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BTTF Member Susan Lee shares her experience with a loved one who tested positive for COVID-19

It’s August 1 and you take your loved one, who has been coughing several days and now has chills and shortness of breath, to the doctor. Due to low oxygen level, they send you to the hospital where you are not allowed to stay. You go home, and five hours later, you are allowed to pick him up, with a diagnosis of COVID 19 and a prescription for Xarelto.

That night you receive a call from a nurse at the Health Department conducting contact tracing. There have been two people in contact within six feet and longer than fifteen minutes with your loved one since symptoms began. You are one and the lone employee of your small business, who you have already contacted, is the other one. Since there are no other employees, your business shuts down for two weeks. You and the employee receive COVID tests Monday, both of which come back negative. You worry for your business as well as your employee being out of work.

Several days later, your loved one’s symptoms are worse. You drop him at the hospital at 8:00 p.m. At 9:30 you receive a call from him saying they are looking for a hospital bed. You ask to speak to the nurse in the room who tells you they want to act on the safe side. At 11:30 p.m. you receive a call from your loved one saying they are sending him to a hospital 90 minutes away. You do not hear from anyone at the hospital. You have a sleepless night, imagining all kinds of things - is he in ICU, will he end up on a ventilator, will you be able to see him?

For two days your loved one is in the hospital, and you cannot visit. You can call in and speak to a nurse who goes through the treatment plan with you. On the third day you get a call to pick him up. Your only contact with the hospital is when you initiate it. The nurse gives you prescriptions and instructions and says they will make him an appointment with his primary care doctor a week from now. Your loved one tells you he had excellent care at the hospital. You feel relief!

A doctor’s appointment is scheduled and then rescheduled as it seems every entity has a different protocol. In the meantime, your loved one has worrying symptoms. You begin to worry again - how long will this last, what can we do about it? The doctor tells you that COVID can be like mono and last several months.

In late August, your loved one has an appointment that was scheduled in mid-July. You take your loved one there and are told he has to have a negative COVID test to be seen, and you have to have a negative test to accompany him. This is again a different protocol from the Health Department. You explain this and suggest that if that is their protocol, they should let people know when they verify the appointment. You both get a test, they come back negative and your loved one has a positive anti-body test. You return to the doctor the next week, your loved one goes in but you are refused entry, because it is against protocol. Several tests are scheduled. Finally, you get to go in with your loved one to a follow up appointment. You mention COVID and the doctor says, “oh, you had COVID?”

This is my story. My frustration is that at every turn there was a different protocol. My loved one was lucky - others haven’t been so fortunate. I have had to distance myself from social media as COVID has become so political and people’s comments are unkind. I want to shout “if it was your family member you would feel different!”

The patient’s family needs to have information and not “conflicting” information. Medical providers must provide a safe way to give the family information in these trying times.

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