Tuesday, January 19, 2010

LOFT LIFE: Navigating the medical system

My husband wants a GPS. I tell him I AM his GPS, and much more flexible, even accurate. But my road navigational skills are nothing compared to my ability to wend through the ocean of complication that is the health care system.

Starting with the clinic that diagnosed pneumonia, which was NOT pneumonia, a radiologist who agreed with the erroneous diagnosis (assuming infection is visible on x-rays as pneumonia), the radiologist did detect the “nodule,” which launched me to the next destination: pulmonary specialist.

NOTE: the office manager in my dentist office, dear, encouraging woman, told me her mother had a lung growth and was sent straight to an oncologist, not a pulmonary specialist, which she thought was encouraging in my case.

Now that I think about it, maybe x-ray infection just looks like infection, and Dr. G.’s sureness that it wasn’t pneumonia might have been from my 98% oxygen levels and not from the x-ray picture at all. That makes sense. Geesh. A person has to be a logician to get ahead of these guys.

Anyway, before I could move to the next port: CT Scan, Dr. G. said I needed a blood test before the scan, and that it was required for someone my age, just in case I had kidney problems. I told him I had great kidneys, He said, “How do you know?” I replied, “I would be yellow if I had problems.” He just shrugged. and his dear office manager argued that the lab he was sending me to did NOT require the blood test until a much older age than I. That meant I could go right to the CT port without having to do the time-consuming Q &A with Dr. G. about what this age-related blood test was about.

Tired yet?

So my CAT was scheduled for the next Friday. Of course, I had to know 1) how much would it cost? 2) do they discount self-pays like us? and 3) what is this contrast dye that is so gnarly that a blood test is needed, and maybe 4) what would happen if i do not want the dye?

After literally a dozen calls to the lab, with not one person who would answer my questions, no one knew anything about the cost of a CT scan of the chest with dye.

My friend Andi said to Google diagnostic labs in Connecticut until I found my answer, I did, and found Jefferson Radiology. They were not only friendly and willing to talk, they actually knew the answers. (I did tell you this ocean needs lots of skill to sail.)

The billing department priced me at $1090, said they DO discount self-pays, then transferred me to the lab for my other questions. Though they were nice, they suggested I Google contrast dye. (Seeing a pattern here?) They explained the kidneys have to have good creatinine levels to handle the dye without risk of side effects that could be serious.

So whatever it is, it is heavy-duty enough to have to measure creatinine levels in my kidneys, I thought. So I wanted to know. Google’s answer was gadolinium, which turns out not to be the dye my CAT used, but oh well.

After reading side effects of gadolinium, if creatinine levels aren’t right, I was horrified. Among possibilities are: thickening of the skin, compromised bones, blood vessels, yellowing of the eyes...rashes, hives, etc.

I called Dr. G’s office, explained to dear office manager that I was just wondering how important this dye was to diagnosis, that I should risk being a thick-skinned, crippled, yellow-eyed old woman just to find out that the “nodule” was nothing. I was feeling asea.

She assured me my questions were good ones, deserving of answers, and she would have Dr. G call me.

She must have given him a piece of her mind. Dr. G. sounded somewhat recalcitrant and almost personal--and did proceed to answer several of my questions, convincing me that “if it should be something like a malignant tumor” the dye would help him see that. Maybe we should do phone visits in the future.

I also asked them to cancel the first lab and go with Jefferson. (On my 13th call to the first lab, I got a range of $1000 to $2000.) We agreed the range was too broad and vague. So she booked me for Tuesday at Jefferson. Only problem was, Jefferson required the blood test for my age. Phew.

I warned you that once you are in the system, the waves can get choppy. All this pro-active stuff takes stamina. Really, if you need to go get a cup of coffee, or something stronger, I understand. Just relating the facts, so that should you ever need a CAT scan, you know the ropes.

I then booked a blood test back at the clinic. It turned out they do not do blood tests, but there were two possibilities in the same building. I chose Quest, a very positive experience. My phlebotomist was charming. I asked my test question: “Are you a vampire or a gentle soul?” She replied, “Depends on how I feel.” The twinkle and sense of humor let me know I was in good hands. I was. I will buy stock in Quest. Good outfit.

Then the waiting for the blood results. Dr. G sounded happy again, this time at my creatinine, so I was all set. So, glad to bring him some joy in life.

I had planned to drive myself to the scan, but my daughter, Melissa, leaned hard on me to get Jay to drive, if only for the emotional support--which I never believe I will need, but did.

The scan was a bit more traumatic than I expected. The dye felt heavy, I was dizzy and, though they said it would be in my system for 90 seconds, they really meant 90 seconds for the test part. The dye affected me a day and a half: headache, dizzy, nausea, and a heavy feeling. Thankfully my eyes did not yellow and my skin remains un-thick.

I do have to add that the front desk personnel at Jefferson in Bloomington are exceptional. At least these doctors--and that is at all of my providers--know how to hire the best. Thank you all for your compassion, competency and humanity. It makes a huge difference to a patient.

More waiting. I’ve been very tired, off and on--well enough to go on with stuff like writing, laundry, cooking, and getting the mail, but not good after four hours or so of being up and about. Haven’t felt well enough to do much else. Probably it isn’t the “nodule,” but the lingering effects of a serious bronchial infection.

All in all, I know a lot more about the world of CAT scans and dyes, and why they’re the best thing since sliced bread. Truth to tell, I’m hoping the test shows nothing. But, in case it isn’t nothing, and in case this whole ordeal of mold-induced chest infection turns out to be for finding some little lung lump early, I guess i am grateful. No, I AM grateful.

Most of all, I continue to count my blessings: a loving family, great, caring friends, and even a medical system that, if you keep a persistent eye on things, works pretty well.