Tracey Parker

Support for me has been really crucial. That has been a really big part of my success in in feeling supported.

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

Hello and thanks for joining us today. Hope you're having a great day. I know I have so far. And sitting next to me today is my husband, Peter, which maybe you know, or you don't know, but Peter is the chairman of the board of the PDSA and actually works pretty hard for the organization as a volunteer. So, welcome, Peter.

Peter Pruitt

Thank you. Great to be here. And I'm glad to meet all of you people who have met me through the PDSA at the patient conference or whatnot; don't know me as Peter. They know me as Barbara's husband.

Barbara

Right. Well, you have been my husband for quite a while. You've been my biggest supporter through my journey with ITP and something I really appreciate. And he stepped up to the bat, you know, with becoming our chairman at the Platelet Disorder Support Association. And you've been of great help and service to the organization, which is very much appreciated by me.

Peter

It's a great organization.  Truly enjoyed being there for you, but also with the wonderful people I've been able to work with and meet through the PDSA.

Barbara

That's great. It's wonderful. Today, we are continuing our series of patient interviews. And today's guest is from the Detroit area, and she's going to share her journey with us. And one of the things that I think is outstanding about her in her journey. She has been doing Pump it up for Platelets, raising money for the PDSA for quite a few years and has been really successful.

Peter

These patients' stories are very important because no one's story is the same. There is no one treatment that works for everybody.

Barbara

That would be really nice if there was, but we're not at that point. We're fortunate have many. That's right. We are fortunate. There are choices out there. Everyone I've ever talked to that has ITP, all of our journeys are different. So, I think it's really important to hear what people go through, because especially if you're just newly diagnosed, there's a lot of fear and anxiety in that. And knowing that people can find a successful treatment is really inspiring. So that's why i I like to bring patient stories to you on our podcast. So, I hope you can gain some insight and, you know, maybe the information that's shared today will help you in your journey.

Peter

Have a great show.

Barbara

Thank you. Well, I want to introduce to you today, Tracey Parker. Thanks for joining us, Tracy.

Tracey Parker

Thanks for having me.

Barbara

Well, I'm glad to have you here today to tell us a little bit about your journey. We all appreciate your ability to share with us and our hearing audience. So, if let's start off with, tell me a little bit about what was your life like before you were diagnosed with ITP?

Tracey

Okay. So, before ITP, very active. I had started biking about a year before, urban biking in Detroit, had been married for a long time and actually was going through a lot of stress during right before I was diagnosed. Going through a divorce after being married for 26 years, getting a job for the first time in a long time outside of the house and moving. So, all big, big stressors.

Barbara

Right. And sometimes people do feel that the stress of life and different things can trigger autoimmune diseases. So that's not an uncommon story.

Tracey

Right. I will notice that many times during when I've struggled with my platelet numbers, it is directly correlated with how much stress is in my life. So I absolutely believe that stress played a major role in it.

Barbara

Okay. Well, what is it that happened that made you think that, oh no, something is wrong?

Tracey

So first started noticing these large bruises on my leg, hard, kind of painful, didn't go away for a long time. But I was kind of thinking, oh, it's attracted up to riding bikes. And maybe I was hitting my legs on the bikes and just kind of everyday life. Tried to put it out of my mind because I felt fine, didn't think much of it. Fast forward a couple months, I had gone to the dentist and the dentist had noticed that my gums were bleeding fairly heavily. And I said, oh, they always bleed and kind of dismissed it again. It felt like a pieces of a puzzle, right? Then the next thing I went for a massage and they said, you have tiny bruises on your back. Again, dismissed it. Started noticing blood blisters on my tongue. And then kind of the final thing was I was scratching my hand and noticed blood pooling underneath the skin. And I thought, that that can't be right. So made an appointment with a new internist.

Barbara

So, you went through quite a lot of symptoms, not knowing what they were and dismissing them as to part of life. And then it led you to your doctor. What did they do as far as how did they determine that it was ITP? Did you have a lot of testing done?

Tracey

A lot of blood testing done. First went to my internist and he came back with, I need to run the blood work again. and knew that something wasn't quite right. I talked to him about the bruises and he at that point said, I think it's old age, but we'll see. Something will come up. If anything's wrong, it will come up in the blood work. And then he called me the next night and said, clear your schedule for tomorrow. I need you to go in and see a hematologist oncologist and made an appointment with him. And he said, you know, just clear the schedule for the day. I don't know what's in store. At that point, he thought it was ITP. So, he said that right away and then went to the doctor the next day and he did blood work as well.

