Today is the five-year anniversary of Katy being admitted to Lahey Hospital’s liver transplant unit which started with so much hope but ended two weeks later with bitter disappointment, overwhelming grief, and deep sorrow. In hindsight, the anniversary should have been observed yesterday. I want to share the back story of why one lost day may have mattered in the outcome not for pity or sympathy but for a call to action and a plea to find your rallying cry.
Five years ago, we began the ultimate rollercoaster ride. We discovered in June that Katy’s liver was severely impaired for no obvious reasons. As we met with specialists to determine a treatment plan, Katy experienced the first of two serious internal bleeds that landed her in long hospital stays. During the first stay, we learned about MELD scores and the excruciating transplant process where you needed to be sick enough to warrant a transplant (a high MELD score) and well enough for the transplant team to be confident that a donated organ would be accepted (not too high of a MELD score). As Katy recovered from the first bleed episode through July, she had a major setback with a much more serious, second internal bleed trauma. She was induced into a coma, placed on a ventilator, and faced a choice between two thorny options. Wait it out and see how she improves on her own or attempt a risky procedure to reroute the blood flow in her liver hoping it would stop future bleeds. The downside was the procedure could accelerate her liver failure.
We chose option #2 leaning on our faith that by buying time we would give her a chance at receiving a new liver – her only viable path. After two attempts at the stenting, the bypass worked, and amazingly, she recovered enough to return home by the end of August. Gaining strength at home, we awaited instructions about the transplant process.
As healthcare professionals, we felt fortunate to understand more than the normal patient. Even with our “inside baseball” knowledge, the plan was murky at best. Coordinating between a community hospital and a large teaching hospital located in different states required constant babysitting and taking control of the information exchange orchestration.
Never known for our patience, we decided to visit Lahey unannounced prior to recommended recovery time at home. Thankfully, a transplant coordinator welcomed us gladly and quickly realized Katy was failing fast and needed immediate attention. Her main pre-requisite for admitting her was to receive a full medical record from the local hospital.
After many phone calls, failed fax attempts and unsuccessfully tracking down faxes allegedly delivered somewhere within Lahey, I raced back to NH by car and barged into the medical records department. After filling out countless forms and waiting on the copy machine, I finally had her medical record which rivaled a telephone book in hand. Hurtling back across state lines with the goods in tow, we were able to get her admitted to the transplant unit – a full day later from our first encounter with the coordinator. Katy’s MELD score was high enough to instantly place her 2nd across New England’s waiting list but precariously close to the ceiling where she would not be considered a healthy candidate. As we waited over the next two weeks, we prayed in the strangest context – needing a tragedy to deliver the missing puzzle piece.
On the floor, there was an unspoken buzz when an organ became available. A swarm of doctors would rush into her room and assess her readiness in real-time. Nothing will ever compare to the heartbreak when the department chair pulled me aside and told me a liver was en route but Katy was no longer considered a viable candidate. We had missed our window.
I will never know if the lost day due to paperwork and poor information exchange between the two providers would have made any difference in Katy’s outcome. Guessing games, pity parties, and worrying about things out of my control are not for me. We were blessed with two awesome, resilient kids, a wonderful career, and a tremendous support system.
To continue honoring her, I am now on two missions:
- Urge everyone to be an organ donor and help spread the word.
- Eliminate paperwork, manual handoffs, and mishandled information exchanges from the equation throughout the healthcare system.
I realize these are both lofty goals with many others on the same mission, likely with different perspectives. I welcome the opportunity to collaborate and share ideas on how best to deal with the crushing administrative burden and the inevitable burnout by those staff members tasked with the countless information requests.
As CEO of Biscom, leading information exchange and cloud fax platform business, I am both humbled and energized by the opportunity to improve patient experiences by doing our best to remove administrative friction from the system. At this five-year milestone, I can count on many cheerleaders including Katy to rally the troops and provide encouragement along this journey. Hope you will take me up on my offer to reach out and learn more about these personal missions.