Updated: Jul 13, 2021
During this horrible time with COVID-19, Andréa Ceresa has been blessed to be able to spread the word regarding her experiences as a COVID-19 Long-Hauler and has done multiple interviews with CNN with Chris Cuomo, Good Morning America, Time Magazine, Today, The Doctors, Inside Edition, CNN New Feature, Fox LA, CBS San Diego, Richard French Live, and News 12 with Elizabeth Hashagen.
Photo credit: Chuck Capriola
Andréa Ceresa, 46-year-old Dental Office Manager and Singer, (Branchburg, New Jersey)
My COVID-19 story (or should I say nightmare) began on April 17th, 2020. I woke up on April 17th feeling very flu-like. I had a sore throat, severe stomach pains, and an extreme headache. I also was experiencing a little shortness of breath.
The evening before, I had performed a Facebook Live singing performance and was feeling very tired. When I spoke to my mother a few days into feeling sick, she said when I was doing my live performance, she noticed that I looked very tired and was very out of breath, while singing. On the 19th I was feeling much worse and had already begun to seek medical treatment. My stomach was getting worse and I was trying to figure out where to seek in-person treatment when I didn’t make it to the bathroom and lost control of my bowels.
I had called to set up a Tele-call with my PCP’s office on the 18th. He thought that I might have contracted the flu. Due to the Coronavirus pandemic, his office was not seeing patients in person, but he said that if I was still feeling sick I should go to Urgent Care. That’s when I got sick, as described above on the 19th and knew there was something much worse going on.
I called the Urgent Care, to be sure that they were taking in-person patients, and they screened me over the phone and said I had to call the COVID hotline at the hospital, to get clearance to come to their office. I called the hotline and was told that I had the option to either see them in the tent, outside at the hospital (Hunterdon Medical Center) or to go into Urgent Care. I asked about getting a COVID test and the hospital told me that it would depend on how the exam went. They were asking if I had a fever, which I did not. After speaking with the hospital, I decided it would be quicker and easier to go into Urgent Care. I called UC back and told them I had clearance to come in. Before driving there, I asked to be sure that they had the nasal swabs tests available, to detect for the virus. (I definitely wanted to rule out COVID-19) She put me on hold, came back, and said "yes, we do have the tests and you can most definitely be tested here".
After examining me, the Urgent Care doctor said that it was most likely a viral infection, but didn’t know what exactly it was. I asked again about getting the COVID swab, and he said, "you have no fever, and we are saving all the tests that we have for healthcare providers". I explained that part of the reason that I chose to come to them rather than go to the hospital tent was that I had been told by the person who answered the phone, that I would be tested at their facility. (I would have gone to the hospital tent if I had known that I was not going to be tested there.) He told me that the hospital was doing the same thing and that all Hunterdon County facilities were saving all tests on hand for healthcare providers only.
I was handed a paper with information about COVID-19 and sent home. I then had several calls with my PCP's office the following week. I was finally tested quite a while after I had gotten sick and received a negative result. The doctor felt it was a false negative based on my symptoms and diagnosed me with COVID-19. I also tried to get a second test at one of my ER visits and the doctor said no because a lot of the tests were inaccurate and based on my symptoms, it was clear that I had COVID, and no test was necessary to diagnose me with the virus.
During my months of being ill, I went to the ER 4 times. The first two times were at Hunterdon Medical. The third time, Morristown Medical Center. the fourth time was RWJ University Hospital. On my fourth visit, I was taken in an ambulance because I could not get out of bed due to a severe migraine-which was the worst I had ever had in my life, and I could not stop throwing up. (In the back of my mind, I was so afraid I was having an aneurysm or stroke; something serious- it was very scary!)
From the time of my very first symptom on April 17th, for around 65 days, I experienced stomach aches, severe stabbing stomach pains, diarrhea, sore, throat, chest tightness, body-aches, and flu-like symptoms. I had severe diarrhea and GI symptoms for the WHOLE 65 days. As a result, I saw several doctors in my PCP group: 3 different gastroenterologists and an infectious disease doctor, in a month and a half. I underwent every test you can imagine, including stomach x-ray,s ultrasound, CT scan, endoscopy, colonoscopy, biopsies, stool tests, and extensive blood work, on top of labs ordered by PCP and the ER. The preps for the tests were breaking down my body even more.
The last gastro doctor that I saw said he thought it must be post-viral/COVID IBS and there wasn’t much he could do. He stated he would discuss with his colleagues and “wouldn’t let me go without figuring it out". Against his word, he released me about an hour later; It was then that I realized that it was now in my hands to figure out why I was so sick, as well as how to get better.
