I’m Aware That I’m Rare: Karina Macias (441)

phaware global association®
8 min readNov 8, 2023

the phaware® interview

In this episode, pulmonary hypertension pediatric care partner, Karina Macias, discusses her son Tito’s PH journey and why she dedicated her life to becoming a certified nurse assistant. Tito was named Stanford’s Race Against PH 2023 Pediatric PH Courage Award recipient. #raceagainstph @phaatstanford

My name’s Karina Macias, and I am from Central Point, Oregon.

I have two kids. My first son is Alexis, a 17-year-old. My second son is Tito, who’s 15 at the moment, and he’s the one with pulmonary hypertension. I do have a background in the medical field due to the fact of what I’ve gone through and Tito goes through all these medical issues. I pursued my career in becoming a CNA 2 (certified nurse assistant) at the moment. I am trying to become RN, LPN. Just learning with this pulmonary hypertension situation is very interesting. It’s scary.

I was 19 years old, a very young mom, when I had Tito. They had to induce me because he wanted to bake a little bit longer in the oven. This thing we found out with Tito was, at two weeks old, he was having discoloration, dark coloration underneath his feet, which were purple. We took him to his two-week checkup, where we found out that his oxygen levels were at 32%. Our doctor kept putting the little oximeter around his little toe, his finger, his ear, and our readings just kept getting lower and lower. We knew something severe was wrong with Tito at two weeks old, so they decided to admit us to our NICU.

That night, we found out that something was wrong with his heart. We weren’t quite diagnosed with a medical situation, but he was flown up to Emanuel Children’s Hospital in Portland, Oregon. I couldn’t fly with him due to the fact that he was so severely sick. There were about three nurses and two doctors that had flown down from Portland to come pick him up from Medford and fly him back up. That night, it was just the worst a parent could ever hear. They had to end up doing some type of heart surgery. Where that came from was that he had a right pulmonary artery that was very thin. They had to enlarge it because he wasn’t receiving enough oxygen to the right side of his lungs. He was not getting enough oxygen to breathe. That’s why his lips were purple, his feet were purple. His little fingernails were a little gray-looking color. We knew something was wrong. They ended up saying, with his heart condition, it was going to be fixed.

Little did we know that three years later they were doing an echo every year for his birthday, and on his third birthday, we found out that there was pressure in his lungs. We were here locally at one of our clinics, where our team came down from Portland to do ultrasounds on him and do an EKG. We ended up being flown back up to Portland because Tito had just been diagnosed with these pressures that were so high, which was making his heart rate so much higher at being only three years old. As we were up in Portland dealing with his situation, we did find out that the doctors that had done his heart surgery didn’t know how to treat his diagnosis because they’d never had a patient with pulmonary hypertension.

We were doing our homework, doing our research in the internet, looking for doctors for the symptoms that he had, who we could see, maybe another doctor in Oregon, or see where we could be headed towards. But they did get him started on sildenafil, which is a drug that they use to allow the blood flow through the body. Tito was started at 30 milligrams at just three years old, and that was a little too much for him.

As they were trying to figure out what was wrong with him, we were in the ER for a whole month after because his medication was just enlarging his liver. We were getting no results. Nothing was changing. He was actually getting worse. I kept doing my homework on the internet, just searching for doctors, looking for who could help me. We found a doctor in Bend, Oregon, so our doctors ended up sending a referral to that doctor, and that doctor from Bend, Oregon referred us to Stanford.

Three days later, we were in Stanford. All these medical records already had been sent to them. We didn’t know where we were headed. All I knew was that my heart hurt for my child because of how severely sick he was, and all I could do was hold my child who was crying day and night, day and night of stomach pain because he was tired. He couldn’t even walk. Being as little as he was, he couldn’t walk even from the bathroom, just to even have any energy to play at his age. He just wanted to be held and be asleep.

We get to Stanford, and our doctors confirmed that he had moderate to severe pulmonary hypertension. They had to do lots of testing, of course, lots of echos, lots of EKGs. They did some labs. They did CT scans. MRIs they couldn’t quite do it just because of how unstill he was and how little. So they confirmed the pulmonary hypertension.

He was diagnosed around four years old. We got him started on TYVASO, which was a breathing treatment. We got him started on digoxin. They got him started on sildenafil, which they lowered his dose. We ended up starting on a Remodulin pump. So all these little bumps on this road just to deal with his pulmonary hypertension has just been something that we’ve learned throughout the process, how to care for him, what to look out for. Let me tell you, just any little thing with these kiddos even having a cold, we just got to protect them because they’re very delicate flowers.

