Tips for Coping With a New Diagnosis: Living Well With MPNs

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Topics include: Living Well

Being diagnosed with a rare condition like an MPN can be overwhelming. MPN patients Andi and David share their perspective on coping with a new diagnosis and how their lifestyle changed. Dr. Brady Stein and Physician Assistant Lindsey Kalhagen discuss their approach to managing emotional issues with patients, specifically related to depression. Tune in to learn more.

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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. 

Susan Leclair:   

So I’d like to start off first with Andi or David, if they want to start. Early on in the diagnosis, who did you tell? How did you tell? How did you feel about it?  Was there depression or at least emotional upset as Dr. Stein mentioned earlier?

Andi Malitz:       

I think, in the beginning, when I first found out about the ET, it took me a little while to absorb it.  I had never heard of it. I started asking family members did you ever hear of this?

It’s not hereditary, but when you hear genetic, you start saying maybe this person really didn’t die of a heart attack. Maybe they died of a heart attack because they had ET.  We have a lot of heart issues in our family history.  I started to—what I did is I made copies of information to give to family members. And I emailed family members information because I knew that, if I had never heard of this, nobody had ever heard of this. 

And ironically, the first thing was talking to my family, my parents, my boyfriend, my sisters, my brothers, immediate family and just trying to explain what it is.  And I think, again, because, unlike—I know in your situation, I looked okay. I felt okay. 

There was nothing happening. I didn’t have to go to the hospital. I didn’t need to have surgery. It was kind of harder to get people to understand what it was, because nothing changed in me.  It was something that I kind of personally had to deal with.  So really, I really didn’t talk to people about it because I look the same, I feel the same, I am the same. So for me, probably not as much of a hardship. 

Susan Leclair:     

Okay. David, what about you?

David Shobrook:               

Yeah. I had to change my lifestyle a little bit, because I was pretty active.  I was going to the gym virtually every day. I used to cycle to work back in London.  I cut all that out for a few months.  And in terms of understanding what I had, I didn’t really understand what I had. As I said earlier, I just read what I knew in the medical dictionaries, but they’re not very clear on what’s going on. 

My doctor, at the time, I think skirted around some of the issues that I wanted to know.  But gradually, my life got back to normal over a few months after the lull, the change. And I learned to change my life to fit my situation. 

Susan Leclair:     

Lindsey, is that an important thing to get people to live normally or as close to normally after this? I keep thinking of these diagnoses as a bolt from the blue. It’s not like a broken leg.  You all of a sudden don’t wake up one morning and you can’t walk on that leg.  These are very subtle, in many instances, changes.  So when they’re given a diagnosis, there’s obviously a psychological process that goes through.

How do you get them through that? Are there tricks of the trade to deal with that?

Lindsey Kalhagen:             

I feel like, again, information, making sure they’re provided information, being able to discuss our experience from a clinical standpoint that we’ve had patients living with these diseases for decades and talking about what to expect and to ask questions.  And that, yes, it’s a new disease. But, again, as they both said, making it that your disease doesn’t define you. It’s a part of your life, but to try to keep it going as you want it to be and quality of life being most important. 

Susan Leclair:     

Dr. Stein, you mentioned—well, you alluded to a possible depression issue.  And everyone is going to respond to these things differently.  How should a family member maybe or the person, what should they be looking for that helps them distinguish between, if you can even do this, shock, sadness and depression?

Dr. Stein:               

That’s a very good question.  And that can be a very difficult distinction.  We talked earlier about trying to distinguish the physical and the emotional that’s related to the disease and then trying to figure out when there’s a superimposed illness.  And so we can take depression. And what we found is there are things that we may recognize based on body language during the visits, especially for people we’ve had relationships with where we’ve seen them over and over, and we can tell a change.  We get a lot of clues from the caregiver.

And sometimes, we’ll ask a question, and in a subtle way, we’ll look to the caregiver, because we might get body language or non-verbal communication that suggests something really is going on.

Depression is difficult.  But we learn, in our internal medicine training, about certain questions to ask. And one of them is a term called anhedonia, which means, basically, you’ve lost enjoyment for things that were previously enjoyable. So trying to ask a number of different questions to screen for it. And we need the help of the internists or perhaps the psychiatrists to help manage the depression.       

But I would say that, in many cases, we’re the first to recognize, because we may have the most frequent interactions, especially initially.  Or if the disease is progressing or changing, and we’re changing our therapy, or there’s a clinical trial, we may have very frequent interactions.  So we may be at the front line in terms of recognizing some of these symptoms.

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 15, 2015