|
|
|
When we were age sixteen Pearl and I made a pact of love – at age nineteen we consummated that pact with the promise to love each other "in health and sickness until death do us part". We were both faithful to that promise but expected to share many more events in years to come.
We weren’t prepared for what Giant Cell Arteritis would present to us, both in anxiety and duration. Some articles describe GCA to be a one-to-three year illness readily managed by prednisone. Despite those optimistic descriptions and what some patients have experienced I know that it can also be a devastating life-altering experience from which some don’t recover.
Medical doctors are worthy of adulation – they are exceptionally skilled and knowledgeable in their areas of expertise. I was perplexed by Pearl’s evolving condition throughout her illness. Her doctors shared my anxiety for Pearl during many difficult situations.
Her final days were not what we anticipated. Our hopes had been based on her ability to survive dozens of damaging setbacks in prior years. She had grown tired both physically and mentally. Our younger daughter had been coming to our house about three times a week to wash, dry, curl or tint Pearl’s hair since Pearl’s shoulders became impaired three years ago. In recent visits Pearl shed tears of despair while they were alone together which was uncharacteristic of her – this I learned after her funeral.
I encourage others – patients and professionals – to be respectful of GCA. Research it unceasingly – new information is published almost daily. Manage it in a disciplined manner. Measure CrP and sed rate often for guidance and if above normal treat it immediately with sufficient prednisone to achieve normalcy. Determine personal normals rather than rely on published averages of normals. If using steroid-sparing medications monitor prescribed parameters faithfully. If a symptom that is characteristic of GCA or PMR presents itself assume it is GCA or PMR rather than hope it might be something unrelated and undeserving of increased prednisone. Secondary effects of prednisone are important and deserving of caution but they should not be the object of prednisone therapy.
Our nine-year odyssey was truly elusive. I apologize to Pearl for all of us who worked in her behalf. We diagnosed her together; we managed her; we suffered with her and together we failed her.
I am lifted by the knowledge that medical progress continues and others may have a more tolerable and successful journey.