Hallucinating & Hypertensive: A Long COVID Nightmare
Image courtesy of Mariana Pineda
Featuring Mariana Pineda, a New York teacher, single mom and Medicare for All activist who’s been struggling with Long COVID for the past year. How’s her health insurance working out for her? Listen and learn!
Transcript of podcast By Brenda Gazzar
Welcome to Code WACK!, your podcast on America’s broken healthcare system and how Medicare for All could help. I’m your host, Brenda Gazzar.
How are those with long COVID being affected? How are COVID long-haulers managing health-wise and financially under our current healthcare system? We spoke to New York teacher, single mom and Medicare for All activist Mariana Pineda about her extraordinary physical, financial and emotional struggles more than a year after contracting COVID.
Welcome to Code WACK! Mariana.
Thank you.
Q: Today’s your birthday so wishing you a very happy and healthy birthday. Tell us a little about yourself and where you live.
Pineda: Ok. So I live in Suffolk County, on the south shore of suburban Long Island in West Babylon. I live in a mother-daughter house with my mom and my stepdad upstairs, and I’m a single parent. I have four children.
Q: You were diagnosed with COVID-19 and pneumonia in April of 2020. How has that diagnosis affected you physically and emotionally?
Pineda: Up until April I was a public school teacher. I was at Roosevelt High School in Nassau County, and I had started that September, and taught there September through February and then March, they closed the schools so we went remote, and I was remote March, April, May, June, but I got COVID and missed about a month of work, and then went back to school in September, and then had a pulmonary emboli provoked by COVID, and I haven’t, unfortunately, been back to teach since September. I haven’t worked since September. I haven’t gotten a paycheck since October. I had to start paying for COBRA in November, which was $3000 and change a month, and that does not include vision or dental. So I paid $3,000 a month to keep my employer-sponsored health insurance but I can’t get these two holes in my teeth repaired because I don’t have dental insurance, so I have to avoid chewing on this side of my mouth because it’s painful, and I have to go with these old glasses, which probably the headaches might be partially related to but I don’t have vision insurance, and I wasn’t eligible for unemployment. I applied for it and I didn’t get it because I’m sick. I’m sick with long COVID. So, I can’t work so I can’t get unemployment because technically I’m not unemployed.
I applied for New York State Social Security disability like with federal disability, and it was denied. They said I can do different types of work. I don’t have to go back to my regular job that I can no longer do. I can find light work that requires minimal standing, minimal lifting, so I don’t know if any of your listeners can think of a job that provides good health insurance with dental and vision that is not physically taxing and that would still pay $64,000 a year and that the only prerequisites are those one would have to become a teacher, you know, please let me know because, apparently, Social Security Disability is very confident that it should be no problem for me to find gainful employment at my old wages, you know, with these current new parameters.
Q: Wow, so how did you manage to pay more than $3,000 a month for your COBRA?
Pineda: When I was better but financially stressed, one of my good friends Katie, who has organized with PNHP Metro and the Campaign for New York Health, she started this GoFundMe to cover my COBRA and we raised over $12,000 and a lot of that money came from people within the Bernie Sanders campaign community and people within the New York Health Care Act and Medicare for All community.
But you know what? If we had Medicare for All, we wouldn’t need no stinking Cobra. If we had the New York Health Act, there would be no COBRA because our health insurance would not be tied to our employer, which is one of the most important takeaways from all of this. How many people lost their jobs during COVID? How many people lost their employer-sponsored health insurance during COVID?
I have friends who didn’t see their cardiologist and didn’t refill their blood pressure medications for most of the pandemic because they were home unemployed (and) ineligible for their employee-sponsored health insurance, but we had no idea how long this would last so a lot of people who probably should have applied for Medicaid right away didn’t. And so yet again this highlights how employer-sponsored health care is just a terrible, terrible idea.
Q: What were you going through physically? Why was it so important for you to be on COBRA insurance during that time?
Pineda: After I came out of the hospital in April, I continued to struggle with a lot of things but in many ways, I felt better and I was starting to work at my friend’s farm stand and I was doing okay but there was a lot of heavy lifting. It was an entirely an outdoor thing but every day, it was a little bit harder and I was getting very tired standing and I was getting very short of breath and my blood pressure just kept getting higher and higher and it didn’t matter how many different pills they put me on, I wasn’t okay. I quit the farm stand. I had a miscarriage and then in September, I was really, really struggling to breathe. I taught for two days remote, and then that weekend, I was getting increasingly uncomfortable. And finally, I drove myself to the emergency room.There’s no parking by the ER door so I had to park in the back of the hospital and then walk from my car to the entrance and I didn’t trust my body. I didn’t think I could make it from the parking lot to the door and it was now nighttime at this point and dark and I was scared to collapse in the parking lot and maybe get hit by a car so I waited in my car overnight until it was light out because I felt embarrassed calling 911 from the hospital parking lot — you know who does that? — so I just waited it out and I became hypoxic and I was hallucinating and I went into organ failure.
