COVID-19 long haulers keeping faith while learning to live with ‘new normal’

Lingering symptoms of COVID-19 months and years later are affecting as many as 1 in 3 people who get the virus. Several patients are sharing their journey to finding a new normal.

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Rotceh Pena was diagnosed with COVID-19 in December 2020. Six months later, she realized she was still suffering from the after-effects of the virus.

"I thought I fell asleep. I thought I may have blacked out. I don't know what exactly happened, but I lost control of my car, with my children in my car, and I wrecked it," explains Rotceh. "I went to the left lane into the ditch and wrecked my car. That was just a big eye-opener for me to say, 'Okay, I'm not cognitively the same that I was before.' I couldn't remember where I was." 

"I was sort of like, just not there. And that was just whenever I said, ‘okay, this is not normal,’ this is still something that is bothering me," he added. "It's still you know, my sleep pattern, my pain in my feet that I get at night, and then I'm not able to sleep."

Rotceh sought help through UTHealth and joined a study to use her situation to help researchers find more answers about long COVID-19.

"It's mainly for them, for research for them, but it gives me insight to say that I'm not alone. It gives me insight and gives me peace of mind that I am not the old I'm not going crazy. I'm not just making it up," states Rotceh.

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UTHealth developed the COVID Center of Excellence to treat not only COVID patients but also long-haulers. Dr. Luis Ostrosky with UTHealth and Memorial Hermann says we are going to be dealing with long COVID for decades.

"People are just miserable! They continue to have fatigue. This affects their work, their social life. They complain of memory and concentration issues. They complain of muscle aches and pain, and some of them have, for example, long term damage to the lungs complaining of shortness of breath, and we see a lot of depression and anxiety, even PTSD," explains Dr. Ostrosky.

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Rohan Bavadekar was one of the very first patients to be diagnosed with COVID in Houston in March 2020.

"I was airlifted from one of the suburban hospitals to St. Luke's Hospital in the Medical Center. I was put on ECMO. Even after putting on ECMO, I was given plasma. You know, that improved my symptoms a little bit, but I was still critical, you know, and after that even when I was on ECMO I got a stroke. I had two cardiac arrests. I was on dialysis for a prolonged time. So, the fact that they were able to revive me is a miracle in itself - twice on the same day," explains Rohan.

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Rohan and his wife wrote a book called "Cheating COVID:  A Family's Story of Suffering and Surviving", to share their experiences and hope it will help other long-haulers or anyone dealing with a medical crisis. He spent half a year between the hospital and recovering in rehabilitation.

"There are still long-hauler symptoms like at times I do have irregular heartbeats or strong headaches, but probably didn't go away with time. My lungs are still affected, but they are better than what they were," says Rohan.


Dr. Ostrosky hopes that continuing research will lead to answers and life-changing treatments.

"Once we know the root cause of the symptoms, whether its viral replication or immune dysfunction, then we can try different interventions, we can try anti-viral from monoclonal antibodies, if it's really a viral problem, or we can try immune suppression or immune modulation if it's truly an inflammatory problem," says Dr. Ostrosky.

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