After having severe rheumatoid arthritis for over 37 years, ever since I was a little boy, I am used to fighting for everything from medical supplies to equality as an advocate for patients with disabilities. but I actually broke down and cried recently after another battle with the company that provides, or should I say fails to adequately provide, my prescription drug coverage.
Without notice, my pharmacy told me the drug I wanted to renew was no longer covered. this is a medication i take every morning because a few years ago i had a severe gastrointestinal (GI) bleed that landed me in the icu for several weeks. luckily i called for the refill before i ran out of medication and figured i could figure this out before it ran out.
But after five days and numerous phone calls to the prescription drug company, I was still being denied medication. Tears began to flow when an unfriendly representative from the prescription drug company told me that he needed to appeal the decision and include a letter of authorization from my doctor. From an email sent to me earlier in the day, I knew it would take between 72 hours (in emergent cases!) and 10 days to make a decision.
With the number of COVID-19 cases on the rise, I have taken a number of steps to stay healthy and have been diligent to stay home. I am immunocompromised and at high risk of complications, of the life-threatening kind, should I become infected.
Because there were no good treatments for juvenile rheumatoid arthritis when I was diagnosed in the early 1980s, I have a lot of permanent joint damage. I used a wheelchair and walker in elementary school and I still use a wheelchair today. Getting from one place to another on a good day that isn’t a world-threatening pandemic health crisis is more challenging for me than it is for the average person, let alone right now. I didn’t want to risk my health or, frankly, my life over insurance paperwork.
I told the representative that I would not leave my house to go to my doctor’s office to get a letter, as other patients could have the coronavirus and put me in danger.
When I told the rep that I could die if I got the virus and didn’t get my medicine, she responded by saying that the medicine doesn’t save lives. I was taken aback because she was unaware of my treatment plan, nor was she with me in the ICU when I had the GI bleed and needed 10 bags of blood to survive. Increasingly annoyed, I asked her if she would be the one to tell my parents that when she ended up in the hospital.
Unsurprisingly, he transferred my call to a line belonging to another department that repeatedly played a message about long wait times due to lack of staff. after waiting and waiting I finally hung up and that’s when I started sobbing.
I’m used to overcoming big health challenges
When I get this angry, I tend to reflect on some of the many challenges I’ve had due to my severe inflammatory arthritis over the years (not a big rabbit hole). It made me think of another time when I was in the ICU after spinal fusion surgery and had to be on a ventilator. Even though I was only on the ventilator for a couple of days, it felt like a lifetime.
The memory lives on more than five years later.
Being on a ventilator isn’t something I want to go through again, and I worry every day now that the coronavirus is spreading rapidly and many high-risk people who get it depend on ventilators for survival.
With the increasing number of covid-19 cases, there is a high demand for ventilators and a shortage. And while ventilators can save lives, the general public doesn’t seem to realize just how serious it is to be on one, especially those who ignore orders to stay inside.
Even if the vast majority of people with coronavirus will have a serious respiratory infection to fight at home, a portion of apparently healthy people will require hospitalization. some will need help breathing.
Trust me when I say that you should not take this potential opportunity lightly. you don’t want it to happen to you. you don’t want it to happen to someone you love.
I’m still traumatized from being on a ventilator
Personally speaking, I would say being hooked up to a ventilator is one of the worst experiences of my life. the idea of having to depend on one again has definitely discouraged me from leaving home.
To give you an idea of the process, patients are intubated before being placed on a ventilator. patients may or may not be asleep during this process, which involves “placing an endotracheal tube in the mouth or nose and threading it into the airway. This tube has a small inflatable gasket that inflates to hold the tube in place. the ventilator is attached to the tube, and the ventilator provides “breaths” to the patient,” according to verywell health.
Although patients are often sedated after being put on a ventilator to help keep them calm and comfortable, it doesn’t always work because they can feel the tube and air being drawn into their lungs.
I remember everything about the process even though the anesthesiologist tried to pretend he wouldn’t. Lauren Agoratus, of the Statewide Parental Advocacy Network in New Jersey, told me that being connected to a fan is something Ella Stephanie Ella’s daughter will never forget either.
When Stephanie had complications from a kidney transplant, she was put on a ventilator. “They said that she would be in a twilight state and not realizing it. it’s not true,” Agoratus says, recalling that Stephanie cried and used American Sign Language to express her extreme thirst.
“I asked stephanie if she remembered and how she felt, and I knew she did because every time we go to the hospital she says ‘no breathing tube,’” Agoratus said. “She said ‘it was scary that I needed it.'”
Jessica Rogers, who is quadriplegic and has been on a ventilator several times, agrees. “It was very uncomfortable and it’s scary because he breathes for you,” Rogers says. “Sometimes you feel like you’re ready to take another breath, but [the machine] isn’t there yet. Do you know what I mean?”
yes, I know exactly what you mean. sometimes, it felt like she couldn’t breathe at all. I remember trying to write that down on a piece of paper so my husband could ask for help when he experienced it. in fact, I had to write down everything I wanted to say because I couldn’t speak. I circled the words for emphasis.
There is no way to call for help and you have to hope that you can reach your call button and someone answers. obviously, you can’t eat or get up. and if you’re lucky enough to disconnect from the fan, that process sucks too.
agoratus and his daughter agree. “When she was extubated, she went into respiratory distress, coded, and they had to reintubate her [while she was] awake. I heard the code blue and I knew it was her and, sure enough, all the doctors crowded into her room. Her usual doctors had just come upstairs and asked me how she was doing. I lost it [for] the first time in 15 hospitalizations, even though she had been resuscitated several times. I replied: ‘her new kidney is failing and she just scrambled’. one doctor stayed with me and the other ran to her room. they had to keep her on the ventilator for two more days and gradually weaned her off.”
When Agoratus asked Stephanie when they put the tube back in, she said, “It was scary. I loved my mom.”
Stephanie also said that the tube hurt because she felt like it was sticking her. She “was fighting with them because she was awake, and they had to force her down, causing abrasions to her throat and mouth.”
please take covid-19 and social distancing seriously
Fortunately, the fan was successfully removed. I don’t think I could have put up with what Stephanie went through.
To avoid contracting COVID-19 and possibly having to be hospitalized and put on a ventilator, I am taking extreme precautions, even for myself.
Fortunately, I am able to work from home at the moment, which I am very grateful for, because my job as a disability, access, and functional needs planner for the new jersey office of emergency management is vitally important at this time. I stay indoors as much as possible.
Although I need outside caregivers to help me with my daily routine, we are being very careful. my personal care attendants wear gloves and masks, but I care about their health. one has already been absent because she also takes care of her 103-year-old aunt and she cannot leave the house, so I have to depend on my mother to do her shift. we constantly wash our hands and disinfect surfaces.
who knows what the future will bring, for any of us, but whatever happens, I will know that I tried to protect myself and my loved ones as much as possible from the ugliness and fears that the complications of this virus may cause. no one can afford to dismiss these risks. no one should have to experience what I’ve been through.
Miraculously, that same day I was told to get an appeal letter from my doctor, the pharmacy informed me that my medication was ready to be picked up. (my father did it safely, of course, following the rules of social distancing so as not to be exposed). now we just have to wait for another miracle so covid-19 can be stopped in its tracks and stay safe in the meantime.
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