Simple Adjustment

Why does my doctor's office make it such a pain in the rump to make simple setting changes?  I tell them I'm uncomfortable or feeling a little off pacer wise, but the exchange ends up like brain surgery.  In my case, it was the response factor setting being too high and my heart working too hard for the level of activity.   Doc says "well the numbers don't support the move" but then reluctantly allows it.  Jeez man I'm the one wearing this thing and I can tell when it's over sensing  or pacing me too fast.  Numbers don't support it because I had to modify my behavior to compensate for it.  They are busy analyzing data and ignoring the patient.  Such a hassle for what ended up being ONE adjustment.  There has to be an easier way for these small tweaks to the settings.

Sorry for the rant.


9 Comments

Apologies accepted !!

by Gemita - 2020-10-09 09:09:10

Czechmate !

Your post made me laugh.  I know exactly what you mean.  I had to change cardiologist/EP to make any progress at all and then I had to struggle with my second opinion doctor to make him understand I was truly symptomatic before he was prepared to make a move.  We shouldn’t have to struggle like this.

I suppose doctors have to be sure that treatment is appropriate for the patient before they give it and I guess at the start of our pacemaker journey the pacemaker is set to address our particular diagnosis at the outset.  However, as we all know, our hearts change, our requirements change over time and our pacemakers need to be adjusted to keep up.  But yes, it is all about those numbers, those test results which often come back negative or inconclusive as many of us well know, so you are definitely not alone.

We are the fortunate ones though.  We are able to speak up and get those desired changes.  Some are less fortunate in dealing with their doctors and spend miserable lives trying to explain their symptoms without any resolve.

So what are we to do with our doctors?  Persuade them gently that the patient knows best??!!  How do we do it effectively without upsetting them??!!  Can we have some tips please?

It's a puzzle isn't it.

by crustyg - 2020-10-09 10:24:13

I am a *little* luckier, but I know exactly what you mean.  It sometimes seems as though EP-cardiology is staffed with folk who think it's still the 1950s, when Doctors ruled the hospital and patients were damn grateful to actually see the great men.

In most other disciplines of medical treatment (not surgery), the patient can choose to take the medication or not, reduce the dose etc.  In EP-land, once the device is implanted in you there's nothing that you can do to change the settings, except charm and logic.  And pleading...

Another contributor here made the very perceptive observation that the younger health care staff (techs and Drs) have an overly confident trust in technology and perhaps allied with the focus on 'Evidence Based Medicine' they rely more on the observations than actually listening to the patient.  When I was in training we were always told 'If you listen to the patient in 80% of cases they will tell you the diagnosis.' 

After qualification I had that lesson reinforced in the harshest way.  "Experience was a Hard Master - but he would have no other."  Mea culpa maxima.

The pendulum will swing again - eventually.  Patient-centred Medicine.  Nirvana, perhaps. To be fair it's already arrived in Oncology - individualised treatments, starting to appear in Stroke Rehab (great TedX talk about neuroplasticity in adults), so there is hope.

thanks for "listening"

by Czechmate - 2020-10-09 11:52:17

Thanks for the feedback and support. 

Already feeling better after they dropped the repsonse factor from 10 to 8.  Went for my run this morning and could run faster with less strain and more comfort.  Odd, but when I was paced too fast my breathing felt forced to the point of feeling out of breath.  Now with a slower pacing I can breath slower and more normal during exercise.  Hard to explain, before the change my pacing would bump to my max or just below it about 10 beats and not have much variability, no sweet spot.  So when my heart rate got high enough it felt like it became a circular feedback error of sorts where my heart rate pace determined my breathing as ooposed to the other way around.   It wasn't tach, unless it being some sort of exercise induced pacemaker driven tach.  Anyway, so far so good.

 

Settings

by AgentX86 - 2020-10-09 13:24:29

The answer to a bad product or service is to find a better one. Medicine is treated differently but it shouldn't be. To paraphrase...If you don't like your doctor, fire your doctor. If you can't, for some reason or other, change your life so that you can.