Q: Ugh, that’s so hard!
Pineda: And so by the time I finally dragged myself from the car to the front doors of the hospital, I collapsed in a wheelchair, they took me into triage and they did an Xray and they discovered six blood clots in my lungs. And there was a two-inch clot that was the largest one and that was lodged in my pulmonary artery and that’s why I was going into organ failure and was hypoxic. If I hadn’t gone to the emergency room, I probably would have died at home and I probably should have called 911 and gotten into the hospital sooner but we did the emergency surgery. It was called a manual thrombectomy. You are awake during the procedure and you see it on the screen. They go in through your groin into an artery and it’s this little wire with a little grabby hook, kind of like a tiny claw machine, and they would just go in and grab each blood clot and then shoop, pull it out of you from your heart and your lungs down through your groin and then they would pull it out at your groin and they did that six times.
Q: Wow.
Pineda: That’s what really wrecked me healthwise. After that procedure, I was in the ICU for a couple of days, then I was in the regular unit for a couple of days and then I was discharged and I needed a walker and I needed a shower chair. And I still use a walker and shower chair now. Unfortunately, sometimes I have incontinency issues but fun fact, the insurance covered the walker but the insurance wouldn’t cover the shower chair, and wouldn’t they cover the adult diapers even though both are required post-COVID, post pulmonary embolism but the insurance isn’t going to pay for those.
Q: I’m so sorry Mariana!
Pineda: But we paid $3,000 a month for the COBRA so originally I didn’t think that I had Long COVID. I just thought that his surgery kind of wrecked me. With the pulmonary emboli, the recovery time can be anywhere from a couple of months to two years. Some people recover very quickly and go right back to work and some people have all kinds of other complications. And I had already been having the blood pressure and the heart rate issues and this was just what threw me over the edge. But originally, I really thought that I’d be going back to work in October so we just signed up for the COBRA for one month. I didn’t want to apply for Medicaid and lose my health insurance and then be uninsured for a few weeks while I waited for the Medicaid and then what if all my specialists like the cardiologists and pulmonologists if they don’t take the Medicaid insurance so I didn’t want to mess with the insurance. I didn’t want to risk not getting a prescription refill. I didn’t want to risk not being able to see the same doctors in the same practice. I was scared and I also thought that I would be better next month and the next month we thought I would be better next month. And instead, we’ve discovered that my kidneys are covered in lesions and I have chronic blood in my urine. We found two fibroid nodules that were biopsied. They came back as atypical cells so they were inconclusive..so then they sent me for gene testing and that came back inconclusive so now we have to repeat the biopsy every three months.
And then my mild to moderate asthma is now moderate to severe asthma, and I’ve been diagnosed with COPD and emphysema. I still have ongoing tachycardia. I still have ongoing hypertension. Now I’m pre-diabetic and people treat you differently when you have Medicaid vs. when you have good insurance, and I have experienced firsthand the difference in how they treat Medicaid patients. You are second-class citizens oftentimes when you are getting medical treatment, and knowing that I didn’t want to give up my good teacher health insurance, and be a Medicaid patient, because I knew that they get treated differently. I didn’t have a primary care doctor at the time of my pulmonary embolism. And so I just went to my local community clinic, the Martin Luther King clinic in Wyandanch and they are just so lovely and so kind and so welcoming, but they’re so overworked that things would fall by the wayside and my referrals wouldn’t go through and I would have to go into the clinic and sit for two hours with a patient navigator with me on my phone and her on her phone, and one of us talking to the insurance and one of us talking to the specialist and manually putting in the referrals. So, getting my treatments approved by the insurance company was like a full-time job.
Q: Stay tuned to our next episode when Mariana shares more of her story.
Find more Code WACK! episodes on ProgressiveVoices.com and on the PV App. You can also subscribe to Code WACK! wherever you find your podcasts. This podcast is powered by HEAL California, uplifting the voices of those fighting for health care reform around the country. I’m Brenda Gazzar.