Barbara

Right. And is that when he pretty much gave you the diagnosis or what he thought it was?

Tracey

So interestingly enough, took a friend who was a nurse with me and really the smartest thing I've ever done because he insisted that I had a very mild case, and I had found out that my platelets were 15,000 the day before. And when this doctor did the blood work, he said they're at 120,000. I think it's just a really, you know, you've got low ah low platelets. He thought it was ITP, but it was just, you know, it was not too low. He wasn't terribly concerned. And she was the one who, um my friend was the one who was really pushing and saying, I don't think this is right. I don't think that they can fluctuate that much in a day without any kind of treatment.

And so he ran the blood work again. He said, but you know, I see cancer patients all day long. And she said, somebody's machine I feel like is wrong. And I was ready to get up and leave. Had she not been with me, I would have left. And kind of gone on. with I was supposed to get on a plane the next day. He said, I'm going to send these the blood work out to another lab that night. He called me that night and said, I need you to be in the hospital. You're at 15,000 and I need you there right away.

Barbara

Wow. You really had a ah good advocate with you, not even knowing, really?

Tracey

Absolutely.

Barbara

And so then did you feel confident that this was the right diagnosis?

Tracey

Yes. I mean, they, yeah, they did more testing, a lot of questions, a lot of questions about,

they were particularly interested in drinking alcohol if I was a heavy drinker and if I drank a lot of tonic water. That was kind of, that was it. I mean, we talked about possibly ah virus or something, had I been sick or anything, but that was about it. And I I felt confident, but, you know, I, at that point didn't want to you know, didn't know that I should be questioning people at that point because they knew what they were doing. They're the doctors and I'm just the patient.

Barbara

Right. So, did you have a lot of support from your friend or from family members during all this?

Tracey

Absolutely. Yeah. Support for me has been really crucial. You find the people that, you know, I’ve called them for years, my Thursday people, because I always went in on Thursdays and they would always check in with me and say, you know, how was the doctor's appointment or, where are your platelets. So that has been a really big part of my success and in feeling supported. Yeah.

Barbara

In your journey, it's really important that you have people on your side that are going to be up there, you know, caring about you and worrying about you somewhat. So, were you hospitalized? You said you were. The doctor told you to go to the hospital. And how long was that?

Tracey

I was in the hospital for two days. They needed my platelets to be, ah and I can't remember at the time, I know that they went down to 6,000 in the hospital, and I think they needed them to be around 30 or 40,000 before I left. So heavy doses of steroids um was the way they started to treat me.

Barbara

And was that for a very long period of time, or was it? sure

Tracey

It was about four weeks or five weeks, I believe. And at that point, they you know every time they would try to taper me off, they they would just fall. So the next course was rituximab.  And that was I did four infusions of that.

Barbara

Wow. And did that help?

Tracey

Did not help. Yeah. It didn't help. No. So over the next, probably little over a year, lot of steroids on and off. I was delaying. They really wanted a splenectomy. My insurance said that I had to have a splenectomy before I started other drugs.  And I actually consulted four or five doctors before doing the splenectomy. I really did not want to do it, but, uh, But like I had done my homework, I had talked to a lot of well-respected doctors who I trusted their ja judgment. And so went ahead and had that.

Barbara

And what year was that?

Tracey

That was in a year, it was probably a year and a half after I was diagnosed.

Barbara

Which was how long ago then?

Tracey

I was diagnosed nine years ago. Okay.

Barbara

Okay. So that was like in 2019 or 2018 that you had the splenectomy?

Tracey

Yes. Yeah. like that

Barbara

Okay. Because it's not really considered a first line of treatment. You know, and there are guidelines regarding the first lines of treatment, second line of treatment, third line of treatment, you know, ah if the first and second don't work. So, you had a splenectomy. Have you done since the splenectomy?

Tracey

It worked for about six weeks. Two weeks into after I'd had the splenectomy, I ended up back in the hospital for unrelated issues. And they went in and did a scan because they were trying to figure out why my liver enzymes were spiking and came back with we think you have a second spleen, accessory spleen. So still don't know if that is working. Not really sure. So, within probably six to eight weeks, my platelets were falling again and just couldn't maintain anything.

