Frightened but Hopeful

Alongside of this experience, I was questioning my Doctor about the shortness of breath and asked him to help me figure out what was wrong.  He began with the least invasive approaches –chest x-ray, EKG, and moved on up to stress tests and breathing tests. This all took place over a period of a couple of months.  None of these tests showed much evidence of a problem. There was some indication that my heart was not “normal” but it was still within range of reasonableness.

Without a scary diagnosis in sight, I decided to spend a couple of weeks in Brazil during the month of July. The flight was uneventful and my breathing didn’t get any worse, maybe even a little better.  As long as I didn’t exert myself, my breathing seemed normal, but the minute I walked fast or bent over a couple of times, I was gulping for air. The patient handbook explains this:

Most patients experience a honeymoon period” after the onset of dyspnea. They may be stable or even improve for a period of several months or years. Then deterioration occurs, sometimes rather abruptly. This is usually interpreted as an embolic recurrence. However, it usually represents onset of right ventricular failure from chronic pulmonary hypertension.

There were more tests in August and more Doctor visits. I was starting to think that my doctors were seeing me as mentally unable to relate to my situation. Since they couldn’t find anything terribly wrong with me, they seemed to think nothing WAS wrong.  With a rather dismissive attitude, they usually sent me on to another specialist for an appointment that was several weeks out.  No rush. But I knew something was wrong.  I couldn’t breathe. Another note from the patient handbook explains the difficulties of diagnosing this condition:

The diagnosis may be difficult to make. Frequently, the presenting and often dominant symptom is dyspnea on exertion. As a result, alternative diagnoses are entertained including pulmonary arterial hypertension (P AH), coronary artery disease, exercise-induced asthma, etc. While most patients have a history of venous thrombosis, it may be obscure (“leg cramps”, pulled muscle, etc.). A discreet, documented episode of embolism also is frequently absent. The cause for dyspnea thus often remains undefined (until a lung scan is done).

By September my breathing became so laborious that I could not walk between my bedroom and the kitchen without stopping to rest and breath. I didn’t know what to do. I was beginning to realize that I could not shine this on any longer. I was realizing that I would have to take the initiative if I was going to get to the bottom of this problem. My doctors didn’t seem worried about me, but I was beginning to break through my own denial barrier and was coming face to face with an unknown adversary. I was reaching a turning point. I had to admit to myself that I was not well. This may sound like a small thing, but it wasn’t.  It was big.  It changed the way I saw myself and my condition. It allowed fear to overwhelm me. I realized how vulnerable I was. I could no longer say, “I’m fine,” and mean it.

I remember standing on the stairs in our house and looking beyond the windows into the trees. I asked myself if I should go to the emergency department and quickly got a resounding, “Yes!”  OK, I’ll just jump in the car and drive down to the hospital emergency room. Well, maybe that wouldn’t be such a good idea. My husband was busy working on a project, so I asked him if he could give me a ride when he finished. He took one long look at me and said, “let’s go now.”

We live in a small town with a small hospital and an even smaller emergency department.  It was a Saturday night – not the best time to go to an emergency department with an unidentified problem that did not appear to be life threatening. I seemed to be a curiosity at the intake desk. I wasn’t dirty and homeless. I wasn’t high on drugs or intoxicated. I hadn’t whacked my finger off with my chainsaw. I hadn’t fallen off a roof or been hit by a car. Those seemed to be the usual customer complaints and I seemed to be in good shape by comparison.  You say you can’t breathe? It must be hay fever, or asthma.  Maybe you’re allergic to something?

I spent 8 hours in the Emergency department in a little bed with curtains separating me from several other people. I got no treatment, just another EKG that showed slight cardiac irregularity’s.  I was continually asked if I had chest pains, which I did not.  Once I said I didn’t have chest pains, the medical staff seemed to relax and leave to help other patients. I have no idea what was going through their heads since they never gave me a clue.  The treatment seemed to be to wait.  If we wait long enough the symptoms will either go away of get worse and then maybe we can figure out what to do with you.

Around midnight a bed in the adjoining hospital opened up and slowly, with lots of paperwork and further questioning, I was released from the emergency department and hauled off to the adjoining hospital. I was relieved. If they were sending me to the hospital they must agree that something is not right and needs to be treated.   I thought my problems would soon be solved once I was in the hospital. I naively assumed a doctor would check me out, pronounce a diagnosis, and send me home to recover with a bottle of pills. I went to sleep that night feeling hopeful. Frightened but hopeful.

(more later)

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