Loosing It

By the next morning, I had still not been treated for anything – just poked and rolled and looked at quizzically. Finally, in the late morning a doctor came in to talk to me. He said I had some irregularities in my heart but he didn’t know why. He thought I may need an angiogram but they didn’t do angiograms in this hospital. I would need to be transferred to another hospital and he wasn’t sure he could get them to accept me.  When I started asking questions he became defensive and seemed to try to bully me into being a good patient and he left as soon as he could. He was the doctor and he was supposed to know everything, but he didn’t. So all he could do was talk authoritatively to me and leave.  My hopes for a quick treatment and release were beginning to wane.

My next attendant was a young nurse who drifted lazily into the room in a Monday morning daze. She checked the knobs on one of the machines I was hooked up to and then casually asked me, “What are you doing here?”  If I were in my best frame of mind, I would not quite know how to answer that question. I have no idea what my response was. Whatever it was, it seemed to pique her curiosity and she proceeded to ask several more annoying questions. I finally had the presence of mind to ask her if she had read my chart. She said she hadn’t.   By this time I had repeated my story several times to a couple shifts of staff in the emergency room and now a couple of shifts of hospital staff. I was in no mood to do it again. I told her to go read my chart and if she had any questions to come back.  This was the beginning of me “loosing it.”

I don’t remember what the final straw was, but I think it was someone else coming to take more blood. They could not tell me why they needed more blood or what they were going to do with it. They were just going through the motions. My frustration tolerance threshold was finally breached. I felt like I was in the hands of people who were on auto pilot. They weren’t getting any closer to figuring out what was wrong with me. I felt like I was at the mercy of a system that didn’t have a brain.

I’ve had years of learning how to not cry when I’m in a pinch. Keep your head girl. Don’t let them see you cry. Stay calm.  Figure out a solution and put in into action as soon as you can and get yourself out of this mess.  By now I was so frustrated that I didn’t have enough control to stay calm. I started crying. I called my husband on my cell phone and asked him to come and get me. I wanted out of there. I was crying and yelling that I wanted out! These people were not helping me. They were only hurting me more each time they came into my room and they were not getting any closer to  finding out what was wrong.   This display of erratic emotions on my part seemed to get the attention of the doctor and he began working on getting me transferred to another hospital.  I had a lingering fear that they would transfer me to the psych ward.

My husband came rushing to the hospital wondering what on earth was going on. The Doctor and nurses intercepted him outside my room. They explained that they weren’t going in my room until he got there because I was so upset.  My husband said he could help so they all came in together. The doctor apologized for not being more helpful. He explained he had only been on this job for two weeks and was still learning the ropes. We made peace. He said he thought he had been successful in arranging a transfer to another hospital where I could get an angiogram and he would know within a couple of hours if it was going to go through.

Several hours later, quite late at night, the transfer was accepted.  Four ambulance drivers came into my room.  They were the high point of the day. They were respectful and light hearted. They were real. They got me on a gurney and into their ambulance and off we went on the hour’s drive to the other hospital. They told me stories about their kids and their job.  They asked my advice on how to stay married. I gave them whatever advice I had that seemed to work. By the time we arrived at the hospital we were good friends. We wandered around the halls for a while to find my room. It was actually fun being with them and for a while I forgot about how frightened I was.

(more later)

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)

Recovery Works for Physical Challenges

I wrote about this experience below at the request of the hospital where I received treatment for pulmonary thrombosis (which means “blood clots in the lungs).  While writing it up, I realized how similar this experience has been to my experience of recovering from mental illness. So I decided to share it with you on this blog.  By the way, I haven’t entered anything in this blog for several months due to being preoccupied with this condition.  Now I’m back!

I’m going to share this experience in chunks so we can look at the similarities step by step.  The first step in both has been my willingness to acknowledge that I was not well and needed help. I can see how I used my recovery and resilience skills to stay functional as long as I could.
But there came a point when those skills needed to be redirected to getting me the help I needed. You’ll see how challenging this was as I add more sections to the blog. This step is different for all of us, but there is common ground. Let me know what you think about the similarities.

My Journey through the Pulmonary Thromboendoarterectomy Wilderness to the Promised Land of Deep Breathing

June 30, 2017

I spent the month of May 2016, in Singapore. The weather was extra warm and humid, even for Singapore. I assumed this was why I was having trouble catching my breath. I kept complaining to my associate, Chris, that I was “drowning in the humidity and couldn’t breathe.” I had to stop and rest when we walked just one block up to the grocery store.  Catching the bus was even more of a challenge and my traveling companions had to wait for me to catch up. I had mild bouts of shortness of breath before traveling to Singapore, but at the time I explained them away as a sign of aging and didn’t pay much attention to them. Here’s a comment from the UCSD pulmonary patient handbook that explains my experience from a medical perspective.

The human body needs oxygen as an energy source for all of its functions. if the body’s oxygen supply is reduced, the body cannot function efficiently. One of the first indications that the body’s oxygen supply is inadequate is shortness of breath. Because oxygen is used for energy to perform physical tasks, shortness of breath occurs more often with movement or exercise.

I left Singapore and flew to Pennsylvania mid-month for a conference where I was presenting a workshop. I thought my breathing would return to normal once I was out of the heat and humidity. It didn’t. My ankles were swollen and I was still out of breath throughout the conference. I remember gulping for air during my presentation. Even in the face of this evidence, I was sure I would be fine soon and probably just needed a little rest. On the flight back to Singapore I struggled to make it through the airport during a plane change. I could barely walk or breathe. I had to stop after every few steps and rest. The usual signs of blood clots (extreme swelling of the legs, chest pains, etc) were not present except for the struggle to catch my breath.

Once back in Singapore I expected to get more uncomfortable due to the heat and humidity. And yes, it was even more uncomfortable than I had expected. Finally I had the courage to suspect something more than just the weather was happening to me. My denial held up though and my expectations of being “just fine” once home gave me the strength to override the fears that hadn’t surfaced yet.

(more later)