Monday, March 30, 2009

A neverending story....maybe....

Part I: A Neverending Story

I really am not a doctor basher. Oh dangit...I don't want to be, anyhow. But I know I'm not the only one who seldom finds a doctor who sees the whole picture. Yes, it's "just" a sinus infection. But it's more than that to me. Here is the letter I wrote today about my experience, with names hidden to protect the not-so-innocent:

I am a patient of Dr. M. This is not about her. However, I did see her on June 13 for a sinus infection which included a very bad headache and sore, painful areas below and above my eyes which worsened when I chewed, plus pain all the way to the back of my head. She did concur and prescribed 5 days of levaquin. Since I had transsphenoidal endoscopic surgery to remove a pituitary adenoma several months ago, a sinus infection is doubly concerning. I have fought sinus infections for years, and use preventive measures. However, I feel I need to be seen by a professional when I can’t get rid of it or control it with no antibiotics.

The levaquin did work for me, but it took about 4 days before my sinuses loosened up enough for a little of the “crud” to start coming out. I went out of town for several days, and returned late yesterday (Friday). My sinuses have closed back up, are very painful, and my terrible headache is back. I thought it would be better to see someone today rather than wait until Monday to try to catch this before it got worse. I felt like, and still feel I did not have a long enough course of antibiotics. I am not trying to play doctor, but I do know how my body acts and am not stupid.

I saw Dr. X at the urgent care on ***** Avenue. I went there because it is also where Dr. M works during the week and thought it would be a continuance of care rather than starting all over. Dr. X said my right sinus was very congested and my left was fairly congested. However, since the levaquin didn't work, he said it had to be viral and I needed to use Flonase. I refused the Flonase and told him I knew I could not use it but could not remember why. He then wanted to put me on sudafed and steriods. I politely refused both telling him I could not take the sudafed due to blood pressure issues and I was already on steroids due to adrenal insufficiency from my pituitary surgery. I am trying to wean off of those, but adrenal insufficiency, especially when magnified by an infection, makes it tough. Well, he was very unfriendly/antagonistic, did not want to listen to my explanation, and told me I could just wait and see Dr. M. I was in tears. I told him the levaquin was starting to work, but I just needed a longer dose, I thought. He said I didn't need to "just be taking antibiotics to see if they might work". I was furious but courteous. I told him that I never "just took antibiotics" and took very few of them compared to most folks. He was not interested in any of my history. He walked out on me! He said, "You can get dressed and leave." I was never discourteous and I did not deserve that type of management.

As for the Flonase, GlaxoSmithCline, Inc. include the following in their studies:

Like any other nasally administered corticosteroid, acute overdosing is unlikely in view of the total amount of active ingredient present. However, when used chronically in excessive doses or in conjunction with other corticosteroid formulations, systemic corticosteroid effects such as hypercorticism and adrenal suppression may appear. If such changes occur, the dosage of
fluticasone propionate should be discontinued slowly, consistent with accepted procedures for discontinuation of chronic steroid therapy (see DOSAGE AND ADMINISTRATION).

(As a sidenote: All the studies of the effects of Flonase on the HPA-axis have been done with “normal” patients, not those with a compromised HPA-axis and/or Cushing’s Disease.)

I do not want to mess with my HPA-axis more than I have to. The repercussions are normous and obviously not understood by Dr. X. I am already dealing with a tenuous balancing act trying to replace all the hormones lost due to a pituitary adenoma that was not caught for over 20 years. (Thank you, Dr. M for saying “endocrine” to me when I first saw you.) Each of these affects the other, and adrenal insufficiency is just one price I pay if these aren’t balanced properly. I realize this is a lot to understand in one office visit, but he should have treated me with more dignity and understanding. And he could have listened.

GlaxoSmithCline also says that Flonase is contraindicated with viral infections (which Dr. X said I probably had), yet he wanted to put me on it. I am at a loss to explain this, but perhaps would understand if he had taken the time to explain.

To summarize, I am in pain, will have no treatment until Monday when I can reach Dr. M, and I feel Dr. X was out of line.

Part II: Persistence Pays

I used to invariably expect the best from people, and that included doctors. I used to wear rose-colored glasses. Now, I invariably hope the best but expect the worst. But every now and again I get fooled. Today was one of those days.

After writing that letter, I hung over a steaming pot, took ibuprofen and mucinex, and prayed to the steam gods to loosen my sinuses so I could sleep. The next morning, with the feeling of umpteen hangovers I was wondering when the party ever started. When my phone rang, I contemplated ignoring it, but did pick it up.

"This is [Lulu]. Dr.M wants to know if you can come in this afternoon. She's double-booking just so she can see you. She got your fax."

"What fax?" (Did I send that in my stupor??)

"The fax you sent about your visit to the doctor on Saturday."

"I didn't send a fax."

"Will you hang on a moment?"

As I was "hanging on" it dawned on me. Ah ha! SOMEONE had sent it. I suspected the recipient of the letter who works for customer service in the medical organization to which the urgent care belongs.

She returned. "Yes, well, Dr. M. is talking about you. She said she got the fax and it's about you. Can you come in this afternoon?"

"I'll be there."

I did go, wishing I had a chauffeur so I could close my eyes against the glaring sun. Oh, my pounding head. Dr. M was a dearheart. She apologized mightily for Dr. X's treatment of me and said, "Off the record, we've had a lot of complaints about him." She professed delight in my letter. I hope she wasn't trying to make me feel better. No, I think she really meant it. BTW, I got a big hug from Dr. M to go with it. She does hug....that's good medicine, too.

A shot of rocephin, two prescriptions for 14 days of levaquin and some percocet later, I was off to sell my soul to Walgreens. Since it took 45 minutes, I found a cup of Starbucks and a place to rob wireless internet while I waited. Oh my aching head. (Have I said that already?)

I'm hoping my letter does some good, but I'm doubtful. I was even second-guessing myself after writing it and asked my good friends if I was over-reacting. I asked my parents the same thing. They assured me I wasn't, but that's what chronic illness does. It beats us down to the point we are almost apologizing for being ill, and then when we do react...well, we second-guess our reactions.

I have dreams of educating our local medical profession about my type of illness, but then reality hits when I meet a Dr. X. How do I overcome that God complex? And where do I find the energy? How do I make them read the new research? And frankly, how much time do they really have for that? The Doctor Will See You for Exactly 7 Minutes....

My head is still pounding. I just took a percocet. I hope it helps. Wonder if I should send Dr. X one?

These were originally posted on June 21 and June 23, 2008, respectively. I wanted to include them in Grand Rounds which has a theme this week, so am posting them together again. Thank you for your understanding.

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