YOU ARE YOUR OWN ADVOCATE
“You got to know when to hold ‘em, Know when to fold ‘em, Know when to walk away, And know when to run. You never count your money when you’re sittin’ at the table. There’ll be time enough for countin’ when the dealing ‘s done.” That is the famous chorus from Kenny Rogers’ song, “The Gambler.” Love the song – hate the gambler concept – especially when dealing with my health.
So how to begin except at the beginning.
I recently traveled to rural Louisiana to visit my 98-year-old great uncle, a U.S. Navy retiree who spent 22 years in the Navy, serving through World War II and the Korean War. (I am terribly proud of my uncle which is why I include this information. See the photos of me and my uncle. ) His neighbor and long time significant other, whom I will call Dani, has been his guardian angel, without whom he could not have lived independently in recent years. Dani is in her mid-70’s and has been very healthy.
In mid-July of this year, Dani twisted to the right while sitting and experienced pain. When the pain did not lessen and since she could not get in to see her regular physician she went to the Urgent Care. At the Urgent Care, the medical provider, based on movement tests and touch, concluded Dani had pulled a muscle. Dani was prescribed muscle relaxants and pain pills and warned that muscles could take months to heal, i.e., expect the pain to continue. None of the medication helped Dani at all and when she took the pills, Dani felt she had been turned into a zombie.
A week after the initial incident and visit to the Urgent Care, I arrived for my annual visit to my uncle. It became apparent that Dani was in trouble. Back we went to the Urgent Care because she still could not get in to see her physician of 30 years and could not get through the protective bulldogs in his office. Urgent Care, without any tests at all, felt the original diagnosis of a pulled muscle was right. Again Dani was told that muscle injuries could take months to heal. (Duh! Did we really expect anything else?) At this office visit and only because we required it, the provider agreed to x-ray Dani’s chest. (“We see no medical reason for an x-ray, but we’ll order it because you ask,” we were told.) The initial reading of the x-ray was that her lungs were clear and that there was no problem. (I could almost hear them saying, “Nyah, nyah di nyah nyah. You think you’re so smart.”). BUT a short time later Dani received a call saying that the diagnostician had found a spot of pneumonia on Dani’s right lung. Accordingly, two antibiotics were prescribed.
Unfortunately, the treatment was too late. In the middle of that night Dani had a fever, had trouble breathing, couldn’t move on her own and was in excruciating pain. We called 911 and Dani was taken by ambulance to the nearest hospital. I accompanied Dani in the ambulance. By the good graces of God my brother and his wife had also arrived to visit and were able to stay with my uncle who was extremely upset by Dani’s illness.
The ambulance ride was not as exciting as I had thought it would be – just lights no sirens. I pretty much just held Dani’s hand. But the paramedics placed Dani on an IV bag so by the time we got to the hospital, her fever had come down.
Once we got to the Emergency Room (E.R.), there was a flurry of medical activity. I maintained my role of cheerleader and supporter and also tried to keep track of the various people coming in and of treatments Dani was given. I wanted to be able to tell Dani’s family about everything if there was a question.
Most critically, new x-rays were taken. Those x-rays revealed, in addition to the pneumonia, a pocket of fluid in the chest cavity. They believed it was the fluid build-up in the chest cavity that was pressing on the lung causing Dani the horrible pain. Later that day, over 200 cc’s (6.8 ounces or .85 of a cup) of fluid were removed by syringe.
At one point early in the day, Dani was given additional new antibiotics. One IV bag with a powerful antibiotic was hooked up and within minutes Dani started developing hives on her arm. I noticed the hives and rang for the nurse and told her Dani was having an allergic reaction. The IV bag was removed. Had I not been there, how long would it have taken groggy, tired, in-pain Dani or the busy nurses to notice the hives? How much damage could have been done?
Ultimately, we sat (or more appropriately, I sat and Dani lay) in the E.R. till 4:00 pm when Dani was taken to her hospital room.
