When Your Doctor Doesn't Listen

[Nurse Beth]

Day 24 of an acute sinus infection.

Today the pressure/pain has traveled down from my forehead to my upper back teeth. Last night a strangly cough kept Bob and I up. I finally got out of bed at 3 am so Bob can sleep and am now on the living room couch.

I can't sleep at night, am fatigued during the day. Over the last 3 weeks, I've used up all my sick time. I keep going to work only to go home early. At work, I feel like a contagious leper and keep telling people (who don't want to know) my entire "cold story" and how I'm really not contagious.

On Day 1, I came down with a severe cold. I haven't had a cold for 3 years! I pride myself on meticulous handwashing, and not touching my face, esp at work.

But then Bob came home with this awful bug. And right before Thanksgiving! Totally not rational, but I'm still blaming him.

With a history of developing hard-to-treat secondary sinus infections, I was dismayed.

Sure enough, on Day 5 of the cold, I felt better, only to get re-sick on:

Day 6. Chills, sweats, brain fog, copious mucus production, cough, cough, cough.

I called my wonderful PMD who through trial and error had long ago started prescribing Bactrim for my Amoxicillin-resistant sinus infections. He was on vacation.

I could, however, see Dr. Z that afternoon.

Great! *cough* I could be well by the time we have 15 **cough, cough**house guests for Thanksgiving **sniffle**

The waiting room was empty while I waited 25 minutes before being called back. Not too bad. I explained my symptoms to the young doctor who stared at her computer the whole time, ending with "I have a sinus infection. Please don't prescribe Amoxicillin. It doesn't work for me. Bactrim works"

She looked up at me balefully from her computer, taking in my nursing scrubs, as I had come from work. "Bactrim is not indicated for upper respiratory conditions" she informed me. I could almost see the textbook pages turning in her mind.

"Yes, but....I've had a lot of sinus problems...it works for me " I trailed off, lamely.

Silence. She tapped at her computer.

(Uh-oh- had I crossed a line? Was I the dreaded "nurse-patient" and person who claims "I know my own body?")

"I will give you a Z-pack. Come back in 5-7 days if you're not better"

Once home I dutifully took the Z-pack... I felt about 50% better but two days after finishing the antibiotic, I became re-sick. Oh, no!! Not again.

Once again I called and was told that only Dr. Z had an opening that day, the afternoon before Thanksgiving. I greeted her with a smile "Well, you said to come back if I wasn't better. I'm sick"

I described my symptoms, and my observation "I think the azithromycin suppressed the infection, but didn't get rid of it." Smile. *cough*cough

"That's not possible. You felt better, right?" I nodded. "So the bacteria was susceptible. It's either susceptible or it's resistant. It either worked or it didn't" she patiently informed me.

I was speechless "But...but I'm sick!" Lame protest, but I couldn't even find any words.

"You are having allergic symptoms. You have allergies"

"No. I don't have allergies" (Did I fall down the rabbit hole?)

"This is a natural response after a cold. It's residual cells and debris you are coughing up. I do not recommend an antibiotic. If you want an antibiotic, I will give you one. But then you are at risk for other more serious infections, like C diff"

(wait...I'm an antibiotic-seeker and she threatened me with Cdiff??)

Properly chastened and afraid she'd change her mind and withdraw the promised antibiotic, I remained silent.

"I'm also giving you Flonase. Oh, and drink some tea with lemon"

Right. I went home to bed, passing my kitchen counter which was filled with cough drops, Zicam (pricey and questionably efficacious, Nyquil, Mucomyst (does work well), and more.

It was the night before Thanksgiving, and my daughter and her family of 5 drove in as I was taking my first Amoxicillin. Yes, that's what she prescribed. Amoxicillin.

Today is Day..did I say 24? I'm not sure. Week 3 at any rate. I have taken 5 days of Amoxicillin and am still sick. I called and have an appointment today with another provider. Wish me luck.

What went wrong? This doctor did not listen to me. I have long said that that doctors and nurses both need to listen to their patients. Not listening to another conveys disrespect.

The best doctors (like my usual doctor) partner with their patients and agree on treatment. There is evidence-based practice, and there is practice-based evidence. Both are important.

I do think I will finally get the right antibiotic today and soon be well. I'll keep you posted! I also plan to circle back with this new, young doctor who does everything by the book.....and nicely tell her my story. So this doesn't happen to her future patients. Who may not all be textbook patients.