Barbara

Okay. Did they do a liver spleen scan to see if you did have an accessory spleen?

Tracey

They did a heat-seeking scan, um and that's how they, yeah. Nuclear.

Barbara

But did you have accessory spleen or not?

Tracey

I do. I still have it.

Tracey 

I do. I still have it. 

Barbara 

You do. 

Tracey 

Yes. 

Barbara 

Oh, how about that? How about that? So you're still getting protected splenic-wise with your accessory spleen, but they didn't talk about removing that also? 

Tracey 

They did talk about removing that. We tried radiation because it was so small. And because I had had two abdominal surgeries within, you know, a couple of months surrounding my splenectomy. So, we tried radiation and that failed. I still, it's still there. 

Barbara 

Okay. Okay. So what have you done since then as far as treatment? 

Tracey 

So, after that, two of the TPOs. I was on   for probably, I want to say six or seven months each of those, one a pill, a weekly shot. Those didn't work. And at that time, a new drug was coming out. I have a friend who's a drug rep. And she called me one morning and said, listen, I was up reading because I couldn't sleep. And I hear there's a new drug coming out. And maybe this is something that that will work for you. So, I took that into my doctor. And he said, it's a new drug. We don't know anything about it. Not really sure. And this went on every single time I went into the doctor's office. And meanwhile, I'm taking a lot of steroids again and developed cataracts in both my eyes. So needed cataract surgery, but I could not get above the 50,000 where, where my doctor was comfortable doing the surgery. 

Barbara 

The cataract surgery? Wow. 

Tracey 

They said, you know, very low risk of bleeding, but you just, you just never know. So, they were not willing to do that. So finally had that. And then my doctor ended up sending me to another doctor who he knows well and said, I'm going to have him figure this out because you just can't seem to nothing's working for you. So, we went into another doctor. And that doctor   was the one who came back and said that he wanted to put me on the new drug, which is, and I'm still on it six and a half years later. So, and that's, I can't even say it. 

Barbara 

Wow. 

Tracey 

Yes. I always want put an n there. So, 

Barbara 

Fostamatinib 

Barbara 

These generic names are not easy to pronounce, you know, for us lay people, you know, Fostamatinib. Okay. So that's been the thing that has brought your counts up. And in how high are they? How have they been? Have they been pretty stable or have they fluctuated or what? 

Tracey 

So, I've been out for six and a half years. They have fluctuated.   Like I said, ah stress, again, has played a big role. I lost both my parents within three months of each other. And that entire year, I couldn't give get above 20,000. I kind of lived between 12 and 20,000. So that's when I started kind of in between there and is when I started the drug. And then I  kind of bounced around. We played around with doses, went up to the maxim  dose for a long time. And I had a lot of side effects from that. But it did change kind of, it gave me some relief in terms of watching those platelets all the time and having to go in as often as I was going in, you know, if it was once a week, it's lot. I usually the last two and a half years I've been between probably 200,000 high 400,000. 

Barbara 

That's wonderful. That's remarkable, really. 

Tracey 

I cut out gluten a couple of years ago, almost two years ago. And ever since that I cut gluten out. I have noticed that my platelets have stayed stable. So, we have reduced my dosage three times. I've asked every single time. I've become that, that patient who goes in and I now have taken a very active role in my, my care. And so I just they don't need to be that high. So, we just had a reduction about three or four weeks ago again. 

Barbara 

Okay. Well, that's good that you speak up for yourself because that's really important. You need to be able to do that as the patient and you need to be heard by your physician. So, that's good that you've been able to do that. And that's interesting about the gluten for you because maybe that did make a big difference, you know, or contribute to the success of your treatment which is wonderful. I know that you've done, not only has the ITP affected your life in many ways, but I know you've given back. You've been very generous. And how did you connect with the PDSA initially? How did that come about? 

Tracey 

As many times as we all like to Google and late at night, I was doing that constantly. I never saw a PDSA. I don't think I scrolled down far enough and, you know, got on some website that, you know, I got distracted by and it was two and a half years in when everything else had failed. And I finally found them and I thought, where's this been? Why haven't I seen this? And started looking. I had looked all along for a support group because I knew I needed a support group connecting with other people who were going through this because as much as my support has been great, they don't know what it's like to sit and worry about, am I going to have a brain bleed? am I gonna? What's going to happen?   

