Dec 112010

KU Medical Center w/ "Out of order" sign

This will hopefully be my last post about my recent experience with the University of Kansas Medical Center (KUMed) with a bit of flourish near the end from the City of Kansas City, Missouri Health Department thrown in for good measure to make sure I’ve completely flushed my system.

The ENT Clinic

The first stop on my journey was the Ear, Nose and Throat clinic, one of the six departments that the hospital’s marketing department boasts of being included in U.S. News and World Report’s “prestigious” Best Hospitals list. You have to dig a bit more to learn that the department’s ranking is actually 29, and that inclusion is based on “quality data such as survival rates and procedure volume, as well as other criteria…”

“Procedure volume”, eh? Okie dokie.

As I have written previously, a FNA biopsy was unable to rule out the possibility of cancer, leaving surgical biopsy as the next step. The first visit with the doctor to discuss the biopsy results lasted only a few minutes, so it was also the first red flag that all was not going well if I was going to be an informed and involved patient. The next step—a far more invasive surgical biopsy—was presented to me as a done deal, including the information that my entire parotid gland might be removed.

When one receives startling and frightening news, it is not a good time for thoughtful questioning or explanations. A few days later I was so uncomfortable with the already scheduled surgery that I insisted on a second appointment to discuss my concerns and my options with the doctor further. During that followup visit, Doctor did manage to slow down long enough to actually listen to my concerns, and to her credit, she seemed to accept my decision to not permit the removal of the parotid gland. Only “a small piece of tissue” for the biopsy.

Still, it was telling that her own followup response started with “here’s what we’re going to do…” I tried really, really hard to like her and to trust her, and I am sure she is a very qualified and skilled surgeon, but her people skills left a lot to be desired. She did not endear herself to a patient wanting to ask questions, and she was always late to appointments despite being in a hurry to get through mine. Maybe she would have more time with patients if the hospitals “procedure volume” wasn’t so high?

Even knowing what I know now, including the risk that such a procedure could actually spread cancer, I cannot say with certainty that I’d be able to resist the urge to “know” what was wrong with my lymph nodes. Living with uncertainty is as difficult for me as living with risk. No one at the hospital even once offered me any reason to consider I might have options, or suggest that I could take more time to consider, let alone get a second opinion.

That is what all the books and help guides suggest: get a second opinion. They never tell you how to deal with the ego and regain the trust of the original doctor if you actually choose to do so.

The Operating Room

Despite my reservations and trepidations, I chose to go through with the surgery. The “need to know” was more than I could resist. After several hours of waiting for a surgery room to become available (my procedure was scheduled after noon, at my request, so Michael could be there after he got off of work), I was finally in the final prep area awaiting my own turn on the table. Doctor came in to do her final check and to “mark me” for the actual surgery. She stood by my bedside, her hand resting on the bedrail. I remember reaching out to make my own physical contact by touching her hand and mumbling something to the effect of “I’m in your hands now”. She visibly flinched at my tentative and gentle contact.

Did I mention that she isn’t a people person?

I remember little else, until I was in post-op, waiting to wake up enough for them to allow Michael to join me. I wrote off the look in his face as general concern and my own grogginess. Only later did I learn that he had just had his own, first encounter with Doctor, who told him that “it didn’t look good”, that I “probably had lymphoma”, and that I “would probably need chemo”. He was so distraught that he wasn’t even able to relate this news to me until after I had left the hospital the next day.

Post operative recovery

Though the plan was for the procedure to be an outpatient day surgery, I was held overnight to continue to recover and to monitor the drain that had been installed. The parotid gland is a salivary gland, after all, and it doesn’t stop salivating just because someone cut into it. I was also being kept comfortable and pain free with a combination of vicodin and intravenous morphine upon request.

Doctor sent a couple of her interns to see me the next morning. They looked at the collection bulb on the end of the drain line and saw a very small quantity of fluid had accumulated. Surprised, they pronounced the drain was probably no longer needed and trotted off to deliver their report to Doctor.

What they failed to note—and I failed to point out—was that my pillow had been soaked from fluid draining from the back of my head, where the drain was inserted, rather than down the tube and into the bulb. When the junior intern returned a couple of hours later to remove the drain and release me from the hospital, I tried to explain that the fluid was draining, just not in the bulb. Because the nurses had replaced my pillow a short while before he came in, there was only a small stain to show him.

I understand now that this intern must have considered how difficult it would be to return to Doctor and try to renegotiate the state I was in. It would make the senior intern look bad, wouldn’t it? The peer pressure prevailed and the drain came out and I was sent home, with a final dose of morphine as my reward for not protesting to much.

