Carl Hicks - phaware® interview 273

Aug 16, 2019

Carl Hicks is a beloved member of the pulmonary hypertension community and tireless advocate for patients and caregivers alike. Carl is a combat-decorated U.S. Army Airborne Ranger Officer who served our country for nearly 25 years. His daughter Meaghan was diagnosed with idiopathic arterial pulmonary hypertension while Carl was serving overseas. Meaghan lost her battle with PH during Carl's service as the board chair of PHA. He reflects on Meaghan on what would have been her 38th birthday.

My name is Carl Hicks. I'm talking to you today from Tacoma Narrows Airport near Gig Harbor, Washington.

My connection to the pulmonary hypertension space began back in 1994, but really began further back than that, began almost 38 years ago this week. At that point in time I was a soldier, I was young Army ranger, and my wife and I were blessed with the birth of our firstborn child, Meaghan. It was on August 16th of 1981. One of the happiest moments of my life.

As I stood there holding her just moments old and looking down at her, she was so beautiful, fragile. Big, beautiful brown eyes like her mom. They were already open. I remember clearly, clearly saying to her I'll protect you from everything.

Well, Meaghan was a real bundle of joy for us. She grew up very active. She was a gymnast from the first time we could get her into classes. She would enter a room almost doing somersaults. I mean, she was always tumbling, always having fun. She competed nationally in gymnastics, and when we were stationed overseas she competed there as well. Just a real bundle of joy, very healthy. In fact, we had three healthy children. Very happy family, military family.

One day Meaghan came home short of breath from school. I remember it very clearly. It was around April of 1994, beautiful sunny day. We're living in Heidelberg, Germany. She came and said daddy, I'm having some trouble breathing. I thought well, maybe it's some pollen in the air or something like that. Wasn't overly concerned because she was just so gosh darn healthy. But she complained about it for the next couple of days and some pain in her chest.

My wife took her to the doctor and the doctor said oh, it's childhood asthma, no problem. Take this inhaler and go home. I said did you ask him if she'll get over it? She said yeah. He said they typically grow out of it. I said whew, and so she started using inhaler over the next couple of weeks.

The inhaler didn't help her at all. She continued to speak of discomfort, trouble breathing, and we just couldn't quite figure out what was going on. She was about 12 and a half at this point.

Well, my wife took her to another doctor, another military doctor, and that doctor was at Landstuhl, Germany, said “Mrs. Hicks, I think I have an idea about what this might be, but it's kind of rare. I'm concerned and I want you to take the Medevac flight going back to the United States to Walter Reed in about 48 hours and take Meaghan back there.” And so we did. We didn't know what it was, but we knew that's where they worked on the presidents. You could get great care there. So again, we weren't overly concerned.

We're there for about three days or so. And a pediatric cardiologist asked me if I'd step around the corner. He said to me, he looked up at me and he said, “Colonel Hicks, or regret to inform your daughter's got a terminal illness. It's called primary pulmonary hypertension. And there's nothing that we can do for her.” He said, “I'd try, but he said I'm afraid I would lose her.”

Well, as you might guess, that hit pretty hard. And then the next step was to go in and tell my wife and Meaghan and we didn't quite approach it like he approached it with me. But he offered us the opportunity to go visit with a civilian doctor practicing at Columbia Presbyterian by the name of Dr. Robyn Barst. And as it turned out, she was the preeminent physician, clinician and investigator in the world in this disease.

We were so fortunate. We're up there for about a week and Dr. Barst, put her through a series of tests and at the end of the week she said yes she's got a primary pulmonary hypertension, what is now called something different. It's now called idiopathic pulmonary arterial hypertension. And Dr. Barst looked at us and said, “look, Meaghan does have this, but I don't believe in this business about one year. We're going to send her home on calcium channel blockers and oral medications and we think she's going to probably live a very good life. And so I want to see her every three months.”

So there we went, went off, all our stuff was still in Germany. The Army sent us to Fort Lewis, Washington, so we could be at sea level with her. And we came out here. That was, again, in about May timeframe of '94.

Well, Meaghan did very well on the oral meds for a long, long time. She was almost asymptomatic. She was beautiful, blossomed into a beautiful young woman. Graduated from high school, attended University of Seattle and then University of Washington, graduated from the University of Washington. And even though we were back at Columbia Presbyterian every three to five months and she had to take a boatload of medications, Meaghan refuse to be defined by this disease. She had as much fun as she could have, participated in everything she could have and was just a beautiful, beautiful young woman.

Ultimately though, she started to go downhill and one visit back to Dr. Barst, I ran into Dr. Barst in the hallway, just ahead of our final appointment with her, after the test, and she was quietly sobbing in the hallway. I said “Robyn, I guess I know what's going on.” And she said, “yep, she needs a transplant as soon as we can get it.” And I said, “where should we go?” Dr. Barst said, “Stanford.” Okay, we're off to Stanford to get her worked up for it and a few months later they called.

We went down for the transplant. It was a heart lung transplant by great folks, great folks down there. The Ramona Doyles of the world and Roham Zamanians, just tremendous, tremendous physicians. And many others that I don't recall their names. I'm sorry about that.

She had complications during the operation. We had to stay there for a long, long time afterwards, months, but we were finally able to come home. We brought her home and it was just a gloriously beautiful day as she breathed with those new lungs and a new heart.

Well, after some time she started to have problems with those. I think probably part of it was the setback she initially had during the transplant. We made multiple trips back and forth to Stanford. She felt badly. We'd be home for a weekend and we'd be back to Stanford, home for a couple of days, back to Stanford.