About my presence in the E.R., at the most basic, I think it was good for Dani to have someone to talk to. In this E.R. there were no televisions. So, other than my scintillating conversation, the only entertainment in the E.R. was the line of nurses and technicians parading through doing various procedures. The E.R. experience is scary, especially after an ambulance ride and paramedics working on you. There is so much going on – so many people coming and going – so many initial procedures. So, in my opinion, having someone there to keep track as best as possible of what is going on is important. In my case, we caught the allergic reaction to medication early. And, I was able to keep Dani’s family and my uncle informed of what was going on as the day wore on.
Two weeks later, as I write this article, Dani is still in the hospital. She underwent surgery to remove the offending remaining fluid and is still recovering.
The ambulance ride and day in the E. R. were not what I had in mind for my summer vacation but I am so grateful that I was there for Dani but also, because it was a shocking, eye-opening event. It presented me with a much needed lesson. It was a graphic example of what if’s – what if Dani had asked for an x-ray at that first visit to Urgent Care – would the pneumonia have been discovered? Would this lengthy hospital stay have been avoided? Would Dani’s extreme pain and discomfort have occurred?
Having not been x-rayed and having the pneumonia discovered during that first visit and by waiting 10 days for a follow up visit (like the provider had advised her, Dani believed she just needed time to heal), given the pain Dani was in by day 11, she would have ended up in the hospital anyway. But could that hospitalization have been avoided had the medical provider done an x-ray during that first visit to Urgent Care? I am convinced that the answer is yes – the extreme pain caused by the large fluid build-up could have been avoided and, perhaps, even the pneumonia might have been cured with a course of antibiotics.
While no one knows what could have been different, the reality remains that an x-ray should have been done that first visit – if only to rule out any fractures (and I hope to find the pneumonia). Dani should have spoken up at that first visit and asked for an x-ray.
“You’re so assertive most of the time –you’re aggressive if you think your kids or I need help but why are you so passive with your doctor about your own needs?” That is what my husband says to me. I keep planning to do better and now, having seen an example of how badly things can go if one is not assertive in one’s own care – I am going to take Kenny Rogers’ and my husband’s advice and stop gambling. I will strengthen my spine and exert my own authority. I do not want to continue to roll the dice.
My eyes have been opened to the need to make demands of our medical providers. We cannot be passive spectators to our healthcare – trusting the experts know everything – to take care of us – to have our best interests top of mind.
So what does all that translate into in terms of changing my (and your) ways?
We need to maintain:
- An up-to-date record of all prescription and non-prescription drugs, including supplements we take; and
- Records of medical condition and past medical procedures.
We need to calendar when our next physical exam/mammogram/pap smear/colonoscopy, etc. is due. We should not expect anyone to remind us of the need to schedule my exams. The medical provider may not have a system to routinely remind people of the need to schedule a recommended procedure. Again, we are responsible for our own health.
We need to do our own research about any medical diagnoses – it may be boring, difficult and sometimes very difficult to comprehend medical studies but if we think about it as a final exam on our health that might motivate us.
We need to ask our medical provider questions and, if appropriate based on our research, challenge conclusions. We need to make demands.
And, it is always helpful to have a partner who accompanies us to critical medical appointments, knows our medical condition, offers support and ideas and knows where to access the information on our medical history.
In dealing with our physicians, we need to treat them like any other service provider – we need to be satisfied with their treatment and, if we are not satisfied either seek a second opinion or simply find a new medical provider. Staying with a physician just because we’ve been with them for a long time but expecting a better result is just not realistic. If our long term physician does not seem to be hearing us – chances are they stopped listening to us a long time ago. You can still love your physician but find someone else to treat your on-going needs.
As one gets older it is even more important to have a physician who listens. You do not want a physician who brushes off your concerns with the attitude of, “well, you are getting older – its natural to have all those aches and pains.” By doing your own research, you can be empowered to approach your questions of your physician with confidence.
Some helpful sources are listed below.
An article written by a grieving mother, Merope Mills, about the death of her 13-year-old daughter due to negligence in the English National Health Service, is a graphic and heartrending account of what happens when patients (and those responsible for or caring for the patients) don’t ask enough questions, don’t make enough demands, and, ultimately, trust too much.
The following articles on tracking your health information; maintaining your medical records are a helpful start to getting yourself on track.
https://www.prevention.com/health/a20511093/digital-medical-records
By Patricia Cantu
