Every night we watch the news: inflammatory election talk, assault on democracy, a desire of some folks to go back to the fifties- particularly with women’s rights, and extremely concerning statements about religion and government. Of course, inflation, supply change shortages, the Ukraine/Russia war, more jobs than workers, climate change (locally- lobsters and weather), worries about paying for heat and food in winter in Maine, asylum seekers and continuing healthcare worries round out most broadcasts.
The last couple of years have been a bit surreal with Covid and all the drama around quarantining, vaccinations, politicizing of vaccinations and science which has wrought difficulties for our health care system. It seems we take one or two steps towards normalization and then there are three steps back! During Covid and the aftermath, we realized how fragile our health care system is. We had doctors and nurses that went through hell trying to keep people alive, and we had people who gathered together for weddings in the face of a pandemic which resulted in over 100 new cases of Covid and 3 deaths. We had folks dying alone without being able to see or say goodbye to their loved ones and those in assisted living who could not understand why they were not visited anymore. Normal routine stuff like routine tests and checkups were blown out of the water, normal follow-up visits were delayed. After two years I hoped that some of these screwed up systems were sorting themselves out. I found out, the hard way, that it is going to take more time.
For the last year our experiences with health care and an Emergency Room revolved around the VA system here in Maine. For us, it has been wonderful. We live near the one and only VA hospital in Maine, and so it is convenient and, compared to the rest of the healthcare world, wonderfully timely. Dave has been through kidney stones, Covid and a cyst in his spinal column which resulted in surgery. The last took a while to diagnose as the pain was referred to the hip. A scan and a couple of medication trials failed to resolve the problem, which we discovered when he had an MRI that he had a cyst in his spinal column. The day after the MRI he came down with Covid, once that was resolved (with excellent follow-up care by the way), he received an appointment with a surgeon and removal of the cyst within two months’ time. And he was immediately pain free!
From our friends in the civilian healthcare world, we had heard of the long wait times in Emergency Rooms. We knew the backlog of delay for routine procedures like colonoscopies, mammograms, and ultrasounds. After my PCP moved to another town north of us in Maine, I discovered that I would need to wait 11 months to 02/2023 to have a PCP again. After I determined the wait was similar in three different practices (including my original provider) I decided to change to a provider under the Maine General umbrella since my cardiologist, surgeon, and gastroenterologist were all providers for Maine General, so hopefully communication would be facilitated between them. Sounds sensible right?
Then September hit: I noticed my scalp was painful to the touch when I was getting my hair done and occasionally, I woke up with a headache on the right side of my head. I was a little stuffy, with no cold symptoms, and was breathing through my mouth. I figured I was getting less oxygen than I needed (and issue with my heart condition) and wondered if I was getting a new seasonal allergy. I experimented with different pillows, washing my pillowcase more often than the usual every other week routine, and sleeping on my left side rather than my right. No change. By the end of September, the headache was every day and getting worse – it would start with a 2 or 3 on the scale of 1-10 and by evening it was a 5-6. This continued into the beginning of October when it sharply worsened, and I began to notice my right eye was getting tired and blurry. By October 12th my headache was light sensitive, sound sensitive, and a level 15 on a 1-10 scale. Since I did not have a PCP to say- “hey what is going on?”. As I laid in bed in a fetal position, my husband called in my son for reinforcement and Josh told me I was headed to the ED in an ambulance or car. I recognized that tone of voice that I used to use with him when he was small: it is time to do something! Josh and Dave took me to the ED and together we discovered our sluggish emergency treatment problem was even more than sluggish than we thought.
In the six hours in the waiting room, I watched youngsters come in with injured limbs from jumping and skateboarding. A pair of toddler twins came in with obvious sickness and they were treated pretty quickly, after already going to Urgent Care. There were several of us seniors with different issues. After three hours I did receive a CT scan which ruled out a stroke, although I did not know that until an hour later, after my husband had a serious discussion with the triage folks about why it was taking so long. The most distressing was seeing an elderly gentleman keel over into two chairs when he could no longer stand, and a woman and young son who left after 5 hours, with a whispered “good luck”. In my sixth hour I finally got into a room, was evaluated, diagnosed and given morphine to stop my exploding head. My right eye was partially closed, I was able to provide a timeline of the pain progression and explain that near vision was impaired, but distance was not. The provisional diagnosis is temporal arteritis, or the inflammation of the temporal artery which runs up the side of your face with branches to the eye, to the back of the head (at least it looks like that in pictures) and to the top of your skull: hence the pain around the eye socket, the puffiness and closing of the eye, the impaired vision, the specific pain points around the temple and my touchy skull. Untreated there is a risk of blindness in the eye and stoke, among other things. A lab test failed to support the diagnosis, but the symptoms, my age and gender supported the diagnosis. A definitive diagnosis comes with a biopsy of the temporal artery (not yet scheduled). Interim treatment is prednisone, and it is helping. Vision is still an issue, eye swelling is still present, scalp still is tender but less so, and the pain level is back to a 2-5. Reading, the thing I love to do, is limited so my headache stays manageable.
I did have a frank discussion with the person who follows up with you after the ER visit to find out how they did. I tried to be fair and noted that the doctor and the traveling nurse (0n her second shift) were very professional, kind and compassionate. Their waiting room sucked. I know that staffing is an issue, I know that several patients were being held in the ER, I assume waiting for beds in the hospital or transport to somewhere else. I have no idea how many people came into the ER through the ambulance bay. All I can say is that I suspect that there are others who were in the ED that day because they could not get treatment via a PCP to head off the crisis, and that added to the mess. A six hour wait to see a physician does not seem reasonable to me, especially when pain meds cannot understandably be given until a physician signs off. No one wins when someone sees people leave in frustration or lay there apparently unattended. It does not help the hospital; it does not encourage community support. It just adds to the division and the distance that seems to pervade life these days.
One good outcome was I now have a PCP even if I will not be an official intake until 02/2023. If things worsen, I can at least call someone other than go to the ED. Now to get the biopsy scheduled…
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