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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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Laura Rivera - phaware interview 324

Apr 28, 2020

COVID-19 SPECIAL EDITION: Laura Rivera has contended with Pulmonary Hypertension for more than 24 years. In this episode, Laura details her recent 5 day battle with COVID-19 after being hospitalized at New York Presbyterian Hospital. #phaware  

My name is Laura Rivera. I've been a PH patient for over 24 years, and I live in the Bronx, New York. I'd like to share my experience with COVID-19. I showed mild symptoms, but my PH doctor was worried because my husband was having high fever and the coughing. All I had was a sore throat, occasional cough here and there, and low grade fever. They directed me to the ER. At the ER, they did not want to test me because my oxygen saturations were so good, and they felt that I didn't need testing. If it weren't for my doctor advocating for me, because she fought with the ER attending to have me tested. The only way they will test you here in New York, I don't know how it is anywhere else, is if you fall under four categories.

First, would be that you would have to be a first responder, healthcare worker, if you've come into contact with someone who's already tested positive, or if you were being admitted into the hospital. Since I did not fall under any of those categories, it was a fight. My doctor was adamant. They decided to admit me. I don't even know what reason they were going to give, but when they did the chest x-ray, they saw that I had viral pneumonia, which is caused from the COVID-19 virus, and that's when they were like, "Oh no, you really have it. We're going to have to admit you and test you," which is what they did right away. The test took 24 hours to get back. As soon as it was a positive result, they started me on doxycycline and plaquenil, which is that autoimmune medication that they are saying that is working.

I honestly do not know if it helped me or not, because of the fact that I was not short of breath. I was not having high fevers. I felt actually fine. If it worked. I have no clue. The antibiotics helped with the pneumonia. I was in the hospital for five days. They just kept watching my oxygen saturations because of the fact that they said that after the fourth day of being symptomatic is when you can really go downhill quickly, which thankfully, didn't happen. I was sent home after the fifth day. I would have been sent home earlier, but because there is a shortage on the plaquenil medication, they wanted to keep me there so I could finish the five day regimen that I was on.

I came home five days later. I will tell you that the biggest symptom was my being exhausted. I could sleep all day and still be tired. This virus just pulled the energy out of me. I do have a cough here and there, but it's nothing major. My shortness of breath, it did get worse maybe two days after coming home. My doctor said that it was just probably because of the fact that I haven't been exercising or walking around. She wasn't really worried because it didn't really dip to a level where she felt like I needed to head back into the hospital. After about maybe a week and a half, I started feeling much better with much more energy. I still do not have my sense of taste or smell. I'm really not eating because of that. I've already lost like 11 pounds since I got sick. There's no plan on retesting me right now because of the fact that some people still test positive after 30 days.

When it started hitting New York and the cases started rising. I was anxious. I was having panic attacks. Just having my husband go out to the supermarket because he was the one that was doing all the essential groceries and the pharmacy. I would always have like some kind of anxiety attack, because I was like, "Oh my God, he's going to come home. What if he touched something and touched his face?" But when he got sick, I was like, okay, I need to not panic as much. Try to take care of him, at the same time keeping my distance. My first thing was like I need to go and stay somewhere else, because if he's sick, I'm going to get sick.

But my doctor was like, "You guys have already been together without keeping that social distancing thing, so there's a chance that you already got it. Your anxiety will be crazy if you leave and not know how he's doing," which I agreed. When I started feeling symptoms, I honestly can say I did not panic, because I didn't feel that shortness of breath that people say like, "Oh, I can't believe." I wasn't like that, so I didn't get scared. I will tell you, when they did tell me that my test came back positive, I did get a panic attack, and the nurse had to like talk me through it, because I did freak out. But at the same time, once the initial shock of getting confirmation that I did in fact have the virus, I was like, okay, I'm going to be okay. I'm in the hospital. If something happens to me, I'm already where I need to be so that they can take care of me quickly.

Coming home, I think I was too tired, too exhausted to even think about, oh, we have to disinfect this, we have to do this, we have to do that. I was just too exhausted to do any of that or to think about any of that. It actually took almost a week to be able to get out of bed and clean and disinfect everything correctly. I think I was more worried for my husband and my father-in-law, who also lives with us, who also got sick and ended up in the hospital the same week I did. My father-in-law was only in the hospital for two days.

I think in the beginning when all this was starting, I was like, I can't get sick. I'm going to die. I can't get sick. Something bad will happen to me. But once I did get sick, I was really calm, which really surprised a lot of people, because I'm very dramatic. It did dawn on me like while I was in the hospital, wow, this could really get bad, but thankfully it didn't. I really have a lot of faith in my doctors and what their plan for me was. It wasn't like I was going to an ER that didn't know my condition or had no clue how to deal with a PH patient. I went to where my doctor is an attending. If I would have ended up at a hospital here in the Bronx, I think I would have panicked more.

What my PH doctor has told me is that chances are I will not get sick again. Eventually, they will be testing me for the antibodies. She really doesn't want to retest me, do the COVID-19 test again, because of the fact that people are still testing positive 30 days after testing positive initially. What we are going to do I think within the next week or so is redo the x-rays of my chest to see how the pneumonia is doing. She said that there aren't enough studies to say, "Okay, you won't get sick again, or you'll be okay for the next year or two." I'm hoping that we won't get it again. If we do, it'll be a mild case of it, but we don't know.

If I had to give a PH patient advice about this disease, it would be don't panic and trust your doctors. Do what they tell you to do. Be very careful if you have to go outside, or if someone in your family does all the errands for you, just take the necessary precautions as far as disinfecting after them.

I will say that my faith helped me through it, because my mental state would have been horrible if I didn't him pray a lot during these times. I think that's what some of us are doing. Because of what's going on, some of us need to be able to control our surroundings, our situation. For me, praying is very essential. I think that's what helps me not panic.

My name is Laura Rivera, and I'm aware that I'm rare.

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