Become a Creator today!Start creating today - Share your story with the world!
Start for free
00:00:00
00:00:01
Fighting for Answers, Finding Her Voice: Tracey’s ITP Journey
46 Plays7 months ago
In this inspiring episode of Bruised But Not Broken: Living with ITP, Tracey Parker shares her deeply personal journey from diagnosis to empowerment. After facing multiple treatment challenges and a rollercoaster of platelet counts, Tracey found strength in community, advocacy, and becoming her own best health advocate. Hear how support from friends, persistence in the face of setbacks, and discovering PDSA changed her path—and how she’s now giving back through one of the organization’s most successful fundraising walks. Whether you’re newly diagnosed or years into your ITP journey, Tracey’s story is one of resilience, hope, and the power of connection.
Recommended
Transcript
Introduction and Personal Success
00:00:00
Speaker
Support for me has been really crucial. That has been a really big part of my success in in feeling supported.
Understanding the PDSA Podcast and ITP
00:00:18
Speaker
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?
00:00:31
Speaker
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.
Meet the Hosts: Barbara and Peter
00:00:46
Speaker
Here's your host for this episode, Barbara Pruitt.
00:00:57
Speaker
Hello, thanks for joining us today. hope you're having a great day. 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.
00:01:16
Speaker
and actually works pretty hard for the organization as a volunteer. so welcome, Peter. Thank you. Great to be here. And I'm glad to meet all of you people who have met me through the PSA at the patient conference or whatnot. Don't know me as Peter. They know me as Barbara's husband.
00:01:35
Speaker
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
Sharing Patient Stories for ITP Awareness
00:01:52
Speaker
Association. And you've been of great help and service to the organization, which is very much appreciated by me. It's a great organization.
00:02:00
Speaker
It is. Truly enjoyed being there for you, but also with the wonderful people I've been able to work with and meet through the PASA. That's great. It's wonderful. Well,
00:02:10
Speaker
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.
00:02:23
Speaker
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.
00:02:37
Speaker
These patients' stories are very important because no one's story is the same. There is no one treatment that works for everybody. That would be really nice if there was, but we're not at that point. We're fortunate have many.
00:02:50
Speaker
That's right. We are fortunate. There are choices out there. So 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 there's a lot of fear and anxiety in that.
00:03:08
Speaker
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.
Tracy Parker's Journey with ITP
00:03:29
Speaker
Have a great show. Thank you.
00:03:35
Speaker
Well, I want to introduce to you today, Tracy Parker. Thanks for joining us, Tracy. Thanks for having me. Well, I'm glad to have you here today to tell us a little bit about your journey.
00:03:49
Speaker
We all appreciate your ability to share and and 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?
00:04:04
Speaker
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.
00:04:21
Speaker
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.
00:04:33
Speaker
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.
00:04:45
Speaker
Right. Right. I will notice that many times during when I've struggled with with my platelet numbers, it is directly correlated with with how much stress is in my life.
00:04:59
Speaker
So I absolutely believe that stress played a major role in it. Okay. Well, what is it that happened that made you think that, oh no, something is wrong?
00:05:11
Speaker
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.
00:05:29
Speaker
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 um fairly heavily. and And I said, oh, they always bleed and kind of dismissed it again.
00:05:46
Speaker
um 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.
00:05:59
Speaker
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.
00:06:13
Speaker
Okay. 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?
00:06:28
Speaker
but 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 the blood work.
00:06:46
Speaker
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.
00:07:04
Speaker
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. Right. And is that when he pretty much gave you the diagnosis or what he thought it was?
00:07:18
Speaker
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.
00:07:33
Speaker
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.
00:07:49
Speaker
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. Treatment.
00:08:02
Speaker
And so he ran the blood work again. He said, but you know, I see cancer patients all day long. And 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.
00:08:16
Speaker
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 with these the blood work out to another lab that night.
00:08:27
Speaker
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. Wow. You really had a ah good advocate with you, not even knowing. Really?
00:08:40
Speaker
Yeah. And so then did you feel confident that this was the right diagnosis? ah Yes. I mean, they they, yeah, they did more testing, a lot of questions, a lot of questions about,
00:08:53
Speaker
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 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 I,
00:09:20
Speaker
They knew what they were doing. They're the doctors and I'm just the patient. Right. So did you have a lot of support from your friend or from family members or absolutely during all this?
