correlate to what's going on the inside which for me is really scary because one would think if I'm feeling awful or feeling a certain way. that, oh, there, that must be something going on. My body's fighting something and my platelets are probably not great. But for me, it's completely opposite. I can feel fantastic. And there is no correlation at all. So, for me, it's this unknown. It's the fear of the unknown.

Barbara Pruitt

Right. Well, that's why I always stress to people that your platelet count is not the only representation of how you're doing.

Jen Grimes

100 percent.

Barbara Pruitt

It's how you present yourself, what are your symptoms, what how you are feeling, your energy, your fatigue levels. along with your platelet count. And my; a hematologist years ago said, if we could come up with a wind chill factor, you know, kind of to correlate; okay, this is where you're at instead of just the platelet count would be.

Jen Grimes

You have to. It's more than; we're treating more than just the number.

Barbara Pruitt

Right, exactly.

Jen Grimes

Because the number does not always line up and that's hard and that's really scary and it's; it's a vicious cycle for sure.

Barbara Pruitt

And it influences how your doctor treats you, how they move forward with your treatment you know.

Jen Grimes

100 percent.

Barbara Pruitt

So, it's real important for them to consider. how you're presenting.

Jen Grimes

And also, it's super important for them to realize and kind of take into consideration where you are in your life as far as do you have younger kids or older kids do you how active you are and stuff like that. There's so many things that come into play. And it's important to have a good working relationship with your provider, because like you said, there are so many different. options. as far as treatment goes. But it's not going to work the same for everybody based on where they are in life what they're looking to get out of it.

Barbara Pruitt

Well, I know you were raising your two young children. And you decided to return to school to become a nurse. What inspired you to take that step?

Jen Grimes

You know, I was clearly out of my mind when I thought about doing that. I'm not really sure what I was thinking. You know, I had an undergraduate degree in business administration, with marketing, and I worked so hard. and you know but then once I had my kids, I stopped working. But for my entire life, I always felt like I missed my calling. I have always been; had this maternal instinct. I've been one to nurture people. I'm always the one that's looking to take care of other people it's just my nature it's who I am, and the joke was, I can't believe you're not a nurse. How are you not a nurse? And I don't know. Maybe I thought I was bored or something with a two-year-old and three-year-old at home. I'm not really sure what I was thinking. But I did decide to go back to school and get my nursing degree. And I'm so glad that I did. It was some of the most challenging years of my life trying to raise little kids and become a nurse. The curriculum is tough. It's a tough job and then working as a nurse and also having little kids at home. And I have a husband that travels a lot for work. It was a lot but it also so incredibly rewarding. I was a pediatric practicing pediatric nurse for more than 10 years. I loved every moment of what I did; I think it's one of those things when you're in nursing, you either love working with kids or you can't even fathom working with kids. And I absolutely loved every second of being a pediatric nurse. I do miss it some days. I did have to eventually take a step back with ah practicing just because I was you know; kids are full of germs. And we're being patient-facing in ah in a doctor's office. I was sick more times than not and my body just couldn't keep up.

Barbara Pruitt

It's hard, especially if you're on treatments that are immunosuppressants, then it complicates it.

Jen Grimes

Correct. Correct.

Barbara Pruitt

Do you think do you think being a patient yourself helped you be a better nurse?

Jen Grimes

A hundred percent. 100 percent. You know, to be a nurse takes a very special type of person and I'm not talking necessarily about myself, but in general. They're; it's like those that are teachers. It takes a very special person to be a teacher. It takes a very special person to be a nurse. You look beyond the medicine. You take care of the person, and you look at it holistically. Everything that they're going through, how it affects them, how it affects their family, their children, their caregivers. And you sit beside people at their worst and you're there for people at their best. You celebrate the wins. And you kind of go through the losses with people. And as a patient, I have had some pretty incredible nurses by my side that have celebrated the wins and have picked up the pieces when I'm not winning. And for me, it was just so important that I be that for others because I just want to give back. I've been so blessed to have so many healthcare care providers that have helped me navigate through this roller coaster and this journey.

Barbara Pruitt

Well, you've gone through a lot a period of trying a lot of different treatments and before finding something that really worked for you. And this is a common occurrence with other ITP patients, but what did that process teach you about speaking up for yourself or participating in your decision-making? And did you feel like you were being heard?

