Evolving

It began one afternoon while my husband David and I were playing catch in the church yard across the street. Just a small cramp in my left side, accompanied by a strange pain in my left shoulder. It intensified, and I told my husband about it. He suggested we go inside and relax with a glass of water. As with most things of this nature, either it would get better or it would get worse.

Fast forward to the evening. We had gone to our friends’ house for a farewell dinner. They were moving to Texas, and we didn’t know when we might see them next. The belly pain had worsened, but this was an important event we didn’t want to miss. I remember sitting on a stool in their kitchen, trying to eat a sandwich, and finally deciding I wasn’t feeling well enough to eat. We went out to the back porch and joined the others at the party. David was sitting on the other side of the porch. After a few minutes, I realized I needed to leave, and quickly. I motioned to David that we had to go. As I stood, it felt as if I had been stabbed. Before I knew it, I heard myself screaming, as if it came from someone else. The embarrassment of making a scene vanished, and I realized something was terribly wrong.

My husband and our friends carried me to the car, still yelling and crying with pain, and we began to drive. I felt nauseous, my typical reaction to severe pain, but more significantly, I began to feel frightened. I noticed a blue “H” sign on the side of the highway, and told David to pull off and find the hospital. Not familiar with the area, we had no idea what services this hospital offered, but I felt strongly that I wouldn’t make it back to Pittsburgh, still at least 30 miles away.

Screaming and doubled over, I went straight back into the ER, where a doctor was called “stat”. He ordered a CT scan of my abdomen. I could hear the technician clicking switches and pushing buttons repeatedly. She sighed loudly, with a barely audible “shit”. She left the room. The doctor came back, and said that the CT machine was broken. I was to be taken via ambulance to another hospital in order to use the working CT scan there. I have no memory of the trip in the ambulance, except that David was not there and the siren was screaming.

The next thing I remember is hearing the doctor tell David that they were calling the medical helicopter to transport me to a trauma center in Pittsburgh. The CT scan showed a ruptured spleen, with significant blood loss. I would need a blood transfusion, and most likely, emergency surgery. I remember that the helicopter had no door. I was frightened that I might fall out. The turbulence from the spinning blades was deafening. Once we got to the hospital, I was taken to the intensive care unit, where I remained for six days. It was not a modern hospital. Beds were all in one large room, divided only by thin muslin curtains. I looked at the heart monitor over my shoulder as it beeped , and read the number 165 – I was experiencing sinus tachycardia. A young doctor was walking by, and heard the monitor beeping. He came in and pushed a button, shutting off the noise. I asked him how high my heart rate could be before we should worry. He told me that given my medical condition, a fast rate was appropriate. I wasn’t satisfied with the patronizing answer. I asked him when he would be concerned. He told me that at 140, concern was justified. Then he left the room.

I should mention that the date was July 2. July 1 is the day each year that begins training for a new class of medical residents. My “doctor” had been on the job for one day. No attending physician had been by to check on me. Realizing this, and given the response to my question about tachycardia, my heart rate inched up even higher.

My own doctor was unable to see me, or to offer any treatment because he did not have “privileges” at this hospital. Although he made a heroic effort to have me transferred to another hospital, our insurance company refused to pay for the transfer or the care I would receive thereafter since this hospital was a “Trauma I” center. I learned that splenic ruptures are graded one through five, depending upon the severity. Five represents a “completely shattered spleen” and one represents less than 10% damage to the spleen. I was a grade four.

The doctors were reluctant to perform surgery, explaining that the spleen is an important organ making up one’s immune system. Removal of the organ results in a lifelong lowered immune status, requiring various immunizations in order to protect the patient from the risk of serious illness. The recommended course of treatment was to “watch and wait”. After six days in the ICU and three on the surgery ward, my spleen intact, I was discharged. However, given that there had been no trauma or explanation for why my spleen had ruptured, I was terrified that it could happen again. Doctors told me this was not likely.

They were wrong. About six weeks later, the familiar abdominal and shoulder pain returned. I later learned that the seemingly unrelated shoulder pain is called a Kehr’s sign and is the occurrence of acute pain in the tip of the shoulder due to the presence of blood or other irritants in the peritoneal cavity. Pain in the left shoulder is considered a classic symptom of a ruptured spleen. Fortunately, I was at home and close to the familiar hospital where my own doctor practiced medicine. He called a surgeon he knew well, and my spleen was removed that day, leaving an incision from my sternum to my navel. After a couple of months, I felt well enough to resume my normal level of activity.

I am writing about this because the advice about being immunologically compromised, and a challenge, was correct. Since the removal of my spleen, I have been diagnosed with appendicitis (surgery was performed), ulcerative colitis, double pneumonia with sepsis, Fuch’s endothelial dystrophy (requiring cornea transplants in both eyes) and most recently, celiac disease, diagnosed last week via a blood serum lab test. Usually a biopsy of the small intestine is required for a definitive diagnosis, however, the recent biopsy of my colon shows damage characteristic of celiac disease, so one has not been performed.

This most recent development is a challenge. I spend much of my time researching food and cooking what many call “gourmet food”. I don’t really know what that means, specifically, but it is true that I enjoy trying new and different ways of preparing food. And I challenge myself to start from as far back as I can. For example, not only do I bake all of our bread, but I grind our flour from my own combination of whole wheat berries, and use those to make the bread. A regular item on our menu is cochinita pibil, a Yucatan dish made with a paste of annatto seeds. Cutting out all of the gluten containing foods will require me to form new habits, and a new way of thinking about our food. The way I *feel* about this most recent diagnosis is much more important than the specific ingredients I utilize, because my attitude will determine my success. I will simply incorporate my love for research and new ways of cooking into what many would consider a new restriction. No. Not for me. It is a new opportunity. Changing the foods I prepare will require a bit more intention. But regaining my health and being able to control my symptoms will be nothing short of a miracle.

The relatively recent epidemic number of people being diagnosed with celiac disease is strange, and causes many to be skeptical of the scientific basis for it. As my friend asked me a few nights ago, “Did anyone have this problem 20 years ago? Because I never heard of it back then”. I can’t explain the reason for the sudden popularity. And frankly, I have been skeptical myself. But after one week of gluten-free dining, I feel different. It’s better, yes, with less pain and fatigue. But I also feel much clearer with thoughts and memory. The amount of change I feel is absolutely worth the extra effort it has taken to re-think my diet. I feel better than I have felt for a very, very long time.