00:09:31
Speaker
Absolutely. Yeah. Support for me has been really crucial. You find the people that, you know, I 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,
00:09:48
Speaker
wear your platelets. So that has been a really big part of my success and in feeling supported. Yeah. In
Managing ITP: Treatments and Challenges
00:09:57
Speaker
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.
00:10:13
Speaker
And how long was that? 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 they started to treat me.
00:10:33
Speaker
And was that for a very long period of time, or was it? sure 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.
00:10:51
Speaker
so And that was I did four infusions of that. Wow. And did that help? Did not help. Yeah. It didn't help. No. So over the next, probably little over a year, lot of steroids on and off.
00:11:07
Speaker
I was delaying. They really wanted a splenectomy. My insurance said that i had to have a splenectomy before I started other drugs. So, yes.
00:11:19
Speaker
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. so And what year was that?
00:11:40
Speaker
That was in a year, it was probably a year and a half after I was diagnosed. Which was how long ago then? i was diagnosed nine years ago. Okay.
00:11:50
Speaker
Okay. So that was like in 2019 or 2018 that you had the splenectomy? Yes. Yeah. like that Okay. Because it's not really considered a first line of treatment. Right.
00:12:05
Speaker
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. Right. So you had a splenectomy. Have you done since the splenectomy?
00:12:17
Speaker
Did that work for you? It worked for about six weeks. um Okay. Two weeks into after I'd had the splenectomy, I ended up back in the hospital for unrelated issues.
00:12:30
Speaker
And they went in and did a scan because they were trying to figure out why my liver enzymes were were're spiking and came back with we think you have a second spleen, accessory spleen.
00:12:43
Speaker
So still don't know if that is working. Not really sure. So within probably six to eight weeks, i my platelets were falling again and just couldn't maintain anything.
00:12:57
Speaker
Okay. Did they do a liver spleen scan to see if you did have an accessory spleen? They did a heat-seeking scan, um and that's how they, yeah. nuclear. Okay. But did you have accessory spleen or not?
00:13:10
Speaker
I do. I still have it. You do? yeah 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?
00:13:23
Speaker
They did talk about removing that. We tried radiation because it was so small and because I'd had two abdominal surgeries within, you know, a couple of months surrounding my, my splenectomy. So we tried radiation and that failed. I still, it's still there.
00:13:42
Speaker
Okay. Okay. So what have you done since then? So after that treatment, Two of the TPOs. um I was on for probably, i want to say six or seven months each of those. One a pill, one a weekly shot.
00:14:02
Speaker
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.
00:14:16
Speaker
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.
00:14:27
Speaker
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.
00:14:41
Speaker
So I did cataract surgery, but I could not get above the 50,000 where, where my doctor was comfortable doing the surgery. So the cataract surgery. Yes.
00:14:54
Speaker
Wow. Yeah. They, they said, you know, very low risk of bleeding, but you just never know. So they were not willing to, Right.
00:15:05
Speaker
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.
00:15:20
Speaker
So I went into another doctor and that doctor was the one who came back and said that he wanted to put me on the the new drug, which is, um and I'm still on it six and a half years later. So, and that's flostaminate. I can't even it. Flostaminate, right. I knew it. Yes.
00:15:38
Speaker
I always want to put an N there. So flostaminate. these These generic names are not easy to pronounce, you know, for us like lay people. fot maddenip Right. Right.
00:15:50
Speaker
Okay. So that's been the thing that has brought your counts up. and And how high are they? How have they been? Have they been pretty stable or have they fluctuated or what?
00:16:01
Speaker
So I've been on it for six and a half years. They have fluctuated. Like I said, 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.
00:16:14
Speaker
twenty thousand 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 maximum dose for a long time. And I had a lot of side effects from that, but it did change kind of.
00:16:39
Speaker
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. So I usually, the last two and a half years, I've been between probably 200,000 and and a high
00:17:00
Speaker
so That's wonderful. That's remarkable, really. Really remarkable. I um ah 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.
