2001 Nov 16, Fri evening (con’t)
Dr. Dale told me that he would go ahead and obtain the specimens needed to run the culture so as to identify the specific bacteria. As he prepared to begin, I noticed he had a huge syringe and needle that he was intending to push directly into my wound, where my pain was the worst. It truly looked like a syringe for a horse.
I asked him if he was going to give me a local before he stabbed me. I recall he almost laughed at my request and said, “What’s the difference? A needle is a needle.” I knew that was bullshit. A local is injected with a very tiny needle, and immediately numbs the area.
All I had at my disposal was the sleeve to my hospital gown. I rolled it into a large knot and bit down on it. It wasn’t something Dr. Dale could gently slide in, either. He had to thrust it in, with force. His first forceful thrust wasn’t deep enough, so he immediately followed with an equally painful second thrust.
My jaw was locked onto that knot, but I never made a sound. The pain was so intense, though, I thought I was going to black out. He kept the needle in my wound for almost 15 minutes, and the pain never let up. From this and other events, I felt strongly that Dr. Dale was a true masochist.
Within an hour after Dr. Dale left, I was introduced to Dr. Joel, MD.
Dr Joel, an Infectious Disease Specialist, was brought in to take over my care (i.e., save my life). He would turn out to be one of the most impressive, compassionate physicians I ever met. He became another champion in my life.
Since he treats HIV patients, I was touched by his sincere, caring, and candid approach as to how “we” were going to combat the infection, and what “we” needed to do. He did also used the words “you are in a very serious condition” and we “only have one shot at this.” He explained it all slowly and with chronological detail.
Dr. Joel added that the bacterial test results would come back in 2-3 days, so until then, he placed me on multiple antibiotics until he knew exactly what he was dealing with. For the first time, I was beginning to feel that I had someone on my side.
After almost 12 hours in emergency, I was finally moved to a room that I’d call home for the rest of the month. Four months later, Dr. Joel confided in me that he didn’t expect me to survive that first night.
2001 Nov 17, Sat
I woke at about 04:30 with a fever of 101.1° F. It wasn’t my intention to wake so early, but the nurses were prodding, probing, and giving me pills to swallow. The longer you are confined to a hospital, the more you accept that modesty has no meaning.
From that point on, I was receiving meds and check-ups every four hours, 24 hours per day. Day and night didn’t matter anymore. I slept when I could, and I was awake when I couldn’t sleep. Most of the time the staff was friendly and open to chat, but other times they seemed to be on deadline, so we barely made eye contact. My pain was chronically intense, but I’d occasionally get those acute lightning strikes that would race down an entire side of my body. Other than that, the weekend was generally unmemorable.
2001 Nov 19, Mon (and on)
First thing Monday morning Dr. Joel arrived and looked very concerned. He went on to tell me that they had received the results from the lab about my infection (MRSA), and he determined that I needed to go back into surgery as soon as possible to clean out the infectious goo.
But then he said that when he told Dr. Dale of his findings, Dr. Dale said he could do it Friday at the end of the day. This infuriated Dr. Joel, so he asked me to raise the issue with Dr. Dale when he arrived. Remember this was Monday AM, and according to Dr. Joel, Dr. Dale wanted me to wait until the end of Friday for a procedure that should be done now, and take about an hour.
A few short minutes later, Dr. Dale arrived while Dr. Joel was still bedside. Dr. Dale went on to tell me that they needed to open me back up to clean out my wound, and he set aside an hour at the end of his day Friday. All stated as a matter of fact. And it happened to be Thanksgiving week.
I recall asking him if he do it sooner as I was truly in agony. His precise response and expression were much easier to remember, “I just said we’ll do it Friday” with a stern response and stare. It wouldn’t be the last altercation that Joel and Dale encountered, though Joel was sticking his neck out for me, and likely driven by medical ethics.
Dr. Dale got his way because he was used to it, and he was senior to Dr. Joel. He was the head of the neuroscience department at the hospital, and he took advantage of that power. He knew the condition I was in, and I still don’t believe he would have lost any sleep over my demise — I began to think he was hoping for it. It would be a long painful week for me.
On Tuesday or Wednesday, while watching CNN, one of those mission-critical nurses came in and seemed to be focussed on getting her tasks done. Since she was on a mission, I just kept watching the news, and paid no attention to her. By the time she hurried out, I couldn’t even tell you her hair color.
But once that door closed behind her, a chill ran down my spine. Something she did felt very wrong, yet I wasn’t paying attention to her; but the panic was only building. I played back the tape in my mind to see if I could identify what was causing me the anxiety. And as I relived the previous minute in slow motion, I quickly reached over and clamped off my IV fluids.
Somehow I was able to see it in the playback: one of her tasks was to give me a fresh liter of fluids. But in her rush, she hooked-up the IV to my arm without first bleeding the line. Air in your veins accumulates in your heart, and can cause a heart attack.
You see, all the air in the line would be pushed into my vein from the pressure of the saline above it. As my heart circulates the blood throughout my body, the air would make it into my heart and get trapped. Once the air pocket builds, it interferes with the heart’s function, causing it to stop. Ever try to use your car’s brakes when air gets in the line? Your brakes stop working.