I decided to turn to integrative medicine. During my whole COVID journey, my integrative doctor has helped me the most during this time. She has worked with me to figure out what medicines have been working and which have possibly been making me sicker, or having interactions with other medications. She sent me to a hematologist for iron infusions as I could not absorb, nor handle it in my digestive tract and my iron level was dangerously low. She feels as if my immune system is completely depleted, which is making it impossible to fight this disease. We are working on building it back up.
I’ve lost so much weight, that I’m malnourished and dehydrated. I’m having a hard time keeping anything down, and I don’t have an appetite to be able to eat anything.
I was so sick and out of it during all of this, and my mental state was extremely poor. I began seeing a therapist. I had quarantined away from my fiance', Denise, for 45 days, in the spare room, and came out only to use the bathroom. Even though we weren’t sharing the same bathroom, I was bleaching it every time I used it-which was up to 10 times per day, just to be sure to keep her safe.
At the writing of this story, September 29th, I have been sick for 166 days. I have seen the following doctors since this nightmare began on April 17th: ER 4 times, 3 gastro doctors, infectious disease, PCP group, integrative doctor, licensed clinical social worker, ENT(had hearing test-significant loss in left ear-having a brain MRI this week and a balance test next week), hematologist(iron infusions), cardiologist (wore monitor for 48 hours, had an echo, and am waiting on results), MD who specializes in biomagnetism, had an evaluation at Mt. Sinai Post COVID Center, have a follow up with them this week and neuropsychologist visit on Friday of this week. I am scheduled with a neurologist in 2 weeks, another gastro in 2 weeks, I also spoke to a doctor at Hackensack’s Post COVID Center (of which I found out is not actually a center-they don’t know much about COVID-19; I’m not sure what they’re doing there). I have been referred to an acupuncturist, a breathing therapist, and a physical therapist.
I have been diagnosed with all of the following conditions: post-viral hearing loss, IBS, POTS, dysautonomia, and PTSD. My after-effects and lingering symptoms include diarrhea, nausea, constipation, other GI issues, hearing loss, brain fog, neuropathy, blurry vision, dizziness, heart palpitations, and racing heart, migraines, rash, hair loss, sun, and heat sensitivity, tremors, muscle weakness and aches, loss of appetite, weight loss, panic attacks and anxiety, low blood pressure, COVID tongue (white with blisters), severe dehydration, phantom smells and I have a constant metallic taste in my mouth. I also have a heightened sense of smell and smell phantom smells, such as cigarette smoke and gasoline. A few weeks ago, I was taking one of the powdered supplements that my doctor prescribed for me and I noticed that the smell was very strong. I realized then that I may have lost my sense of smell at some point.
My insurance company, Horizon Blue Cross sent out a mass email at the beginning of the pandemic, stating that co-payments would be waived due to the Coronavirus pandemic. The whole system for coding and billing and how offices and ER's are handing this is incorrect. Regarding the four ER visits, some code it as COVID-19 and I don’t get billed, and some don’t code it as COVID-19, and I do get billed- (even though I was clearly treated as a COVID patient, being wrapped in a sheet as I was wheeled into the hospital, and a STOP sign placed on my door. Horrible and scary). Now, magically, as of August 31st, they've decided COVID doesn't exist, so no more co-pay waivers.
I’ve spent numerous hours on the phone with my insurance company, and numerous hospital and doctor office billing departments, going over EOB’s and codes. I have been a Dental Office Manager for 22 years, and I do dental insurance billing for a living; at least I did before I became disabled. I can generally navigate myself through bills and EOB’s very easily, but this is a completely different ballgame. Our healthcare system is not prepared for this.
I stopped working on March 17th. I became ill on April 17. I lost my insurance due to being unemployed and had to start paying Cobra on May 1st. Aside from the Cobra premium, the expenses are astronomical, and quite frankly, adds another level of stress. I have high deductibles, plus hospital and procedure bills, doctor and prescription co-pays, and the cost of seeing out of network doctors. Due to restrictions on my Horizon Blue Cross Blue Shield plan, I have no out of state benefits, which means I have no benefits to go to Mt. Sinai. I went to my evaluation and paid out of pocket, but began searching for more doctors and more post COVID centers in my state. I discovered Mt. Sinai is truly the best treatment option, as their center seems to be the most comprehensive treatment available. I was lucky enough to be able to get into their center, as they are in such high demand at this time due to so many experiencing post-COVID symptoms. I continue to pay out of pocket for my visits there. I have an upcoming neuropsychologist appointment at Sinai as my cognitive and other neuro issues have become severe. The initial exam and 12-hour testing are upward of $5,000. However, at this point, I’ll do anything to get answers and feel better.