00:17:19
Speaker
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 just, I, they don't need to be that high. So we just had a reduction about three or four weeks ago again.
00:17:35
Speaker
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, of your treatment, which is wonderful.
00:17:57
Speaker
yeah I know that not only has the ITP affected your life in many ways, but I know you've given back. You've
Community Support and Involvement with PDSA
00:18:05
Speaker
been very generous. How did you connect with the PDSA initially? How did that come about?
00:18:12
Speaker
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 to sit and worry about, am I going to have a brain bleed? am i goingnna What's going to happen?
00:18:30
Speaker
Exactly. 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 so 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.
00:18:48
Speaker
It really was. amazing. How about that? Wow. So that was their pump it up for platelets walk in Cleveland. Yes. That you went to. Wow. Okay. And how did that change your life? What did what did you feel like? What did it kind of a difference did it make?
00:19:03
Speaker
Just to have that support and 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, they don't often talk about the fatigue factor. And fatigue for me has been really hard. So um I had several people ask me about my story at the walk.
00:19:28
Speaker
And that was amazing. and And listening to other patients and seeing people who were actively going through treatment is makes a huge difference. And I got in the car and I drove three half hours back home probably cried half the way because I just was like, this was amazing.
00:19:44
Speaker
It really was. And got to meet Jodi and everybody else from from PDSA. So wonderful. That's terrific. I know myself, ah i it was life-changing. Finding the PDSA on online, it was just life-changing. And I mean, I've been involved now for 20 years or plus.
00:20:02
Speaker
yeah 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 it just means so much because otherwise you you feel like you're on a desert aisle.
00:20:19
Speaker
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? Yes.
00:20:29
Speaker
Started my own. I talked to Jodi 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.
00:20:40
Speaker
And she's like, we'll help. So that was 2019 in the fall. Fast forward, March of 2020 was our first ah support group.
00:20:51
Speaker
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 was 21. twenty one And they ah 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. Wow. Yeah.
00:21:16
Speaker
pretty That's amazing. 80 people at the walk. Goodness gracious. Yes. 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 in a big group. But we were really were good about kind of keeping people in their pods at the time. yeah.
00:21:42
Speaker
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 it And with their help, it did not seem like it was a huge burden or did it seem overwhelming for you or?
00:22:00
Speaker
Effortless. It really is. The hardest part is really finding a place where you can have it. And i we have it at a cute little park close to me and you walk on a wooded path.
00:22:11
Speaker
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 will be the, this year will be the fifth annual walk.
00:22:27
Speaker
Wonderful. Oh, that's great. Now I know i met you at the ITP conference in Chicago. Yes. So have you, have you attended more than one or?
00:22:39
Speaker
That's the only one I've attended so far. So hoping to go more. Yeah. How did it make you feel? Did it change the way you looked at things? What, What was its impact on you?
00:22:51
Speaker
I think the biggest impact was was talking to the other patients and 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.
00:23:04
Speaker
So it's been really interesting to see you know where people are treated, at what 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. The information that I got from the...
00:23:20
Speaker
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 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.
00:23:43
Speaker
i think it's, it's, it's tough. And I've, I've learned how to meditate. And 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.
Coping Strategies and Mental Health
00:24:00
Speaker
That's wonderful. and it's And it's a shame that you had to go through all of this in order to learn how to relax and and keep stress at bay. I know at the Chicago conference, they had a psychologist there speaking about how the diagnosis of ITP can lead to PTSD, post-traumatic stress disorder. and And to be honest, that was eye-opening for me because i was diagnosed as a child. So I really did not know the difference.
00:24:39
Speaker
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.
00:24:55
Speaker
And i know as an adult, 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 how that type of stress of 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
00:25:28
Speaker
you You've gotten some help you know in order to keep things balanced in your life. Absolutely. And i early on started seeing a therapist whenever I needed to. And i at the time, I thought I was handling it all really well.
00:25:43
Speaker
And I had a friend, a dear friend who said, ah 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 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.
00:26:09
Speaker
I know we're kind of conditioned in our life to say, oh, everything's fine. Yeah. How are you? Oh, fine. my My dad used to say, when you'd say, oh, how are you? He'd say, no,
00:26:19
Speaker
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?