Jen Grimes

Yeah. Honestly, I can say that I have the most amazing hematologist that has been by my side for this entire journey. We joke all the time. I tell her if she ever leaves that practice, I will find her. She will never escape me. And I'm so blessed to have her. Because I really; she's been on this journey with me from day one. She listens. And she really hears me. I started off, you know my first round of treatment was, oh, let's start you with steroids. That's where we start. So, one week of steroids turned into many weeks of steroids, turned into many months of steroids. And the up and down weaning off steroids. And honestly, anyone that has taken steroids knows the crazy that comes with it and the very physical symptoms. The weight gain. the moon face, the anxiety, the anxiousness. We joked that my house has never been more organized than when I was on long-term rounds of steroids just because I was so jittery. I couldn't sit still. I couldn't sleep. I was restless. And you know, every time I would try to taper down from them, my platelets would drop. And then, we back you know; then we go back up and it was such a slow process weaning off of the steroids and it took a really long time and then I would be okay. And then the platelets would drop again and then we would try you know, round two of steroids. but It was months at a time. And I finally went to her, you know, because she could see that I truly felt like I was losing my mind. I did. It was; I was panicking. There was no part of me that felt settled. And also, the numbers were fluctuating so much that I was like, this isn't working and this is not sustainable. So, at that point, we talked about all the things we went to basically round two, which was IVIG. So, we're going to try IVIG. So, you know we did that and that worked for a hot second. Until it didn't. And IVIG with steroids while we're tap you know tapering one to the other. So, It was a lot of trial and error. And again, I did feel very heard by my provider.

Barbara Pruitt

Right.

Jen Grimes

She knew that I was also trying to do this while being a working. nurse, a mom of young kids trying to be present for my family, my husband, my job. all of this, it was really important.

Barbara Pruitt

So, did that lead you to other treatments? I'm assuming.

Jen Grimes

Correct, correct.

Barbara Pruitt

Did you finally find one that has been?

Jen Grimes

Yes.

Barbara Pruitt

More beneficial?

Jen Grimes

Correct. I have I feel like I'm in a good place at the moment. So, the trial and error basically lasted from diagnosis in 2008 until January of 2014. I feel like I really hit rock bottom. I went into my hematology appointment, and I was not feeling well and when they did my CBC my platelets came back at 17-thousand. So, for me, I really, that for me was rock bottom.

Barbara Pruitt

Was your low?

Jen Grimes

That was my low point. I also, that's where I think the anxiety. of this really also hit me very, very hard I started to panic I completely fell apart in the doctor's office. And fortunately, my husband kind of; we both knew something was off, so he was with me for that appointment and thank goodness he was because it was it was really. At that point, just such a low point for me because I was; I was terrified. I was scared. And a little bit of a backstory, and just like a little aside, my mom had passed away. When I was very young, I was 25 and my mom passed away just from a from a blood clot that had gone to her lungs.

So, for me, my biggest fear in life is not being here for my kids. And for me in 2016, my kids were eight and nine years old, you know, eight and 10 years old. And my thought was. Holy cow, something is going to happen to me. And this is going to go sideways. And my kids are not going to have a mom. So, I very much spiraled at that point. So, at that point, you know my hematologist came in; talked me off the ledge. And we just, we built a plan from there. So, at that point, she said, we're moving to a TPO. And so, I started on Promacta in January of 2016, and I have been on that; I was on 25 milligrams for a number of years and then you know I've never really been in the normal range so to speak. There have been a handful of times. maybe where my platelets have gone above 130 ,000. They don't stay there that long. And, but for the most part, being on ProMakda. the 25 milligrams I was hanging out above 50 000 platelets and but then there were more times than not, where they were starting to duck into the 30s and 40s. So, at that point my hematologist said, why don't we up it to 50 milligrams? And ever since I have been on 50 milligrams of Promacto, which has probably been for about two and a half, three years, maybe. They have been at or above 50 ,000. Amen.

Barbara Pruitt

Wonderful.

Jen Grimes

Which I feel like that's a win.

Barbara Pruitt

Absolutely.

Jen Grimes

For me that is kind of my safe zone because yeah my worst-case scenario goes to if I needed a major surgery, I would feel at least in that safe space. And then I don't even know what happened when I went this past week. She walked in and I have never seen her face so excited. I had 122 ,000 platelets and it was, it's a jackpot for me. At least at this snap. shot in time. feel like I’m in a good space. And I'm feeling like I'm. I'm winning this battle, at least for the moment.

