Yesterday was my birthday. My mind naturally traveled to the past while reflecting on the present. Where have I been? How did I “get” to this place in time? What experiences have shaped the woman I am today? At certain times during the day, I found my thoughts tinkering with my history; pulling the dusty boxes of memories off the shelf and peering inside them. Some were filled with joyful adventures, parts of my life that feel like an exotic dream (I did that? I was capable of that feat?!) But, there are, too, those memory boxes filled with reminders of the intense medical experiences I have had over the last 7 years in particular. 7 years!! No wonder, at times, I feel like I fell down the Rabbit Hole only to emerge, like a science fiction character, in some distant, unknown future land, future time.
Cue “flashback music” . . .
I was 34 years young, struggling with increasing pain and rheumatologic symptoms, fighting for years to get a correct diagnosis. I finally received same; I was told I had a rare autoimmune condition called Relapsing Polychondritis. Upon research, I discovered a mere 600 other souls had this same disease as me, and that over half of them had been treated by one particular doctor, David E. Trentham. Behold! He was a scant 6 hours away in my old stomping ground, Boston. We were excited to both discover this resource and to also have it be available to us in the land we called home for many years. Road-trip!!
I was quickly accepted into his office and appointments were lined up, plans made, suitcases pack. We hit the road with hope for my medical future, the first time in a long while we felt this way. Of course, my array of symptoms being as varied as they were, I was also experiencing some abdominal discomfort that was unusual at the time. It was waxing and waning, causing sharp, stabbing sensations along with bloating. Two days before leaving for Boston, the pain was becoming more unbearable, and, hence, more concerning. I left a message with my primary care doctor about my concerns and when he called me at the end of day, he was brief and extremely abrupt. He started with a quick over the phone diagnosis: “Sounds like you have a UTI.” I explained that this felt nothing like a UTI, and he interrupted with the following extremely unhelpful (and unethical) statement, “Well, I don’t know what I’m supposed to do for you. I’m leaving town in half an hour for a conference.” Again I tried to get my concerns across, and discovered he had hung up on me after declaring his scheduling needs!
The following morning, the symptoms had increased and I called my primary’s office back to get an urgent care appointment. Upon seeing another doctor in the practice, he had noted in my chart that my regular PCP thought I may have a UTI. He commenced with a pee test and instructions to call back; visit over. I sat there with my shirt pulled up, saying, “look at how distended my stomach is!” He never examined me and advised me that if I continued having concerns, he was now passing me off to my GYN.
Well, I certainly did “still have concerns!” Soon as I got home, I called my GYN. Now, I also have a history of ruptured and invasive ovarian cysts, so I thought this could be a definitive cause of my symptoms. I spoke with my GYN over the phone, and he too acted like an alien had taken over his mind. He kept saying, “Sounds like you’re constipated!” “Nope,” I replied, “I’m pooping regularly.” “Well, I can’t get you in to see you. So drink lots of water and take a brisk walk!” I found out later this “brisk walk,” literally could have killed me. What was wrong with the world today?!
Over the next several days, we traveled to Boston where I met with Dr. Trentham. I only briefly mentioned my abdominal symptoms because I had been told they were “no big deal” and wanted to maximize my time with him discussing the Polychondritis. But, some funny things were happening… he had ordered a spiral C/T to diagnose cartilage damage in my trachea, and they had discovered “free air” between my lungs. Not a typical finding! As well, my “tummy crud” was getting worse and more frequent. Dr. Trentham arranged for us to see a pulmonary specialist in Boston in one week’s time. We returned home to Rochester in the meantime.
During the next several days, I called my GYN again with the C/T findings, etc. (after a scheduled appointment with NP in that office was cancelled… by them!) and requested an ultrasound. They said there was no time before I returned to Boston. So, I took matters in my own hands and scheduled one with no problem. On this imaging they discovered large amount of free air in my abdomen. Another red flag, doctors!
Now, here comes the Rabbit Hole…
By the time we got back to Boston, 10 days after my symptoms had started, my stomach was 7+ inches distended (!) and I would be gently (not briskly!) walking when I would double over in pain and almost pass out. I remember lying on the hotel floor imagining myself pulling toxic goo out of my stomach. I took my hands and drew all this crud to my belly button and out; I could picture green globs trapped in bubbles, heavily floating away, which I would then shoot with my imaginary Annie Oakley gun into oblivion. I truly believe this intuitive visual exercise prolonged my life!
Friday morning arrived, the day of my pulmonary visit, and I was now hallucinating. The pink and green swirled hotel carpeting would take life and dance before my eyes. Lightning bolts of pain flashed across my belly. But, for some God forsaken reason, I kept trucking along, even going as far as completing my pulmonary function test in this “altered state!” It was two pulmonary fellows who would in the end save my life. They came in to exam me, and upon reading my C/T scan and physically examining me (what a novel idea!), they immediately told me I had to rush to the ED; this free air was not from my lungs, it was coming from my abdomen. Not good. Not good at all . . .
I then found myself all alone in the ED department; my husband off to check into our hotel. By this point, it is like I had eaten a pound of psychotropic mushrooms; faces are melting, walls are breathing. I am living in the middle of a Dali painting. I can tell I am going to pass out any moment if I don’t get help, so I start the long journey from my seat to the desk. I am walking like Gumby, rubbery legs and arms struggling to remember the simple act of taking steps. With each exaggerated stride, people’s faces were like cartoon characters, enlarged heads and distorted features leaning into my face and then away. It was like looking through a fish eye lens.
Well, I made it to that desk, and they immediately placed me a on a gurney. By the time my husband returned, I had learned I was a “very, very sick young lady who was extremely lucky to be alive.”
My colon had ruptured (perforated) and I had been septic for 10 days! Basically, a medical implausibility. I learned that this was like a person walking around with a ruptured appendix for over a week. But, being my colon, which is the last part of your bowel, I was filled with feces and infection (hence the infamous “green goo!”). The doctors felt the only thing that had kept me alive was the fact that I was on 80mg. of Prednisone daily at the time for my disease (about 16x a regular dose!).
Then, we received the most harrowing news I had ever heard (up until that point) . . .
It was around midnight, I was on deck for the next available OR room. The resident came in and asked Dave and I if “we were prepared?” We replied that, yes, we’re all “prepared” for surgery. And she shook her head. “No, I mean, have you said your goodbyes?” We sputtered, “What?” “You have to know, this surgery is extremely risky and your wife is incredibly sick. She is dying and there is only a 10% chance she will make it through the night.” 10%! But, we did not say good bye. We said “I love you.” We said, “I’ll see you in just a short bit.” We believed. We had hope.
This was only the beginning of a 5 year saga, one that will come more and more into the light as I write my blog, I’m sure. But, as I am reflecting on the anniversary of my first birth, I also remember the times I’ve been reborn since. I know there are angels watching over me; there are so many ways I was “saved” that fateful night. But, I think the strongest medicine, was already inside me. I refused to take the doctor’s (inept) assessments at face value without advocating for my own care. I believed I was ridding myself of toxins lying on that hotel floor. And I had unwavering faith that I was going to make it through that night.
So, I may have “lost” half a decade or more to this one crazy chain of events. But, I’m alive today to tell my tale. I’m alive today to pull myself out of that Rabbit Hole and into the Light of Life!