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) but still scary if you are not aware of it. It’s something no one is talking about right now as there seems to be limited data about these milder cases as many are being misdiagnosed as something else. To ensure our children are safe as daycares, summer camps and playgrounds open, 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, more regionalized 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 when 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.

My husband had fever the first day only. He had tremendous body pain so much so that he was unable to sleep comfortably for a week. Getting out of bed and walking to the bathroom was a struggle for him. He also had dizziness, migraines, and was fatigued very quickly — even from being 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 year 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 did, I could not breathe deeply. I made an appointment at the local CityMD and got a chest X-ray. They confirmed that I had Covid-induced pneumonia. I managed to borrow an oximeter from friends which showed 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. 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 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 cried when I walked back into the door of our house. I was so thankful to be home with my family…but it wasn’t over.

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 saw ground glass opacity and 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. This time, in the ER, I was more alert and heard stories and saw faces of people. It was a traumatizing experience and I still pray for the health of many of them.

It wasn’t until the 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 came out with more studies on the serious impacts of Covid but I tried to stay positive. I avoided the media, articles, social media — or at least try to — because the only topic the world can talk about is Covid. Social media, even the support groups are filled with sad stories of those who didn’t make it. Your recovery becomes 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 a family friend, 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. Doctors often don’t fully understand the symptoms either. The long lingering aches and pains of Covid can be diagnosed as anxiety and trauma.

They say it comes back if you don’t take the time to recover. For the pneumonia, it takes a minimum of 6 weeks to fully 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 over 8 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. My sense of smell is only now slowly coming back.

THE KIDS (PART 2)

As I mentioned, kids can be impacted by Covid twice. The first which is the expected reaction to the virus and the second is their delayed immune response to it 4–6 weeks later.

Initially, as I mentioned before, my older (5.5 years) son never had any symptoms at the time and my younger son (1.5 years) had a 24 hour low grade fever. (Many moms have told me that their kids had much harsher Covid symptoms when first infected. These symptoms often lasted for a week or more and included fever, vomitting, diarrhea, and coughs).

Fast forward to about 5 weeks later: my 1.5 year old had diarrhea for a week and also kept waking up in the middle of night. Then one night he woke up himself with terrible wheezing. Our hearts sank. 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 asked my husband to take 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. The next day my older son got the rash on his cheeks and it soon spread to stomach and chest. We spoke to our pediatrician again 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. She alluded to a 95 page document with viral rashes associated with this post-Covid inflammation. I also 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 — it was apparent that they were aware this was starting to happen to the kids.

Due to the fact that children were having a delayed immune and inflammatory reaction — they were only seeing the trends now — in real-time. Even now, they still don’t know the full impact or implications — the pediatricians are also learning as they go. We are lucky that our pediatricians office has doctors who have their pulse on the latest research that is coming out about Covid. There are so many stories I’ve heard of kids being wrongly diagnosed with something else because the pediatricians still don’t know — and Covid symptoms can and often look like something else. Many moms whose households have had Covid have shared with me their kids post-Covid symptoms — most common are those who have had fever and rash that starts on the cheeks. Their kids have been diagnosed with Hand, Foot and Mouth or Roseola even though these are viral illness and their kids have been away from other kids. Our pediatrician told us about a multitude of symptoms they have seen in kids from rashes to Covid toes. One patient had a stomach ache for 2 months but tested negative for Covid and antibodies but the mother was positive for antibodies. They never were able to find out what happened. I also spoke to a pediatric ER nurse recently who noted they are seeing neurological issues in children with Covid. This is still unreported in the media and not known in the 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.

I put my kids on an anti-inflammatory diets and they took over-the-counter antihistamines. I checked their temperature, oxygen and heart rate everyday. I watched the rash closely to make sure that it remains the same and does not turn it into MIS-C.

Now, the rash has gone down, but even 4 weeks later, it still flares up once in a while so we are still riding it out.

STRANGE ANTIBODIES

My husband I were finally tested for antibodies and we were positive. Concerned about our children, we had them take blood tests to check their CBC, ESR, CRP levels to confirm their health and rule out any inflammation cause by the virus. Both my sons’ levels came back normal. My younger son tested positive for antibodies but my older son tested negative. We were prepared for this scenario as we have heard so many cases like this where the whole family gets the virus but not every family member gets the antibodies. Our pediatrician still believes that the rash my older son had is post-Covid related. She thinks perhaps the antibodies in some could be shorter-lived. Another doctor who I spoke to at CityMD noted that for milder cases of Covid, they have seen that people not develop any antibodies. I have also heard of cases of people with harsher cases who also did not get the antibodies. All this proves that there is still so much unknown and yet to learn about this novel virus.

As survivors of the first wave, my hsuband and I plan to donate plasma. I have also given interviews and access to my medical files for research in hopes that it will help treat future patients.

WHY I WROTE THIS

Restrictions are easing up and lockdowns are being lifted, but with no proven cure or vaccine, new cases and hospitalizations are increasing throughout the globe. As we prepare to go back to “normal”, we wanted to remind people that this virus is still out there and is a potential danger to anyone who encounters it. We hope that our cautionary tale and brutal battle with this potent novel virus will urge you to do your best to stay safe and not take your family’s health for granted.

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 and months later — these “long haulers” suffer 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.

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.