Back in July my husband was admitted into the hospital with COVID19 and viral pneumonia. During his time there (total of 81 days)he was on a ventilator 4xs, almost died multiple times, and experienced a collapsed lung and ICU delirium. A week after he was admitted I too became positive for COVID. The fear now was so great because I had seen what it had been doing both personally and around the world. I was afraid of loosing my life and my husbands leaving our 11 year old daughter an orphan.
Fast-forward, by the middle of July I was still showing symptoms of the virus even though I had been cleared by our local health officials. It took another month for me to be clear of the cough that comes with this virus. I was lucky compared to my husband and so many others whom ended up in the ICU. A few weeks into August I started experiencing what is now known to me as COVID long hauler symptoms. I have been in constant pain throughout my body, have headaches almost daily, and have had numerous sinus infections since August (about 12 and counting), I feel sick all the time (oh and lets not forget about the hair loss and memory issues).
My husband got out of an LTAC in September and was very weak. He came home with a bed sore, and is still on supplemental O2. During all of his follow ups it became clear that he too will be a COVID long hauler with far worse lingering effects than myself. We saw his before and after scans of his lungs and all I can say is that they are covered in damage. Between July and October he suffered 3 rounds of pneumonia, one of which happened after his release. Nightmares followed him for a few months of his time there in the ICU. Some people we have become connected to have told us its very common and amounts to ICU PTSD.
Now, its been almost 4 months to the day he was released from the LTAC. He has just now returned to work and his endurance isn’t there just yet. Luckily he has still so much fight left in him that I can tell he wants this to work. Hopefully he will get to remain at work and have no more set backs and just continued improvement. However, the frustrating thing is our state insurance (Medicaid) is still refusing to pay for a much needed shoulder/portable O2 device that he can use at work. He gets winded still and desperately needs this device yet like so many others insurance and state programs still refuse to help. He has fought this for so long and its sad that money is all that is holding him back from getting what he really needs.
In the end, we know when we hug each other at night that we are among some of the lucky ones who have fought this virus and are alive to share our story. We are in a group that we never asked to be in and find comfort in groups like #COVIDSURVIVORSFORCHANGE and #SURVIVORSCORPS. We struggle to get medical professionals to link what we are experiencing to the fact we have fought COVID. So many that I have spoken with have dealt with the same from their doctors. Myself along with countless others have been made out to be by doctors (not my current neuro thank goodness) as making it up, etc. What is it going to take for the local medical communities to realize being a COVID LONG HAULER is a real thing and needs to be treated as such? We long haulers are suffering daily to the point that so many aren’t lucky enough to be able to work or if they are they have to grin and bear it to keep bills paid. When will the medical community and lawmakers (federal and state) realize we are too the victims of this virus and deserve to be heard?
Wear a mask, stop making jokes, stop siding with an administration that has done nothing for people like me. COVID long haulers need a voice on the political scene now. Help us by contacting your state and federal representatives and ask them to help because one day you may be me.
Small Moments 