Frustration

Yesterday we were able to get a physician from our Group Health Cooperative to oversee our situation. We will be meeting Monday with Dr Deb Williams from Internal Medicine at the Capitol Center. That was good news.

Up the roller coaster…. Down the roller coaster. Maybe it’s the nature of managing this disease that once things start to look better they get worse!

We met with the kidney specialist this morning and the old conflict reared its ugly head: do we put in a tunnel catheter or keep the temporary one in? Earlier the hematology people said that we should wait – the danger of infection with Sabine’s WBC count being so low because of the chemotherapy she is on.

But the kidney folks said that her kidney numbers are going up (5.6 creatinine level and BUN at 51) and that dialysis is needed. They also say that the temporary catheter in her neck is an infection site and dangerous whereas a “tunnel catheter” is safer because it is farther away from the heart and has a bio-shield on it.

So we had the kidney specialist (another new guy in our life) call Dr Sheehan (our hematologist and oncologist) and although we could only hear one side of the conversation the kidney specialist said that Dr Sheehan agreed we should put in a tunnel catheter and schedule dialysis. The good news is that the treatment plan will begin dialysis for a while, stop it, and check and see what the kidney numbers look like. The kidney specialist said that some folks do regain the use of their kidneys even after dialysis. This is something to pray for!

So we are scheduled for surgery in the catheter lab at the U.W. Hospital tomorrow morning at 11:30. And that Sabine is to begin her thrice-weekly, 3-1/2 hour dialysis sessions at the out-patient Kidney Center in nearby Fitchburg (just south of Madison).

Let me digress a bit… this afternoon I was greatly upset by the lack of coordination in our healthcare system. There were doctors that came and went and said they were in charge but were not. We had to do this, we had to do that… is that what we have paid for over 30 years? I am getting tired of being a case manager and care person. I thought that is what we paid professionals for… wrong!

When we heard the bad news today… kidney numbers going up… new doctors… the need for a permanent catheter… out-patient dialysis… it almost all came tumbling upon my head again…

I called GHC and complained about the lack of coordination. I was making a complaint and was put on hold three times (5 to 10 minutes each time). I was put transferred to different people. I wanted to talk to a person in management and they transferred me to a nurse during an hour’s phone call.

I was frustrated, angry and feeling the system was not working, but this nurse, Lisa, told me about a Critical Case Management Team that they had. But Sabine was not on it. But Sabine would be put on it and she would work with me to make this happen. The anxiety started to diminish. I felt like a person again. We would talk tomorrow.

But then something just as important happened. Dr Chan of the kidney team called us back. Dr Chan had been with us during the kidney battles of the last two weeks. He was someone we knew and trusted. Yes, he said, he agreed with the procedure, the dialysis clinic would be just fine… he would occasionally see us there. And it all became manageable again. The system, fragmented as it was, could work…

This was a draining day. I am a tough guy and was just about ready to say “uncle.” I worry about other people – people less informed, less assertive than I who would simply give up. Brothers and sisters, we need to change this system called healthcare. When you vote next November vote for someone who is committed to this goal and who will do it – and I don’t care if it is a Republican or Democrat. I want change. You do, too. Our lives and the lives of our loved ones depend on it.

As Edward R. Murrow said while signing off his radio broadcasts, “Good night and good luck!” God help us. As the Psalmist wrote: “Unless the Lord keepth the city, the watchman waketh but in vain!”