Patient Stories

TAMMY: Hi, I’m Tammy and I’ve had chronic immune thrombocytopenia for over 15 years now.

CHUCK: And I’m Chuck, and I know it’s not a contest, but I’ve had it for 40 years. Tammy, you know what I brought today?

TAMMY: What?

CHUCK: Inspiring treatment possessions!

TAMMY: I brought some, too.

CHUCK: Really? I want to know about your symptoms, your diagnosis, and your treatment and see how they’re the same.

TAMMY: I want to hear about yours, too. And also, then see how they’re different.

CHUCK: That would be cool. Yeah. Before I found a chronic ITP treatment that worked for me, I had to give up my e-bike.

TAMMY: Yeah, I understand, I used to ride a bike and a motorcycle too, but when my counts got really low, it was just not safe for me to be on the motorcycle anymore.

CHUCK: Before I found out my counts were so low, I’d do 40 or 50 miles a day. I got to the point where I was too worried, and I didn’t ride any bike at all.

TAMMY: My item isn’t as much fun as yours, but it’s headphones. When I was first diagnosed, I just couldn’t do a whole lot. You get so tired that it’s really hard to do much of anything else but sit around. So, I would binge-watch movies and TV shows and things like that. But if I got tired of that, I would just throw on my headphones and listen to an audiobook.

CHUCK: Sometimes when your counts are low, that’s about all you can do.

TAMMY: It’s really frustrating. Especially because I really like being active. I’m not one to just sit around and do nothing. And what was your diagnosis experience like?

CHUCK: It was a long time ago, back when my fanny pack was still popular. I’d had some bruising. I’d had some bleeding gums. Went in for a blood test for a minor surgical procedure, and they told me my platelets were low, and it turned out to be chronic ITP because it didn’t go away on its own. So how about you?

TAMMY: Well, this deck of cards represents my diagnosis. When I was a kid, we used to play cards a lot. So family is really important to me. And they were around really to support me throughout a lot of this.

When I had my son. My platelets stayed the same. And then when I had my daughter, my platelets dropped. So, they were like, well, what’s going on here? Many years later, I had to have a hysterectomy and had to have a blood transfusion due to some complications. My body then decided to just destroy all of my platelets. And then my family actually came into town. The support from them really helped me a lot. That’s what this deck of cards represents. So, that’s what led me into having chronic ITP.

CHUCK: Holy cow. What happened next?

TAMMY: Well, that leads me into my next items.

CHUCK: What is all this?

TAMMY: Umm, that’s uh, just a bunch of stuff. Kind of represents all the treatment options I’ve been on. Steroids, immunosuppressants, IVIG—they just didn’t quite keep my counts up.

CHUCK: Yeah, I tried steroids years ago. And it just, it didn’t work for me. It didn’t work well enough. Man, I hated the way I felt.

TAMMY: So, since the steroids weren’t working for me, I tried some other options. There are a couple pills that I tried over the years that caused me to not be able to eat when I really necessarily wanted to, or would give food restrictions of some kind. Then I went on to an injection, and that one just stopped working for me too.

CHUCK: I had no idea there were that many options, you know? But I get the ups and downs. You know what I mean? My next item is a washer.

TAMMY: A tiny little washer?

CHUCK: A tiny little washer. Doctor found a spot about the size of this washer, maybe just a little smaller, on my lung. Needed to have surgery to get it checked out, removed. But my platelet count was too low. We tried the steroids again and the immunosuppressants, and we were absolutely convinced, my doctor and I, that we needed a long-term treatment. I should have been working together closer with my doctor for a long time. Back when I was wearing this.

TAMMY: Yep. Yeah, I got really lucky. I have a chronic ITP specialist in the area. We tried a lot early on, but if it wasn’t for continued research, going to the PDSA meetings, and talking to her, I wouldn’t have found Doptelet to treat my low blood platelet count when those other treatments just weren’t working well enough. Really is helpful to have that two-way communication with your doctor, talking about different options, different treatments and side effects that come along with the medications. So, when we talked about Doptelet, I found out that there were no food restrictions, which was really, really helpful. I could just eat what I wanted when I wanted to, just as long as I was taking it at a steady certain time of day.

CHUCK: That’d be really important to me too. I do like to eat.

TAMMY: So, this is my next item. Remember how I said I couldn’t ride the motorcycle anymore? But now with Doptelet, my platelet counts have been in a target range for a few years now. So, now I can go off roading.

CHUCK: That rules.

TAMMY: It’s really nice because even if I’m out driving with my husband and we get stuck somewhere. I still have my medication, and I can take it when I need to.

CHUCK: It really is about having good people in your corner, isn’t it? Let’s do the last one together.

TAMMY: That sounds like fun!

CHUCK: Of course, we both brought photos.

TAMMY: This is what it’s all about for me. Friends, family, coworkers. Ever since Doptelet was able to keep me in my goal range, it’s just been an incredible feeling. And it’s been great to be able to share it with all of them.

CHUCK: That’s really sweet, and I get it. These are the folks who taught me about what community means. My community now includes my doctor. And since my doctor introduced me to Doptelet, there have been many changes in my life. Now I’m able to do all kinds of things. In fact, I get together with my e-bike as often as I possibly can.

TAMMY: So, what does the future have in store for you?

CHUCK: I don’t know, but I am happy that my platelet counts within my goal range.

TAMMY: You’ve got to stay positive.

CHUCK: And lifted.

TAMMY: Well, thank you for watching us go through our inspiring treatment possessions.

CHUCK: We hope you’ve enjoyed it as much as we have.

VO: Serious side effects, including blood clots, may occur. Tell your doctor about any swelling, pain or leg tenderness. Fast heartbeat, shortness of breath, chest or stomach pains or tenderness. Common side effects include headache, joint pain, fatigue, bleeding gums, bruising, petechiae, nosebleed, upper respiratory infection, and runny nose. Tell your doctor if you are breastfeeding, pregnant, or planning to be.