DONA'S STORY EPISODE 3

THE IMPACT OF RECURRENT PERICARDITIS

 

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:

You know, there's this fear I think when you are trying to rest and take care of yourself, or you physically have to rest and take care of yourself, because you're not...you're just not yourself. You don't have the stamina to face the day like a healthy person.

 

Dona:

So, when you're the man down, you just feel like you might be letting other people down.

 

Edy:

I’m speaking with Dona, a 51-year-old woman living with complicated pericarditis. Dona, we’ve talked about your journey to diagnosis and seeking the proper care. But can you tell us more about the impact complicated pericarditis has had on your life?

 

Dona:

Sure. I have been a career woman for the last, I guess, thirty-plus years, since I graduated from college in 1991. I currently work, and I have worked for about the last fifteen years in the wealth management field. I lived in Portland, Oregon for a long time, but I've recently moved back to where I was born, which is Upstate New York. And I work for a major financial institution here in the wealth management space.

 

Edy:

When you left the doctor’s office with that initial diagnosis of complicated pericarditis, did you have any idea how it would affect your everyday life?

 

Dona:

When I left, I had a lot of questions about rest. What does rest mean? He said, "You should just go sit on the side of Lake George and rest. Recover. Get better." I'm like, "What does that mean?” So, yeah, lots of questions. Like, how am I going to adjust my lifestyle? And how will I know if I'm getting better?

 

Edy:

And were you - were you fearful? Were you afraid?

 

Dona:

I don't recall really being afraid as much as I was uncertain of what's going to happen next. And what will the treatment be. I was very surprised to hear that it may take several years to recover. I just never heard of anyone having any heart issue that took that long to recover.

 

Edy:

So, this picture that you had in your mind when you first left the hospital of “I’m totally better” to when you leave the specialists’ office a few months later knowing “This could take a couple of years.” Can you tell me more about this?

 

Dona:

Sure. Well, it's life changing. So, for me when I left the hospital, I thought I could start to exercise again. I used to exercise every morning before going to work. I have a treadmill, and I have some weights, and tapes that I like to use. And I had taken a break, of course, because I wasn't feeling well. But I thought I could start that up again. And I was struggling starting it up again. And I thought, "Wow. Why...You know, what's wrong with me? Why can't I start working out again? They told me I'm fine." I'd gone back to work. And I was running around, and I was tired. And I thought, "Shoot. You know, why am I so tired?" And then when I went and got the diagnosis that it could take years to recover, you know, initially I was so shocked. And I thought, "Oh my gosh. I can't do anything. I can't work out. I can't...do any fun things."

 

Edy:

That “I can’t.” Describe more of what you mean when you say, “I can’t.”

 

Dona:

Well, I think it's been so long for me now. I've been suffering with this for a year. And, I've learned to say right now, I can't do that. Because I don't wanna potentially have to have another open heart surgery. So, what I do do though is I wear a device so I can monitor my steps every day. And I walk my dog a few times a day. Like long walks.

 

Dona:

But I'm still only doing like five to seven thousand steps a day. So, nothing major. I also monitor my heart rate on this device. So that I make sure I'm keeping it under a hundred, and that my average daily heart rate stays between eighty and ninety.

 

Edy:

This exercise that you're talking about, did your doctors give you guidance about the rate?

 

Dona:

Yes. He said, "You have to keep your heart rate under a hundred. You don't want your average daily heart rate to go over between eighty and ninety. And the only activity I clear you to do is walk your dog." So, I do walk my dog. But I - I saunter. I mean, I don't power walk anymore. I just walk the dog.

 

Edy:

How about work? How does this exhaustion and not feeling well affect your ability to concentrate at work?

 

Dona:

Right. Well, I ultimately, um, had to take a leave from work. Because, I was just too exhausted to work a full day. And, to really fully participate in everything. In conference calls, in meetings and things like that. So, I took a work leave. And I'm - I've taken another work leave. So, I'm on leave right now.

 

Edy:

So, you’re on a second leave of absence from work right now?

 

Dona:

When I went back in January, I was disappointed that I wasn't all better. I hoped that they would say, you know, "You're almost better. Almost a hundred percent."

 

Edy:

And what did they say?

 

Dona:

"You're like halfway there." [laughs] “So, it does look better. But it's not. It's not better. It's not cured.”

 

Dona:

So, in January, I made a difficult decision. Where it was, I'm going to take six months off. Not work at all. I had been working part-time in the fall. I had taken about eight weeks off in the summer. He said, "Rest." I said, "I'll rest for eight weeks. That'll be great. Then I'll go back part-time. And then I'll go back to the clinic and see how I'm doing." So, I thought I had maybe rested enough. But I did know, even working a half-day, that was all I could handle. So, when I went back in January and they're like, "Yeah. You're about halfway there." I made the decision to take six months off, not work at all, and really focus on getting better.

 

Edy:

Shifting to the future. What’s the greatest hope you have in terms of your condition? And how you feel?

 

Dona:

In my condition? My greatest hope is, my number one greatest hope, is that I don't have to have open heart surgery, to have a pericardiectomy. Because the lining is so thick and scar tissued, or damaged, or something that it-they're worried it's going to constrict my heart. So, my biggest accomplishment will be not having to have that. And then, secondarily, if I had a number two biggest accomplishment, it would be, to get off daily medication and daily injection. And, start to resume some normal activity. You know, I had great aspirations before this happened that I was going to join my boyfriend's running club. He and two other couples, that we know, they're all in this-we know a lot of people in the running club, but they're our close friends. And they've been pushing me to be on their team. Even if I just do my best.

 

Edy:

To summarize, if you could pinpoint one thing that changed the most...could you pinpoint it?

 

Dona:

Yes. It would be stamina. [laughs] Stamina. Like being able to, get up. We-I get up early in the morning with my little posse. So, we're up early, but I, like I said, I require a nap every day. And I definitely feel myself fade. Where, I don't have the stamina to make it through the whole day. So, being tired and stamina.

 

Edy:

And the last question. What's next for you?

 

Dona:

[laughs] I don't know. Like, just getting healthy again. So, once I find out that I'm over the hump of this pericarditis, getting my overall health back. Getting back and, getting fit again. And...feeling vibrant again.

 

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