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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!

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Becky Mack - phaware® interview 396

Dec 13, 2022

In this episode, pulmonary hypertension patient, Becky Mack discusses navigating her rare disease diagnosis right after losing her husband to cancer. She also shares her story of adoption and motherhood.

My name's Becky Mack, and I live in San Diego. I am a pulmonary arterial hypertension patient. My entire life I've had difficulty and had trouble breathing. I’ve always had lung things, but was never really diagnosed with anything. As I got older it got worse. I was, as is common with pulmonary hypertension patients, misdiagnosed with them all; asthma, bronchitis, COPD. Go down the list, I had them all. Doctors gave me pills and they gave treatments and they gave me all kinds of stuff, and none of it really helped.

Then my husband got sick. He got cancer, unfortunately, and he died. I went to my cardiologist for my yearly checkup, because I had… as part of my story we now know, I had a mitral valve replacement 22 years ago. The only thing they could tell me at the time was that my mitral valve had been fused and blown or wrecked from rheumatic fever as a child. We checked with everybody in the family. Nobody remembers me having rheumatic fever. My oldest sister said, "No. If you had anything and anybody had said those words or if you would've been in the hospital, I would know. You did not."

Okay, so whatever it was, I evidently had something. I had bad strep throat. It was probably a cousin of rheumatic fever. Whatever it was, it blew my mitral valve. Life goes on. Years later, I grow up, and I start having difficulty. I went to a doctor, blah blah blah, and he diagnosed me with a blown mitral valve. So we replaced it. I got mechanical valve 22 years ago, and life was good.

Then the breathing trouble started. It got a little worse. It got a little worse, and life went on. My husband got sick. After he died, I went for my checkup about two months later. As I'm getting my sonogram, the technician said, "Oh, stay right here, I'll go get the doctor." That's always your clue that something's wrong.

She comes back in and says, "The doctor would like to see you in his office." I said, "Oh my gosh, it's got to be bad news." I went into the doctor's office and he looked at it and he said, "I see something wrong. I'm not real sure what it is. I would like for you to see a pulmonologist. I'm going to send you to a colleague who's two offices down."

I marched my little rear end two offices down right then and there. He wanted me to do it right away. I went into his office and he listened to my lungs, and he said, "Well, those are the clearest lungs I've heard all day. I don't hear any wheezing. I don't hear anything." He said, "But I suspect something. I'm going to send you to a colleague of mine at UCSD." I said, "Okay." He said, "Let me make a phone call." Then he said, "Okay, next Tuesday morning, 7:00 AM, show up at UCSD, blah blah blah, do this, that, and the other."

So I did. I had my number two son with me. The doctor was going to give me a right heart catheterization. I had never had one. I didn't know what they were. As everybody now knows, when you have a right heart catheterization, they don't put you completely out. Therefore, my son was able to be in the room. So I'm laying on the table and the doctor's got the little scope and his little camera, and he's putting it down and he's barking orders, telling everybody what to do. Everything's going along fine. My son is standing in the corner. He's observing everything. I'm aware of what's going on.

The doctor gets all the way down, takes all the pictures he wants to, and says, "Just as I suspected, she has pulmonary hypertension." Without skipping a beat, he turns to my son and says, "Don't google it." In the meantime, my son's on his phone googling it. His eyes get big. I had no idea. Six hours later, I was in the pulmonary hypertension center at UCSD diagnosed with pulmonary hypertension, getting fitted for a subcutaneous pump. That was seven years ago.

That was in a new reality. I was absolutely, totally blown away. Here I was, alone. It was the most unreal time in my life, because everything had happened so quickly. I was still very much grieving the loss of my husband. I get him buried and it's like, okay, now it's time to focus on me, and then boom, this. Now I've got this life-threatening illness, and I have to deal with that. It was scary as all heck, because I no longer had my partner to lean on. I had to do it by myself. I had no choice.

My kids are, at that point, 28, 29, and 30. They all stepped up and did what they could as they knew how, in their grieving of just having lost their father. So it was tough on all of us. They all just kind of took turns getting me to the doctor. It was tough on everybody, because not only were they grieving the loss of their father, now they've got a mom who's sick, who's got this weird thing going on, and all this medical equipment she's got to use. She's got to be hauled all over town to doctors. It was a really, really, really rough time.