Pulmonary hypertension is something that’s scary. We’re sitting here just dealing with his diagnosis now, medically, just with medication. Last year, we were told that he was not a candidate for a transplant due to the fact that he’s also got another underlining health condition called Von Willebrand Disease Type 2, which is a bleeding disorder.

With the bleeding disorder, with the transplant possible heart and lungs, which they were trying to do with Tito, just the fact of trying to even put him under the knife just sedating him, I think that’s just the number one risk for him. Let alone, just trying to open the chest cavity and removing the organs and all the extra stuff that these special surgeons do, it’s just too risky for him. So we are just praying maybe there’s more medication to come out and just taking it day by day with him trying to keep him, we say, in a bubble, just so that he just doesn’t get what is out there in the times of the flu, the cold, the COVID, even though he’s caught COVID twice. It’s just something we get to learn every day with him. With pulmonary hypertension, you learn something new every day.

When we were first diagnosed at four years old, we saw Stanford, I want to say, almost every three months. They got us started on medication, and then they wanted to keep seeing us constantly to see if Tito’s symptoms would get better. Throughout the years, as we’ve been following them for, I want to say 11, 12 years now, we do follow up with them twice a year, and there’s been times where we have been flown down to Stanford in emergency cases here from our local hospital due to just little emergencies that we’ve had. One was his COVID. The other one was, he gets these bloody noses that we can’t stop sometimes the bleeding, and we have to go to the ER. They infuse him. They clot his blood. There’s been certain situations where he’s had colds and he’s coughing up blood and all this phlegm. It’s just the fact that he’s so prone with the hard coughing that he breaks all these little blood vessels in his esophagus, and they fly us down immediately.

Our treatment within the years has just been medical with medication, where they’ve up-dosed his medicines twice a year as we go to see them in the summertime. Then the other time is right before he goes to school, which is in the fall. We go to have a follow-up. With Tito’s situation, as we’re current right now, his pressure and his lungs are still high, but he’s stable, stable enough to where he can have daily activity to where he limits himself.

Throughout the years as we’ve been being followed with Stanford, they’ve just increased his meds a little more as we go each year, and right now we are at max therapy with a couple of his medications, but we do have the hope that within the next year or so they will have something new coming out. As they’re doing trials on adults, they do see some positivity to treat children now with pulmonary hypertension. So that’s one of our hopes for us to start on these meds when they come out and they’re approved by the FDA to prolong his life a little longer with these medications. So that’s where we’re at.

When I was in school, and it started in the sixth grade, I did my sixth grade career report was a registered nurse. It followed me through when I was in middle school, my seventh year in middle school, my eighth grade, up until I was a junior in high school. I ended up doing all my reports on a registered nurse, so the medical field has actually always caught my attention. I didn’t know I was going to deal with such a serious diagnosis with my own child. It’s just really caught my attention to where I myself just to care for my own child, I just keep learning on how to take better care of him, what to look out for.

We have had a couple of scary episodes where he coded in the cath lab. So all these things that you see, they do happen. I didn’t know it would end up happening to us, but I sit here and I just soak up all this information. I just want to learn more and more every day so that I can take better care of him. It’s just been something that I’ve always been so interested in.

I feel for the families because I know what it’s like to be in that situation. I’ve been in the hospital with my son for weeks, for a month, which is the most we’ve been in the hospital with him. I just want them to receive the care that they deserve. Even though it’s not in the pulmonary hypertension field, but I still feel for my patients because I would want them to be taken care of as I would take care of my own kid, even if it’s an adult, if it’s a child.

We do, rarely, on our floor, have some young adults, and we have seen some critical situations where their diagnosis is life-threatening. It’s hard to not take that too personally knowing that I myself have to come home to a very sick child, which, on a daily basis, he does great and he’s stable at the moment, but my son is on the back of my head when I get to see something because we do deal with postmortem care, all that type of situation. I just do what I can because I know that in my job scope and whatever I can do as a CNA 2, I will be able to take care of that patient how they’re needed to.

My name’s Karina Macias and I’m aware my son Tito is rare.

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Are You #phaware? Pulmonary hypertension (PH) is a rare, life-threatening disease affecting the arteries of the lungs. www.phaware.global