And so, I found them two and a half years into my diagnosis. I ended up going down to the Cleveland Walk because ah like three and a half hours drive. And I just thought, you know, I really want to go and See if I can meet some other people. And it was life changing. It really was amazing. 

Barbara 

So, how about that? Wow. So, that was their Pump it up for Platelets walk in Cleveland that you went to. 

Tracey 

Yes. 

Barbara 

Wow. 

Tracey 

So that was 2019. 

Barbara 

So how did how did it change your life? Okay. And how did that change your life? What did what did you feel like? What kind of a difference did it make? 

Tracey 

Just to have that support and people who really understood. i remember going out on the walk and they had signs along the way. And I was like, they're talking about fatigue. I go in and talk about fatigue all the time. And my doctors are like, you know, it's, they don't often talk about the fatigue factor and fatigue for me has been really hard. So, I had several people ask me about my story at the walk and that was amazing. 

And listening to other patients and seeing people who were actively going through treatment makes a huge difference. And I got in the car, and I drove three hours, three a half hours back home - probably cried half the way because I just was like, this was amazing. Really was. And got to meet Jody and everybody else from PDSA. So, it was wonderful. 

Barbara 

Oh, that's terrific.  I know myself, it was life-changing. You know Finding the PDSA on online, it was just life-changing. And I mean, I've been involved now for 20 years plus. And I can't stress that enough that connecting with other patients on a one-to-one basis, being able to share your stories; it just means so much because otherwise you, you feel like you're on a desert island. Nobody else, nobody else really understands, you know, what you're going through. And I know you've taken it a step further after you went on that walk, you started your own. Is that right? 

Tracey 

Yes, started my own. Our first year, well, I came when I talked to Jody at the walk, I said, I really am kind of interested in starting a support group. And but I was a little nervous about that. And then I said, I'd like to do a walk in my area. And she's like, we'll help. So that was 2019 in the fall. Fast forward, March of 2020 was our first support group. And then we were supposed to do a walk in September that year. Obviously it was canceled. So, I did a virtual walk the first year. And then the second year 21 and they, PDSA had canceled all events except for mine. And I promised them and that I would keep everybody separated at the walk. And we had, I think we had like 80 people at it. I think people were so excited to just be out and walking, but yeah, it was pretty amazing. 

Barbara 

Wow. That's amazing. 80 people at the walk. Goodness gracious. 

Tracey 

That first one, I think, you know, there was nothing really going on still. You know, the kids weren't back in sports really that much. And so, there weren't a lot of distractions. So, it was nice to kind of be out. But I was, you know, nervous about being in a big group. But we were really were good about kind of keeping people in their pods at the time. 

Barbara 

Well, I know that your Pump It Up for Platelets walk has been one of the most successful ones for the PDSA. And   for you to take it on is really wonderful. And with their help, it did not seem like it was a huge burden or did it seem overwhelming for you?  

Tracey 

Effortless. It really is. The hardest part is really finding a place where you can have it. And we have it at a cute little park close to me.   You know, it's not a big park and you walk on a wooded path. And you walk a lot of times in a circle. But there's a big hill if people want to run the hill. And it's just lovely. And it's shaded and lots of beautiful trees. And the place where we have it, they always are very welcoming and letting us have it there. So, this year will be the fifth annual walk. 

Barbara 

Wonderful. Oh, that's great. Now, I know I met you at the ITP conference in Chicago. 

Tracey 

Yes. 

Barbara 

So, have you attended more than one?  

Tracey 

That's the only one I've attended so far. So, hoping to go more. 

Barbara 

Okay. And how did it feel going to the conference? How did it make you feel? Did it change the way you looked at things? What was its impact on you? 

Tracey 

I think the biggest impact was talking to the other patients and kind of hearing everything. thing You know, we've got a lot of similarities, but then we all have kind of a different story and a different path that we've gone on. So, it's been really interesting to see, you know, where people are treated at what, you know, where their levels are and what their doctors think. You know, everybody's really kind of in ah on a unique journey. So that was great. ah The information that I got from the conference was really wonderful. And, you know, I loved that one in particular. They focused on mental health, which I've been a big; I talk a lot about mental health with this illness because I really, I feel like it takes a mental toll on us   to sit in those doctor's offices once or twice a week for years on end and have blood work done. I think it's, it's, it's tough. And I've, I've learned how to meditate and my Reiki is a big thing for me. And I go to sound bath healings and I kind of use it all as part of my wellness journey to make sure that I'm just kind of keeping calm and not letting stress get to me. 