Barbara Pruitt

It's not such a heavy load on your shoulders right now with a good, and with a high platelet count like that.

Jen Grimes

Correct

Barbara Pruitt

Well, I know your journey eventually brought you to the PDSA.

Jen Grimes

Yes.

Barbara Pruitt

Tell me about that experience. How did it help you? How did it make you feel?

Jen Grimes

Yeah, so Honestly, it was my husband who found PDSA for me.

Barbara Pruitt

Online?

Jen Grimes

Online. And it honestly, was back when I probably right around 2016 when I was spiraling and trying to steer clear of Dr. Google, who, you know, is going to give you worst case scenario, no matter what. So, he found the PDSA. You know, that's where we kind of started to navigate and research all about this. Because, you know, they give you pamphlets and stuff in the doctor's office, and they can explain it but it's hard to understand a lot of times. It's hard to really grasp. What's going on? Why is your body attacking itself? What did you do wrong? What can you do differently? And of course, everybody has a remedy, right? Eat this do this exercise here and you know, some It works for some people and…

Barbara Pruitt

Well, it's not a situation where one size fits all. We are all very different and respond differently.

Jen Grimes

Exactly. Exactly. So, you know, we got turned on to the PDSA and one of The things that was coming up was that the p the ITP conference was going to be fairly local to us in Washington, DC. So, we were going. I wanted to go. I wanted to see what it was all about, I wanted to hear from providers. I wanted to hear about the research and the treatment options. I wanted to be a part of this community. I wanted to hear stories that would make me feel less alone and less isolated. I wanted to hear stories where people were winning this.

Barbara Pruitt

Yeah. The good side, the good stories.

Jen Grimes

I wanted to hear the good stories because you know you hear so much bad and everybody has a story and everybody's story is so different, but I wanted; I needed to hear some of the good. And I needed to hear that people are living decades. And not that they're just existing, but that they're living.

Barbara Pruitt

They're thriving, right?

Jen Grimes

There is. I think after the, you know, we went to the conference in DC. I listened, I heard, I met so many people. And it really helps me get through that, you know that kind of, I don't want to say low point. But it helped me realize that I'm not alone.

Barbara Pruitt

It's the isolation. A lot of people, until they find the PDSA. They feel like, I think you mentioned, you feel like you're alone on an island, that you're the only one living through this because no one around you has it or even knows what ITP is.

Jen Grimes

Right. And then even when you're in situations, you know, aside from having ITP, I've had other health issues along the way you know. And I've gone to the emergency room for one thing or another and I'm educating the staff and physicians about it. And they're looking at me and you know they're trying to give even just recently Within the past six months, I had this crazy weird dental emergency to the point where the pain was so excruciating that I had to go to the emergency room because like no matter what I did, I could not get the pain under control. So, we're there in the in the hospital and I'm in the emergency room and they are trying to give me this pain medication. And my husband was there with me and I said, “We need to look this up; I need to make sure that...”

Barbara Pruitt

It won't affect your platelet count.

Jen Grimes

Exactly and sure enough guess what the nurse comes to hand it to me and I said to her, hey I can't take this. This is not something that I feel comfortable taking. And she said, oh, well, I'll have to go back to the doctor and, you know, try to figure it out. And the doctor had to come back in, and we had to have a whole long conversation and I said no, you can't give me this. You can't give me this. You can't give me this. So, even at a time where I'm needing to be the patient. You can never not double check, triple check and advocate for yourself.

Barbara Pruitt

You become the educator.

Jen Grimes

You become the educator. And, you know, I'm glad that I was educated enough to know to check and make sure that whatever they were prescribing me, you know, would be okay one way or the other, but there are so many people out there that probably don't even think twice about it because they're trusting that the doctors are; .

Barbara Pruitt

That they know more than I do.

Jen Grimes

They know more than I do and they're doing their due diligence and researching and knowing, well, this person has this and I can't take this. I can't tell you how many providers are quick to say, well, why don't you just take some Motrin? And I'm like, because I can't take Motrin and you should know this.

