Felt dismissed and not taken seriously

I am 6 days post implant.  I originally had a PM implanted on the left side in 2010, subsequently had 2 abalations, and the PM and leads were removed in 2011.  Since then I have had tachy pretty well controlled on meds.  Starting November 8th, I started bradying down, first in the 50s for a day (even with activity ) and then the 40s and finally the 30s.  I ended up in the ER on the 11th with sinus bradycardia.  After numerous hits of atropine which only temporarily brought my HR up to the 50s, and an IV of a beta blocker binder which did nothing, I was admitted to the ICU.  I had a treadmill stress test which I could not finish because my HR want up to 185bpm in less than 3 minutes.  They discharged me and I want back to work the following day, which was a Thursday.  The next day (friday) I ended up back in the cardiology clinic with my HR once again in the 30s. Had a nuclear med stress test which was essentially normal (thank goodness) and the doc on call came in and basically said, "you are in no danger.  People live with a HR in the 30s all the time.  It may be coming from all the abdominal surgeries you had.  If you really feel ILL I can admit you and do some more tests, or you can go home and rest as this is not malignant."  I felt shoved aside and I want home.  Less than a week later the director of the clinic implanted the PM.  What would you have done ?  I feel 99% better as my rates are 60 to 140 ... 60 seems fast but I know that's from such lows I have been dealing with.  Has anyone else had this happen to them?  How did you handle it?


A complex journey

by crustyg - 2019-11-28 07:08:13

I can fully understand and empathise with your feelings about the comments from the on call doc.  But I've been on both sides, and doubtless there have been patients where I've been less than tactful and someone has gone away nursing bruised feelings and resentful. Tiredness, over-work (too many patients), long, long hours all combine, but these are explanations not excuses.

For you, you're in the happy position where you felt able to sign a consent form for the PM, and now you feel 99% better.  Minimum HR of 60 will feel really fast, and perhaps 50 might be more appropriate - you can request an adjustment at your first follow-up appointment - you know the drill, you've been here before.

Tracey_E has posted many times about the mental aspect of implanted devices: getting used to the idea of an implanted device (again) can take a lot longer than the physical healing.  Focus on the wonderful sensation of being better, perhaps better sleep, better ability to walk, climb stairs, less breathlessness.  For some people it's just the ability to stay alive assisted by our little box, for others like me it's the delusion of being 39 again!

Forget rude/offhand doc.  He may learn, he may already regret being offhand, he may continue to be a jerk!  I apologise on his behalf.  It's in the past, neither of you can change it and in the grand scheme of things, it's not really that important.

Best wishes.

it is all about symptoms

by Gemita - 2019-11-28 09:14:40

Yes I have experienced what you describe and only through persistence and belief in myself was I able to finally get the treatment I needed.   I found though that most good doctors were genuinely concerned about making my symptoms worse with treatment since treatment for heart rhythm disturbances is not without risk.  I had to prove that I was really "symptomatic" before they were prepared to treat my symptoms of bradycardia and other arrhythmias. I felt I had to prove myself time and time again which was exhausting and to get my arrhythmia caught at the time of any monitoring was even more of a challenge since my arrhythmias are intermittent.

When we see our doctors, it is important that we try to get across to them just how much we are affected by our symptoms, since these may not always be confirmed by any tests they may order, leaving us feeling confused, helpless and alone.  We know our bodies best and it is important that we describe exactly what we are feeling.  For example if we get dizzy with our low heart rates, it is not enough to say "I come over a bit faint" we need to tell the doctors we see what actually happens when we get low heart rates, something like ... "when my heart rate is low, I become icy cold and my blood pressure drops rapidly and I can feel close to collapse.  I sometimes lose consciousness or need to lie down quickly to regain strength.  I cannot continue with my usual activities for the duration of my low heart rates, I often become breathless and experience chest pain  . . " and so on  (if any of these apply to you??)   They did to me prior to my pacemaker.  The more detail we can give to correlate our symptoms to our arrhythmia (like bradycardia) the better our chances of getting the treatment we need.

Yes doctors are only human and we need to remember that cardiologists/electrophysiologists are often dealing with critically ill patients.  On my first cardiology visit at the start of my AF journey, my doctor was more interested in an inpatient who was suffering from Ventricular Fibrillation than he was in me. When I tried to show him an ECG Printout of my Atrial Fibrillation, he actually said "I would like to see something more exciting before I am prepared to accept that you are suffering from a tachy arrhythmia like Atrial Fibrillation".  I felt his remarks were totally insensitive and I felt deeply hurt. I wrote to him explaining there had been a loss of trust/mutual respect between us and asked to be referred to another doctor in the same clinic for a second opinion.  However I realised afterwards that my first doctor had to move quickly to save his patient with VF and my AF was insignificant in comparison.  I have learnt a lot from those initial unhappy days, that with our hearts we have to proceed with care and that sometimes "no" treatment can also have a role to play.  I now have a dual chamber pacemaker but have stopped anti arrhythmic meds which were clearly having many unwanted side effects.

I hope you will be very happy with your pacemaker and that your quality of life will be much improved.

You know you're wired when...

You always have something close to your heart.

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