DONA'S STORY EPISODE 2

SEARCHING FOR THE RIGHT TREATMENT

 

The views and opinions expressed in these interviews are those of the individuals and do not necessarily reflect the views, opinions, policies, or positions of Kiniksa Pharmaceuticals.

 

Dona:
When you're in the hospital there's so much going on. You're scared. You just want to go home. But what I would say, is that I went home, under the impression that I could resume normal activity and that I was cured. And that it was all done. The fluid's out. I thought the fluid was pericarditis. The fluid's out...You're all better.

 

Edy:

Dona is a 51 year old woman living with complicated pericarditis. Dona, in the previous episode you talked about your onset of symptoms and initial diagnosis in the emergency room, but I think it’d be helpful to learn more about your journey and your search for the right care. So, at what point did you go from, "I'm all better." To "Oh. Something else is going on."

 

Dona:

Interestingly, I went back to see my surgeon for just a routine follow-up visit.

 

Edy:

And this was the surgeon who had done the surgery to get the fluid out. Is that correct?

 

Dona:

Yes. Yes, and um. So, I went to see my surgeon about a week or so later. And he had me go for a chest x-ray first, and then right to his office. And I remember sitting in the waiting room, with my mom, waiting to get my chest x-ray. And I was saying to her, "It hurts again. And it feels the same. It's the same kind of pain. It really hurts. I'm sure the fluid's back." Again, thinking fluid was the pericarditis. So, I had a chest x-ray. It was fine. They didn't see anything. And then I went to see my surgeon, and I said to him, you know, "Will you please do an echo because I'm sure it's back. It hurts again." And he said, "Well, maybe it could still hurt because of what we did, and because of you having pericarditis." And I said, "Oh, please do one again. Because I'm sure it's back." And he did one again. Right then. He was really wonderful too. And he looked, he came in to look at it while they were doing it, so he could see. And he - I said, "Do you see it? Is the fluid back?" And he said, "More than trace amounts of fluid, is back. So, I'm gonna have you go back to your cardiologist and we're gonna talk about some new medication for you." And he consulted with my cardiologist, and they did put me on some new pain medication. So, I tried a couple different new pain medications.

 

Edy:

Did they work?

 

Dona:

You know, it'd work for like a couple days, and then the pain would come back. So, ultimately, I was put on a steroid. And the side-effects of the steroid were just unbearable for me.

 

Dona:

It helped with the pain. But I was so hyped up that I couldn't really function.

 

 

Dona: 

Talking a mile a minute. I couldn't stay on them.

 

Edy:

It sounds like the steroid regimen was difficult to tolerate. Is this the point when you felt like you needed to find a specialist for your pericarditis?

 

Dona:

Yeah.

 

Dona: [00:02:53] 

By a month later, I was trying to figure out who I might see for other treatment options for pericarditis.

 

Dona:

As I mentioned, I felt very well cared for. I felt like my surgeon was wonderful. He was very kind and understanding. I have had open heart surgery before, so I was super scared about having to have another heart surgery. He was great. And when I did go see him, a little while after my surgery, and was having chest pain again. He was responsive, he did the echo, which is great. But I think the issue is, there's not that many people that get pericarditis like this. Most people, as I'm learning, as I've learned, they get it and they respond to NSAIDs, and then it's over. So, I don't think they see it like I have.

 

Edy:

Can you talk more about that? That they don't see it.

 

Dona:

As I understand it, it was only when I had, an MRI at this world-renown hospital, could they actually see all the damage that was done…So it required, advanced imaging to see the damage.

 

Edy:

Can you tell me about that advanced imaging, for you, what the experience was like for you?

 

Dona:

Getting an MRI of your heart, with dye is, scary. They strap you into the table, they put a headset on you and, adjust your head so it doesn't move around. And then they take pictures for about a half an hour.

 

Dona:

So, I had a series of tests in this, center. All morning, I had tests. Blood work, imaging, the MRI. And then I met with the doctor, whose diagnosis was, complicated pericarditis.

 

Edy:

Did he explain what complicated pericarditis was? Did he outline it?

 

Dona:

So, this is one of the world-renowned experts in pericarditis.

 

Dona:

And they see patients from all around the world. And he told me that my case was among the worst that he had seen. So, on a scale of one to ten, he said it was a nine. And that means, according to him, that there's a lot of damage to the pericardium. So, it's kind of like scraping your knee. It's very raw and damaged. So, mine just is particularly raw and damaged. And it may take several years for me to fully recover.

 

Dona:

He spent forty-five minutes with us, talking about my case. And, you know, what I had, what to do from here. “This is what to expect. This is how I've seen other patients handle this. This is how you should be going forward.” You know, lots and lots of rest. And things like that.

 

Edy:

To build on this, can you explain more of what your care plan looks like today?

 

Dona:

So, I get blood work done every two weeks. And then, like full blood work done every three months. But, like I never really feel great. I currently give myself an injection every single day. It's a refrigerated injection. So, if I travel, I have to travel with a carry-on ice pack and my medication. I also take some oral medication. And I just don't feel great. I'm very tired. I need a nap every single day.

 

Edy:

I’m so sorry to hear this. That you’re still not feeling well after so long.

 

Edy:

As you think forward, what is your greatest hope? For yourself? Or for other people seeking treatment for complicated pericarditis?

 

Dona:

What I learned from my doctor is that, the care regimen isn't very good for someone with complicated pericarditis. The NSAIDs work great if you have an acute case, and it's not so bad. It'll respond and you'll be done. But if you do have a bad case, putting you on and off steroids, I understand from him is not good.

 

Dona:

So...my hope, um, for people that are living with pericarditis is that they receive treatment. Maybe they won't have recurrent pericarditis. If they already do, hopefully it won't come back again. And if they don't, hopefully they'll get through it the first time, in such a way, that...it doesn't come back.

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