I finally had to sign up for the Affordable Care Act, because I could no longer afford my Cobra premium. Now, I fear that I will be losing this insurance, due to the impending change in our Supreme Court and the fact that I am now a patient with pre-existing conditions. I have never had to worry about this before in my life, and I am petrified.
Coronavirus has affected everything in my world. I feel like I have completely lost my life. I cannot work, can’t drive to my own appointments, and most days, I don’t do anything but lay on the couch or in bed. I was a healthy 46-year-old with no pre-existing conditions, before this, I had never been sick. I have become a completely disabled person. I still suffer from after-effects of 24-hour nausea, GI symptoms, hearing loss, brain fog, and neuropathy.
My life prior to COVID-19 was a great life. Since being sick, I have had an incredible support system through family, friends, community, and without a doubt, my fiance', Denise. I am blessed to wake up to her every day of my life (And to our fur-baby, Bella too, of course). Without Denise, I don’t know that I would be alive today. I cannot drive, she takes me to every appointment and waits outside for me. She shops for me, cooks for me, basically waits on me hand and foot. For someone who was completely independent before all of this, having to rely on someone, like I am, is so scary. It makes me feel helpless. My mother Marge lives in the same town, and I have 2 sisters, Nicole and Danielle. (as well as brothers-in-law and 3 nephews and 2 nieces) I have an incredible family and support system and am grateful for all of them.
Denise and I were engaged on March 2nd, right before the pandemic! The best day of my life. Some days I don’t even know if I will make it to my wedding day. I have completely lost my life. I cannot work. I cannot sing. Most days, I don’t even leave the house. I feel like there’s no end in sight. No answers. This virus is crippling me and I don’t know if these symptoms are reversible or if the damage is permanent. I am 46 years old and was an extremely healthy woman, who up until a few months before the pandemic began, was up on stage singing my heart out.
Prior to getting sick, there were so many people who were so scared and feeling low during the quarantine. I felt so strongly about being safe and staying home. I was asked by several people if I could do a Facebook Live session, and sing. As I usually sing with my band or my best friend on guitar, it was a little different for me to do it alone. It was such an amazingly uplifting experience for me to perform and spend time with loved ones, even if it was through a video. I felt I was helping to connect everyone and for an hour, just to give everyone a little sense of hope and normalcy to this scary time. I decided to use my voice to tell people they weren’t alone and raise their spirits. Thursday nights became Andréa’s Live night and people were sharing it and watching, while they were eating dinner, and some were referring to it as a show. As I said above, the last one I wasn’t feeling great and Denise said, just cancel, and I said "NO, people are relying on me, people need this!" The next day I woke up sick.
During my time in quarantine, I found support in the online Facebook group, Survivor Corps; I was at my lowest point. I was losing hope. My father, my best friend, had passed away 6 years ago from cancer. I have asked him on several occasions if he would just please take me to him because I was just so sick and in so much pain and I didn’t think I could handle it anymore. I realized at that point, that I needed to use that voice that he and my mother gave me to sing, now to advocate. I needed to make the world understand what this virus is really doing to people, and I will not stop until we are heard.
I urge people to take this virus seriously. Wearing a mask and social distancing can save lives. Not just yours, but those you love and care about. This is not the simple flu, and it doesn’t just “go away”. It knows no race, color, gender, age, or social status. You can be a very healthy person and still get sick. It attacks every part of your body. It has damaging, debilitating effects that may be permanent. It is not just a respiratory virus. You also don’t need to have a fever to be sick. I never did. And as sick as I am, I am one of the lucky ones. I’m alive.
One of my interviews on the Chris Cuomo show- Chris is also a Long-Hauler
Here is the link to my "Go Fund-Me page, started for me by my loving cousins! I am so grateful for all of my family members and friends, as well as total strangers who have shown how much they care about me and who are standing by me, during this challenging time in my life! MY HEART IS FULL!!
Me, at my sickest point, down 30 pounds.
The love of my life and my best friend, Denise.
My father John, I love and miss him so much! He is with me through this difficult time, I feel him!
Denise & I on our perfect engagement day
Our Fur-baby, Bella
My mom-Marge, me, and my sisters, Nicole and Danielle on a beautiful day, before COVID touched my life.