I've not had much of a problem getting my rate response set any way I want. My EP is more concerned about the minimum, maximum, an distribution (histogram) that how I get there.

I've had discussions with him about minimums and he suggested a night setting to reduce problems sleeping. As long as I didn't have PVC problems, he was fine with 50bpm. He raised my daytime rate to 80bpm specifically to outpace PVCs. When I go back I'll probably try to get that reduced, since I haven't had any problems in a year or so.

My EP doesn't care at all about the dwell times, slopes or any of that stuff. It's between me and the device tech. The device tech has commented about my strange histogram (50-night, 110 for 3-hours, and 80 the rest of the time. They use this information to set the rate response but that's supposed to be the generic settings and probably are for 90% of us. The rest require fiddling to get optimum results

 

Approach to doctors.

by Selwyn - 2020-10-09 16:42:38

Doctors train for many years, and make a lot of sacrifcies, to help patients have quality of life. They are guided by the science ( science measures) and the well being, and wishes, of their patients, acting in their best interests. 

In general, physical trauma, swearing, and rude shouting are detrimental to the doctor-patient relationship, and if I may add money, I will do so. Fixed ideas are not helpful on either side of the relationship.

If you want a good medical opinion and be listened too, first describe  your symptoms and how you feel about them, then asked the doctor what is, in  their learning and experience,  they think could be the cause and treatment?  By handing ' the ball into the court 'of the doctor you keep all your options open. Having listened to the learning and experience of the doctor,  you are then in a position to discuss, perhaps as an expert, about your illness. 

Doctors do appreciate patients (and parents) may know best, however to be told how to do your job is never a good opening gambit.

eg. Patient : "I come for some antibiotics for my sore throat". Doctor, after examination, thinks," How do I tell this patient they could have throat cancer?"

Disagree

by AgentX86 - 2020-10-10 15:01:06

I'm with Selwyn on this one.  Telling the doctor his business is never a good approach.  Telling one's car mechanic what his job is, isn't either. It's helpful to know as much as you can so that you can speak with your doctor (or mechanic) intelligently but they know a lot more and can appoach the problem dispashionately.  Until proven otherwise, they are the expert. Of course communication is important but it is, by definition, a two way street.

My thoughts

by Gemita - 2020-10-10 20:46:03

I feel many Cardiology doctors including EPs are still living in the past as far as assuming a position of superiority over their patients is concerned.  This I believe is partly born out of necessity to take control in an emergency situation where decisions may have to be made quickly to save a life.  However many of us have to live with chronic heart conditions which wear us down and cause many difficult symptoms which are not easy to live with.  Bread and butter everyday conditions like heart blocks and arrhythmias may not excite a cardiologist but they certainly excite the hearts of the sufferers so a little more understanding and respect for the patient’s symptoms would go a long way.

Of course each one of us has our own unique story to tell.  Some have found good doctors to work with.  My experience has been rather mixed.  My symptoms initially were not always present during testing and this led to frustration and concern on my part and to an eventual breakdown of trust, confidence and mutual respect which was regrettable.  

Selwyn investigations/science can only confirm what is seen during testing (monitoring). How many patients have struggled to get a diagnosis because their symptoms were not present on testing and yet a few minutes later on their way home they develop symptoms.  They are sometimes not believed by their doctors because of an all too brief negative test result.  I have known patients who have struggled and suffered for years because their symptoms have been put down to anxiety until they were finally diagnosed with an arrhythmia like AF.  My first cardiologist actually said “I would like to see something more exciting before I am prepared to believe that you have an atrial tachy arrhythmia like AF”.  I went unprotected for years with no anticoagulation This could have been dangerous.  In the very least i should  not have had to struggle to be heard, to be believed.