Finally in January of '09 they said, and this went on for about three months straight, they said take her over to UW. While at UW in the ICU, we thought we'd just be in and out of there after a couple of days. My wife sent me out for some coffee and she screamed come back in. I come running back in and they were doing chest compressions on Meaghan. And after about 45 minutes, the doctor said, “I'm sorry, they don't usually come back to us after that.” And I said, “you could stop.” At that moment, at that moment, that moment that they stopped those compressions, I remembered, I flashed back to that moment I looked at in her eyes that I'd made that promise so many years before. It came back into my mind. This is a difficult message. It's difficult for many to hear in our PH family, but it's a true story. It's exactly as it happened.

Back in '94 when Meaghan was diagnosed, we had one organization that was a very new organization. It was called the United Patients Association Against Pulmonary Hypertension or UPAPH. No one's listening to this would know about that organization, but I became a member of that and we began to fight, do our best to fight back against the disease. And my message to everyone that listens to this is that's exactly what you have to do. You cannot take this disease lying down.

I hear so many people talk about hope. I want to talk about hope for just a moment or two and why I think hope is a little bit overrated. Webster defines hope as a feeling of expectation and a desire for a certain thing to happen, as in a cure for disease. It's a desire for something to happen, but it's not taking steps to help that happen.

So hope in and of itself is not a method to achieve what we all have to achieve in the pulmonary hypertension family, and that is for us to defeat this disease with a cure.

I became involved very early on with UPAPH, which later on became PHA and I spent many, many, many weeks, hours, years of my life doing everything I could do to fight this disease. And over the years we've made great progress thanks to the help of many people worldwide and in many organizations worldwide.

You know, back when Meaghan was diagnosed we had zero FDA approved medications. Now we've got over 14 of them, more still on the way. We've got support groups out there. And these are not support groups that just belong to a particular organization. These support groups long to the patients. These are patients support groups that we helped to start.

Many, many great things. We've got now organizations like phaware that does the best job that I know of in getting the word out about this disease around the world. We've got organizations like Team Phenomenal Hope, which does many things for patients and funds research, and also is the only organization provides direct funding to patients in need. And that's because it's a very expensive disease. Wheelchairs break down and oxygen concentrators break down and people need rides to see doctors. Team Phenomenal Hope is the only place we can go get that. We've got PHA that's still out there doing things.

So these are all folks that are working to fight this disease. And one thing I have to say to anybody that listens to this is do not take pulmonary hypertension sitting down, fight, fight, fight. All of us, all of us, have some capability of doing something and fight against this disease.

And you say to me okay Carl, I've got PH. I'm very ill. I'm almost bed-bound. I can hardly get out of bed. I can't breathe to walk across the room. You can pick up a phone and call your congressman and tell him about your disease. You can pick up a phone and call Team Phenomenal Hope and say look, I want to help out. Give me something I can help you with from my bedside, or phaware or PHA. There are things that you can do.

And if you're healthier, you can help other patients by being a support group leader or helping their caregiver. The caregivers are the unsung heroes in this disease. These people take care of our patients day night. And some of them, it's almost a 24 hour a day task to help our patients. You can help them by making a trip to the grocery store, making a trip to pick up meds. There are just so, so many things that you can do to fight this disease.

I'm going to tell you what, it's the only thing that keeps me sane because knowing I can fight back against this, and fighting back against this through anything and everything that I can do is what carries me through this in the moments of that last promise that I made almost 38 years ago.

This weekend, on August the 17th. I'll be going out to participate in a triathlon at the age of 66. I'm doing this for our PH family, all of our PH family. I'm doing it to raise awareness and I'm doing that right now. And I'm doing that to raise funds. They'll go directly to Team Phenomenal Hope and directly to the Patient Unmet Needs Program. So that means they'll go directly to patients. My goal is to raise $10,000. As I'm speaking, I'm halfway there.

It will be very difficult, very difficult for me to manage this swim in the Columbia River followed immediately by a sprint up a hill and getting on a bike and a 12 mile very fast bike ride and then jumping off the bike at the end and sprinting three miles. Just surviving the Columbia River is my goal, but I'm doing this because it offers me, again, a way to fight back. I'm doing it every way that I can. And I will fight back against this disease to my last breath or until we cure it.

I'm doing this obviously in memory of Meaghan, and for all of our PH family and patients. And in particular I'm doing it for my “Let Me Be Your Lungs” Partner, which is a program that is part of Team Phenomenal Hope. In that program you offer the opportunity to a PH patient who could never do something like I'm about to do. I'm not sure I can do it, and you offer to be their lungs for the event.

On August the 17th, which will be one day after my daughter would've turned 38 years old on August the 16th, this August the 17th I'll be out there in the Columbia River first thing in the morning on Saturdays. I'll be doing it for Michelle Figueras and I'll be her lungs for that race.

I'd like to thank everybody who's listening to this and thank you Steve and your team at phaware for all the great work you're doing. It's great work. It's fighting back and we got to do that fighting back because there are lots of Meaghans out there. There are lots of Michelles out there. There are a lot of Lucases out there that are depending on us to do it.

Thanks for letting me share this. My name is Carl Hicks and I'm aware that my daughter was rare.

Learn more about Carl's Next Challenge: 
https://www.crowdrise.com/o/en/campaign/tri-ing-for-the-cure-for-ph

Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Never miss an episode with the phaware® podcast app. Follow us @phaware on Facebook, Twitter, Instagram, YouTube & Linkedin Engage for a cure: www.phaware.global/donate #phaware #ClinicalTrials @antidote_me 

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