Tuesday Block 1

Covid long haulers, thousands of patients who worst symptoms may have passed but the lingering effects can be felt every day.

Joining us with her story is sarah simon, nurse and biologics coordinator for serology and asthma.

And good to see you.

Good to a see you too.

Leyla: so you contracted covid and when did you get sick?

So i got sick with covid at the end of june, and i came down sick two days after going in for a hand surgery.

That was late june and can how are you today?

I'm still having a lot of issues, i struggle with high heart rate.

And the second the heart rate goes up, i get shortness of breath and chest tightness, extreme fatigue and gi symptoms, and neurologically, the brain fog and trouble remembering things.

When i talk in conversation, it's hard to recall words sometimes, and it has been a journey and still having a lot of issues.

Leyla: and you were a very healthy woman before.

Yes, healthy.

I just turned 38 last week.

Super active, constantly on the go.

Whether it's going out kayaking, to the beach, i was very active constantly.

And this has been devastating to my life to say the least.

Leyla: so it hit you like a ton of bricks and have you been able to go back to work?

I've been very lucky.

Charleston allergy where i work, they have been fantastic.

I've been able to work from home and they found jobs for me.

A lot of people are not as lucky as i am, that are told by their employers, they have to come back to work when they basically can't function.

I've tried to go into the office just for a couple of hours and by the time i leave, i'm exhausted, going to bed at 6:30, 7:00, just because i can't stay awake after working.

Leyla: have the doctors said at all how much longer you're going to be dealing with these lingering effects?

Mostly who is treating me right now is the cardiologist.

She has diagnosed me with disauto gnomia and pott's syndrome, which is essentially when i stand upright, my heart rate goes through the roof and increases.

So it could be in the 60s, 70s laying down, and i'll stand up and it will be 115, 120s.

Just getting uprighted.

So she's originally, when i got sick, said maybe 6-8 months, and now 9 months, and now she's saying i don't know if or when you'll get better.

It could potentially be permanent.

Leyla: really, the symptoms that you started to experience when you first contracted covid, can you tell us what that experience was like?

You went in for the surgery.

Reporter: i went in for the surgery, and a couple of days later, one light i got this extreme headache and all of a sudden, this back pain of never experiencing anything like that.

So kind of laying around for the surgery and brushed it off and the next morning, i woke up and had a little bit of sinus congestion, and a little bit of a sore throat.

And maybe it's for the surgery or the medications or the painkillers that i was taking, but then the third day, i woke and up extreme raw sore throat and congestion, and i lost my taste and schnell immediately, and i was like man, i have covid.

Leyla: and you were tested and confirmed.

Yes.

Leyla: how long were you living with these symptoms, and when did you start to see some of those things ease?

Have you gotten back your taste and smell?

No i still don't have it t some of it is back, but a lot of things taste weird to me and garlic tastes metallic and lettuce tastes like chemicals, and it's strange and i have to get up close to smell things.

Just cooking, i can't tell what's cooking for dinner unless i walk in the kitchen and get up close to smell it.

It's definitely changed.

And then as far as going through my disease progression, at first, i never had the body aches and chills.

I just had extreme sign us congestion, and headaches that lasted for months actually and it was not until about day ten that i started going downhill and contacted one of the physicians i work for and said hey, i am having trouble breathing and chest tightness, and they immediately jumped in and put me on inhalers and steroids and medications, just to kind of prevent me from ending up in the hospital.

Leyla: sounds scary.

It was, but i kept day-by-day getting up and trying to at least walk around the apartment.

But even that started to get -- leyla: exhausting, right?

It was exhausting.

Leyla: when we come back, i want to hear what you have to say about people who request whether or not they should be getting the vaccination and what they shoulding doing to maintain safety when they go out there in the world for people who contracted covid and we're going to do that in two minutes.

Don't go anywhere.

Leyla: welcome back, we have been chatting with sarah simon, a nurse and biologics coordinator for asthma, and she has been telling us about her covid-19 journey.

One that began in late june and continues to this day, and it sounds like in work and your personal life, you don't do things the same way you did before.

I rarely leave my condo.

It's me, my boyfriend and my dog, and we do try to get outdoors, but even that, i had to go through physical therapy just to be able to walk more than 20 feet.

So you know, i'm getting there slowlyish, i guess you could say, but i still have a long way to go before my life is back to normal for sure.

What's the next step from here?

The next step, i have an appointment this week with my cardiologist and i was started on a heart failure medication last weekend, trying to help with the high heart rate issues, and they had done a study on it that had good outcomes with long covid patients like myself.

So trying to really get that under control; i'm waiting it see neurology, and they couldn't see me until april 5th to help with some of the brain fog issues, and memory issues, and day-by-day, i never know how i'm going to wake up and what symptoms will be worse, one day versus the other, and keep going.

Leyla: i will be keeping you in my prayers, sarah.

Thank you for being candid and sharing your journey with us.

You can talk to so many patients who feel alone and scared.

I actually started -- they have covid support groups on facebook, and i started a local support group for long haulers like myself that live in south carolina, it's called low country long haulers, and i encourage anybody to reach out to talk to others if you are going through these symptoms. it's real comforting to speak to other people who are going through what you are.

Leyla: absolutely, sarah, thank you so much.

Absolutely.

Leyla: and we.

To see you get better soon.

Appreciate it.