3-14-11 Monday + 4 ½ months
Happy pi (π) day. More about that in comments. It’s been a while, simply because I was given 10 days off between visits to Hopkins.
Status: Felt a little crummy this last week, loss of appetite, GI problems, dry mouth, oral thrush, more skin rashes – all due to graft vs. host disease. Luckily, today’s appointment was set up to talk with the GVH guys.
Events: Good news was that hematological values keep improving, platelets now at 100,000 and going the right direction. On the other hand, my lung CT scan showed some progression of what they think represents fungal infection, most likely with Candida, the same organism that causes vaginal yeast infection and thrush in the mouth.
Orifices of the human body (mouth, vagina, etc.) are not sterile places. Those openings are colonized by millions of micro-organisms in a complex but balanced ecosystem. The organisms live together in harmony, much like animals on the African plain, competing for space, nutrients, and the like. No one organism dominates.
But change the ecosystem, like depressing the immune system, or taking antibiotics that kill off only the bacteria, allowing the fungi to start to overgrow, and the balance is gone. Given my history of immune suppression and multiple antibiotics, a fungal overgrowth isn’t much of a surprise. The problem is that I have been on a potent anti-fungal drug (voriconazole) for 6 months or so, which should have done the trick.
Compounding that is that the GVH docs would like to start me on low-dose daily prednisone to deal with the chronic GVH. Steroids are probably the last thing you’d like to give to a patient with a fungal infection. So how do you deal with two significant problems with two opposite solutions? The team is putting their collective heads together tomorrow. The answer, like many of the answers during my course, will not be based on any medical evidence from scientific studies (no one has taken 1000 patients and tried one regimen on one half and the alternate regimen on the other half), it just relies on experience, convention, bias, and guess work.
But creativity can provide some new avenues. I’ve been dealing with oral thrush (yeast infection in the mouth) for several weeks. We’ve tried to old standby (perhaps 50 years old) of swish and spit oral Nystatin (mycostatin) solution, a mild antifungal medicine. It usually works with mild yeast overgrowth, but mine has proven problematic. It would great if we could add another more powerful antifungal drug, like fluconazole, to the mix, but these antifungal drugs are toxic to the liver, and taking fluconazole and voriconazole together is a recipe for disaster.
So I asked if fluconazole came in an oral solution (often used for pediatric or geriatric patients). We looked it up, and it does. I said why not use it as a swish and split. No one had thought of that before (and I imagine it’s not approved for such use). Lisa later asked me why no one had ever come up with that idea, and I said, “Because I’m smarter than the average bear.” The prescription for an oral solution was given to our local pharmacy, and although the pharmacist said it was approved by our insurance, he was hesitant to fill it, because the dose, which he thought was for ingestion, was way up in uncharted territory, and it would have been if I had actually swallowed it 4 times a day. He called Hopkins, they explained what the deal was, and he was relieved. Good for him –an alert pharmacist.
Comments: I can’t leave today’s visit without talking about my nurse practitioner who coordinates my care, and who saw us today. She (and you might have noticed that I have never identified any of my caregivers by name) is and has always been empathetic and caring. Throughout our chats, she’ll put a comforting hand on my knee, a quiet touch on my arm, and always a real hug at the end. She lets me know that she’s focused on me, knows what I’m going through, and wants to help get me better.
She exemplifies what I used to teach physicians about communicating with patients. When the patient comes in and announces the reason for the visit (what doctors call the chief complaint) the first response should not be, “When did it start?” or “How long does it last” but with, “That must be awful!” followed by, “Let’s see how we can deal with that.” Now the patient knows the doctor cares about him or her (and not the intellectual exercise of determining a diagnosis) and that they’ll be working together to fix the problem.
Special comment: March 14 or 3-14, is celebrated in schools as π day (3.14). Now, pi itself (most famously the ratio of the circumference of a circle to its diameter) goes on as 3.1415926535897 … to infinity. It comes up in mathematics not just in circles, and spheres, and cylinders, but in physics, biology, and almost every other field of study. If you throw a toothpick on lined notebook paper, the probability that it will land on a line is 2/π. And somehow it has integrated itself into our numbering system, for example, pi = 4/1 – 4/3 + 4/5 – 4/7 + 4/9 – 4/11 + … Mathematicians still have no idea why it should work like that.
In college, just for fun, I memorized pi to 250 decimal places (betcha, you did more fun things in your 4 years). But at our last class reunion, I still could remember it to a little more than 150 places, and my fraternity brothers pledged to donate a dollar a digit to the scholarship fund. We raised $6,000, not bad for a slowly deteriorating memory
Back at Hopkins tomorrow for a quick visit with the ophthalmologist about my dry eyes.