As I typed the title, and "Part 11," I stopped and walked away from the computer for a few minutes. I am astonished, and not in any sort of positive way.
When I began these posts with the label "Ken's Ordeal" I had no idea that there would be so many installments. And here I am, one year later, and I look outside, and once again the ground is snow-covered. Spring and summer came and went with no real answers and no celebrating of restored health.
As I wrote in Part 1, Ken has been increasingly ill for some time. No one paid much attention.
Anyway, the tumor was discovered in December of 2012, as the urgent care doc looked for possible kidney stones. It was, he said, "Pretty common, likely benign, and usually nothing to worry about." He told Ken to make an appointment with his primary care doctor after the holidays.
And then Ken's rapidly deteriorating condition grew alarming, and I took him to the Emergency Room in a snowstorm, praying all the way that he would make it. As the days in the hospital passed and tests confirmed that the nothing-to-worry-about tumor was very dangerous indeed, no one seemed too alarmed about the hand swelling he was developing nor the horrible pain in his back, shoulders, hands and neck. It was all likely part of the strange array of symptoms caused by the tumor. After all, they were so rare no one really knew quite what to expect from a patient who had one.
Weeks went by as Ken took meds to prepare him for the risky surgery. The tumor was removed in February. And Ken's erratic blood sugars became more stable than they had been in years. And his weird "episodes," that I have written about in previous posts, ended. And his high blood pressure became a bit on the low side--and we breathed sighs of relief. But his pain continued, and his weight loss continued unabated. Tests revealed nothing wrong. He tried stronger and stronger pain meds. Alarming loss of weight (and height) continued, along with fatigue, worsening depression, and general illness.
I won't retell the whole story. I wrote in September that after multiple visits to Mayo Ken was told he likely had a rare kind of Rheumatoid Arthritis or some other rheumatic disease. And his knee replacement, the one he had about ten years ago that had never been right, would have to come out. There would be no treatment for the rheumatic disease until the knee was dealt with because treatment for the RA would increase his chance of infection, and taking the medication could even prove fatal if there was hidden infection in the knee. The knee surgery would be extensive but needed to be done "as soon as possible."
Back in September, I wrote that Mayo doctors requested that the procedure be done there. The Veterans' Administration denied the request. He would need to come to Milwaukee. Not long after that, we were informed that he could expect to soon have his "fee based" status changed. That means any VA payment for services outside their system would end and he would be assigned a doctor in the VA clinic.
Earlier this month Ken was finally assigned a primary care physician at a VA clinic about a half-hours drive away. The clinic was reasonably spacious, and the staff was pleasant. We spent nearly three hours there, and we really didn't explore anything in any depth. The doctor, who seemed competent, was forthright in acknowledging that he had not looked at the numerous records from Memorial Hospital in Sheboygan, St. Luke's Hospital in Milwaukee nor anything from the numerous visits to Mayo. He simply didn't have time.
Then, a few days later, we went to Milwaukee to the "big VA" for a visit with an orthopedist. We are still waiting for the knee surgery that needed to be done, "right away." I have no desire, nor does there seem any point, in detailing the numerous frustrating reasons for delay.
I couldn't help but contrast the VA with Mayo. The VA is overcrowded. The buildings seem always in need of paint or repairs. The furniture is a bit shabby. The magazines are sometimes years old. Scratches abound on walls and at the bottom of doors. There is no parking ramp with elevators, just a big sprawling, always-full parking lot. No beautiful artwork at the VA either. Instead the walls are graced with the same posters that have been there for decades. No music and no beautiful atriums or highly-polished floors. No Chihuly blown glass here! However, the people at the VA are helpful, and the majority of the staff, though obviously sometimes overwhelmed, seem to care.
The orthopedic clinic waiting room was overheated and very crowded. On a table with the usual dated magazines stood an ugly plastic rubber tree plant. The pictures on the walls were badly faded. We sat in the waiting room for well over an hour. When we finally got to see the doctor, he apologized, saying that the other ortho doc was out sick. After the usual exam and review of Ken's history, the doctor told us that it was clear the knee replacement was loose and it had to come out. He ordered more tests to try to discover any infection. He scheduled some sort of special three-stage bone scan that will be done in January. Then he told us that surgery would have to wait for three to four months. The waiting list is long and they are overwhelmed--too many veterans and too few operating rooms. He said the surgery might be able to be "fee-based" meaning it might be approved to take place outside the Veterans' Administration system.
BAM. BAM. BAM. That is the sound of me beating my head against the wall. Not really, of course, but inside my own imagination. Hadn't we all but begged for that, back in September? We waited nearly four months only to be told that we might be able to go elsewhere.
And he suggested that Ken not wait to schedule the appointment with a rheumatologist. Even though treatment from those doctors might have to wait till the knee procedure was healed, it might be a good idea to meet. So we scheduled an appointment.
And, as it turned out, something surprising happened. More about that soon.