Skip to Navigation Skip to Search Skip to Content
Search All Centers

Lorraine’s PV Story: How I Got Better Care by Advocating for Myself

Read Transcript Download/Print Transcript

Published on November 2, 2016

Can self-advocacy increase your odds for better health care? Meet Lorraine, mother of 12, who learned she had polycythemia vera (PV) after a routine checkup. She was referred to a local hematologist who downplayed her diagnosis and wanted to start her on iron infusions—Lorraine and her husband, Matt insisted on a second opinion from a specialist. She is now receiving world-class care from Dr. Srdan Verstovsek at MD Anderson Cancer Center, which is four hours from her home. Dr. Verstovsek works closely with her local doctors to help manage her care from afar. Lorraine is doing well and is making plans for herself and for her family’s future.

This town meeting was sponsored by the Patient Empowerment Network, which received an educational grant from Incyte Corporation. It was produced by Patient Power in partnership with The University of Texas MD Anderson Cancer Center. 

Featuring

Sponsors

Patient Empowerment Network

You might also like

Transcript | Lorraine’s PV Story: How I Got Better Care by Advocating for Myself

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.

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 and welcome to Patient Power.  I'm Andrew Schorr. 

Well, imagine you have 12 children ages 3 to 24, live in a small town, and you're a busy person, as you can imagine, and then you were told a year ago you were diagnosed with something you've never heard of, PV, polycythemia vera.  Well, meet Lorraine Patterson from Wimberley, Texas. 

Lorraine:

Yes. 

Andrew Schorr:

Right.  So what was PV?  What led to this, and I'm sure you were shocked and saying, huh?  

Lorraine:

Yes.  I just had gone to my gynecologist for routine labs, and she called afterwards to let me know that my hematocrit was high, didn't know why.  I'd never even heard of hematocrit.  So she said she was referring me to a local hematologist for further testing.  So I went to him and he said, “You're young, you're healthy, you have nothing to worry about.  We'll do some extra tests, I'm sure we'll figure out what's going on, but don't be concerned.” 

And then called me back in two weeks later, told me I had this blood disorder called polycythemia vera, told me it was no big deal.  It just can happen out of nowhere.  They don't have any knowledge of what causes it.  It can be easily managed, not to be concerned but to—he suggested I do some research online… 

Andrew Schorr:

And then you see…

Lorraine:

..suggested I go to Mayo Clinic. 

Andrew Schorr:

…cancer. 

Lorraine:

Yes, exactly.  

Andrew Schorr:

Terrifying. 

Lorraine:

He said go to the Mayo Clinic website, and that's the first thing I saw is that it's a rare blood cancer.  So I can recall sitting there going, wait, this is cancer?  What am I supposed to do?  It was on a Friday night that I found that out, and Monday morning my husband was calling MD Anderson to try to get me set up there.  

Andrew Schorr:

Right.  So big cancer center in your state, even though it's quite a ways away.  Now, you had a local hematologist, so it's natural to say, well, I want to go to MD Anderson, and I need my records, and we'd need to all work together.  You had some resistance there, didn't you? 

Lorraine:

Yes.  They did not want to release my records to MD Anderson.  My local hematologist said that people who have PV do not go to MD Anderson.  And so my husband said, “Well, my wife is going to MD Anderson, and I will get her records.”  So he went to our general practitioner, had the records sent there, who then sent the records over to MD Anderson. 

And the local hematologist was not very happy about things.  And he and Dr. V. had had some phone conversations of disagreement, and our local hematologist was feeling like he was an expert in this, and we were feeling like, of course, Dr. V. at MD Anderson was the expert who we really trusted.  

Andrew Schorr:

Mm?hmm.  Let's talk about that because people are watching from all over the world.  So if someone goes to a local doctor, hematologist, who has to cover lots of different conditions…

Lorraine:

Yes. 

Andrew Schorr:

…and now you're diagnosed with something pretty rare, what would you say to these people as far as seeking at least a second opinion from a specialist and pushing for that, because it's your right?

Lorraine:

Yes.  I would just highly recommend it, because the protocol with the local hematologist and with Dr. V. as very different.  And the local hematologist was wanting to give me iron, because I was very anemic, which was then going to raise my hematocrit and make things worse and was really pushing for that.  And I didn't even have my first treatment with the local hematologist, because I had already researched online and saw PV patients should not take iron in most cases.  

And so we felt like, okay, Dr. V. sees multiple PV patients a week, whereas the local hematologist might see one per year, maybe, and so we just felt like Dr. V. is going to have a lot better recommendations and a lot more knowledge about treating it, and we could trust what he would say over what someone who doesn't have a lot of experience with it would say.  

Andrew Schorr:

Right.  Right.  And there are resources, I'll just tell our audience, the MPN Research Foundation, there are a number of groups, Patient Power, where you can identify who the specialists are like Dr. Verstovsek here at MD Anderson or wherever you may be in the world so that you have somebody who really sees a lot of patients, has the expertise.  

Now, I mentioned at the outset, you have 12 children.  We should tell people you have three biologic, other children, many with special needs, that's your devotion. 

Lorraine:

Yes. 

Andrew Schorr:

And so that takes energy.  How are you doing with all that? 

Lorraine:

Well, pushing through, because there are not a lot of options.  We do have quite a few people helping us, and our older children who do not have special needs, our biological children and two of the older adopted children, are able to help out, and everybody has pitched in.  So where mom was doing everything before, just blessed to have lots of family members and then other helpers coming in and helping take up where mom can't do it.  So we're a team, and without that team I do not know what we would be doing. 

Andrew Schorr:

Well, it's certainly a blessing to these children that you—you have help but that you and Matt are doing this on your ranch of about 28 acres, I think there. 

Lorraine:

Yes. 

Andrew Schorr:

So what's your outlook for the future?  So you were—looked it up, and it said cancer, diagnosis, you never heard of it.  You have the right providers now. 

Lorraine:

Yes. 

Andrew Schorr:

So you feel maybe more in control, but you're a young woman, and you have all these mouths to feed. 

Lorraine:

Yes.  

Andrew Schorr:

How do you feel about the future, even with a PV diagnosis? 

Lorraine:

Uncertain.  We know—we've started to talk more about, well, what is the future going to look like for these children who will always be with us? And we don't know who is going to outlive who here, but our 18-year-old daughter has said that she wants to take on the responsibility of the children who would not be able to live independently, and so that gives me just peace knowing, okay, there is a plan. 

And not knowing what—even if I live a long life, what my energy level would be like, because the fatigue is already so much at 45 that I'm thinking, gosh, sometimes I feel like I'm 85. And so I can't imagine what I will feel like when I am much older.  And just knowing I do have people who come alongside us and help us with all of this, but definitely things are different than what they were before this diagnosis. 

Andrew Schorr:

But, Lorraine, things could get better.  

Lorraine:

Yes.  

Andrew Schorr:

I mean, here at MD Anderson, where we're doing this interview, at other research centers around the world, you know they're working on it.  

Lorraine:

Yes. 

Andrew Schorr:

So there could be something to improve your situation. 

Lorraine:

Most definitely, and I'm looking forward to that, and I'm believing yes, there will be some…

Andrew Schorr:

…how about a cure? 

Lorraine:

Yes, that would be awesome, yeah. 

Andrew Schorr:

Well, Lorraine, thank you so much for all you to with your family and pushing on, and I'm so glad that you and your husband Matt pushed also for you to get the right care that we all need and deserve.  All the best to you.  

Lorraine:

Thank you. 

Andrew Schorr:

Andrew Schorr, Lorraine, busy mother in spite of PV and with a lot of hope for the future. 

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. 

You might also like