Tuesday, November 19, 2013

Understanding lab results? This is exactly how NOT to do it, Kaiser Permanente!

Recently, the mPatient Radio program featured Dr Michael Misialek, a pathologist, about understanding lab results. For us Multiple Myeloma warriors, lab results are intense. Perhaps it's the same with other cancers, but since I only know myeloma, I stay focused on that. No two myelomas are the same and, therefore, before selecting a treatment protocol, patients and doctors need to fully understand their particular myeloma. Some are riskier than others, some tend to respond to treatment better than others. Age is a factor, as is general health. You get the picture. Tests that help determine that cancer include blood tests, a 24-hour urine collection, bone scans, and bone marrow biopsy (ouch!).

Which got me to thinking about when I was first diagnosed. My symptoms prior to diagnosis were incredibly vague. I had sore ribs. My husband, Rob, had grabbed me around the waste and fractured one of my ribs. Prior to that, I seemed to have sore ribs often. But then again, I got pregnant twice (I miscarried both) so I thought it was simply my body changing. I was extremely forgetful, which was odd for me. And by the time I went to see my primary care doctor at Kaiser Permanente in San Diego and asked for a CBC (complete blood count), I knew something was wrong. I thought it was mental-- my continual struggle with living with a (highly functioning) alcoholic who was extremely abusive.

At that office visit, Dr Anton didn't think there was anything alarming and prescribed an anti depression drug. I knew I wasn't depressed and though I filled the prescription, I never took a single pill.

Kaiser puts all their patients lab results online. So over the next several days, I would get emails from Kaiser saying that I had new lab results. I would review them from my phone or at home and since I had no reference and no doctor helping me decipher them, I would just go online and try to figure it out myself. After the first wave of blood tests, Dr Anton requested more blood work. Again, more emails saying my results were ready. I started looking up all the results myself. At this time, worry started creeping into my head.

Over Christmas vacation, I got a call from Dr Anton. That awful call no one wants to get. "You are severely anemic," he said. "But you are not iron deficient so we will have you follow up with a hematologist/oncologist when you get back."


So Kaiser Permanente (if you ever read this and, because I'll be Tweeting this blog post, I suspect you will read this): This is NOT THE WAY YOU DIAGNOS A PATIENT WITH A NEW DISEASE!!!! Instead of posting this stuff online, you call the patient into an office and go over it with us. We don't understand them and self-diagnosing without proper knowledge SUCKS beyond belief.

While Kaiser is a terrific place to have medical insurance if: 1) you have no other options; or 2) you have basic ailments, like colds and broken ankles... I am so grateful that I was able to get far superior health insurance elsewhere. I wouldn't wish Kaiser on any cancer patient. Kaiser can do far better, and they should. You just don't diagnose someone with cancer this way!