Respiratory crisis sounds serious.

I’ve been warned that it is life threatening.

Since I’ve had myasthenia gravis, there is a list of medications I cannot take because of their potential to cause a respiratory crisis.  Several of these drugs are used for anesthesia.

You can imagine my distress when I recently asked the advice of my neurologist concerning anesthesia for my upcoming surgery, and his reply was, “The usual myashtenia protocol.”

Again, I questioned, “The surgeon would like your input for anesthesia.  What anesthesia do you recommend they use for my surgery on the 19th?”

Again, he replied, “The usual myasthenia protocol.  They should know the protocol.”

I asked three times and three times I got the same answer.  Which was no answer.  Why couldn’t he just say it?

The neurologist.

For almost twenty years I have been a patient of Dr. Neurologist.  When I first saw him, my only diagnosis was polymyositis.  At my first visit, he mumbled under his breath that he was suspicious I had myasthenia gravis, but since I wasn’t showing any symptoms  (and he continued to mumble something inaudible)…

That’s the quirky Dr. Neurologist.  Always thinking out loud.  I did not ask any questions at the time.  One diagnosis was fine with me.  No questions here, thank you very much!

I began to have symptoms of myasthenia gravis a few years after that first visit.  Recollecting his words, I thought Dr. Neurologist was a diagnostic genius.

His level of expertise served me well then, but what about now?  Now is when I needed a real answer.  Considering my health was at risk and words such as “respiratory crisis” are brought to mind, Dr. Neurologist’s reaction seemed calloused.

Was it a liability issue?  Just say so.

Regretfully, I considered if ego had gotten in the way of a twenty year patient/doctor relationship.  Believing our relationship was built on the premise of a doctor caring about the life of a chronically ill patient, I was despondent.

What had changed?

The listener.

Within the life of a chronically ill person is someone who does not want to be perceived as a complainer.  Deceivingly, we minimize our pain and our struggles attempting to seem as “normal” as possible while keeping our pain experience to ourselves.

Taking a trip to the doctor’s office requires us to take the facade down.  We must dig deep, be honest about our disease and level of disability so that we get proper treatment.

These two acts are difficult to balance.  Usually, I find it easier to stick with one, the minimizing pain and seem as “normal” as possible option.

This summer, I had a goal of finding new ways to improve my health.  One step I decided on was to see a new doctor that several people had recommended.

Dr. Trevino is well-known in the dysautonomia community and is a member of the Tampa Bay Local Medical Advisory Board for the Dysautonomia Project.  Treating patients with dysautonomia since 2011, Dr. Trevino is highly regarded.

At my new patient visit, he spent almost an hour asking me questions and listening intently to my answers and my story.  There were no interruptions.  I didn’t feel belittled or judged by my answers, as I have so many times.

Politely, he listened.

With compassion, he heard the words I said and the words I didn’t say. 

I trusted him. 

The father.

There is no guarantee that my patient/doctor relationship with any doctor won’t change over time.

Trust is essential.  When putting my life in the hands of a doctor, I want to feel as though that person cares.  Honestly, I want more.  I desire a doctor with compassion.

I remember when one of my kids was very sick.  He required hospitalization six times in eight months.  Giving us one of the few options left, the doctor told us of an off-label medication we could try.  The vast list of side-effects and warnings were frightening, as was the idea of another hospital stay.

I asked the doctor what he would do if this were his child.  As a father has compassion for his own children, I trusted his recommendation when given this scenario.  The doctor/father gave his recommendation and reasons.  We made our decision.  Our son was never hospitalized again.

“Jesus Christ is the same yesterday and today and forever.”  Hebrews 13:8

Designating another person to have control over our life decisions, should we become mentally unable, is something we consider as we age.  That single person could make decisions such as removing or sustaining life support.  What standards would you use in choosing that person?

Relationships change, circumstances change, and our health changes over time. 

Jesus never changes. 

Hebrews 13:8 says, “Jesus Christ is the same yesterday and today and forever.”

Knowing that Jesus never changes is my greatest comfort.  Ultimately, I trust my life with The One who never changes.