Friday, December 28, 2007

Trying to Make Me Normal is Going to Kill Me

In the two weeks since I last saw Dr. G, I’ve come to a frightening conclusion: his determination to treat me as though I’m one of his normal patients is going to be the death of me.

Since my first visit with Dr. G, it’s become increasingly clear that he’s a pretty conservative practitioner who believes that the less we mess with the body, the better. He’s given me reason to believe that he feels drugs cause more problems than they fix, and should therefore only be used as a last resort. This, of course, means that the copious variety of drugs I take every day drives him crazy -- as evidenced when a review my current medications caused him to blurt out, “I have no idea why you’re alive.“

These are not encouraging words to hear from the person you’ve charged with your health and well-being.

In addition to his desire to solve problems without the use of prescription medications, Dr. G also exhibits little patience for the unconventional. I discovered this when we first discussed the cellulitis that had popped up on my right thumb -- he couldn’t keep from rolling his eyes and letting out a derisive little snort when I told him how we’d taken care of other outbreaks I’d had in the past year.

Initially, I was fine with giving his approach a try. I’m usually all for conservative when it comes to my health -- with as many odd conditions as I have to deal with and the number of drugs I rely upon, trial and a lot of error taught me that introducing new factors into the equation can throw my body into a state of total chaos. Besides, I desperately wanted to be back in the care of a doctor in whom I could trust, who understood that I knew my body better than anyone else and treated me as an equal partner.

That’s why I agreed to give his recommendations a try. First, he told me to keep the cellulitis protected by a clean dressing, and to stop treating it with anything, including Neosporin or the acetic acid solution we’d used with great success in the past. Second, he wanted to try to put an end to my severe problems with retaining water by drastically reducing my fluid intake and cutting out the diuretics. And finally, he prescribed a ten day course of Cipro, a broad spectrum antibiotic, in the hopes of it knocking out both my urinary tract infection and the gunk that had invaded my lungs with one shot.

Even though these all sound reasonable in theory, they have all proved to be disastrous in practice.

I stuck with Dr. G’s directive to leave the cellulitis alone, doing nothing more than changing the dressing so it stayed clean and dry. Two days later the infection had grown much, much worse -- the original blister area had blistered again, and the entire region was deep red and angry looking. I knew from past experience that I stood a good chance of ending up on IV antibiotics, so I started to treat the area with the acetic acid solution. There was noticeable improvement in less than a day, and it was almost completely healed in less than a week. Unconventional -1, Dr. G -0.

Next, reducing fluid intake. This was a hard one for me -- I’ve trained myself to drink massive quantities of water each day in the hopes of flushing bacteria out of my urinary tract before they can take hold. (Ever since having a dangerous brush with low potassium due to water toxicity, I am extremely careful to make sure I’m eating bananas and other potassium rich foods to keep that from happening again.) This high volume intake seemed to be working pretty well -- I hadn’t had an infection in seven months, a record for me. But per Dr. G’s request, I cut way back right after I finished taking the Cipro for my last UTI -- I went from drinking a dozen 16 oz bottles of water each day plus some cranberry juice down to drinking only four bottles.

What a mistake. I developed a new infection in less than a week. And now that I‘ve started to increase my intake again, I’m having horrible problems with retaining water -- my legs, ankles and feet are horribly swollen, and there’s enough abdominal bloating to restrict my breathing. So I’ve been forced to do another Dr. G no-no: take Lasix to get rid of the retained water. It’s astounding -- within four hours of taking the diuretic I’ve been putting out almost four liters of urine. You *know* that feels damn good. Unconventional - 2, Dr. G - 0.

And then there’s the infections. If I were just trying to knock out a UTI, a 10 day course of Cipro would have worked fine. But I have pockets in my lungs from bronchiectasis, and it’s all too common for bacteria and other gunk to lodge itself down in these pockets and hang on. My former pulmonologist not only prescribed at least three weeks worth of antibiotics for me when I developed infections, he also gave me a prescription to keep on hand so I could start taking the meds as soon as I saw the telltale signs of a lung infection.

Taking 10 days worth of antibiotics just seems to make things worse, which is what’s going on right now. I wasn’t coughing at all or bringing up any junk before taking the Cipro, but started doing so about five days into the antibiotics. It’s gotten progressively worse. I understand that the over prescribing of antibiotics is problematic. But this doesn’t seem to be over prescribing, it seems to me to be under prescribing -- taking too little of the medication to kill off the bacteria which instead ends up helping the little buggers become resistant to the antibiotics. And that’s bad for me now -- having a death rattle in my lungs that’s adding to the breathing problems from my MS hug and the bloating is just plain miserable -- and it will certainly be bad later if these bacteria become immune to oral antibiotics.

