When the Wheel Breaks
By Al Timberlane — Good Morning Ozark Journal
Part Three of Four: The Heart of Medicine Is the Patient
When Connections Break. Concept illustration of continuity in care, supplied by Al Timberlane. Example specialties; not a specific hospital directory. Select to view full size.
Lori T. with two dogs. Photograph shared by Al Timberlane. Select to view full size.
Good morning, everybody. I’m Al Timberlane.
Lori’s graduation photograph records an achievement. It also holds a story that the picture alone cannot tell.
We were living in Harriman, Tennessee. She was so weak that she had to be pushed up in a wheelchair for graduation.
She could walk at times. But she could become too weak to continue safely.
The photograph of her standing against rocks comes from around that same period. Standing for a photograph did not mean she was well.
Our family remembers severe difficulties with nourishment. I remember a period when she weighed about ninety-five pounds.
Around graduation, I believe a feeding tube was being considered. My recollection is that she later had a tube before receiving her first port at about twenty.
Roughly a year after graduation, she was generally walking without relying on the wheelchair as she had before. Improvement came over time, with ongoing care.
Our family remembers the port making a tremendous difference. Access allowed medicines to be given in a way that helped control nausea and vomiting. We saw her keeping more food down and participating more fully in life.
Later photographs show Lori with her niece during a period when we remember her doing well. Others show her as an older adult with her service dog, Legend.
Those are chapters of a life supported by years of care.
There is also a circulation chapter. We remember substantial upper-body swelling, a weight gain of roughly forty pounds, and being told that blood was traveling through alternate veins around a problem involving her superior vena cava.
We remember cardiovascular treatment at the University of Michigan, including a stent more than fourteen years ago and another later. The technical details belong with the cardiovascular team, but the experience belongs in her continuing history.
I call that my “Houdini” story. We will return to it.
For now, consider the wheel.
A university hospital carries knowledge through departments, records, teaching, and research. The patient’s connections can be more fragile.
A physician leaves. Another takes over. Information becomes scattered.
Lori remained under medical care. Changes in physicians did not erase the years before them. A later primary physician continued prescribing with an understanding of that connected history.
During this admission, our family reports that Lori’s port was removed and a PICC was placed. Complications followed. We witnessed swelling, dark discoloration, and bleeding. We understand that a large hematoma required surgical treatment to stop continued bleeding.
Medical staff removed the PICC. Lori did not remove it herself.
Our question now is how her continuing needs will be met.
If further access is considered too risky, what will replace it? Can she tolerate that alternative? What happens if she cannot keep down the proposed medicines or fluids?
In my opinion, a decision is nearsighted if it concentrates on one complication without adequately reassessing the longstanding need and the consequences of leaving it unmet.
The answer requires an explanation of both.
Repair the connection. Bring the earlier history into the present assessment. Show us how the plan will support her at home.
What matters most? A name on a wall, or the patient in the bed?
— Al Timberlane
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