Living Life to the Fullest with Polycythemia Vera

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Topics include: Patient Stories

At a recent MPN Voice event in London, Louise from Surrey in the southeast of England discusses being diagnosed with polycythemia vera after having symptoms for some time. She goes on to talk about life after her diagnosis and how she lives well today.

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Transcript

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you. 

Andrew Schorr:

Hello, Andrew Schorr on location in London; we’re talking about polycythemia vera with a woman who knows all too well—that’s Louise Simpson who is from Surrey.  Thank you for being with us, Louise.

Louise Simpson:

Thank you.

Andrew Schorr:                  

Louise works in the health and fitness area, health and wellness area?

Louise Simpson:

Health and wellness.

Andrew Schorr:                  

Right.  She’s very a very fit woman but yet we go back—you were diagnosed with polycythemia vera about six years ago.

Louise Simpson:

Yes.

Andrew Schorr:                  

But let’s go back three, four, five years before that. What symptoms were you having and how did they affect you? 

Louise Simpson:

I had various symptoms but I think the main one that really sticks in my mind was the migraines.  They were deliberating, so literally if I wasn’t having a migraine, I was either paranoid about getting one, or I’d have what I call the migraine hangover.  So I’d literally feel very awful for a few days, and then I’d, sort of, repeat that pattern and get another migraine.  And then it would just continue like that.

Andrew Schorr:                  

How can you work like that? 

Louise Simpson:

It was very difficult and it did actually affect my social life and my work life.  And, yes, it was really hard, really hard.

Andrew Schorr:                  

So you're walking around either in pain or not walking around, in bed maybe, or worried about pain coming on?

Louise Simpson:

Yes, I literally cut out so many food groups and tried so many different things to try and actually find out what was causing the migraines.  And little did I know what was really causing them.  And I really did try everything to try and, kind of, find out what was the cause because for me I believed that the migraines were just the symptom, but no one else was like listening to me.  So it was a very frustrating time, and I was really very unhappy and very unwell.

Andrew Schorr:                  

Okay, so finally a doctor says—looks at it more carefully and you're red cells and says polycythaemia vera, which you’d never heard of?

Louise Simpson: 

I asked them to write it down, I went back to work, and I Googled it. I called him, he said, “You've Googled it, you've found lots of stuff on the Internet?”  I said, “Actually, I haven’t found that much, I would like to, you know, find out what the next steps are.” And he referred me to a hematologist, but he was the only person who actually referred me to a hematologist.   And I look back at my medical history and nobody ever picked it up, not even hospitals, so…

Andrew Schorr:                  

Finally getting to the right doctor?

Louise Simpson:

I honestly—if he hadn’t left the surgery after I actually got the diagnosis, I would have gone and hugged him.

Andrew Schorr:                  

Yes, well…

Louise Simpson:

I wish I could thank him.

Andrew Schorr:                  

…so finding the right doctor, getting a diagnosis, in this case of a rare condition, made all the difference.  So, okay, treatment that many people have had for PV is basically getting some blood out periodically.  And you needed that fairly frequently for a while? 

Louise Simpson:

Yes definitely. 

Andrew Schorr:                  

How often?

Louise Simpson:

It was every week for a while then every two weeks, then every three weeks and then—until obviously I got below my target. 

Andrew Schorr:                  

Okay, and where are you now? 

Louise Simpson:

My last vinisection was actually a mini-vini, as I like to call it, because they didn’t want to take too much.  My hemoglobin was okay, but me ferritin was very low and I’m still, sort of, running and everything.  So we just did a 250 ml in May and before that it was actually July 2014.

Andrew Schorr:                  

So how long was that?

Louise Simpson:

Nine months.

Andrew Schorr:

Nine months, nothing and then you take a baby aspirin?

Louise Simpson: I

Take 75 milligrams of aspirin daily.

Andrew Schorr:                  

Okay, all right.  How are you feeling?

Louise Simpson:

Brilliant. 

Andrew Schorr:                  

Okay, so here we are at this event, you're speaking to people here. What is your message to people about PV and life going on? 

Louise Simpson:

I think obviously—my message is generic because obviously it has to be, but all I would say is obviously everybody is unique.  So I’m not saying what works for one person is going to work for everybody.  But would say that getting the correct diagnosis, if you need to, get a second opinion, because that really changed my life.  And really just, kind of, being aware and, kind of, being an expert of your own condition, because it’s up to you to manage it, you can't just rely on, you know, the doctors to do it all for you.

I do think you need to take responsibility and I think, you know, there is life after PV.  I actually feel fitter and healthier now and [am] running much further distances than I ever did when I was a child even.  So, you know, I’ve done a half-marathon, I’m doing 10Ks.  So at the end of the day, you know, I want to be that positive person that can show you that actually, you know—I know I’m 41 and still quite young, but it isn't the end.  So people need to be aware that there [are] positive things that can happen. 

Andrew Schorr:                  

And here’s a woman who is living with what is described as a cancer; that’s a very scary word, and you are doing well and moving on.

Louise Simpson:

I’ve actually also had bladder cancer last year as well.  So I’ve, kind of—I’m either unfortunate or very fortunate, I don’t know which way to look at it.  But I actually think that, you know, I always see it as a positive, I’ve learned a lot.  but yes, I got diagnosed with bladder cancer last year, so I’m definitely, kind of, up there with the C word, which, I think, you know is one of those things, it’s happening a lot more.  And people need to be aware and not afraid of it, so…

Andrew Schorr:                  

…all right, well, thank you so much for inspiring…

Louise Simpson:

You're welcome.

Andrew Schorr:                  

... inspiring others.  On location in London at the MPN Voice for people around the UK but also around the world, and we are happy to be a part of it with Louise Simpson.  All the best to you. 

Louise Simpson:

Thank you so much.  Thank you.

Andrew Schorr:  

I’m Andrew Schorr; remember, knowledge can be the best medicine of all.

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you. 

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Page last updated on September 4, 2015