Larissa Domenichelli - phaware® interview 382

Aug 30, 2022

Pulmonary hypertension patient, Larissa Domenichelli discusses her rare disease diagnosis and why she feels like a 73 year old trapped in a 37 year old's body.

My name is Larissa Domenichelli. I'm from Cloverdale, California. My connection with pulmonary hypertension is I was diagnosed in November of 2020. I was in heart failure. Little did I know it was about six or seven months, just progressively short of breath. Feeling faint. It all started when I was working as a dialysis tech. You have to move. Clean those machines. Get those patients on and off. You have three shifts, three different patients, four times in a 14 hour shift. I just couldn't move like I used to. I used to play basketball. I was really good. I just couldn't move like that anymore. I noticed that's when COVID came out, too. A coworker actually joked with me and said, "You have COVID, huh?" I said, "Yeah, no, no." Little did I know, my heart was starting to shut down right then and there. As time went on, I got worse and worse. I couldn't even work.

I just refused to go to the emergency room because of COVID. I have been in the medical field my whole life. In the back of my head, I kind of knew something was going that was serious, but I refused to go to the emergency room because I did not want to be there alone. Because that's scary. On November 5th of 2020, when I checked myself into the ER and I heard the nurse saying, "STAT," and three or four people rushing me to get an EKG and a CT. Here's the doctor come in asking me questions. I honestly was in disbelief. I did not believe that I was in heart failure. I'm too young. I'm 37. I don't even have half my life put behind me.

When the cardiologist came in and said, "We're going to do a heart catheterization on you tomorrow," I was in shock. I said, "Maybe I should call my mom now and tell her I'm here." They were also going to take me up to ICU. They were going to put a bypass machine on me, which is a machine for breathing, as all us pulmonary hypertension patients know. That was really scary to me. My O2 sat was 50, when I was admitted. I couldn't even take 10 steps without gasping for air and doubling over and almost fainting. I couldn't do anything myself. When I went up to ICU, I called my mom. My mom came and was really surprised that I said this so nonchalantly, because like I said, I was still in disbelief. I am 37. This is not happening to me right now.

The next day, they ended up doing the heart catheterization. I got out of the hospital seven days later. Mind you, I'm on six medications for the rest of my life now. The doctor did tell me that it was due to an atrial septal defect, which is a hole in my heart, which makes the oxygen and blood go two separate ways, which causes pulmonary hypertension. Basically, there was nothing I could do to prevent it, I guess. Now I see a cardiologist every three months. I still have trouble breathing. I just started a new medication, my sixth medication, actually. I can actually walk upstairs now without gasping for air and I can actually carry things, somewhat. Carrying things upstairs is super hard for me. It really sucks when you're only 37 again, and you have to ask for help constantly. After being in the hospital and going through that, I went through a bad breakup and then I got evicted and then it just went downhill from there. But things are starting to look up now.

I did get a job in the oncology unit, which makes me grateful for being alive and my life isn't that bad. It takes a lot to accept it. I never thought in my life I would be at 37, not being able to shoot a basketball. Not being able to run down a basketball court. Not being able to rebound. Not being able to run down the stairs, or run after my dog. It really puts a toll on your self-esteem and your dignity and everything.

Now I'm still struggling. I still have really high pressure in my lungs. Mind you, when I was in the hospital, my pressure in my lungs was 88 and a normal person is supposed to be 12. My pressure in my lungs right now is 84. The cardiologist is still working on getting my lungs down. I'm trying to get in to see a pulmonologist here in California. It's really hard to get in to see a pulmonologist, because there's not too many of them, that specialize in that field. I've also researched it a lot, which I don't know if it’s a good thing, because the life expectancy and stuff that they tell you online was really scary.

After being diagnosed, what really makes me think a lot is why we're here for such a short amount of time. What is the point of that? I'm still trying to figure that out. I don't know. I guess because I won't live as long as I would've before I found out I had this, I guess you could say. I am Italian and we live forever, they say. It's just been really crazy. I have taken up this art called paint pouring and I do tiles. I make spoon plates and coasters with my free time ,because I don't work full time because I get too tired. When I get too tired, then I'm gasping for air. My oxygen's low. I get a headache. It's just a domino effect. Also being 37, having to take six medications a day is just not fun. I didn't think I would be 73 at 37. Like I said, I'm still accepting it. I'm trying to accept it. It's been really hard.

Not being able to breathe is really scary. When you're gasping for air after you've been walking only down the stairs and people are looking at you like, "What's wrong?" And you're like, "Just give me a second. I'm just trying to catch my breath here.” You almost feel like you're going to pass out, but you don't want to tell them that, because you don't want to scare them.

The medication is super important. My doctor said I probably won't have to do IV infusions right now, which I work in an infusion center. One side's oncology, one side's infusion, so I see this. I see these patients. I see how it works, the whole process. It's a part-time job for those people. They're there sometimes three times a week. I definitely don't want to have infusions.

My doctor talked about a double lung transplant and a heart transplant. I don't even know if I would even think about that. That's such a huge, huge thing, because I've seen patients with kidney transplants and it's like their world has just begun. They didn't want to put me under anesthesia all the way when I was in the hospital. Now my pressure's almost that high again. I don't want to attempt even anything like that. It's just scary.

I would rather give the transplant up and give it and let a child go. I'm not saying that I deserve to die, but I'm saying my lungs are already whatever. If a child is there, then they deserve it. I think that. I can't have kids now because of this last prescription that I've started. I had to actually have a surgical procedure. I had my tubes tied. I can't have children now. I have kind of accepted it, but I would want a child to have a wonderful life instead of have to worry about what I have to worry about. It's not fun. Some days are worse than others, but I couldn't imagine being a child going through it, I couldn't.

My job, those patients ring the bell every day, those cancer patients. I'm not saying I'm going to be cured, but I know I'll be able to get better by taking better care of myself, which it's in and out. No salt. Then again, sometimes you can't exercise like you want. That's how I take my anger, my stress. I run. I used to do kickboxing. There's no way. One day, I'll be able to do it again, I think. It's just baby steps. It really is baby steps, especially when you're dealing with the lungs.

To young people, I would say if they had any symptoms, I would go to the doctor right away. I wouldn't have waited six or seven months, no way. If I had to do it over again, no way. Maybe they could have not cured it, but maybe I could be on four medications instead of six. I don't know. Would've, should've, could've. I would just say, young people, just take care of yourself. Exercise is really important, because I would have spouts where, after high school, I wouldn't exercise for months at a time. They say sitting is the new smoking, so that's super bad for you.

My name is Larissa Domenichelli and I'm aware that I am rare.

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