Dangerous Dichotomy

Good Morning All:

Figured I'd write today and let you know that I'm out of the hospital but I continue to deal with these fevers. To date, I have not had an infection that anyone can find and so the fevers are labeled neutropenic fevers which is doctor-ese for fever-of-unknown-origin.

A couple of nights ago I played a somewhat dangerous game that I thought perhaps might make for interesting reading--you be the judge.

There is one well known, often preached, unflagging rule that the blood cancer patient must live by: take your temperature at home, and if the thermometer ever reads greater than 100.4 you must call the on-call physician. Of course I have done this a few times and the pattern is the same. Since I have no immune system right now, and discretion is the better part of valor, the doctor admits me to the hospital almost as a matter of course. Once in the hospital my fever may, or may not, be reproduced but it is an unwritten rule that I will be monitored to ensure that I am fever-free for 48 hours before I will be released.

After this most recent hospitalization I was put on a pretty intense regimen of antibiotics, etc. and was told the visit the outpatient clinic daily. Wednesday was my first such visit and it was roughly the same as any other visit to the clinic except that they were working in the the administration of 3 IV antibiotics during the appointment.

I didn't feel great going home. I was still very tired from my hospital stay and chalked much of how I felt up to a lack of sleep. Instead of household chores I just curled up on the couch and dozed in and out waiting for Marla to come home with Audrey (Nolan had baseball practice). As the evening went on it became clear that I had a fever. I took my temperature after dinner and it was well beyond the 100.4 threshold. I opted not to call.

But its the rule, right? What if it was something to be worried about? Of course these thoughts went through my head but I also know this: If I take the same set of complaints (fever, chills) with me to the outpatient clinic I am much less likely to get admitted to the hospital. Of course, I wrestled with all the reasons that I should follow THE RULE. I weighed those reasons agains the almost assured return trip to the hospital and decided that I could wait until morning.

Ultimately it all comes down to what I have been rewarded for. So far, adherence to THE RULE has only ever garnered me a hospital stay. These stays cause disruption at home, are expensive, boring, and often fruitless when it comes to finding an infection source. On the other hand, by selectively ignoring THE RULE I have been rewarded by effectively avoiding a hospital stay for a neutropenic fever.

I recognize, of course, that this will not always work in my favor. That failing to follow doctor's orders could have very serious consequences. However, I feel like "they" have forced my hand to at least take into account a number of factors before I give in a call and thereby admit myself to the hospital.

I'm certain that this is not what the team of doctors intend a patient to do but it is what they have established through their actions. The outpatient clinic does a good job of taking into account the patient's desire to stay home and get better at the same time. The Doctors seem to over rely on the inpatient hospital admission and the rules of thum that keep the patient away from family a minimum of two days. I think the doctors could learn much from the outpatient clinic and the focs on the patient's needs and desires. They might find that the patient is more apt to follow the doctor's orders if they did.

As always, thanks for reading.

--Russ.