The below account is from a very dear friend (…like family..) who I have known for a decade. We met at the Zoroastrian Association of Greater New York (ZAGNY) and have over the years volunteered together on community projects and events, too many to list. She requested to remain anonymous.
WRITTEN BY A MOM FROM THE NY/NJ AREA
MY FAMILY’S COVID EXPERIENCE
I’m one of the cases people need to hear about — not because I’m special in any way but quite the opposite – because I’m the random 40 something year old without any underlying conditions who ended up in the hospital. Make no mistake, my novel immunity was brutally and hard fought for.
More importantly, my kids got Covid related rashes 4-6 weeks later (not Multisystem Inflammatory Syndrome in Children (MIS-C) or Kawasaki Disease but still scary) – something no one is talking about right now as there seems to be limited data but something we need to be more broadly aware of. Our city officials need to be in active communications with not just government organizations but also with our local pediatricians for them to make informed decisions to open up cities.
WHERE DID WE GET IT?
We got Covid the week of April 5th. We don’t know how we got it as we didn’t leave the house since March 13 – when we last picked up our kids from daycare. We were isolated with no human contact. We wiped down every single FreshDirect item and threw out Amazon delivery boxes and packaging at the stoop. We are particular people who generally err on the side of overcautious, perhaps verging on the point of paranoid :). As we look back, there were very few possibilities – my husband touched something outside and accidentally touched his face, or a delivery person coughed in our building vestibule right before we picked up boxes – but nothing we can point to and say that was the reason it happened.
STATEMENT 1: MEN GET COVID WORSE THAN WOMEN
FOR OUR FAMILY: FALSE
The first thing to remember is that this bug affects people very differently. My husband and I had very different manifestations but the two things we had in common were the low grade fever and the loss of our sense of smell.
He had a low grade fever the first day only. He also had tremendous body pain so much so that he was unable to sleep or get out of bed for a week. Getting out of bed and walking to the bathroom was a struggle for him. He had dizziness, migraines, and was fatigued very quickly – even from sitting in bed all day.
STATEMENT 2: KIDS ARE MINIMALLY IMPACTED
FOR OUR FAMILY: TO BE DETERMINED – OUR KIDS DEALT WITH COVID RELATED ISSUES 2 TIMES
My children got it two days after my husband even though he isolated himself immediately. My older child (5.5 years old) had no symptoms but my younger 1.5 year old only had a low grade fever for a day. Our GP told my husband that he was contagious 2 days prior to the fever appearing, so likely the kids got it from him.
This was the only first part of the Covid impact for our kids – see further down for the second part.
STATEMENT 3: PEOPLE WITH UNDERLYING CONDITIONS GET IT MORE INTENSELY
FOR OUR FAMILY: FALSE
First, I want to note that I have NO underlying conditions. My husband does – he has high blood pressure but managed to kick this in 8 days. I got it a day after my kids, I was the last one in the house to get it. After seeing how quickly it passed through my husband and kids, I was convinced my impending illness would be quick and painless.
However, my experience proved to be more insidious. I was fine-ish for the first few days – I had a low grade fever and lightheadedness – and I was still hopeful that this was the extent of it but by the fourth day it felt like someone had locked up my lungs. There was a cage around my chest and no matter what I tried, I could not breathe comfortably. I made an appointment at the local CityMD and got a chest X-ray. They confirmed I had Covid-induced pneumonia in my chest. I got an oximeter from friends which showed me that my oxygen levels were dropping every day. Finally when it was dipping under 90, I video chatted with my GP and decided to go into the hospital. So many thoughts go through your head when you leave your family’s home to go to the hospital and turn to battle the unknown embodied in a virus like this. It’s hard to forget that moment.
My GP is part of NYU Langone hospital system, so that’s where I went. Dilshad Marolia, part of our ZAGNY community, works at NYU and was an incredible resource who went above and beyond to support me (and my husband) through this time. I will never forget her unwavering and critical advice, support and strength.
I had my own private room in the new wing – it was on the Covid-converted children’s floor. Like the room, many of the nurses and doctors who watched over me were from different specialty areas. At the hospital, I took four medications – Zithromax (antibiotics), Lovenox (blood thinner), Hydroxychloroquine and zinc. The truth is there is no proven medication against the virus. I was getting oxygen through tubes in my nose but still not able to breathe comfortably on my own. I had bad coughing spells so bad it took me several minutes to regain my composure. My stomach was off the whole time from either the Covid or the medication or both. I lost 15 pounds in only a few days. I forced myself to eat. The health care professionals who took care of me motivated me to stay positive – they opened my curtains every morning, taught me critical breathing exercises and made me smile even when I felt terrible.
Finally the fever broke a few days later and I was able to breathe more and more without high levels of oxygen support. I was discharged after being there for almost a week. I thought it was over and was so thankful to be home with my family.