00:26:37
Speaker
That's a really good friend. You know, that's somebody that can be very supportive to you. Well, I applaud your involvement with, with fundraising. And I know for myself, I've,
00:26:49
Speaker
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 pump it up for platelets or a bowl-a-thon or whatever they want to do, what would you say?
00:27:08
Speaker
PDSA and Jodi have made it just, it's it's effortless. They take care of the t-shirts and they come and help with the registration. I gather friends and have have you know, some donations of food and things like that.
00:27:24
Speaker
But really, it's it kind of runs itself as know, I, 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.
00:27:37
Speaker
So I'm really careful at me about making sure that the focus is on raising money for PDSA. And I think it's so important. 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.
00:27:56
Speaker
If you were speaking to a newly diagnosed ITP patient, would you have any pearls of wisdom you'd want to share with them? Absolutely. I think the first thing is i I really learned early on to control what I can control.
00:28:12
Speaker
and kind of let the the rest go. 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.
00:28:22
Speaker
um I can control what I'm eating. So can control those things. Some of it's out of our control so that you're not feeling so so frustrated with with what's going on because it is a, it's such a scary time and you have more questions a lot of times than, than answers. So I think knowing what, 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,
Empowerment through Self-Advocacy
00:29:00
Speaker
what about this? And what if we tried this,
00:29:02
Speaker
dose I mean, I'm sure they see my name and they're like, oh, she's coming in today. What is she going to ask for today? ah You know, the other day I was in and 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?
00:29:19
Speaker
So I really think becoming a partner in your in your journey and in your diagnosis, I think it's is huge. I agree. I see my doctor every day.
00:29:30
Speaker
you know, he'll say, well, when do you want to see me next? And I go, uh, 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. Right. Um, so it, it is, 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,
00:29:58
Speaker
There's definitely times when you need to have lab lab work done more frequently. And then there's times when, what difference does it make? I mean, for me, it's like, my counts are low.
00:30:09
Speaker
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. So, um 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 if I'm too tired to do something.
00:30:33
Speaker
We need to not always look at the number and be focused on that. Not focus on it so strongly because the other the other component of that is how do you present yourself?
00:30:47
Speaker
Are you having symptoms? Are you bruising? Do you have petechiae? Have you been bleeding actively? Nosebleeds, whatever. Gums bleeding. So it's not just the number.
00:30:58
Speaker
It's both. It's how you present and how your numbers are. And you got to, those need to be both weighed equally. Right. With it. So, well, you've been terrific. Thank you so much for being so willing to share your story. 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-minded people and people going through the same experiences. There's nothing like it. So thank you again, Tracy. Thank you very much, Barbara.
00:31:42
Speaker
Hopefully I'll see you at the next conference. Sounds
Practical Tips for Living with ITP
00:31:44
Speaker
good. Thank you so much.
00:31:48
Speaker
Thank you.
00:31:54
Speaker
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.
00:32:10
Speaker
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.
00:32:23
Speaker
I remember when I was a little girl, my mother had a small little notebook and in it, she kept track of my vaccinations.
00:32:37
Speaker
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.
00:32:53
Speaker
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.
00:33:18
Speaker
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.
00:33:35
Speaker
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?
00:33:48
Speaker
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.
00:34:06
Speaker
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.
00:34:21
Speaker
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.
00:34:40
Speaker
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 or not, and they'll ask me a question about, well, when did you have rituximab?
00:34:57
Speaker
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 any response? Did my counts go up?
00:35:15
Speaker
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 ah 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 there is a difference between different brands.
00:35:45
Speaker
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.
00:36:02
Speaker
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.
Closing and Community Engagement
00:36:15
Speaker
And that is my lifestyle tip for today. Have a great day and I wish you happy, healthy platelets.
00:36:30
Speaker
Thanks for listening to the PDSA podcast, Bruised But Not Broken, Living with ITP, made possible by our presenting sponsor, Amgen.
00:36:41
Speaker
Special thanks to Gus Majorga for composing our theme music.
00:36:47
Speaker
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.
00:37:05
Speaker
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.
00:37:22
Speaker
Remember, you are not alone.