Doctor frustration

I wonder just how many people on this incredible forum are as frustrated with their medical care as I am? In November I was doing well, and all of my doctors were fine with the idea of me coming in after a year if all went well and there were no complications. Then came the complication of getting a shock for a serious A-fib that could have taken me out if I didn't have a defibrillator. That caused a rash of new appointments and another echo of which didn't result in any new news. On Wednesday I was instructed to see my cardiologist again, a 4 minute appointment that should have been handled over the phone since my doctor admitted he had Covid the previous week and was wearing a mask and still coughing. Great. Is it just me? Or should he have NOT come in to work that day? That week? So I'm stuck in a tiny room with his Covid symptoms. I sure hope I don't get THAT!

My frustrations came when he mentioned raising my dosage of Carvedilol from 12.5mg twice daily to 24mg twice daily... let's just double it AGAIN after he just doubled it 2 weeks ago. Why is this even acceptable? It takes the body a while to get used to more of a certain medication, some people react very badly to doubling the dosage, but when I mentioned it with him, he said, "Where are you hearing this from?" I told him I researched Carvedilol and apparently there are quite a few people who do well at 12.5mg twice daily, but when they are instructed to double that dosage, they end up getting side effects they didn't have before. Hmmm.... Not that I'm assuming this is normal with that drug, but there is actual research on it, so I'm thinking there is at least some cause for concern. He gave me a look that said, "You're being paranoid." Then went on to say that a few people on a website doesn't matter.... You can imagine how I felt about that comment. If the people taking it don't matter, than what does???

To make matters worse, he automatically assumed that since I was questioning his advice about doubling my meds, that I naturally needed an anxiety medication! So now I'm just suffering from anxiety. Why are we always treated like this? 

The good news is, he said I didn't have to see him again for a year. I think he really doesn't want to deal with a patient that actually reads and researches. So far, this has been my experience with doctors other than my primary care provider who is a woman and always listens to me like she cares. She puts down her laptop and sits next to me and comforts me. So I guess one doctor out of the 3 I have currently is pretty good odds. My echo technician is also a woman, also very attentive and never patronizes me. Maybe I need a female cardiologist? Or maybe it just doesn't matter. I think the one I have now is convinced I won't live another year anyway. LOL! 

Thanks for letting me vent. I really appreciate it. I know most of you have had these kinds of experiences, so if you want to vent here, I would completely support you. 

Janene


2 Comments

Doctor-patient relationships

by Gemita - 2024-01-13 04:04:06

Janene, Just a question first, I believe you stated earlier that your shock was for Ventricular Fibrillation, not Atrial Fibrillation?  

Why do some cardiologists and cardiac nurses appear to insist that a heart failure patient take an increasing number of meds, even when some of the meds prove difficult to tolerate or reduce quality of life?  This has been my sister’s experience too in the last few years dealing with her heart failure team and I have to say she has been deeply affected by their uncaring, somewhat commanding attitude.  Fortunately she has managed to improve her ejection fraction from 16% to 43% without all the meds they initially recommended, so she is living proof that more medication isn’t always necessary for every patient and might even be harmful. She was never offered an ICD by the way which rather surprised her family with an initial EF as low as yours.

A patient surely has the right to decide what is best for them and should not feel pressurised by healthcare professionals, however well meaning, to take “every” prescription that is recommended?  Polypharmacy is becoming a real problem today, especially with the elderly and needs to be controlled too(!)

I think both of us and other members have come across some uncaring teams during our pacemaker journey Janene.  My own experience with my first cardiologist was most unpleasant and I reported him and asked for a referral to another cardiologist in the same hospital because of a breakdown in trust and respect.  I recall the following cruel comments he made when I tried to describe the difficult symptoms I was having with my intermittent arrhythmias.  His words were:  “This is all in your head.  I want to see something more exciting in your data other than a short run of an atrial tachy arrhythmia before I am prepared to believe that you have an arrhythmia like Atrial Fibrillation (AF)”.   My husband was with me and felt equally shocked by these insensitive remarks.  I returned home in tears.

Although I had been receiving 24 hour monitoring from time to time, this was clearly not enough and failed to pick up my intermittent AF arrhythmias with a rapid ventricular response rate.  It was only when I was blue lighted to hospital after multiple transient ischaemic like attacks/syncope, did they finally confirm, “Oh you must start anticoagulation immediately because you have AF and you need to go on other meds too, to control your heart rate”.  

I was exhausted after years of searching for answers.  At last I had a proper diagnosis for my difficult symptoms and I could start to receive appropriate treatment, but I was suddenly petrified to be facing lifelong anticoagulation and heart meds, without any real support.  Over the years since diagnosis, I have generally found it difficult to find a doctor with real empathy in treating the less significant arrhythmias that can cause such distress to their patients.  Some of us suffer severe symptoms with our rhythm disturbances, and do not tolerate them at all well.  I feel more could be done to help us to manage our symptoms better, like having regular support group sessions in the clinics we attend.  Fortunately my clinic did offer further support.  The emotional side of coping with a heart condition needs to be better understood and addressed too

Frustration

by piglet22 - 2024-01-13 05:07:11

I can fully appreciate your frustrations and over the years I've had some awful medics, some verging on the sadistic.

Pressures on healthcare systems are starting to come through regardless of how it's funded.

Inevitably, the days of long personal chats are over unless you have deep pockets.

I daresay that having long lists of patients every day can get to people.

Some of us are just as frustrated and I suspect that the number is going to increase 

As far as increasingly medication goes, it's quite normal to increment doses quite quickly. Start cautiously with a low dose then if all goes well, continue to increase to the optimum dose.

Over a period of a few weeks, I had Bisoprolol increased from 1.25 mg daily, to 2.5, then 5 then 10.

The poor pharmacist had to put up with the changes.

I think that we are going to have to do more to monitor our own health in future and get used to keeping good records and equip ourselves with the kit to do it.

My regular routine is daily BP, sats, temperature and monthly blood glucose.

The latter kept me off a type 2 diabetes diagnosis and the others have been invaluable in discovering and monitoring ectopics.

You know you're wired when...

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