What I didn't put in yesterday's report was my encounter with Sabine's health insurance carrier, Group Health Cooperative of Madison -- ranked the 7th best health cooperative in the United States by Newsweek Magazine and the top provider in the state of Wisconsin.
To Member Services:
I can’t tell you the level of frustration I have about the coordination of my wife’s illness. And yes, I am her care provider and have a power of attorney for medical care.
Her illness (which is now diagnosed as multiple myeloma) began with severe headaches and nausea brought on we later found out by spiking high blood pressure from acute kidney failure. When we were released from the UW ER about six hours later, the ER doctor advised us to see our primary care physician because of a high creatinine level.
Her primary physician is Dr Hartges who was unfortunately leaving for a family vacation. Had Dr Hartges not had to leave on vacation, and because of our long family relationship with him of over 20 years, I think things would have been different… at least I hope they would have.
So Dr Hartges referred us to Dr Gherlan and an appointment with a kidney specialist, Dr Yevzlin. All well and good.
Now here is where things started to unravel. I think we had two more ER runs after midnight and then the first hospitalization on December 30 (I know, a bad time to get hospitalized).
The attack on the acute renal failure which was at first thought to be because of some ibuprofen ingestion when Sabine had a cold was IV hydration and then watch the numbers. Well, after a week or so the numbers didn’t get any better.
Dr Eckerle would come in but we never quite knew what his role was until one morning a green card appeared on Sabine’s bulletin board announcing that Dr Eckerle was “in charge” of our case.
So I started focusing on Dr Eckerle who assured us that he was coordinating this case and to call him.
But somewhere along the line Dr Eckerle was no longer available, rotated or something like that. We never had another person from GHC come along and take over. But we did finally schedule a kidney biopsy.
Then one day a hematologist came in and said that Sabine did not have interstitial nephritis (as most thought) but that her kidneys were being shutdown by being clogged with ‘B cells.’ She said she would get back to us.
Hmmm. B Cells, I wonder what they are? The “C” word was never uttered and the next day when I had researched what B cells were and knew it was some kind of blood cancer going on, no one came by – 24 hours of hospital room waiting. Quite frankly, I expect better.
To make a long story short, Sabine had a bone marrow biopsy and full body X-ray which confirmed the presence of MM. We had a nice meeting with Dr Sheehan in hematology/oncology and that very day we received the final diagnosis Dr Sheehan had Sabine hospitalized that afternoon and chemotherapy began that evening.
All along the way we felt a conflict between the renal and hematology teams as to the course of her treatment – that’s okay – but who makes the call? Is it really my job to call the lead docs and get them together? (When I did, it was the first time they had met one another). Wouldn’t a better system be for our GHC coordinator (if such a person exists) to call a meeting and decide a course of medical action?
Early in our hospitalization we had a resident, Dr Kari Kindschi, stay in touch and coordinate things, but then she got rotated to emergency medicine. Someone like her on staff is what GHC needs.
So, after discussion that we initiated between renal and hematology, Sabine will be getting a tunnel catheter this morning at UW Hospital and then going to the UW Dialysis Center on Fish Hatchery Road.
We met with Dr Yevzlin at the clinic yesterday morning. That went well and we asked Dr Yevzlin wanted us to begin dialysis Fish Hatchery clinic that afternoon, he left, and we asked for a tour of the facility.
We were not impressed. We thought it to be unkempt and crowded. The location is a strip mall and did not quite fit my professional expectations. Sabine's WBC is very low and, quite frankly, we were worried about infection as Dr Sheehan and Dr Juckett asked her to take neutragenic precautions and wear a mask in public places.
So I called GHC and ended up with Member Services trying to get Sabine's dialysis performed at the hospital due to her low WBC and new surgery.
It was not a happy encounter. I was on the phone for an hour. I was put on hold at least 3 times – one time for 10 minutes. I was told the dialysis had to be done at the clinic and not the hospital and that the UW Dialysis Clinic was our only choice.
Getting nowhere, I asked to make an appointment to speak to someone in management and was transferred after all this to Lisa, the Complex Case Mgr. I don’t know what happened to my request for a face to face appointment with management. I was upset needless to say but Lisa and I worked through putting Sabine on the Complex Case List (certainly Multiple Myeloma would qualify!).
My first encounter with what I believed to be the strong point of GHC from the time I was a board member in the 70s to the present time was that we provided for patient feedback into the system. I don't think it works and we have become another mega, corporate-like healthcare system.
But what I also want to tell you is that what saved the day was Lisa, and then Dr Chan calling us later in the day and assuring us that the procedure was needed and he personally reassured Sabine that the clinic would be okay and we could trust Dr Yevzlin (the newest guy in our life).
At the end of the day Lisa called back after talking with the folks at the dialysis clinic. They told her that, yes, the day was very chaotic with a shift change and some tracked floors at the time we visited...
Sabine's husband and caregiver, former GHC board member and former member until I had to transfer to the VA system because of a military radiation exposure,