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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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Alejandra Hernandez - phaware® interview 237

Apr 12, 2019

Pulmonary hypertension patient, Alejandra Hernandez discusses being diagnosed with PH in the 9th week of pregnancy and the power of acceptance while battling this rare disease.

My name is Alejandra Hernandez. I am 35 years old. I live in the city of Hawthorne, California. I was first diagnosed back in November of 2009. I was actually nine weeks pregnant when I was diagnosed.

I went into the hospital. I was feeling sick. I wasn't sure what it was. I came out being a possibility of having pulmonary hypertension. They just said it could have been my pregnancy. They really just really didn't know. It was idiopathic. I started seeing OBGYNs, specialists, cardiologists, pulmonologists, because I decided to keep my baby, so I did. She's eight years old. She'll be nine June 2nd, and I've been on medication ever since.

Yeah, so nobody actually wanted to take care of me. I was from one place to another. They were giving me the runaround. Nobody wanted to really take care of me because of the high risks of being pregnant. Me deciding to want to keep the baby was even a higher risk, so nobody wanted to take that chance. They had given me the option of Cedars-Sinai or Harbor UCLA. Because Harbor UCLA is closer to my home, I decided to go to Harbor UCLA. That's where I met my doctor, who is Dr. Ronald Oudiz, and he's been taking care of me ever since.

When I met Dr. Oudiz, he put me on Viagra first. We decided that we would go as long as I could with the pregnancy, and I did. I was about 34 weeks pregnant when we decided, okay, it's time to go ahead and have the baby. I came in the end of May, he put me on Flolan for a week. A week later, we decided to do the C-section. I had my baby. I came home a week after having her, and she came home the following week.

She was a preemie. She was four pounds, three ounces. I was on Flolan for about eight months after having my daughter, and then after that I decided to go on sub Q. I was on sub Q for about seven, eight years and now I'm currently back on IV Remodulin. At the beginning, it was obviously very challenging for all of us. We were adjusting to our new life because everything changed for everyone. It wasn't just me, it was my children, my husband. At first we didn't understand much. I didn't even understand the seriousness of this condition. When I went onto sub Q, my life totally changed, because we would be beach bums. We would always be at the beach, at the pools, and when I was on IV, my life kind of just froze. It stopped. We weren't able to do much. When I went to sub Q, I was able to get my life back where we were constantly at the beach and doing activities more than when I was on the IV.

At first, it was challenging, but obviously as time went by, we all adjusted. They all started growing. They saw the seriousness also of the condition, when I wouldn't feel good, when I was in site pain, they've all been very helpful. My two older kids help out so much. They help wash the dishes. They're very helpful. Even my husband as well, he's very helpful. They're very patient with me. All they asked for us to have a home cooked meal, and they're happy. But as far as everything else, now, they're 17, 15, and eight so they're all older. They've all seen the progress of myself to how I've been able to do more things. Also, being an IV versus when I was on sub Q, I was always in pain, and they would see me suffering. They've been appreciative to the small things that I could do.

I would always recommend us patients to attend support group meetings. That's very important, because at first I wouldn't attend support group meetings. I felt alone. I felt lonely. I felt like I'm the only one in the world feeling what I'm feeling. As far as when you're on sub Q, you feel that you're the only person suffering, but when you meet someone else that is going through the exact same thing you're going through, you feel some comfort, and I don't know how. It's weird, but you feel comfort from knowing someone else's feeling your pain. That's one very important thing to go to support group meetings, because you will feel the support. The knowing that you're not alone. Second, is always ask questions, never stay closed minded. Look around, look to right, look to the left, because I would always close myself to, "Oh, why am I suffering? Oh, I'm sick, I'm this." But if we're able to get up and go to the beach or take a walk with our children, that's a blessing already in itself.

There's so many people that have to carry oxygen. That have to do this and that. If you're not that type of person that still needs oxygen, enjoy life. There's so much to life that we can enjoy now instead of complaining. I've learned that to not complain as much. Of course, we're human, we're going to complain, but we need to take it day by day because if we're able to do certain things without having to carry oxygen or getting out of breath, walking from here to the bathroom, that's already, to me at least, a blessing. It's something that I don't take for granted. I want to be appreciative to that and to accept this is my life, and I can't change it. There's no need for me to be miserable if I can't change what's going on in my life.

When I feel good, I tend to try to do everything on my own. But I tell them, if I'm not feeling good, you guys need to understand, and they do. They're very understanding children. Like I tell them, "If you want mom to be around, you have to help out because I can't carry all the stress." Knowing I have this condition, and I'm not going to use my condition as an excuse to say, "Oh, you have to help because I'm sick." No, no, no, absolutely not. But they do need to understand that the less stress I have, the less better things I can do for them and be here for them longer. They have helped out very much in the way where they help out, like I said, to do chores around the house. I've already taught my daughter how to cook. My son, like I tell him, "If I don't teach you how to clean, if you have a wife that doesn't know how to clean, how are you going to live?"

There's certain things that I told them, "Yeah, I still have to teach you, because it's part of life. You're going to get married one day, you're going to live, and if I'm not around, you're still going to have to do these things for yourself." When I see them do it without me having to ask, that's showing me, okay, my kids are growing and they're learning to see that one day maybe mom's not going to be around. They have to learn to do things for themselves.

For me, my family obviously is who helps me, but if you're a person that doesn't have children, I personally would say look to God. God is always there to listen to us. It's difficult to think, "Well, why is God allowing me to suffer?" But we're all going through something in this life. It's hard to stay out of depression. I know it is. It's hard to think positive when you see that everything is going wrong in your life, and I've told many of my friends, we're in this country that provides us medication for free. We have things that help us live. If we were in another country, we'd be dead. We need to be appreciative to the small things that we do have, and that's our medication. Maybe a friend. Letting out your emotions, because when you pile them up, I think that's the worst thing a person can do is keep it in. You need to let it out.

Cry as much as you want. I cried for a long time. I cried for a long time, and I've learned to accept it. That's it. We can't change it. There's nothing we can do about it, but be appreciative to be alive, to be in this country where we can have the things that we have to be alive, because a lot of people, if you were somewhere else, we'd be dead. I know it's easier said than done, but look around, see a flower, the moon is so beautiful at night. There's so many things we could be appreciative of. It just takes our part to think differently about life.

My name is Alejandra Hernandez, and I'm aware that I am rare.

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