Also test results are not always accurate.  Diagnoses can be missed.  My cancer was missed in the past and only picked up after it had metastasized.  My oncologist at the time apologised for the error.  I do know my own body best and all good doctors would do well to really hear what their patients are saying occasionally, particularly cardiologists.  On my part I need to find a better way to have a conversation with my doctor during a consultation because I realise he has more knowledge about my condition than I and I am there for his opinion not mine.  I just feel that my questions are not always answered, results of tests not always explained although in fairness his last comments to my question about the significance of my test results were a complete surprise when he suddenly closed my medical file and looked at me and said "I am more interested in hearing how you feel, how you have been over the last few months, not in the results of any of your tests", so perhaps he is listening.  However I never got an answer to my question.

Doctor-patient relationship.

by Selwyn - 2020-10-12 17:20:49

Real listening is a skill, and is a prerequisite to good communication, a two way process. The marrying of the science, and its understanding to the patient is an art, and is likely to be based on experience. I have certainly seen patient's dying of brain tumour with a normal brain scan. I have certainly seen patients given a terminal diagnosis, when the doctor got the wrong diagnosis by not considering alternatives. There is an old understanding in medicine that you treat patients rather than test results.  Some doctors are more thoughtful than others, some better at communication. As I have said, the thinking doctors do appreciate the patient knows best and will listen.

Sadly there are a number of patients that never accept their diagnosis or the fact that there is not a diagnosis to be had. They go from doctor to doctor, sometimes wasting a lot of their money on private medicine, looking for something they can agree with.  Perhaps a classic is a relative of mine who would not accept a diagnosis of irritable bowel syndrome but was happy to have hyperdynamic peristalsis - communicaation is indeed an art! 

 

 

My EP has a God complex

by MakeAmericaPaceAgain - 2020-10-23 16:00:16

Oh, Gemita - I so long to talk to you. Thank you for your posts and telling that you had to change doctors. I am looking for a new EP & office to monitor my Medtronic PM which was implanted (my first) on 8-25. Then the day I plugged in my CareLink monitor - EP's office called said come in-lead dislodgment-had revision surgery. EP said dislodgment is 100% my fault and yelled - I mean - YELLED at my in front of my hub (who has physics Ph.D.& is prof) that he is THE DOCTOR & I am not to try to play one by searching Google. He was angry b/c Silverlon website said to wear their bandage no longer than 7 days & I couldn't see him or anyone in office for 24 days until they called w/ Medtronic alert. Allergic to bandage & took it off. I have been a science Reference Librarian, am an Attorney, & am ABD P.H.D. in psychology. Then EP put his fist in my face waved it at me - about when I get my M.D. -then he will answer my questions. I am beyond upset. Would love to talk to you. He is abt the only EP in town of 100,000+/- and is in high demand so gets away with this. Told him I am making complaint to his EP Board of Certification and then he doubled down and said he was 100% certain that because I had not followed doctor's orders that I had caused lead problem. Medtronic says I can get this info - stored for 14 months. My Fitbit NEVER went above low 40's until revision  surgery on 9/28. Yes - he did revision after he had yelled. Husband has leukemia & we don't go anywhere except emergencies due to COVID. But yesterday in 3 wk after revision check up Dr. came in to remove a stitch. I asked if he had given antibiotics because if a revision - which opens up pocket is done soon after PM implanted- chances of endocarditis are close to tripled. He had not told me this or would have gone to large cardiac center for revision. But he would not even tell me if he had given IV antibiotics during revision. He told me to get a new doctor and that doctor could talk to me about antibiotics. He is beyond the pale of doctor - not patient - centered medical practice. I am looking for new EP in closest large city. If I tell them all this - don't know if they will believe me. It's so bizarrre I wouldn't blame them. Thank you for reading. My hub backs move to change EPs. He had never seen/heard any professional act like that. So very distressing. 

You know you're wired when...

You have a 25 year mortgage on your device.

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I'm 35 and got my pacemaker a little over a year ago. It definitely is not a burden to me. In fact, I have more energy (which my husband enjoys), can do more things with my kids and have weight because of having the energy.