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I'm Aware That I'm Rare: the phaware® podcast

A new podcast series devoted to raising global pulmonary hypertension awareness with dynamic stories from PH patients, caregivers and medical professionals from around the world. New Episodes every Monday & Thursday!

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Mary Jan Hicks - phaware® interview 277

Aug 30, 2019

Mary Jan Hicks discusses her daughter Meaghan's PH diagnosis and road to double-lung & heart transplant.

My name is Mary Jan Hicks. I live in Gig Harbor, Washington. My connection to pulmonary hypertension is as a caregiver for my daughter, Meaghan Hicks.

We were stationed in Heidelberg, Germany. Meaghan went in for a test, and the pediatric cardiologist that did the test told us that she was good, she was healthy, and sent us home. Then he called and told me that he wasn't sure, that he thought that she may have pulmonary hypertension. That was in 1994.

They didn't have a means to care for Meaghan where we were, so she and I were medevaced out and we were sent to Walter Reed. They could not care for her there, so then we were sent to Robyn Barst at Columbia Presbyterian Hospital. That's where we met Robyn, and that's where Meaghan's pulmonary care began.

Meaghan was fortunate enough to be able to stay on oral meds for quite a while. I was obviously very protective. Meaghan had just turned 13, and by the time she went into high school, her friends were wanting her to go places with them and ride in their car. I didn't want her to leave the house without a raincoat. I had a wise individual tell me that I was living my life waiting for the other shoe to drop. A light bulb came on for me, and I realized that whatever time I had with Meaghan, I needed to use it to the best of our abilities and not spend it in a worry mode.

That's when I started letting her kind of take the reins and be responsible and take a back seat and let her become the person who, when she went off to college, she had to be on top of her meds. She had to send in for the refills. I monitored, but as she got old enough and as she learned, she was a very responsible young lady. She wanted the best quality of life for herself, and so whatever that meant she had to do, she was ready to do it. And we were her support.

Dr. Barst, on one of our earliest visits once Meaghan was on meds, she said, "At some point in time, I'm just going to tell you, she's going to refuse to take them. They all do. I'm just giving you a heads-up so that you can prepare for yourself for when that happens what you're going to do." Jesse, her younger sister, at one point in time turned to Meaghan and said, "I just don't know how you can take all those pills. I just wouldn't do it." And Meaghan said, "I take all these pills because, when I do, I feel better." That's when I knew I was not going to have to worry about it.

Meaghan and Dr. Barst struck a bargain that Dr. Barst would not take Meaghan down the road of transplant until it was absolutely necessary. With that in place, that's what happened. Meaghan did struggle with it. She had support by way of psychologists and doctors and family, and she talked to other people. She just decided, "If this is going to allow me to stay among my loved ones longer, then that's what I will do."

Transplant initially started out [with] what they called a dry run, where they thought they had compatible lungs. We flew to Stanford, but it turned out that they weren't. However, we did find out then that Meaghan's heart had been compromised. So now they, at that point, knew that Meaghan was going to need the double lung heart block transplant. It was only a few months later and we got the call again. We went back down. Meaghan's transplant was, according to those surgeons in the room, textbook. However, when she was in recovery, she had problems with bleeding, and so they had to take her back in again. After that, that's two surgeries right in a row. So she ended up in ICU and an induced coma for 10 days to allow her body to try and get to the point where it could handle the trauma that it had just been through.

It literally was like having Meaghan reborn. She had to learn to walk, to write, to talk, everything. And she did. We were at Stanford from February to June, and then we went over to the interim home where you stayed and kind of functioned on your own and then were close enough to get back for visits to Stanford. We came home, and while Meaghan was in the hospital, she suffered some infections and different things along those lines. Then, when we came back home, she was about a year out and she started having difficulties. She developed congestive heart failure, and then she just kind of went downhill from there.

We were at the University of Washington when Meaghan felt herself slipping away. I was in the room with her, and we called. They came and rushed her down to the emergency room. As they're wheeling her out, she said, "Mom, I'm scared." I remember telling her, "Meaghan, it's going to be okay." Now, I didn't know at the time what I was telling her, but it was okay because she had gotten as far as she was going to get.

I spent a lot of time with Meaghan. We were each other's best friends. We could agree to disagree. When she went, I told her it was okay to go, that she would always be with us. I accepted that that was something that was going to occur at that point in time. I had always prepared myself for it. She always prepared herself for it because, whether it was going to be part of her future or not, it was something that was a possibility. So to ignore it or to act like it wasn't, wasn’t realistic.

I guess the one thing that has stayed with me throughout all of this after Meaghan's passing is how much of an effect PH has on the entire family. Everyone is affected, and I would say that a lot of attention and help as far as mental health, physical health, all that, was given to Meaghan. I think, in some ways and in some cases, other members of the family who were affected by it stayed silent, and the help that they maybe could have used or needed at that time, they didn't get. That has affected our family as a whole and each of us as individuals about how we look at life going forward.

My name is Mary Jan Hicks and I'm aware that I am rare.

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For more about Meaghan's journey, visit www.meaghanhicks.com.