Barbara 

That's wonderful. And it's a shame that you had to go through all of this in order to learn how to relax and keep stress at bay. I know   at the Chicago conference, they had psychologist there speaking about how the diagnosis of ITP can lead to PTSD, post-traumatic stress disorder. And to be honest, that was eye-opening for me. Because i was diagnosed as a child, I really did not know the difference. But you know thinking about it, which I had never done, is for people, you know whether they're a teenager or adult, whatever, getting a diagnosis like that is life-changing and stressful. 

And I know as an adult, you know you research, you go through all these things, and your brain will take you to the darkest place. And that's not where you want to be.   And I know that one of my future podcasts is hopefully going to be with that psychologist because I've asked about that because I think she was just very enlightening about how that type of stress of a diagnosis can affect you in in a negative way and how you can go about hopefully combating it, which it sounds like you definitely have done, Tracy. You've gotten some help. you know, in order to keep things, you know, balanced in your life. Right? 

Tracey 

Absolutely. Absolutely. And I, you know, early on started seeing a therapist whenever I needed to. And at the time I thought I was handling it all really well. And I had a friend, a dear friend who said, you know, you've had a lot of loss lately and loss of your health is a huge, huge thing. So was like, no, I'm fine. And really, I think that's another piece of the puzzle that has been really, I can't say it enough that, you know, if you can find somebody that you can talk to that can help you through some of those moments when you're really feeling like, boy, this is overwhelming. 

Barbara 

Yeah, I know we're kind of conditioned in our life to say, oh, everything's fine. Yeah, how are you? Oh, fine. 

My dad used to say, you know, when you'd say, oh, how are you? You'd say, no, how are you really? You know, and then you knew it was kind of safe to say how you really were. Not you weren't giving that rote response. It was like, okay, how are you really? And if you can find a friend that asks you, how are you really? That's a really good friend. you know That's somebody that can be very supportive to you. 

Well, I applaud your involvement with fundraising.   And I know for myself, I've considered it many times. I've had a support group and considered the fundraising, but I felt it might be overwhelming. So, what what advice would you give to other people that are maybe considering the fundraising aspect, whether it's Pmp it up for Platelets or a Bowl-a-thon or whatever they want to do? What would you think? What would you say? 

Tracey 

Like I said, you know PDSA and Jody have made it just, it's effortless. you know They take care of the t-shirts and they come and help with, you know if they're available, they'll come and help with registration. 

You know, i I gather friends and maybe have, you know, some donations of food and things like that. But really, it kind of runs itself. You know, like it's why I've stayed with the same park because it's just it's easy. They don't charge us a fee for having it. A lot of parks do charge that fee. So, I'm really careful; it makes about making sure that, you know, the focus is on raising money for PDSA. and for you know; I just think it's so important.  

Barbara 

That's wonderful. And to end the conversation here, because you've given us so much information and I appreciate you sharing your story and how you feel and all that you've done has been remarkable. If you were speaking to a newly diagnosed ITP patient, would you have any pearls of wisdom you'd want to share with them? 

Tracey 

Absolutely. I think the first thing is I really learned early on to control what I can control and kind of let the rest go. I was really, it was very frustrating for me. And so, I thought, what can I control? I can control my sleep. I can control my stress to a certain point. I can control what I'm eating; so, control those things. Some of it's out of our control so that you're not feeling so frustrated with what's going on because it is such a scary time and you have more questions a lot of times than answers. So, I think knowing what you can take part in. I think the other thing is it took me two and a half years and finally finding PDSA to really become that advocate for myself when I'm in the doctor's office and to say, what about this? And what if we tried this dose? I mean, I'm sure they see my name ah and they're like, oh, she's coming in today. What is she going to ask for today? You know, the other day I was in and ah they said, we'd like to see you back in four weeks just because we were changing the dosage. And I said, how about six weeks? So, I really think becoming a partner in your, in your journey and in your diagnosis, I think it's, it's huge. 

Barbara 

I agree. I agree. I see my doctor every, you know, he'll say, well, when do you want to see me next? And I go, three months. Okay. Okay. He puts it down fine. Three months, you know, and I go in for lab the morning that I see him, I get the lab done. 

Tracey 

Right. 

