I’m Aware That I’m Rare: Yolanda Villalon (389)

The phaware® interview

In this episode, pulmonary hypertension patient and Stanford’s Race Against PH 2022 Adult PH Courage Award recipient, Yolanda Villalon, discusses her devastating diagnosis and the impact on finding the right support group.

Don’t miss the 22nd Annual Race Against PH at November 22 hosted by the Vera Moulton Wall Center for Pulmonary Vascular Disease at Stanford. Click here to learn more. #raceagainstph @phaatstanford

My name is Yolanda Villalon. I’m from Hollister, California. I was diagnosed with pulmonary arterial hypertension in August of 2018. Like many people, I was misdiagnosed for a couple of years. One of my first symptoms was this cough. At the beginning, I thought it was just allergies, but it was real persistent. So I went to my doctor and I was told, “You have extreme asthma.” I was given a lot of inhalers and pills and I just kept getting worse. My breathing was getting heavier. I was gaining a lot of weight. I was coughing to the point where I was having these little spasm attacks. When I would cough, I would start to feel faint. It got so bad that I was afraid to drive, because I would have these attacks and I could feel this darkness come over me. So I would pull over.

I kept getting checked for everything but my lungs, they kept showing everything was clear. Everything was okay. It got to the point where I couldn’t sleep. I gained a lot of weight, although everyone kept telling me, if you just walked and exercised. People didn’t understand, I had to psych myself out every morning to walk to my car. I would tell myself, “You just need to get to the car and you’ll be okay.”

Then I’d get to work and I would tell myself again, “You just need to get to your door and you’ll be okay.” I did that for months. I didn’t want to wear clothes. It was so hard to put on socks because I couldn’t reach my feet. I was gaining so much weight and I was passing out. So finally, maybe about six months down the line, I decided I’m just going to the doctor’s office. I know I don’t have an appointment for weeks. I’m not leaving until someone tells me something.

My doctor saw me. There really wasn’t anything that she could say. She just kept telling me, “Your lung X-rays are clear, but you have a slight enlarged heart.” She set me up with a cardiologist in town and he saw me right away and ran some tests. He said, “Yeah, something wrong with your heart.” While I was going through my files, he mentioned sleep apnea. I said, “Oh yeah, I had that in my late twenties.” They told me, “We’re going to remove your tonsils, lose weight, you’ll be okay.” He said, “No. It says you have a CPAP machine.” I said, “No, I don’t have a machine because I’d be using it.” So he set me up with a sleep test and come to find out, yes, I have sleep apnea still. Extreme sleep apnea.

He said I was losing 20% of my oxygen when I went to sleep, which would explain the discolorations of my lip and my tongue. I didn’t tell anyone that I was going through that every morning, looking at my face and going, something’s wrong. I explained, because he told me also diet and exercise. I explained to him that he didn’t know me, so he didn’t realize this is not the way my body is supposed to look. I knew I had water because when I walked, I could actually hear it slosh. So he did give me some water pills and it felt like overnight 30 pounds gone. I finally received my CPAP with my concentrator. I was feeling good. I wasn’t feeling normal, but some of the symptoms that I had, they felt less, especially that water weight. Once that water weight got off, the pressure around my chest that I was feeling, my breathing was a little better, but I could still tell that something was wrong.

I kept thinking, it’s going to take time. I felt pretty good. About a year later, I started to feel the symptoms. The cough came back. The heaviness of my body. I weighed myself, 14 pounds I gained. I thought, how? I’ve been on this diet, I’ve been doing well. I just felt like everything was slowly but surely coming back. This time, I went straight to the cardiologist and he said, “Well, it’s been like a year and a half. Let’s do an echo.” I did the echo.

I went to a conference in Vegas. We went for a walk in the evening. It was hot. Boy did that knock me down. I felt miserable. I remember my coworkers wanted to take me to the hospital. I’m so stubborn. I said, “No, no, if I just rest, I’ll be okay.” The cardiologist called while I was at the conference. He wanted to know, “What day are you coming back? What time?” I told him. He said, “Don’t stop to eat lunch. Don’t go home. From the airport to my office.” I thought, “Oh man, this is not good.” Sure enough, he said that my heart was actually worse than a year ago. He knew that it was time to pass me on to someone else and he made the arrangements.

I went to Stanford maybe about two weeks later. That was the first time I heard about PAH. That that was a possibility. They kept me for day and a half, so they could run as many tests. They really wanted to do the right heart catheterization, but they couldn’t. It was going to take a few more weeks. They gave me a book. I remember going to the book. It went by the severity. I remember looking at oral pills and inhalers and thinking, “Okay, this is going to be me.”

When I got to the part about an IV pump user, I thought, no, I don’t want to be that person, so I’m not even going to bother with that chapter. I’m going to skim over this. I’m going to be this person that only has to take pills. A few weeks later, I do my right heart catheter. I went to get my results. I was told that I need to be admitted, I’ll be there for two weeks. It never really occurred to me, although they were saying it was possible if I have this disease. I really was hoping someone would just give me some pills then off I would go home. I knew I was ill, but I never thought I’d hear rare condition. Prior to being ill with this condition, I really had never been sick. I rarely got a cold or the flu. I didn’t have any medication. I didn’t have high cholesterol. I was really proud of myself.