To this day, I still have no idea how I was able to go back and determine what caused my panic. But if that had occurred while I was sleeping, I may have never woken up.
Instead of paging a nurse to bleed my line, I decided to simply bleed it myself. As I was beginning to disconnect the IV from my arm, a whole new saga would unfold.
While I was busy loosening the connection, my door opened and was immediately followed with a completely shocked, “What the hell are you doing?!”
I recognized the voice, responded with a sigh, then looked at the nurse specialist at the door and said, “Did you see the nurse that just left my room?” She didn’t acknowledge my question, nor did her face change — her mouth was still open, and she hadn’t blinked. So, I continued:
“Well, she just changed my fluids but neglected to bleed the line.”
Still no change. I believe she was initially shocked by what she saw, but then more shocked by what I stated. After she stood motionless for another few seconds, she came over, finished disconnecting my line, proceeded to bleed it, reconnected it, and quickly vanished from the room, heading towards the nurses’ station. She didn’t utter another word, nor was the event ever mentioned again.
Imagine having a Thanksgiving dinner on an airliner. The visual is almost humorous, right? OK, maybe funny to you, but it would have been an improvement for me. I even had to get approval to add mashed potatoes to my hospital holiday meal. Thanksgiving, that year, was both sad and lonely.
Friday morning rolled around and I knew at some point they were going to show up to prep me for surgery again. So before that happened, I had to get something done for me that they frowned upon heavily: take some photographs. They had not seen me use my camera, but they had seen it, and with that, said I was not permitted to take photos. Interesting new rule … I wonder why?
Friday after Thanksgiving
Right after my nurses did their morning rounds, I went to work. I got photos from my right side, left side, and my back. The photos were the only real means for me to see what condition I was in. Finally seeing my back was even shocking to me.
I was taken off to surgery late Friday afternoon, and once again, my hearing came back first when I returned to consciousness.
Care during difficult times
That hospital room was beginning to feel like home. By the time I left on December 2, I had been there almost a month. I was in lots of pain; but for the most part, I was well taken care of. I had mostly positive people around me, and although I enjoyed the good company, I never realized how critical it would prove. I had people available 24 hours per day to make sure I had what I needed.
The final surgery before I left was to insert a “pik” line from my arm to the left ventricle of my heart. For an additional 90 days at home, I was to hook up the most powerful antibiotic on the planet, once a day, for a slow, two-hour drip.
I felt positive and optimistic when I was discharged, but waking up on the 11th day home, I was in hell … I hit bottom. I discovered I had fallen down an incredibly deep, dark pit of dispair. I was all alone, I could barely move, yet now there was only me to take care of myself, while being a single parent to two grammar-school-aged kids.
A nurse would come to my home to draw blood twice per week so as to monitor the antibiotic. During week number six, I received a panic call from the doctor’s office. “Stop taking the antibiotic!”
Besides killing bacteria, that antibiotic attacked my immune system, and almost wiped out my white bood cells. They rushed a nurse out give me multiple shots to reinvigorate my white cell production, and switched me to an antibiotic pill.
I was immediately concerned that my medication was now weaker, but my pharmacist straightened me out. He told me that the FDA refers to it as the “antibiotic of last resort” and it was only the second time in his career that he filled a script for it.
Dr. Dale and his staff continued to exhibit a sense of uncaringness (not so for Dr. Joel). My first follow-up with the surgeon had been cancelled without me knowing it. The secretary told me that I was the only one that had been set-up with an appointment during his vacation, and while laughing, stated she thought for sure she told me.
So, she said to make up for it, she would give me his first appointment back the day he returned, about three weeks away. When I showed up that day at 8:20, I signed in and the receptionist called me back over. She informed me that I was not on that day’s schedule, and I told her I was. She called back to the secretary, and the secretary must have remembered since they said stay and we’ll squeeze you in.
I watch as that secretary continued calling other patients back without looking at me. At about noon I got up and left. I guess they were planning to squeeze me into their schedule at the end of the day. That was the last time I saw them, but I continued seeing Dr. Joel. Dr. Joel was a rare individual; passionate about what he did.
On my last visit with Dr Joel, I asked him how we know that the bacteria was eradicated. He said, “We don’t. It could return in a month, a year, 10 years or you may outlive it. But he also reminded me that, “the bacteria which did survive were the strongest, so let’s hope they don’t come back.”
It came back in 2009. My back swelled out again, and my temperature remained at over 101. I was getting ready to go to a hospice and die when, on day five, things began to improve. My own immune system stopped the infection. Who would have ever thought.
I hope that’s the last of it.
My attempt to eliminate my lifelong bouts with back pain backfired. I now live in chronic pain with intense acute pain. I have nerve damage to my feet and hands. Simply rolling over in bed is a slow painful process.
They kept me alive, but took away my life.
ADDENDUM: May 2012. I acquired pneumonia. The specialists agree it was likely cause by the MRSA bacteria.