Now I have to get ready for work and a 3-hour nursing assistant in-service I'm due to present in a couple of hours. I may include the topic of listening and respect.

Cheerful update: Saw an experienced PA yesterday who: gave me a Rocephin IM injection (ouch!); Kenalog (steroid) injection; Bactrim Rx. Shook my hand and said "Beth, I think this is going to work well for you". Am sending his office See's candy and a thank you. ?

[mmc51264, BSN, MSN, RN]

I get recurring sinus infections and a Z-pack does the trick for me. I have had to have discussions about other antibiotics. I have a PCN allergy but I can take first gen cephalasporins and that is it. they keep trying third gen and I don't tolerate them.

My new PCP last told me that it was viral and wouldn't give me an antibiotic. UGH. I guess he was right because it did go away. But it is frustrating when they don't listen.

Same PCP did not want me on tramadol for chronic pain (been on same dose for 6+ years). wanted me to try Cymbalta or Welbutrin. I told him I have a paradoxical effect with any SSRN, SNRI and others. He didn't believe me. Ended up at our system's pain clinic (for freaking tramadol LOL). They listened and I have a great management plan for me.

[Kooky Korky, BSN, RN]

I was surprised when a retired friend told me what she has to pay for medicare- I think it was around $300/per month (not sure). It seems after you pay for insurance, you still may have to fight to get good medical care! Or get lost in the system, like you. Sorry for your situation, makes me wonder how many people are having the same experience.

You have to pay a premium of $100 or so per month for either A or B.

And when a doc does accept your Medicare, it means you will likely have to pay 20% of the bill. It's seriously way more complicated than that or than it should be. But it is a real safety net.

Mom used to put Vicks on her sinus areas and even in her throat. It's good on the chest, too. Helps to cut cough. Mom also gave us hot milk with butter and rock candy, hot tea with honey and lemon. God bless our beloved mamas (and all who love us and care for us).

[Kooky Korky, BSN, RN]

I get recurring sinus infections and a Z-pack does the trick for me. I have had to have discussions about other antibiotics. I have a PCN allergy but I can take first gen cephalasporins and that is it. they keep trying third gen and I don't tolerate them.

My new PCP last told me that it was viral and wouldn't give me an antibiotic. UGH. I guess he was right because it did go away. But it is frustrating when they don't listen.

Same PCP did not want me on tramadol for chronic pain (been on same dose for 6+ years). wanted me to try Cymbalta or Welbutrin. I told him I have a paradoxical effect with any SSRN, SNRI and others. He didn't believe me. Ended up at our system's pain clinic (for freaking tramadol LOL). They listened and I have a great management plan for me.

Does your PCP know you're back on Tramadol?

[Ashley Hay, BSN, RN, BSN, RN]

Love your comment: "The best doctors (like my usual doctor) partner with their patients and agree on treatment. There is evidence-based practice, and there is practice-based evidence. Both are important."

Couldn't have said it better & so true. Also, yes...See's candy will change your life. It's the best gift to give and get!

[Nurse Beth, MSN]

Love your comment: "The best doctors (like my usual doctor) partner with their patients and agree on treatment. There is evidence-based practice, and there is practice-based evidence. Both are important."

Couldn't have said it better & so true. Also, yes...See's candy will change your life. It's the best gift to give and get!

Haha!!....we usually buy several Christmas-wrapped See's candy boxes for gifts at Christmas. (I'd give you one if someone would invent wireless chocolate transfer) . I agree, See's says "You're special. Here's something to spoil you X0X0"

[Nurse Beth, MSN]

Enter my other (newish) doctor that is self-pay. Memberships (with concierge service bundled in by default) go for $50/mo. Paying this fee saves me money. I'm in school full time, now, and have an individual Obama Care plan that costs over $300/mo. The membership fee I pay my doctor's office is cheaper than going with the Gold plans available to me.

Now, when I'm sick I can text my doc directly, go over my symptoms, discuss options with him, and have my script sent to the pharmacy within a couple of hours (I also get physicals, ear cleanings, low to moderate complexity office visits, and some other trinkets.) Heck, I can even send him photos if he needs to see stuff. Way cool.

I kept my old PCP, but added this new doc a few years back. They share info as needed. I will always keep a concierge doctor, regardless of my insurance coverage (so long as the rates remain so reasonable).

