DONA’S STORY EPISODE 1

JOURNEY TO DIAGNOSIS 

 

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:

I had a chest x-ray. I was told that, basically, they didn't really see anything in the chest x-ray of concern. Therefore, it must be something that's muscular, skeletal, which I took to mean, I pulled a muscle sort of thing. But when I was in the hospital, they did an echocardiogram, and immediately everything changed...my direction of care changed dramatically.

 

Dona:

My name is Dona. I'm fifty-one-years-old. I have complicated pericarditis, and this is how pericarditis has changed my life.

 

Edy:

When we think about your disease history, and getting this, you know, diagnosis. Can you...illuminate us as to what happened with the onset of symptoms?

 

Dona:

So, for me, in April of last year, I had a cold that came on really fast and lasted for just a couple days. It felt like a very severe cold. And then it went away. And a few days later, I had a very sore back. I had a lot of pain in my back and some pain in my chest. So, I contacted my primary care doctor, and she sent me for a chest x-ray. And the chest x-ray came back clear. So, I thought everything was fine and that I had just hurt my back. A few days later, I was driving home from a meeting in Albany, New York. It's about a forty-five minute drive for me to get home. And I lost vision in one of my eyes for a really short period of time, but I definitely lost vision.

 

Edy:

So, when you lost that vision, I can't even imagine what that must have been like.

 

Dona:

Just in one eye. It was very scary, yes. I lost vision and then it came back. Kind of like a curtain. Within, I would say, five minutes. I called my mom and said, "I had the craziest thing happen. I'm driving home from a meeting and, I lost vision in one eye." So, she googled it and she called me back, and she said, "You better go to the emergency room."

 

Dona:

I went to the local emergency room and shared with them what happened. And that I was also having a lot of chest and back pain. They were immediately concerned with the loss of vision, because evidently that's a sign of a potential stroke. So, they were very concerned that I might have had a stroke. They did some testing and then sent me to a larger hospital with a stroke facility where they did more testing for the stroke, and I continued to complain that I had chest and back pain. But, they weren't as worried about that because of potentially having a stroke.

 

 

Edy:

So, you lose your vision. Which turns out to be unrelated to your symptoms of pericarditis. When does your care team shift focus to your heart?

 

Dona:

Sure. When I was in the hospital, and under watch in the neurological ICU. They did an echocardiogram, because I was still having a lot of chest pain. And immediately everything changed. So, my direction of care changed dramatically. So, I had been under watch to make sure I didn't have a stroke. It appears that I did not have a stroke. Once they did the echocardiogram, several other doctors came in and I was whisked off for more tests. And what Larry tells me is that - that's my partner - they told him that I was in cardiac tamponade. Which, as I understand it, means that, there is substantial fluid around your heart. And it's effecting the way the heart is beating. And, as I understand it, you can die from cardiac tamponade. It can stop your heart from beating. So, I was scheduled for emergency surgery that night to remove the fluid from around my heart.

 

Edy:

And of all of these things that happened...what’s the timeline here?

 

Dona:

I probably went to see my internist on a Wednesday-ish. I remember that it was a Friday night when she called me with the results. Friday evening. Um. So, then we had the weekend. Monday, Tuesday, Wednesday I was in a meeting and that's when I, um, I was in a lot - I was in a lot of pain all those days, but by Wednesday I was in a really lot of pain.

 

Edy:

And during this time, imagining the kind of pain and agitation, emotional agitation, that you must have been under at that time. I'm wondering also, did they give you anything to help you with the pain?

 

Dona:

That's a great question. I don't really remember. It was so dramatic and a little traumatic. I was whisked off in an ambulance. They thought maybe I had a stroke, so I had a fellow in the back of the ambulance with me. I was hooked up to all kinds of machines. I don't know if I had medication too. But I just do remember, I was scared, I was non-communicative.

 

Edy:

So, through all of this, at what point did they finally say, "You have pericarditis.” Can you tell me about that?

 

Dona:

Yep. I was admitted to the hospital probably on Thursday morning. I think I spent the, you know, the whole night in the ER by the time everything settled. So, once I was admitted they did an echo. And at that time, they found that there was a lot of fluid in my pericardium, and that it would need to be drained. So, Thursday morning.

 

Edy:

Okay. Thursday morning. Did a doctor come in and say to you, “This is - you've got pericarditis?”

 

Dona:

I don't even remember hearing the word pericarditis. I remember hearing words like cardiac tamponade, and pericardial effusion, and pericardial window surgery.

 

 

Dona:

It was all new language. I didn't know what it was. But what I did learn was, they were going to drain the fluid. They would test it to see what caused that fluid to go in there anyway. To see if it was, um, an autoimmune disorder. If I had cancer. There's all kinds of things that the fluid could test positive for. When I came out of surgery, I had a drainage tube in me and a little, drainage container where it would collect the fluid. And it would measure the fluid. So, they could see how much was draining each day. So, actually I thought pericarditis was the fluid - having fluid around your heart. I didn't know that there could be damage to the pericardium. I didn't quite understand. All new terminology. All new stuff. When I went home from the hospital, after being in the hospital for about a week, and having all my...the fluids tested, they determined that they thought it to be a viral reason. The fact that I got a cold and then developed pericarditis from a cold. They thought the source of my pericarditis was viral.

 

Edy:

So, you’re in the hospital for a week. You leave with a diagnosis of pericarditis. What were you feeling? What were you thinking?

 

Dona:

They took really good care of me. They, um, put me in cardiac ICU. I had a nurse to myself, where they were checking on me all the time. They really, they were so kind to me and so great.

 

Dona:

But I went home not quite knowing what I was dealing with. I thought I was cured.

 

Dona:

Maybe I should have known better. But I didn't know...I went home thinking I was all better. 

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