Health Topics

Returning to Diet After 20 Years

Andrew Schorr:

So diet for life.  Well, what if that hasn’t been you?  Imagine if you’d been off the diet, your Phe levels had gotten really much, much higher, and you’d been off the diet for 20 years, and then you decided to come back.  Well, I want you to meet someone like that because it’s really very inspiring and really what this program is all about.  Let’s meet Matt Arch.  Matt is 34 years old and really just a few months ago got back into care for his PKU and every day takes formula and juice box and I think 13 Kuvan pills that he takes every morning before breakfast.  He joins us from Villa Park, Illinois, 15 miles west of Chicago.  Matt is in the logistics business. 

So, Matt, what happened at about age 14?  You started kind of dropping off.  What was going on there where you didn’t continue managing your PKU? 

Matt:

Well, I guess what happens, you know, to all kids that age is they think they know everything and they lose interest in the things that they really don’t find interesting.  And also once you get into high school you’re really busy, you know, homework, there’s sports after school, and you don’t have time to watch your diet, watch what you’re eating, do blood tests, record everything.  You just kind of like lose track, and your parents aren’t there as much as they were when I was like seven or eight years old, and so they weren’t around as much to help me out.

Andrew Schorr:

So there you go, you go through the rest of your high school education, and you go to community college.  Now, many people go through community college in two years.  You did get a community college degree.  You were not on any kind of diet management for your PKU.  You did complete it, which is great, but how long did it take you? 

Matt:

It took me five years to get a two-year degree. 

Andrew Schorr:

So you would agree that the concentration, looking back on it, was hard. 

Matt:

Yes, definitely.  I had to have extra help from my teachers, and they looked out for me and I eventually passed.  I didn’t get very good grades but I passed.  I got my degree and right now I have an associate’s.

Andrew Schorr:

Right.  That’s certainly to be commended.  Now, let’s talk about the people who love you.  Certainly your parents, who helped you a lot as a child, managing PKU.  Drink this, have this, etc., watch what you eat, measuring Phe levels, all those sorts of things.  As an adult you got two I think really terrific younger sisters, Melissa and Michelle.  And I also know that going back maybe eight years or so you sort of had your ear to the ground that you were aware that management of PKU had changed.  Let’s talk about that for a minute.  You weren’t managing your diet.  You weren’t taking any medicine, but you were kind of monitoring things.  What did you notice a few years ago just from sort of the sidelines? 

Matt:

Yeah, I wasn’t following my diet and things, but I still knew what was going on in the PKU world.  I went to like a meeting eight years ago from Children’s, and it was basically that they update you on what’s going on in PKU, and I still got the newsletter for PKU of Illinois.  They kept mailing it to me, so I got to read about what was going on, and I learned about, you know, the formula wasn’t so bad anymore.  I mean, you can eat a candy bar and get your protein equivalent that you need instead of drinking your formula all the time.  They’ve got different options.  They have candy bars.  They have drink boxes so you don’t have to smell the formula as you’re drinking it.  You know, it’s in a drink box.  It’s more convenient.  You can take it with you.  If I had sports after school I could take a drink box with me and drink it at practice.

Andrew Schorr:

Right.  It was a medication in development at that point, so I think maybe even then because drugs were in clinical trials for so long.  So what happened last fall, so in November or so of 2009?  I mentioned your sisters have been so supportive.  What did Melissa do with you in November?  Tell us about that because it seems like it was a turning point. 

Matt:

Yeah, I found out that Children’s Memorial Hospital was having an adults with PKU, it was a meeting, and I figured I wanted to get back on diet so I wanted to attend.  And Melissa, my sister, said she would go with me and we would make a day out of it because if I remember correctly it was the same day as the Chicago Marathon and me and my sister Melissa were both volunteering for the marathon.  We were giving out water and Gatorade to the runners, so it worked out perfectly.  We went downtown, did that.  Right after that we went over to the meeting which was about two miles away from the marathon and took the kids, went to the nature museum, went to the meeting.  And Melissa, she was actually interested in learning more about PKU itself also.  I wanted get back on diet and everything, but she went to the meeting and afterwards she was amazed at how much has changed and how different it was.  And I think she was more excited than I was to get back active with PKU and everything.

