I’m Aware That I’m Rare: Nicole Hogan (380)
The phaware® interview
Pulmonary hypertension patient, Nicole Hogan was diagnosed in 2018. Four years later she is still grappling with her rare disease prognosis. PH has changed her life. Now she advocates for herself and the community to help make PH history.
My name is Nicole Hogan, and I’m from San Fernando Valley. I was diagnosed with pulmonary arterial hypertension February 8th of 2018 at USC Keck Medical Center in Los Angeles, California. I was having a hard time walking up stairs, or just from room to room inside of the house. I would walk from the living room to the kitchen and be so out of breath. I just thought, “It’s just stress.” Maybe this is what stress felt like. I had no idea it was as serious as it was.
Some friends of mine tricked me and said we were going to go get some ice cream, and they took me to Encino Hospital. Encino hospital said that they had to send me to Valley Presbyterian Hospital. They admitted me at Valley Presbyterian for about two weeks, and they tried to do a right heart cath. But evidently, Valley Presbyterian Hospital did not have the technology that was needed or required to really get my accurate pressures within my heart.
There I went to USC Keck. And I was in the ICU at Keck for about a good week, and they initially started meeting with VELETRI medication, the intravenous feeding medication right into my heart through a PIC line. It was so overwhelming for me, because I’m young. I’m only 52 years old right now. At the time I was 48 years old. I just asked them, “Is there any way that we could do oral medication?”
What happened was my body started to reject the medication that they were giving me. They tried another one, and that one was working. But the doctor thought I would be a good candidate for oral medication. At the time they told me I only had three to five years to live, because I waited too long to get into the doctor to get checked out. The thing is, they were right. I did not think I had a serious lung issue. I just thought I was stressed out.
I was going through some personal dilemmas in life, rocky roads we all go through. I just thought that I was handling things correctly. But, come to find out that I have a very, very serious terminal illness that offered no cure. I’ll never forget that day when the doctors put their hand on my shoulder and said, “Look, I’ll give you three to five years at the most.” That was disturbing to me, to say the least. I won’t accept that.
So here, walking into year four, I’m on my oral medications still, which is a triple therapy with OPSUMIT, UPTRAVI, and, sildenafil. Those three medications together is what I take every day, twice a day. Every year I get a right heart test, I do my six minute walk. I do the breathing thing, because I’m also on oxygen at night time. I’m on three liters of oxygen.
It’s a lot. It totally changed my whole life. It changed me, I think, into a better person actually. It made me really, really think about life, and how grateful I am to be alive, and how blessed I am for every day, for every breath of air that I breathe. USC really, really, really did help me immensely. It was a game changer for me.
Not only that, it also ended my career. I wasn’t able to work because of my symptoms. I faint. I don’t know when I’m going to faint. It’s really scary. So there’s that. I have to always have this on the back of my mind, but the elephant’s in the room. I don’t try to look at that elephant. I just push myself to keep going and keep doing. If I have to do housework or whatever I need to get done, I’ll get it done. It just might take me a little bit longer, because I know better to take breaks.
I moved out to Las Vegas to be with my boyfriend. The doctors out here, they’re really just monitors. They just monitor me. I see them every six weeks. I see a heart doctor. I see a pulmonologist. All they really do is monitor me. I feel, after four years now, like my disease has leveled up. So, I feel my treatment needs to level up. Now, I’m in a position where I think the type of medication that initially offered me, (the IV going straight into my heart), might be a good option for me right now.
I’m grateful for the people I have in my life. I’m grateful for my doctors. I’m grateful for every single day that I have. I mean, when the doctors told me that, I cried for three days. I cried from the bottom of my stomach. I came to realize that I have two choices. I could sit there and cry, and get a big old headache, or I could sit there and just live, and live the best that I can, and help other pulmonary hypertension patients get through it, as well as the ones who helped me get through it.
I do a lot of advocating for pulmonary hypertension. A lot of people in this world haven’t even heard of pulmonary hypertension. They’ve heard of cancer, they’ve heard of AIDS. These people get accepted. I don’t look sick. You look at me, and you would never know that I’m sick. It’s what’s going on inside of me that is just, amazingly, trying. It’s like, “I’ll catch up to you. I’ll be there in a minute.” I don’t want to look at the elephant in the room, or say that I’m sick, or own not so much, because then I’m going to be sick. Then it’s all going to be real. It’s almost like, I do what I’m supposed to do. I take my meds, but I still don’t want to believe that I’m going to die. Are you kidding me, that’s it? I’m not ready to die. So, I try to stay positive.
What I do is I advocate for pulmonary hypertension. I’ve met with the Senator of Nevada, Jackie Rosen. I met with Congresswoman Susie Lee here in Nevada. I also met with a Senator of California last month. We’re trying to get funding to Capitol Hill so they’ll fund the research for this disease, so that we can find a cure. I believe, maybe I’m crazy, but I believe that they will find a cure in my day and age. I don’t think I’m going to die. I don’t want to die. I don’t see that coming. Even when I’m out of breath, or I feel these little pains in my heart, or I feel, “Oh, my oxygen’s really low,” and I start getting forgetful, and all that stuff. But, I’m not going to die.
Life is so beautiful, and it’s so short enough as it is. We lost so many people to COVID. I just want to be able to live the rest of my life a better person, and do the best I can for people, and help people. That’s just what it turned me into, really. It absolutely changed me. I hate to say it, before I was a pretty selfish person. I was all about myself, and I didn’t really take care of my health so much. I didn’t think it was something that I needed to take care of. I was kind of reckless as far as that though. Now, I eat better. I exercise. I really pay attention. I do what I think I’m supposed to be doing.
I’m always on the Internet trying to look up more the latest and greatest information, or I research clinical trials. I think it’s part of to help keep me alive. I believe I have so much to give this world. I mean, I’m not a movie star or anything, but I’m a great person. I have a lot of love to give. Around town I’ll volunteer, because I’m not working, it’s boring. But I got to do something, So I volunteer and help at organizations, just by passing out T-shirts, or answering phones for them for the afternoon, or whatever.
I do what I can. My disease sometimes kicks my butt at times/ I just got to sit down, and just take a breath, let my body recalibrate, and then get up and keep on going. I just push myself. That’s what I do.
My name is Nicole Hogan, and I’m aware that I’m rare.
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