People say, "Oh, you're so strong, you're so strong, you do this, that, and the other." There's no choice. I have no choice but to step up and do what needs to be done. I got to do it myself. So I do. I don't like it, but there's no other options. My choice is to stay as healthy as I can for as long as I can, continue to do as much as I can for as long as I can, and advocate for my own health. So you just do it. Now, I have my days of depression, but most of the time it's okay. It's either that or, I don't know what, curl up and not get out of bed. I don't want to do that. I'm stubborn. I'm not ready to die.

The support of the few people that I have met through support groups really is what kept me going, because in the beginning I didn't know anybody. It's such a rare disease that you don't meet people in the supermarket that say, "Oh, yeah, my nephew's got pulmonary hypertension. Oh, yeah, my great-aunt had PH!" Nobody's ever heard of it. It's like, okay, I have to find something. I have to find my people.

I was lucky enough to do that through UCSD. They connected me with the San Diego Pulmonary Hypertension Support Group, Pulmonary Hypertension Association, and Facebook groups. Sandy Lombardi was marvelous for doing that. When there was something going on that I could go to, I go, because I crave being around other people, because nobody's ever heard of it.

My husband and I got married in 1980 and children were always on the plan. A couple of years later, okay, it's time, We're preparing to have kids, and I can't get pregnant. We wait six months. Then we start the infertility treatment. Nothing is working. We were both checked out. They didn't see anything major. We tried everything, spent every single dime we had. Any money we had saved for a house all went into infertility treatment.

About six years later, I had a fellow at work who just kind of looked at me just out of nowhere and says, "Well, what's most important? Do you want to be a parent or do you want to be pregnant?" For some reason that just clicked, and it's like, I want to be a parent. So then it was like, okay, okay, adoption's our next option. We talked and we thought about that. Then we started the adoption process. We fostered for a while.

What was important to me, and I know it sounds selfish, but what was important to both my husband and I was that we had a child that looks like we could've given birth to him or her. We applied to many, many, many agencies. I started at A and we went all the way through. We found Vista Del Mar Childcare Services in LA. They were just like a perfect fit. I remember they said, "Okay, come to an orientation meeting." So my husband and I dutifully went down there. We walked in and this fellow's up there, and there's this whole roomful of people. He looked at us all and said, "Congratulations, you're all about to be parents." I just started to cry. Everybody in that room did. It's like, wow, somebody here's offering me hope. We stuck with their program. It took us about two years, and we were blessed enough to be matched.

We adopted a baby boy. We brought him home from the hospital, and life went on, and it was good. When he was five years old, it's like, okay, we'd like to do this again. By that time we had moved to San Diego and had looked into adoption here in San Diego. Then I got to thinking, you know what? I am 40 years old. I am not so sure I want to do that infant business again. Well, God had other plans, because my next door neighbor, who was a minister of a church, said, "Oh, I know two little boys who need a place to stay just temporarily, and I know that you guys have room." We said, "Sure, we'll take them in." So we did. They were in the foster care system. We were already licensed as foster parents. Rory and Ryan were six and seven at the time. And they stayed, and that's a whole other story I won't get into.

A year, 18 months later, we had a conversation and a social worker had the conversation. "Okay, obviously there's no reunification. How do you guys feel about adopting them?" We said, "We're in." So life goes on. It took us another year, and we adopted Rory and Ryan. Now, all of a sudden, I have three boys, five, six, and seven. It was like, okay, we're done. I got three boys.

Pulmonary hypertension and pregnancy do not mix. I'm thinking that this was going on, and I'm thankful that that's the case, why I could never get pregnant. It would've killed me. You know, what is is, and there's no way I could ever know that, but it worked out. That's how we became parents. That’s how it fits in with my pulmonary hypertension story. Had I been pregnant, it might've killed me.

If I had to give advice to a newly diagnosed patient, I'd have to say, "Imagine if you were planning a vacation to Holland, and you had read everything there was to know about Holland. You'd seen pictures of all the flowers. You knew exactly what you were going to do in Holland, what you were going to see. How life was going to be. You got on the airplane to go to Holland, and the plane landed and you got off, and you're in Italy. Now what? Okay, you enjoy your time in Italy. You learn how to love Italy. You just do whatever it takes. You planned on going to Holland, but you ended up in Italy, so here we are."

My name is Becky Mack, and I'm aware that I'm rare.

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