When Your Health Care Is Not Considered a 'Priority'

When I read a news article during the first year of the pandemic relating how doctors were being forced to decide which of their patients would get to live and who would die, I refused to believe that was true. Now, I am experiencing firsthand that this new way of prioritizing urgent health care is actually real.

I found out in June that I have pseudomonas aeruginosa in my lungs after a sputum culture was processed in the lab at my doctor’s request. Pseudomonas aeruginosa is an aggressively opportunistic pathogen that is multi-antibiotic resistant. This bacteria produces a biofilm which most antibiotics are unable to penetrate to even get to the bacteria to kill it. And, when an antibiotic is found that can penetrate it, the antibiotic must also be one that the bacteria itself has yet to become resistant to.

Humans are regularly exposed to pseudomonas aeruginosa in water and soil and, unless there is an underlying condition such as a compromised immune system or cystic fibrosis, are able to defend against it without ever being aware they have been exposed. Most people contract P. aeruginosa if they have cystic fibrosis because this lung condition is the perfect environment for this colonizing bacteria to thrive. Others contract it from exposure during surgery or placement of IV or urinary catheters.

When a culture is done in a lab, the lab proceeds to determine which antibiotics could have a chance at being successful in killing the bacteria. With the specific strain my lungs have been colonized with, the lab found only four antibiotics which might have an effect. My doctor immediately prescribed the only oral choice. This antibiotic, Levofloxacin, failed to clear the bacteria and left me with some serious side effects I could continue to experience until I die because these side effects can last up to 24 weeks and maybe longer. The prognosis for a P. aeruginosa colonization is very poor.

My doctor immediately made a referral to the pulmonary specialist clinic for evaluation of the severity of the colonization, testing to see if I have mild or moderate cystic fibrosis that has gone undiagnosed, and determination of which of the three remaining antibiotics or combination of them should be prescribed. The last three are all IV antibiotics requiring me to go to an infusion clinic every day for 10 consecutive days.

The soonest appointment the pulmonary clinic could give me was September 15th because, not only are they needing to serve their usual cystic fibrosis, chronic obstructive pulmonary disease (COPD) and lung cancer patients, they have been and are currently being overwhelmed with COVID-19 patients.

Fortunately, this appointment was bumped up to August 25th because of a cancellation. Now, I am struggling to find transportation because I have no vehicle and am running up against a brick wall trying to find any person or agency willing or able to get me to these life-saving medical appointments.

I am 60 years old, disabled, low-income and on Medicare. My income is slightly too high to qualify for straight Medicaid and I am unable to afford the $2,600 spend down with the program I am eligible to. Medicaid transportation would be available after I meet the spend down. All of my family members, except for my son, live outside my state. My son has told me “we are no longer a part of each other’s support system” and, in the past, has told me when I asked for a ride to urgent care, “If you can’t take care of yourself, maybe you belong in a nursing home. It’s not my problem.”

My local friends have decided that I am too negative for them to continue to be in my life. I admit, I am very negative. I am dealing with a life-threatening condition and am frustrated at being treated by agencies I’m reaching out to for help as if I my life has no value and my needs are inconvenient when they prioritize rides for those who need transportation to work and school over those who need medical transportation. I have reached out to 13 different agencies in my area who have told me that I am outside of their service area even though I am in the county they say they serve. For the others who would pick me up from my home, I fail to meet other criteria.

I feel like I’m being told by family, friends, medical professionals and social service agencies that they are of the opinion that I no longer have anything left to contribute to society and, since my medical condition has such a poor prognosis of being successfully treated, it is no priority to help me and attempt to save my life.