Now they’re hitting me with this rare disease, not knowing what my life expectancy was. I was told it could be two years. It could be 10 years. If I was really lucky, 20. That was a lot to take in. Thankfully, a friend had come with me. I remember the doctor saying, “I’m going to give you a moment to take this in.” She walked out. I laugh at the most inappropriate times. I remember turning to my friend and saying, “Did she just say I’m going to die?” My friend looked at me and she’s like, “Yeah, I think that’s just what she said.” I just started laughing because I was just so shocked. We were apparently laughing loud, because I remember when she walked back in, she said, “You know this is serious, right?” I was like, “Yes, unfortunately this is how I react to things that shock me.”

I had never even heard of an IV pump. I remember being asked, not asked, but encouraged, that I needed to go this direction. Yes, there were orals, but this was what was going to help me the fastest. I said, “Sure, okay, let’s do it.” I remember the doctor saying, “You’re saying yes, but your face is saying no. How about you go home, talk about it with your family, think about it.” I said, “No, if I go home, I’m not coming back, because I’m scared.” I said it’s better for me, just stay here. She said, “Okay, we still want you to still process it. We have a lot of tests to run still. In a day or two, we’ll to discuss it.”

I never discussed it with anybody, with family or friends. The reason I didn’t wasn’t because I didn’t want anyone to support or help. I was scared because they had explained to me that it was going to be rough transitioning with the medicine and my body. The side effects were going to be a rough ride. I thought, well, I don’t want later on to be angry at anybody and say, “Why did you tell me to do this? Why did you let me do this?” I figured if I’m going to be mad at anyone, I can be mad at myself. I can look in the mirror and go, “What were you thinking?” That would be okay because I didn’t want to be angry with anyone when that time came. And it did come. But I’ve been able to get past it, obviously.

One of the two things that I asked for, I asked, show me. Show me another person with an IV pump because one, I don’t even know what that looks like. I want to see how they live. I want them to tell me how they’re doing this. How they’ve been living this life with a pump. A couple of days later I met a very nice woman who not only had PAH, she had another condition. I remember thinking, gosh, you at least only have one thing. This poor woman had two. That’s a lot. Then my second thing was, when does your support group meet? Because I knew I was going to need that support group. Two weeks to learn how to mix my own medicine, which was terrifying. My sister came. She learned. My brother, when I came home, my brother learned how to mix medicine and to clean my port area. All that was scary.

I went to a support group. I was so excited, because I kept thinking, I cannot wait to meet other people like me. I cannot wait to hear their stories, to find out how they’re surviving this. I was excited. My coworker, my boss was so nice, she let the both of us take the day off, because it was like an hour and a half drive for us to go to support meetings. She went with me and we got lost. We were a little late for the meeting. I remember being just so excited. Then I put my hand on the doorknob and that joy and excitement and looking forward to meeting these people, it was like it just flushed out of my body. All of a sudden what rushed into my body was heartache, fear.

I remember opening the door and looking at the group and thinking, well, I don’t think I want to be part of this group after all. I don’t think I can do this. Let’s not. Let’s leave. We went in. We sat down. Everyone was introducing themselves. It comes to my time. I went to say my name and I couldn’t. I balled. I could not stop crying. It just came rushing out of me. I just couldn’t stop. The only thing I could say was, “I’m sorry.” I was sorry for crying so much.

I was so grateful that my friend Karen had come with me, because she became my voice. She introduced me. She let the group know how I went from a healthy person to a non-healthy person. I was so grateful for that. I was really grateful for the support group, because I think the average person was like 5 to 10 years. We had a person that was about to get ready for a transplant and everyone just kept saying, “It’s okay. We know exactly what you’re feeling right now. It’s okay. Let it all out.”

It would take me about two more months before I would stop crying at the meetings. But now, I like to engage. I still have my moments. I get really emotional about it, especially when I hear a new patient because you totally relate. You understand them like nobody else can. I love going to support group. I love when we were meeting. Right now we’re doing Zoom and it’s been a little bit more difficult for me to do, to meet. I used to take a whole day off just to go to the meeting. Now, I’m having a hard time stepping away for an hour at work. So I keep hoping there’ll be a hybrid someday.

I’m just grateful for my support group. I’m grateful for all the support I get. I’m very fortunate that I have family and friends and employers who have just bent over backwards for me, really. And my doctors. I’m just grateful for all these people that are in my life, because without them I couldn’t do this. When Dr. Kudelco called and said I had won the 2022 award for courage, I remember thinking, “I’m not courageous.” I don’t see myself that way. I see myself as someone who wants to live and thrive. If I am courageous, it’s only because of the people that are in my life that help me push through.

My name is Yolanda Villalon and I’m aware that I’m rare.

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