I started over.
After the easy intimacy I had developed with my caregivers in Amsterdam, the brisk efficiency of the highly organized unit at Shands was both welcome and offputting.
Given the late hour, I was surprised to be enthusiastically greeted by a team of nurses as Victoria rolled me into the unit, and I was quickly settled into a huge private room with a big screen TV, a nurse-calling/TV-tuning/AC- controlling remote, and a private bathroom. America! A doctor materialized at my bedside within minutes, taking the paper and CDs containing my medical records. After failing to access my wiggly veins, my nurse called in a stat nurse to insert an IV for future use: true to her designation, the stat nurse was immediately successful. I was impressed.
A couple boxes of Corn Flakes settled me in for the night, my bed alarm on to ensure I’d call a nurse when I needed to use the bathroom. I was a fall risk, and the unit took that designation very seriously. After the freedom of managing myself for the last several weeks in Amsterdam’s OLVG Hospital, I felt hemmed in. Okay, so I was still a patient.
The next two days were so filled with medical interaction that it felt like a full week had expired. Vascular had the lead: what would they say upon review of my three CDs of images? Rheumatology was close behind: autoimmune disease might still be the culprit. Physical therapy and occupational therapy needed to assess my physical and mental readiness. Nutrition added Ensure to my diet (it sort of went with the paper diapers) to bolster a bit of weight gain: my body had added back only 15 of the 30 pounds I’d lost in the ICU. And, of course, there was blood to be drawn, vitals to measure, medication to take, meals to enjoy, and the ascents and descents of the Shands medivac helicopters to watch from my bed.
The private room was the norm in the unit: the bed Shands had identified for me was in the Bone Marrow Transplant Unit. Throughout my stay at Shands, I knew that my neighbors had it way rougher than I did, and that knowledge began my USA recovery. Gratitude.
Meantime, Ray was finally off the clock; after three months of living on his own in a foreign country and sitting at my side every day, my husband relaxed at Victoria’s apartment and even slept late. Victoria found time in between her work assignments to keep me company, and both of them were with me when vascular ordered a new CT scan to check on the health of my blood vessels. It came back clean except for a little blood where it shouldn’t be near the May 5 incision used to seal the leak in my artery. After running a few more tests, the vascular team decided against an intervention, preferring to see if the problem corrected itself in a few weeks. It was looking good for discharging me into the civilian world.
However, rheumatology still needed to rule out an autoimmune diagnosis. Although the eventual diagnosis was Segmental Arterial Mediolysis (SAM), my doctors in Amsterdam had not ruled out autoimmune: I had been on steriods for several weeks while in the ICU. And there was a family history: my mother had Reynaud’s disease, her brother had scleroderma, one cousin on my mother’s side has a genetic marker for sjorgren syndrome, another cousin recalls our grandmother having lupus. And if what I had was autoimmune vasculitis, there was a cure, unlike SAM, although one doctor described the treatment as akin to chemotherapy. I thought of my neighbors in this Bone Marrow Transplant Unit and tried to be brave.
Rheumatology wanted a closer look at my belly, via angiogram, which would mean punching a new hole in my groin through which to insert the recording device. Vascular pushed back: given the uncertain status of my May 5 incision, adding a new incision might bring complications. How about using the May 5 images?
These didn’t appear in my three CDs of records, and so, once again, my Amsterdam doctor came through: responding to Victoria’s email long after office hours, Emo sent us six images, apologizing for these not being included in the original set. Shands directed me to forward the images to radiology to be uploaded into my file.
“No can do,” the technician responded. She needed a link though which to access the images as official hospital records; pictures attached to an email failed the test. Various faxes and emails between Shands and the OLVG Hospital revealed a cultural divide that could take days to negotiate. Emo asked “What is a release records request?” Meantime, we knew the images we had were either useful or not, no matter how they were acquired: couldn’t rheumatology just have a look?
The answer was yes, eventually, and, even better, the images reassured the Shands team that what I had was not autoimmune. I breathed a huge sigh of relief and prepared myself to be discharged. After 96 days as a patient, I was about to be released back into the Real World.