It all started in the fall of 2017. Pat, though she was not a fitness freak, had always been an avid aerobic exerciser. She practically wore out three stationary exercise bicycles in her 30’s and 40’s. Later, she became quite the walker. When the Fitbit craze was introduced, she needed no coaxing. She was all over it and soon became nearly obsessed with the famous 10,000 steps focus.
In early and mid-2017, Pat began to experience increasing difficulty in completing her neighborhood walks. At first, she described it as “running out of breath”, but later realized it wasn’t breath, but rather her energy that was depleting. She couldn’t walk further than 50 yards without stopping. She couldn’t endure any kind of incline. That’s what drove her to seek medical evaluation.
After voluminous testing, she was diagnosed with possible cardiac blockage of some sort. The cardiologist performed a scope, but no cardiac blockage was found. What was discovered was a femoral arterial blockage. Subsequent surgery removed that blockage, and as was predicted, she felt vastly improved, even before she recovered from the effects of the surgery itself. In short, the next six months or so were perhaps the most healthy-feeling six months of her adult life.
Unfortunately, all the testing uncovered another cardiac issue. She was diagnosed with Cardio Myopathy with mild Systolic Heart Failure. Her cardiac electrophysiologist said she needed a defibrillator implant. At first, she balked, stating that she didn’t feel ill. In fact, she hadn’t felt better in decades. However, after consulting with her cardiologist and primary care physician, who both agreed, she caved and reluctantly went through with the implant surgery on March 12, 2018.
The surgery, in and of itself, reportedly went well. The wound apparently healed well and the implant reportedly worked fine, though it never needed to intervene. There were no apparent visible signs of infection. However, the tenderness in the area of the surgical wound never abated. It should also be noted here that she was not given any special cleanser to use prior to her surgery, as is standard pre-op protocol.
Pat continuously complained about the ongoing tenderness and the lack of improvement thereof. She made phone calls and spoke directly to whomever would listen … the surgeon’s office nursing staff, the implant technician and the surgeon himself during all of her post-surgical office examinations. She and her husband even dropped in, unannounced, to the surgeon’s office and spoke in the lobby with his NP/PA. In every case, Pat was advised that there was nothing to worry about … all patients heal differently. We later found there to be no records, of any kind, for any of the phone calls or the visit with the NP/PA.
On the night of July 18, 2018, Pat developed an extraordinary and, at times, disabling pain in her spine. Having been treated for years for chronic osteoarthritis and two spinal surgeries, she assumed the pain was just another spinal bump in the road. She called her primary care physician who ordered an X-ray, which found nothing.
The pain worsened over the next few days and she developed chills. During a late-night visit to the ER on July 22, 2018, Pat explained to the ER nurse that she had a defibrillator implant. The ER nurse could not find this in her electronic health record. Pat was frustrated that the nurse could not find this in her record, when the surgery itself occurred just four months earlier in that very same hospital. She was admitted to the hospital overnight and released the next day, only to be called that evening to be advised that the cultures had come back with positive results of a staph infection. She was re-admitted the next morning, July 24, to begin what turned out to be several days and nights of testing along with oral and IV antibiotics and pain killers.
The conclusive results of the tests were the existence of massive, systemic, staph and other infections. In addition to them being systemic, the infections had found homes in her surgical implant cavity and on her spine.
That same week, on July 26, surgery was performed to remove the implant. The recovery team had trouble reviving Pat from the anesthetic. It took a lot longer than normal. Once she was returned to her room, she experienced some sort of delirium. The delirium eventually resided. Thereafter, the recovery from the surgery seemed to have gone well.
When the implant was removed, it was noted that not only was the implant loaded with infectious material, but the wire leads that went to her heart were loaded as well. When removed, infectious debris fell into her heart, and later found to have made their way to her lungs.
Over the next week, Pat experienced another delirium episode and she also begin retaining water and there was noticeable swelling in her ankles. On August 2, as she was walking around the IMCU floor, she suffered some sort of pulmonary event. She looked like a woman who was drowning. Dozens of medical personnel were quickly dispatched to her bedside, including a pulmonologist from the ICU. Her breathing was somewhat normalized. The ICU physician ordered that she be transferred to the ICU immediately.
And then it began … sepsis, more delirium and pulmonary trauma, cardiac issues, kidney failure, three admittances to the ICU with two involving intubation … all accompanied by a consistent, downward spiral of her strength, stamina, appetite and cognition. During a family meeting in her ICU room on August 22, where palliative care, cardiology and pulmonology teams were present, Pat was adamant that she was furious this had happened to her. She told the team in no uncertain terms, “I do not want to die”. She told the medical team to “do whatever it takes”. They agreed that as long as she was willing to fight, they’d keep fighting with her. It should be noted that this was the last time the family had spoken to the cardiology team.
Finally, after nearly seven weeks, Pat’s infections were all arrested. Her heart and lung capacities were diminished, but stable. The antibiotics were stopped and eventually, all other tubes were removed. Kidney dialysis was ongoing. Though clearly weak and utterly exhausted, she looked like a patient ready to be on the mend.
On Thursday of Pat’s sixth week in the hospital, the nephrologist paid her a visit. He approached the foot of her bed and told Pat and her family that she was in “miracle territory.” The next day he explained to Pat’s daughter that on paper, she should not still be alive. He went as far as to tell her “she is not so sick that she’s going to die in this hospital.” She was scheduled to start in-patient rehab the following week, with the goal of her being home by Halloween to accompany her grandchildren trick-or-treating for Halloween.
Some 48 hours later, just two days prior to going to rehab, Pat died peacefully in her sleep of heart failure.
We all agree, Pat’s inspirational fight to beat the infections and associated organ and system failures, exhausted her to the point she had nothing left. She won the battle, but lost the war.
What plagues us now, are the unanswered questions:
- Why did the pre-op protocol not call for her to use a special cleanser prior to surgery?
- Could a blood culture have been performed to ensure no infection existed in her body prior to surgery?
- Could sepsis have been detected earlier?
- Why had the cardiology team not spoken to the family for over 2 weeks prior to her death?
- Why do the protocols seem to be aimed at those who will fit into the fat part of the bell-curve, leaving those on the edges vulnerable and likely to become just statistics?
- How could the post-surgical, healthcare professionals not have seen the warning signs once Pat called it to their attentions … multiple times?
- Why is there no record of those multiple contacts to her cardiac electrophysiologist?
- When she called her PCP about the pain in her back, wouldn’t it have been useful for him to perform a blood culture then, in addition to an x-ray?
- Had those professionals taken the extra step to run a post-op blood culture for infection before it was too late, might Pat still be alive today? Even a few days might have made the difference.
Pat was a fighter her entire life. She fought this illness with everything she had, and she never lost her will to live. Her family honors her memory every day to keep her legacy alive, especially for her young grandchildren.