When Your Doctor Doesn't Listen
Here's what happens when a patient and doctor relationship does not go well.
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 , 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 inservice 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.Last edit by Joe V on Oct 20, '17
About Nurse Beth, MSN, RN
Nurse Beth blogs at http://nursecode.com
Joined: Mar '07; Posts: 1,319; Likes: 3,956Nov 29, '16Been going through a different version of this for around ten years now. Doctor A becomes Doctor B and then Doctor C. Of several doctors, these stopped taking my insurance, others never took my insurance although I was told otherwise, those sent me here, this one sent me there, and I just plain gave up to lament that the health insurance gets paid but the medical care doesn't happen at all, or doesn't happen very well. At least you got some interactive back and forth from a youngster that was trying to impress you with her medical book knowledge. I really dread when the medicare monthly bill will start and I still won't be getting medical care. I would rather pay towards my final expenses to help out my family at the time when I won't require any medical care.Nov 29, '16So sorry to hear of your prolonged "cold".... and struggles with the textbook doc.
I hope you got what you needed today. Sounds like that doc could use some career advice from Nurse Beth.Nov 29, '16Maybe you could see an ENT?
Maybe you could speak openly with this young newbie, as you have here? Just being totally frank with her? Explain that you have lavaged and navaged and taken the Rx she gave you, but why not point out that the dose was too low? She is a beginner, you DO know your own body. And where is your regular doctor? Or an NP friend?
Any doctors from whom you could wrangle some good old hallway Medicine?
Or order something online. Or get accupuncture to start the draining. Got a dentist buddy?
Please let your Senators and Reps know, Fed and state, what you have been going through. Not to mention the scholars who say we should not give antibiotics for sinusitis.
Do you have green drainage? Drop it by Dr. Textbook's office.
Go to the ER or Walk-In clinic.
I am surprised you are having this problem, Beth. I truly wish you the best. Sudafed, cool steam, hot steam, Vicks Vaporub (name brand works best for me). Chicken soup. Herbal medicine, other non-Western allopathy.Nov 30, '16I can so relate and want to express my support !
Pretty much the same thing happened to me several times. I had problems with asthma many years as an adult and had two rounds of allergy shots. The allergies did get better but whenever I get a bad cold, it triggers asthma problems and that triggers more problems. If it is a sinusitis that is bacterial, I need to get it treated with antibiotics, otherwise it will not resolve enough and the asthma problems persist. Common sense dictates that if you have been dealing with the same issue successfully during your life, have preserved your ability to work and recover and know that this is what works - you would think that common sense dictates to actually consider that approach seriously.
Only, common sense is not "evidenced based" and the text book doctors who worship the holy grail of "evidence based medicine" without correlating symptoms or facts otherwise tend to be "the worst".
One time, I alerted the provider I had to see that I had been sick with a cold for several weeks and now keep on feeling some shortness of breath and still had symptoms of infection - she gave me the pep talk and told me to use saline rinse and "fresh air". I was ??? and tried to convey that I have gone through this before and usually need an antibiotic and a steroid inhaler for some weeks to avoid worsening. Well - I left with a handwritten note that indicated "saline rinse". A week later I was wheezing audibly so bad with shortness of breath that I had to go back but asked for a different provider to see me. I had to take oral steroids in addition to the antibiotics and was mad like nothing else.
Other time - different office - same scenario. Young provider who lectured me on the importance of avoiding antibiotics and so on and forth. Got sicker within some days and felt like crap. This time I called a friend to prescribe me antibiotics - I was well within few days and did not need oral steroids.
I had other experiences that are similar for other issues - when I chose a provider, I now ask up front specific questions. When I needed to see an orthopedics I told the person putting out the referral that I will not accept a physician above a certain age and that I actually prefer one that is young - so perhaps around 40-45. The medical assistants often know their providers sort of well and try to match it.
Sorry that you are struggling with your experience - hope you get better soon!!Nov 30, '16Thanks nutella Appreciate the support from someone who's been there Here's an idea: maybe medical students should have to read this thread or similar patient stories to help them in their early practiceNov 30, '16Quote from Kooky Korkythanks!---------> longtime chicken soup and Vicks fan. I remember my mother rubbing Vicks on my chest when I was little.Maybe you could see an ENT?