Unconventional - 3, Dr. G - 0. Game, set, match.

Now comes the hard part - confronting Dr. G with the reality that everything he knows doesn’t apply to me and may, in fact, be dangerous. I dread it. I have no idea how I will find the confidence to stand my ground, or what I will do if Dr. G doesn’t agree to let me continue with what I know works. I can’t see sticking with him if all I’m going to end up doing is ignoring his advice and getting worse because of incomplete treatments. But this is a small island -- and the medical community is small. I’ve already been told by three doctors on island that they won’t treat me, and I’m not sure if I’ll be able to find someone else. Nor am I sure I could tolerate being rejected again -- it sounds stupid, but it really hurts to be told that you are too abnormal to be someone’s patient.

It’s a real paradox, isn’t it? I’m too abnormal for some doctors to treat me, and the ones that will try to treat me like I’m normal!

My next appointment with Dr. G is in two weeks, but I’ll be hearing from him before then when the results of the urine culture I submitted today come back. Please pray for me to have the strength to stand up for what I need, and to stand my ground until I get it. Hopefully he’ll understand that my 44 years in this body makes me much more of an expert on what it needs to function well than his 44 days of being my doctor.



Having little faith that the lab would actually send my results to Dr. G (the orders were written by my former physician), on Sunday I decided to send Dr. G a fax to let him know the culture was in process and to expect the results.

As I wrote this fax, I realized it provided me with an excellent opportunity to broach the subject of an extended dose of antibiotics that would take care of my lungs and the latest UTI. So I made my appeal, borrowing liberally from Joderson's well-crafted language about the role of doctors, and sent it off. Some may think of this as the chicken's approach -- I let the fax do the work so I could avoid dealing with this in person. I, however, prefer to think of it as my way of stepping oof the cliff -- now that this was out there, I'd have to talk with him about it.

Dr. G called me early Monday afternoon. He told me he had read my rather lengthy note -- and thanked me for it -- then asked me what pharmacy I used so he could phone in a 21 day course of Cipro. He told me that he didn't even have the culture results in hand yet, but it was important to him to get my lungs (and me) feeling better -- he would deal with the culture later if the results showed the infection wouldn't respond to Cipro.

Throughout the call, Dr. G was warm and funny, and made it clear that despite my maverick ways, he was in this relationship -- as my partner -- for the long haul.

I couldn't stop grinning for hours.


Jonderson said...

“I have no idea why you’re alive.“

Bad. Bad doctor. Had he said "how" instead of "why", I would find that acceptable. Honestly, I have marvelled at this particular question myself. But "why" is not a question that is appropriate for a doctor to even ask. I will be generous and assume that perhaps he meant "how", and simply misspoke...after all, I don't know the man.

Your dilemma has only one solution. You have to tell him exactly what you have written here. Namely that you realize that you present an unusual case, but that this is precisely why it is imperative that you work together, as equal partners, to come up with the most effective treatments: His years of medical education and knowledge, coupled with your years of experience treating this specific combination of conditions in this particular patient. An equal partnership is the only way to provide adequate, effective, and safe care in such a difficult case.

And you are a difficult case, Penny. You always have been, and you always will be, medical issues or not. ;) It is one of the many reasons we all think so much of you.

Now there may certainly be some cultural differences to deal with here, but I bet that the following approach will work just fine regardless. You absolutely have to be up front and let the doc know that you are in his office to be given treatment options and recommendations, but that the decision regarding which options you choose will always ultimately remain with you. It is kind of a dirty ethicist trick, using the med school definition of the role of a physician like that, but you will not get many refusals out of it as long as you put it in those terms. The ones you get will either be from unethical docs or from ones who seriously believe that they are not capable of providing you with what you need. Either way, you come out ahead. You will undoubtedly still exasperate them now and then, but when that happens you simply acknowledge that you know you are an exasperating case, remind them of this relationship, and let them know you are relying on their expertise even when you don't follow their recommendations. (Like cats, most doctors have huge egos and respond to well-timed pettings.)

Jonderson said...

Sweeeeet! Glad to hear that it went well!