Barbara Pruitt

Well, I know that where you know if you carry a card, like the PDSA will give you; this little foldable card to carry in your wallet that says you have ITP. Under it, you list allergies. And what I always put is any medication that can lower my platelet count. And I'm not specifying anything in particular, I'm saying any medication that could lower my platelet count.

Jen Grimes

Yeah, it's I mean you always; you have to be two steps ahead at all times to make sure that you’re, you know paying attention to every single thing and you're always advocating for yourself.

Barbara Pruitt

Well, it's keeping your ITP in the forefront is what we're doing and what we have to do.

Jen Grimes.

Correct

Barbara Pruitt

I know that you've, part like I said in our introduction, you've participated in the PDSA's patient research panel. Explain that to me.

Jen Grimes

So, the research panel, we do it once a year. And basically, there is a group of us patients or parents of children that are living with ITP and we get anywhere, you know, anywhere from a handful I think this past year we had 12 different proposals come to us. And these are researchers and people that are looking to, you know, they're putting forth these proposals to just kind of. continue to pave the way for research and more treatment.

Barbara Pruitt

They're looking for a grant from the PDSA.

Jen Grimes

Exactly. They're looking for a grant from the PDSA. So, we basically review these proposals; we kind of judge them; how are they?

Barbara Pruitt

Related to ITP, right?

Jen Grimes

Well, how are you related to ITP? But what's going to be the most, quote, bang for your buck, so to speak, who is, how can we have as many people as possible benefit. From this proposal. Yes, from this research.

And, you know, we read through them. We have this list of criteria. We go through all of it. And then we meet. And we discuss it and we rank it. And there are sometimes where,  you know we have a few that are really kind of groundbreaking And it makes me really excited for people putting forth the energy and the effort and the time to really understand ITP and the more that the proposals are coming forth, they're really considering a lot more than just the numbers.

Barbara Pruitt

The quality of life?

Jen Grimes

They are truly considering the quality of life and they're also kind of looking at smaller patient populations that are affected that maybe fall off the radar, right? So, this year we were really lucky. We had someone that was looking more into the 65 plus community that you know, there's there can be so many other things in addition to ITP.

Barbara Pruitt

That can go wrong.

Jen Grimes

That can go wrong. But then we're also looking at women of childbearing age and how pregnancy is affecting women that have ITP and all of the complications that can come along with that or kids and you know it's really kind of great being on this panel because we're kind of really getting to see where people are looking and different ways that science is like evolving.

Barbara Pruitt

And I think it's also important that you as a patient and other parents of patients are participating in that decision-making because you know better what it's like to live with it.

Jen Grimes

Correct.

Barbara Pruitt

And have lived with your child and take care of your child with ITP. So, I think that's great. I know also that oftentimes at our conferences, we will have some of these recipients come to us after they've done their research. and share what they've found. And it can be very illuminating, you know. And any of that that helps the progress of the treatment for patients with ITP is fabulous, which is great. So, kudos to you for being on that panel.

Jen Grimes

Yes, it's; it can be tedious and sometimes reading all of the medical part of it, even as a nurse, some of it goes completely over my head and we kind of have to kick back and say, we need a little bit more, you know, clarification on this or that. And you know, everybody that has been part of that patient panel, It's really wonderful getting to work with them. And kind of looking at what's down the line which is awesome.

Barbara Pruitt

Wow. Well, I know that you and your husband have had supported the PDSA through fundraising and awareness efforts. And you recently joined the board of directors, which is great.

Jen Grimes

Good. I did.

Barbara Pruitt

What? What inspired you to become more and more involved?

Jen Grimes

I am an empty nester now. My kiddos have just both officially left me for college and going and living their most amazing lives, which is really kind of great but I, you know, within these past two years as well I did take that step back from being patient facing as you know, a practicing nurse because I just kept getting so sick. all the time. I was working in a doctor's office, and I would get COVID twice a year, the flu three times a year. And I got strep for the first time after I turned 40 so, my body just, you know, it just it just wasn't recovering the way that I needed it to. So, I did take a step back from practicing, but I did want to get more involved because I have time on my hands now and especially now that I'm an empty nester. and You know, what better way than to get involved with something that's It's really special to me and it's really important to me. I’m trying to get out there and be a voice for ITP. I am trying to bring awareness to this rare autoimmune disorder. I want to go places now and people already know what is ITP. I don't want to have to go out there and you know, you say you have this and people like I don't know that have never heard of it.