Andrew Schorr:

Now, we should share just a little bit of the story just before that because you got to the point prior to that where you had decided you wanted to control your PKU and you went to your primary care doctor.  You wind up back at Children’s Memorial where you had gone as a kid as the first stop.  What was going on with you and your primary care doctor and kind of the detours you took? 

Matt:

Yeah, that was my first step to get back with diet is I went to my primary care physician, and he ran a blood test.  I had to go to the lab and drew blood and got the results, and he said, yeah, your level is high.  I’m like, yeah, I kind of knew that was going to happen, so now what?  He suggested I go to Elmhurst Hospital where they had dieticians and everything, and I went there and they really couldn’t help me out too much.  They had heard of PKU, but they really didn’t know too much about it as far as treating it.  So I talked to them for a while and I went back to my primary care physician.  He said, oh, okay. 

Then he suggested I go to Loyola Hospital, which is a very well known, very good hospital here in the Chicago area, and I made an appointment and everything, and I got a phone call from the clinic at Loyola, and they said, you know, I know PKU and everything but to tell you the truth we really can’t help you out, so if you’d like to come in we can have you in but we really can’t help you out too much, which I was happy that they at least called me instead of having me come in and, you know, not doing anything. 

But then I went back to my primary care physician and said, listen, I have to go to Children’s Hospital.  That’s where my treatment was when I was a kid.  I guess he had a problem with me going there because it was not within my HMO.  So I guess he also said that why do I want to go there.  It’s a children’s hospital.  You’re not a child.  Why do you want to go there?  I told him that’s where I go for my PKU.  He said, okay, well, we can’t do anything.  So I ended up just going there on my own, just finding out.

Andrew Schorr:

That’s what we call a powerful patient.  That’s what this is all about.  I think for adults, let’s face it, in the past the PKU experts have been at children’s hospitals, many of them, so it may have been where you went as a kid.  So that’s a big step for you to go.  But they do, more and more of them now, have adult PKU programs, and the folks we’re going to be talking to today, the experts on the medical provider side, are part of those in Chicago, as a matter of fact, and we’re going to meet them in just a second. 

I just want to get one more part of the story from you, Matt, and then we’ll talk to you some more.  You then started going to the clinic, just really just a few months ago now as we do this program, and established a plan, and we’re going to meet your dietician in just a second.  How are things going?  Do you notice a change, and do the sisters and your family notice a change in you? 

Matt:

Yeah, well, see, that’s the thing.  Truthfully, I don’t personally notice that much of a change.  Maybe I have a little more energy and I’m more outgoing with people.  Before I was really like afraid to talk to people, like meet people, and now I’m not that afraid to meet new people anymore and I’m more outgoing and talkative.  And my sisters, if you ask them, they would say, oh, my god, yes.  It’s like a new person.  I can sit with them at dinner and have a conversation with them, and he seems like he’s more into it.  My sisters believe that I’m more active in holding a conversation and that, and that’s what they’ve noticed and what I’ve noticed.  There’s a big change in my level.  When I first started, my level was over 20, and now my last reading was 10.5.

Andrew Schorr:

Wow.  Good you for you. 

Matt:

So it’s dropped dramatically.

Andrew Schorr:

Good for you.  Well, Matt, first of all, I think it takes a really special guy to make the commitment to take control of your health and now with a daily program and looking at doing it for life.  But that’s what we hope will happen with more people as we talk about this today.  We’re going to get back with you, but let’s meet one of the people who is really helping you through this.  And that is Maryam Naziri.  Maryam is a registered dietician and works as part of the adult PKU program at Children’s Memorial Hospital in Chicago. 

Maryam, so here comes Matt, attends one of your meetings and sort of gets with the program.  And he feels it makes some difference and his sisters say it makes a big difference.  This has got to make you feel good and also I guess really offer congratulations to Matt. 

Ms. Naziri:

Oh, most definitely, yes.  And we see that very commonly in a lot of our adult patients where the patients themselves might not be noticing the PKU-related symptoms, however their significant other or other members of the family are definitely noticing them, and sometimes with the family member urging them to come back to clinic or get back into treatment is a way that they get connected back into clinic.