Wow. What a relief to know if you get sick, you'll get the right treatment and no worries. I hope this business model grows, it sounds good for docs and patients. They'd probably have to be in private practice to do this...?

[traumaRUs, MSN, APRN]

I'm in a large nephrology practice. We have encrypted text messaging and our pts use it all the time to send messages, pics, etc. to us.

[KatieMI, BSN, MSN, RN]

As a chronic patient myself and future provider, I have to tell something.

The current epidemics of all-the-drugs-ever-known-to-humankind-resistant bugs is caused directly by this very phrase: "it works for me". This phrase was said by BOTH patients and providers, innumerable number of times, and interpreted accordingly. First it was Bactrim that "works for all this-and-that". Then it were cephalosporins. Then it was vancomycin. And now we have some guys for whom nothing works. These people not always shut into high-isolation rooms. 2.5% people off streets and 5% direct-care health workers are infected with MRSA, often with the most amazing resistancy profiles. Luckily for everyone, due to bacteria's genome limitations, the carrier state for MRSA is usually as short as a few weeks but it might be quite enough to meet the wrong person at the wrong time.

Therefore, County Public Health services and microbiology departments in hospitals do their jobs to the point. Every month or so, all health care providers in every county receive some long email or letter with "preferred" (read: ordered to be that way) antibiotics for different pathogens spread in particular communities, plus they regularly go through John Hopkins guideline or similar source. Most of them will not cross these guidelines because they do not want to get a teen with a big angry pimple (caused by Community Acquired-MRSA) to breed a resistant bug to be spread all over the high school swimming and wrestling teams just because the teen's mom insisted on Cipro because "it worked for him", and then bring this bug into her own nose in an ICU where she is working a sa nurse, as well as to the teen's BFF who is just getting off mononucleosis. Meanwhile, the teen got his Achilles ruptured and now has to go for surgery - again, because his mom was insisting on Cipro. Things like that happen surprisingly often, and sometimes carry on a whole chain of "unfortunate events" ending up in big ugly lawsuits - big enough so all medical community gets to know about them, and takes the message VERY close to their hearts - or, rather, to their licenses.

If Bactrim is not listed as "indicated" for URI, there's usually a good evidence-based cause for it. You are welcome and free to try to find someone who will risk his or her license if caught into a chain of events like I described above. Better chances to do so with PAs, because they are always, unlike NPs in many cases, 100% dependent on MDs, therefore they are used to "satisfy that customer" and then promptly thrown under the bus if something happens.

BTW, Kenalog helps a lot for the inflammation, but it also can make the whole ordeal a bit longer due to immunosupression. Just letting you know.

The whole article remains me about my current daily battle with patients who came from "so kind and understanding" doctor from the former next door practice who "always listened" and "always was sooooo supportive". That doctor will walk out free somewhere close to my retirement time due to prescribing of "good stuff" by tankloads, which scripts directly led to several of his patients being found dead. Those who are still alive and transferred into other practices just cannot get why their sweet pain-and-nerve pills party is now over and why "everybody" is so "mean", "never listening" and "not understanding" toward them.

[Nurse Beth, MSN]

As a chronic patient myself and future provider, I have to tell something.

The current epidemics of all-the-drugs-ever-known-to-humankind-resistant bugs is caused directly by this very phrase: "it works for me". This phrase was said by BOTH patients and providers, innumerable number of times, and interpreted accordingly. First it was Bactrim that "works for all this-and-that". Then it were cephalosporins. Then it was vancomycin. And now we have some guys for whom nothing works. These people not always shut into high-isolation rooms. 2.5% people off streets and 5% direct-care health workers are infected with MRSA, often with the most amazing resistancy profiles. Luckily for everyone, due to bacteria's genome limitations, the carrier state for MRSA is usually as short as a few weeks but it might be quite enough to meet the wrong person at the wrong time.