Barbara Pruitt

It's wonderful that you've gotten so involved. And I know that time is an important part of that. When you have the time, you feel like you can really spend it on a cause that's very that you're passionate about, which is wonderful. Let me ask you, how do you feel about the future? And what gives you hope for the ITP community?

Jen Grimes

After reading these proposals. And working with so many doctors and specialists at the conference and kind of alongside where they're proposing things in board meetings and stuff like that, I'm really excited that there's so many people. And their efforts are so incredible that they are looking to do everything they can to raise awareness and think outside the box when it comes to treatments and how can we navigate this and also looking into, you know, there's so many different autoimmune disorders that they're now looking to into medications and treatments that might be treating a different autoimmune disorder that now they're thinking outside the box with how, you know, maybe with the way the mechanism of action is working for that, that how can that be applied to people with ITP. So, it's really wonderful just hearing so many people. And there's so much research being done, I'm really hopeful. We have come such a long way since even just when I was diagnosed, you know, 18 years ago. That in five years; 10 years. I mean, I'm looking just even in these last five years, we've come so far that it makes me really excited for the next five and the next 10 and you know, you look at even people with cancer research where we were five years ago for that and where we are. I'm hopeful that the more that we're raising awareness about ITP and educating people about ITP and saying you know, it's not as rare as one would think. And we need to do everything we can because you know, it's just really important that we deserve to be able to have a quality of life that is wonderful for decades to come. And I do think that the PDSA, really, you know, works with providers and pharma companies and researchers and, and patients and how everybody is working together. It really; it really makes me hopeful.

Barbara Pruitt

That's wonderful. I hope you continue to have a voice on your journey because it's people like you that really do help the cause; helped the, you know, community of ITP patients, you know continuing to raise your voice and work towards a goal and helping others. And you've been a wonderful example of that, Jen.

We really appreciate your efforts and all you've done and will continue to do.

Jen Grimes

Thanks. I appreciate it. And honestly, like for me, sharing my story; even if it helps one person to learn something new about it; feel less alone or you know, give hope, then you know, I've feel like I’m doing what I can and I’m going to continue to do what I can.

Barbara Pruitt

And alleviate some fear. Sometimes patients really have a lot of fear and to hear other stories sometimes really helps with that, you know, alleviate some of that fear.

Jen Grimes

Yes.

Barbara Pruitt

Well, thank you for joining us. This has been a wonderful conversation. We've learned a lot and I know you've shared a lot, and I know that those that are listening will definitely benefit from this.

Jen Grimes

Thank you so much Barbara for having me. I really appreciate you giving me the opportunity to come on here and share my story and talk about all the things and you know, we're ready for the next step. We're ready.

Barbara Pruitt

There we go. We sure are. Thank you.

Narrator

How do you live your life with a bleeding disorder like ITP? From working in the kitchen with knives, to navigating sharp corners in your house, going out to eat in a restaurant, traveling on a plane, attending a sporting event, even dancing at a wedding. ITP patient, Barbara Pruitt, shares her tips and tricks for moving through life with ITP for more than 60 years. Here's her lifestyle lesson for the day.

Barbara Pruitt

When speaking to my guest, Jen, I mentioned that I feel like I have a force field around me. If you don't know what I'm talking about, let me explain. Have you ever been in a grocery store? And someone is in the middle of the aisle with their cart, and you can't get around them? Well, that person is unaware of their surroundings. We, on the other hand, need to be very aware of our surroundings. My awareness of my surroundings is my force field. Well, why is that important? Well, it keeps me from bumping into things, falling and hurting myself, and hopefully minimizes my bruising. This awareness doesn't happen overnight. It takes time. It's part of what I call ITP survival. And it's meant to protect you. To be honest, I don't really think about it. It's just the way I move through life. Kind of slow and deliberate. When I move too fast and I'm not thinking about my surroundings, inevitably I will bang into something. Try to make this your new habit. It'll get easier over time. And it can only help. Well, that's it for now. I hope you'll join me next time on Bruised but Not Broken: Living with ITP. Until then, I'm wishing you lots of happy healthy platelets.

Narrator

Thanks for listening to the PDSA podcast, Bruised but Not Broken, Living with ITP. Made possible by our presenting sponsors, Amgen and Sanofi. 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 healthcare 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.