A few days after I got home, I had pain in my left lung. My doctor was concerned that I had a pulmonary embolism so he sent me back to the ER. After blood tests, x-rays and a CAT scan, I was sent home the same day. They said the pain was caused by the inflammation due to the Covid still in my lungs. I had so many questions but the thing about this journey is that it was filled with so many unknowns – the doctors will directly tell you that they are still learning because they just don’t know. This time, in the ER, I was more alert and heard stories and saw faces of people in the ER. It was a traumatizing experience but I wonder about the health of many of them still.
It wasn’t until the 3-4 week mark that I was able to move around easier without being exhausted or feeling my heart race. At 5 weeks, I was better and had good days but some days I was completely wiped out. Having a racing heart, random pains in your legs, head, nerve pain, random rashes – and not understanding what they are is very scary considering the latest information around the association of Covid with heart attacks, clots and strokes. The question that always lingers is – do I go to the hospital or is this part of it all (and am I overreacting?). Everyday articles come out with more studies on the serious impacts of Covid but you try to stay positive. You avoid the media, articles, social media – or at least try to – because the only topic the world can talk about is Covid. It became a mental game as much as – if not more – than a physical one. Being sick for so long when you are young-ish and healthy… and not getting better faster than you are used to is truly frightening. During this time, I spoke to Jehangir Madon, a family friend from ZAGNY, who was a few weeks ahead of me in his recovery of the same Covid-induced pneumonia. His ability to relate to my experience and calmly offer advice from his recovery became a critical motivator for me. Throughout this journey, he was a North Star and I can’t thank him enough for his positivity.
I spoke to my GP every week, sometimes twice a week on bad pain weeks. There is only so much even a great doctor can diagnose over a video call and with limited medical data. For the pneumonia, it takes a minimum of 6 weeks to fully recover. They say it comes back if you don’t take the time to recover. How do you know you have recovered? There is no protocol for a recovery follow-up except getting retested but what if you have clots or heart damage? The hospitals are so jammed with reactive, fresh and serious cases, that they are unable to support these longer recovery paths. Also the truth is – no one knows the long term impacts of this on adults and kids.
I’m nearly at 7 weeks and finally feeling more like myself. I’ve lost over 20 pounds in a matter of weeks but I’m stronger physically and more importantly, mentally.
THE KIDS (PART 2)
As I mentioned, my older (5.5 years) boy never had any symptoms at the time and my younger son (1.5 years) had a 24 hour low grade fever. Fast forward to about 3.5 weeks ago. My 1.5 year old had diarrhea for a week and also kept waking up in the middle of night. Then one of those nights he woke up wheezing. We did a video call with our pediatrician and they said take him off dairy and from the sounds of it (he was crying during the call) that he didn’t have anything in his chest, just a little congestion. A few days later he developed the rash on his face and hands. The next day the rash on the hands looked red, bumpy and was peeling. I panicked and that day my husband took him to NYP Weill Cornell hospital in NYC. As he had no fever, fatigue or vomiting, they took his vitals and sent him home and told us to call our pediatrician because he seemed like he was on the other side of whatever it was. The next day my older son got the rash. We spoke to our pediatrician and they said the rash is a immuno-inflammatory response to Covid. They told us that they have been seeing this across kids 4-6 weeks after initial exposure to Covid (that was the exact timing for us). The pediatrician we spoke to said there is no specific rash they are identifying but a lot of different ones that are typically viral even though kids are not in contact with other kids – she alluded to a 95 page document they have with viral rashes associated with this post Covid inflammation. After which, I spoke to 5 pediatric medical professionals that week from NYU Langone, NYP Weill Cornell and our pediatrician, and they all confirmed this as a mild Post-Covid Inflammatory response in kids.
The problem is due to the fact that children are having a delayed immune and inflammatory reaction – they are only starting to catch the data now – in real-time. Right now, they still don’t know the full impact or implications – the doctors are learning as they go. I spoke to a pediatric ER nurse recently who noted they are seeing neurological issues in kids with Covid. This is still unreported in the media and mainstream. Just like the Covid in adults, the hospitals are dealing with serious cases and the mild cases are sent home with over the counter medications – not to treat or cure it but just to provide relief for the sufferer.
My kids are taking over-the-counter antihistamines and the rash has gone down but it also flares up once in a while so we are still riding it out.
I tell this story because like many, I thought that only the individuals with underlying issues and the elderly are hit hard by this. I learned first hand that this was not true. I’ve seen how dangerously underestimated disease with my own eyes at the hospital. I’ve learned even more about it from being a part of Survivors groups. Many survivors are struggling with symptoms, even weeks later – from headaches, nerve pain, rashes, breathing difficulties, heart issues, clots or permanent chronic damage from their experience with Covid. I know that I was extremely lucky and for that I am forever thankful.
The ZAGNY community was a source of great strength (and even food) for us during those tough days. I am so thankful for so much and so many including the angels here (thank you, you know who you are) and beyond who watched over me. I have looked into the eyes of those on the frontlines who sacrificed their own health to make sure I was fighting my best fight. I am forever thankful for them. I really was one of the lucky ones. Now, I will hold my husband and children tighter, and I will breathe more deeply than ever.