Less than 12 hours later my neck had swollen to the size of a boiled egg and I returned to the emergency room, in the wee hours of a Friday night/Saturday morning, as the moon approached its full phase. More than 4 hours later, the on call ENT had drawn off a syringe full of nasty brown fluid and advised me to return to the clinic for another drain Monday morning. The incision ultimately needed to be manually drained three times because the original drain was removed prematurely and/or never installed correctly to begin with.

Despite two trips to the ENT clinic, I did not see Doctor until twelve days after the surgery, on November 29. That was the day I learned that the biopsy result was benign. It was only after I got home after receiving that good news that I took the time to study the biopsy report more closely.

The “good news”

It turns out that Doctor’s office had received—and printed—this good news in their clinic on November 23. They had the biopsy results at least six days before I was informed. They knew I did not have cancer two days before Thanksgiving, which I spent with family, explaining the scar on my neck by telling them that I was waiting to find out what kind of lymphoma I had. Four days before celebrating Michael’s 60th birthday, which we spent at a dinner with a dozen close friends, Doctor and her staff had information that would have allowed us to relax and enjoy ourselves.

The anticipation of wondering whether we would receive bad news or really, really bad news was unnecessarily held over us for nearly a week. This, in addition to the other troubling mistakes has led me to decide I can no longer trust my health care to this institution, regardless of how many awards they manage to win from a news magazine.

Complaint and investigation

When I got the explanation of benefits from Medicare for the emergency room visit,  I called and told them that they should not pay the bill, as it was the result of the hospital’s negligent care. The representative corrected me and said: “if they send us a bill, we have to pay it.”  WTF?

I went so far as to file a complaint with the hospital’s review committee. which is responsible for investigating medical mistakes like this. A few weeks later I got a notice stating that they found no evidence of inappropriate care. Well, that’s one way to keep your ratings high in the national news magazine ratings. How can an institution be objective when conducting its own reviews?

Kansas City, Missouri Health Department

When I had heard nothing from Doctor or her staff for several days concerning a referral to the Infectious Disease clinic at KU Med, I started trying to find someone closer to home to help me rule out whether or not I had an active case of tuberculosis.

I discovered online that the local health department had a TB clinic, so I called them. I was simultaneously getting information from my personal physician and another specialist at a nearby hospital and I was trying to understand just how such a diagnosis is made.

However, when I called the health department’s TB clinic and explained my circumstances, the woman I was talking to became nearly apoplectic that I had ever been released from KU Med without being put on drugs, despite the fact that I have not yet been found to have TB.

Because my personal doctor’s practice is in an adjacent county, the person I talked to must have assumed I should first be pawn me off to that county’s health department. How her tone changed when she discovered I was a resident of the city. Her department, after all, is funded based on head counts, and the biggest dollars are for heads with “HIV” stamped on them. Suddenly, she couldn’t get me into “services” quickly enough.

I explained that I was under a physician’s care and I was getting tested to see if I needed treatment. She would not hear of it, insisting I come in and talk to her staff immediately. I tried to reason with her and to ask questions, but she kept talking over me: “Jonathan… listen to me… just listen to me. Jonathan, this is very serious. Jonathan… YOU COULD DIE!”

For the second time in about as many weeks, I lost it. I have made great strides in controlling my temper, but there are still a few hot buttons that just set me off. Having a doctor or nurse try to coerce me into treatment with a death threat is one of them.

I have been living with an “HIV positive” diagnosis for 12 years, thank you very much. I have buried dozens of close friends and loved ones since the early 1980s. I have experienced metaphorically journeyed experienced death using guided imagery and shamanic journeying. I cannot say I am not afraid to die, but I’ll be damned if that gives anyone the right to wield that ultimate uncertainty, regardless of how well-intentioned they might be.

When I relate my experience with these public health histrionics to other medical professionals, they just knowingly whisper… “they’re kinda’ like that”. Kinda’ like that?! Unlike private doctors, public health officials have near-police powers. In fact, people like me are not even afforded the basic civil protections we have from the police.

I’ve made calls to friends who know people in the health department and I’ve even gone so far as to share the name and number of my attorney to some online friends in case these bozos try to do something crazy, like detain me. I am acting responsibly. I have seen doctors, been examined and will be spending most of next week in a medical clinic.

My message to the KCMO Health Department: go find someone else to torment.

(Note: I am catching up on some rather old posts that never made it out of the draft folder for some reason. This post was originally written in December 2010, but is being published December 5, 2013.)

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