Therefore, County Public Health services and microbiology departments in hospitals do their jobs to the point. Every month or so, all health care providers in every county receive some long email or letter with "preferred" (read: ordered to be that way) antibiotics for different pathogens spread in particular communities, plus they regularly go through John Hopkins guideline or similar source. Most of them will not cross these guidelines because they do not want to get a teen with a big angry pimple (caused by Community Acquired-MRSA) to breed a resistant bug to be spread all over the high school swimming and wrestling teams just because the teen's mom insisted on Cipro because "it worked for him", and then bring this bug into her own nose in an ICU where she is working a sa nurse, as well as to the teen's BFF who is just getting off mononucleosis. Meanwhile, the teen got his Achilles ruptured and now has to go for surgery - again, because his mom was insisting on Cipro. Things like that happen surprisingly often, and sometimes carry on a whole chain of "unfortunate events" ending up in big ugly lawsuits - big enough so all medical community gets to know about them, and takes the message VERY close to their hearts - or, rather, to their licenses.

If Bactrim is not listed as "indicated" for URI, there's usually a good evidence-based cause for it. You are welcome and free to try to find someone who will risk his or her license if caught into a chain of events like I described above. Better chances to do so with PAs, because they are always, unlike NPs in many cases, 100% dependent on MDs, therefore they are used to "satisfy that customer" and then promptly thrown under the bus if something happens.

BTW, Kenalog helps a lot for the inflammation, but it also can make the whole ordeal a bit longer due to immunosupression. Just letting you know.

The whole article remains me about my current daily battle with patients who came from "so kind and understanding" doctor from the former next door practice who "always listened" and "always was sooooo supportive". That doctor will walk out free somewhere close to my retirement time due to prescribing of "good stuff" by tankloads, which scripts directly led to several of his patients being found dead. Those who are still alive and transferred into other practices just cannot get why their sweet pain-and-nerve pills party is now over and why "everybody" is so "mean", "never listening" and "not understanding" toward them.

I do understand the importance of antibiotic stewardship. The guidelines call for Amoxicillin for acute sinusitis. What antibiotic do you then recommend for Amoxicillin- resistant acute sinusitis with a duration of 3 weeks?

[KatieMI, BSN, MSN, RN]

I do understand the importance of antibiotic stewardship. The guidelines call for Amoxicillin for acute sinusitis. What antibiotic do you then recommend for Amoxicillin- resistant acute sinusitis with a duration of 3 weeks?

First line: levofloxacin, moxifloxacin, amoxicilline/clavulanate (the last one takes care about b-lactamaze producers, which are the most common reason of b-lactams failure): coverage over 90% overall

Adults with moderate disease which failed at least one course of antibiotics in the previous 6 weeks should be given either fluoroquinolone with Pseudomonas coverage, b-lactam with b-lactamaze inhibitor or doxicycline, all that for full course of 10 days

Z-pack (zithromax) covers about 80%; the main problem with it, though, is that it is only 6 days course, which is frequently just not enough.

Acute Sinusitis Medication: Penicillins, Cephalosporins, Macrolides, Fluoroquinolones, Anti-Infectives, Carbapenems, Aminoglycosides, Tetracyclines, Decongestants, Nasal Sprays, Expectorants, Corticosteroids, Anticholinergics

[Kooky Korky, BSN, RN]

First line: levofloxacin, moxifloxacin, amoxicilline/clavulanate (the last one takes care about b-lactamaze producers, which are the most common reason of b-lactams failure): coverage over 90% overall

Adults with moderate disease which failed at least one course of antibiotics in the previous 6 weeks should be given either fluoroquinolone with Pseudomonas coverage, b-lactam with b-lactamaze inhibitor or doxicycline, all that for full course of 10 days

Z-pack (zithromax) covers about 80%; the main problem with it, though, is that it is only 6 days course, which is frequently just not enough.

Acute Sinusitis Medication: Penicillins, Cephalosporins, Macrolides, Fluoroquinolones, Anti-Infectives, Carbapenems, Aminoglycosides, Tetracyclines, Decongestants, Nasal Sprays, Expectorants, Corticosteroids, Anticholinergics

And when it's just not enough what do you do?

[KatieMI, BSN, MSN, RN]

And when it's just not enough what do you do?

Then I think. If 90% chance failed, then it is the time to go look out for zebras. ASA allergy, polyps (most common), atypical GERD, bulimia/"retrograde sinus aspiration syndrome", foreign body, sarcoidosis, odonogenic maxillitis, tumors, exotic drug reactions. First round is mine (GOOD AND REAL old-fashioned head-to-toe clinical, head/ sinus CT and MRI, nasal culture/sensitivity) to see where the leads go, then referral to appropriate specialist.