I truly wish you the best. Sudafed, cool steam, hot steam, Vicks Vaporub (name brand works best for me). Chicken soup. Herbal medicine, other non-Western allopathy.Nov 30, '16Quote from caliotter3I 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.Been going through a different version of this for around ten years now. Doctor A becomes Doctor B and then Doctor C. Of several doctors, these stopped taking my insurance, others never took my insurance although I was told otherwise, those sent me here, this one sent me there, and I just plain gave up to lament that the health insurance gets paid but the medical care doesn't happen at all, or doesn't happen very well. At least you got some interactive back and forth from a youngster that was trying to impress you with her medical book knowledge. I really dread when the medicare monthly bill will start and I still won't be getting medical care. I would rather pay towards my final expenses to help out my family at the time when I won't require any medical care.Nov 30, '16Ugh. Back when I had group insurance, I also had a sinus infection which kept being mislabeled as allergies. I use to love the Walgreen's/Costco/Kroger/CVS mini-clinics before that incident. I still think that these walk-in services are a huge benefit to the public, but personally, I now hate taking scripts from (or discussing my health with) people that don't know me. Getting ahold of my PCP (well, her nurse) at that time was a joke, too. 2+ days of turnaround time was/is not sufficient.
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).Last edit by Username invalid on Nov 30, '16 : Reason: syntax errorsNov 30, '16Quote from Username invalidUgh. Back when I had group insurance, I also had a sinus infection which kept being mislabeled as allergies. I use to love the Walgreen's/Costco/Kroger/CVS mini-clinics before that incident. I still think that these walk-in services are a huge benefit to the public, but personally, I now hate taking scripts from (or discussing my health with) people that don't know me. Getting ahold of my PCP (well, her nurse) at that time was a joke, too. 2+ days of turnaround time was/is not sufficient.
Enter my other doctor that has a concierge service. I pay a $50/mo membership fee. 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 PHP, but added my new doc a few years back. They share info as needed. Getting his new service felt a bit frou-frou, at first, but it's actually cheaper for me now that I have an individual (Obama Care) insurance plan. In the future (if the rates remain reasonable) I will always keep a concierge doctor, regardless of my insurance coverage.
This really makes sense for those of us who have major medical individual insurance plans... argh. The $50/mo membership fee is way cheaper for me than going with the "Gold" O- .
Do you pay a fee when using the service or is the $50/month it? Is this one of the national groups or any individual physician?Nov 30, '16Paying for Medicare! Yes. My mom has Tricare, and is still required to carry Medicare B, which I pay for to the tune of over 400 for three months. I also struggle with the Dr/patient relationships for her appointments.
If we see her regular NP, it is not a problem: we communicate great. IF she sees one of the multiple "specialists" that she needs to be referred to, the ball is in the air. The last appointment was due to concerns regarding her oxygen, memory loss at altitude due to lack of oxygen, and so on. We were told (because she is on Lasix) that her breathing issues were due to CHF, and I need to cut back on salt while cooking, she needs to cut back on her pain medication, and she needs to exercise more (can only walk short, and I mean short! distances without becoming dyspneic).
If I tell them I am a LPN and retired Paramedic, I get dismissed. If I don't say anything, I get treated like I'm stupid. What's a caregiver to do? Except become more assertive, and develop their own plan of care with the blessing of the NP who is able to think outside of the box.Nov 30, '16Quote from blondy2061hIndividual physician - unfortunately. I wish his set up was national. I private messaged you his list of services (if you even want it, I don't know.) This information won't lead you directly to a doctor like this for yourself but it could give you a feel about self-pay doctors if you've never visited one.Do you pay a fee when using the service or is the $50/month it? Is this one of the national groups or any individual physician?
I hope more people consider doctors like this who have gone self-pay. I think giving them business is one small step towards changing the system.
On a side note: I would never, ever go to an alternative medicine doctor, as I want real medicine. Those people need to get lost. Also worth mentioning: he says his patients don't really text him all that much, interestingly.Last edit by Username invalid on Nov 30, '16 : Reason: forgot to put in quoteNov 30, '16I 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.
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