Barbara 

It is a partnership, you know, early on, I think lab needs to be done frequently because they're trying to stabilize you or see where you are and, you know, adjust dosages and medications. And, you know, there's definitely times when you need to have lab work done more frequently. And then there's times when, you know, what difference does it make? I mean, for me, it's, for me, it's like my counts are low. I know they're going to be low. What difference does it make? You know, whether I get it done next week or in three months.  

Tracey 

Yeah, I think focusing, we tend to focus, especially in the beginning, focusing on that number. And I know I focused so much on that number. And am I going to have a good day or is it going to be a bad day? Is it going to be a bad week where they're not going to let me get on my bike? Or is it going to, you know, not, if I'm you know, too tired to do something.   We really need to to make sure that that number is, you know, we need to not always look at the number and be focused on that. 

Barbara 

Not focus on it so strongly because the other, the other component of that is how do you present yourself? Are you having symptoms? Are you bruising? Do you have a petechia? Have you been bleeding actively at nosebleeds, whatever gums bleeding? So it's not just the number it's both. It's how you present and how your numbers are. And you got to, those need to be both weighed equally with it. So, well, you've been terrific. Thank you so much for being so willing to share your story. 

Tracey 

Thank you, Barbara. 

Barbara 

This has been great. And I know that people will feel good about hearing this, you know, and to know that they're not alone and they can always come to our podcasts and of course, to our PDSA events and conferences to feel a part of a family, a community of like of like-minded people and people going through the same experiences. There's nothing like it. So, thank you again, Tracey, and really appreciate it. 

Tracey 

Thank you very much, Barbara. 

Barbara 

You have a great week and hopefully I'll see you at the next conference. 

Tracey 

Sounds good. Thank you so much. 

Barbara 

Okay. Bye-bye. 

Tracey 

Bye. 

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

I remember when I was a little girl, my mother had a small little notebook and in it, she kept track of my vaccinations. And I had three brothers, there were four of us, and she kept track of all of our vaccinations because she felt that was really important that we were getting what we needed and we had moved and, you know making sure that we were kept up to date with our vaccinations.

Well, fast forward, I realized that it's really important to keep a medical journal. I don't want that to sound overwhelming because it shouldn't be, especially nowadays with technology. i mean, you could keep a medical journal on your telephone and hit the microphone and just talk into your phone and say, you know, whatever medical issue you're dealing with at the time.

But the things I think that are important to keep in a medical journal especially with ITP, would be keeping track of what your counts are and what medications you're on or treatments that you're on or what you're doing to hopefully help your ITP.

Because it's important to know what it was at what specific time that that helped your ITP journey. And if you have a medical journal, you can look back and say, you know what?

Three years ago, i was, whether it was gluten-free or something in my counts, and when I look at them, they were a little higher or you know, whatever, looking back to see what treatments you were on and that they helped at a certain dosage. Those are things to keep in in mind regarding your ITP. But in addition to that, it might be really important for you to put down when you've had a virus, if you've had COVID, if you've had the flu, if you had the flu shot, any of your vaccinations, put those in there also. Would also be good to know, you know, if you had a bad fall, um because maybe 10 years from now, your elbow's hurting you and you don't know why. And then you look back in your medical journal and say, oh gosh, 10 years ago, I fell and I really hurt my elbow.

It kind of puts your puzzle pieces together. I know for myself that, you know, when I'm seeing a doctor and whether it's my regular doctor or not, and they'll ask me a question about, well, when did you have rituximab?

And I go, gosh, that's been quite a while ago. and i And I have to look it up and it's there in my medical journal, you know, when it was that I had it and how many doses I had and what my results were, or when I had IVIG, did I have any response? Did my counts go up? Did I have any side effects? Those are all important things to know and for the future too. And like when you do get a treatment like an infusion, like IVIG or rituximab, it's also kind of interesting if you would put down the lot number of the treatment or the brand name of it, just so you have it in the future to know that, oh, did this brand name helped me better than another brand name? Because maybe there is a difference between different brands.

Anyways, that's my advice. Keep your medical information in a journal and don't think of it as being a big obstacle. Think of it really as something that would be very helpful for you and the future because, you know, we can't stop from getting older. And who knows what lies in the future and what information would be helpful to the doctors in the future to know about the journey that you've been on, not just with your ITP, but with other things. So keep that in mind. And that is my lifestyle tip for today. Have a great day and I wish you happy, healthy platelets.

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 healthcare 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.