Office visit (rant)

If there's something harder than communicating with medical professionals, I don't know what it is.

Oh and I have some choice words for St Jude's while we're at it.

I tell them I've been having PVCs accompanied by wheezing. My pulmonologist assures me it's not asthma and is probably heart related.

They tell me my pacemaker is working fine.

I tell them yesterday afternoon I had such a bad "PVC storm" I was close to collapse and they tell me my pacemaker didn't record it, and--you guessed it--my pacemaker is working fine.

I say the feeling was very like the feeling I would get when I had PVC induced PMT. They said the pacemaker didn't show PMT and it was--wait for it--working fine. No, that time she said it was "working beautifully."

I'm getting the impression--in the nicest sort of way--that they believe I'm wasting their time. I imagine their case notes, "patient could not be reassured although it was stressed that the pacemaker was working."

So, I say, look, I believe my pacemaker is working fine. But I believe my heart is doing PVCs and the pacemaker for whatever reason does not record them. I'm having wheezing associated with PVCs and I almost collapsed.* (*see below)That's why I'm here.

So she said, well it really doesn't matter how many you have if you are symptomatic.

At last! We finally talk about what brought me in--not what the pacemaker is doing/not doing.

I'm doing a 48 hour Holter monitor, but there's no little box to check for wheezing--so I made one. And I have been given a "rescue" medication, and a different kind of magnesium.

We'll see what happens next.

Thanks for listening.


*Note.  If I'm somewhere there are witnesses, and I can collapse without breaking my arms or hitting my head, I won't "almost" collapse. I will flat out hit the ground. Actions speak louder than words, particularly if one is a little old lady whose words don't seem to count for much if anything. But boy, do they hate to see those little old ladies go down!




by AgentX86 - 2019-09-06 21:29:31

I have a feeling that you're one "little old lady" who isn't going down without a good fight.

I was really surprised that my pacemaker wouldn't record PVCs unless there was a long string without a normal beat. I had to capture the event with the remote monitor. Then they believed me.


reliance on what the devices show

by islandgirl - 2019-09-06 23:15:48

I've had my EP tell me everything is fine.  After complaining enough, I've worn a holter monitors several times and things weren't fine, showing what I was concerned about.  It's very frustrating the docs rely on the device reports so much and don't listen to us! 

Good luck and stay viligant.  We have to be our own advocates.

it's the bloody truth

by jessie - 2019-09-07 01:16:58

you really do need to give your opinion and advocate for yourself. drs seem ot seldom listen tho i od have my old doc back and tho he is up there like me in age he willlisten unlike the one i had before



by Tracey_E - 2019-09-07 09:23:06

I'm sorry they've been so difficult. Hopefully the holter will give some answers. 

Reading  your plan to collapse reminded me of Electric Frank talking about the show he planned to put on in the ER if he ever went EOL. Oh how I miss Frank.


by ROBO Pop - 2019-09-07 13:55:02

It just might be you're talking to the wrong people. Why on earth are you talking to St. Jude's when it's Abbott. Could be your problem.


On s side note I have a huuuge favor to ask. Please, please, please can I watch when you hurt Agent Not So Smart for his comment about you being old.


by Gotrhythm - 2019-09-07 18:23:26

Anything for you ROBO...

But in all fairness, I referred to myself as an LOL first, so he was only following my lead. 

Honestly, until I was way past 65 I thought of myself as well, late middle age-- certainly not old. But one day I had to admit that if 70 could be called middle aged, that meant I expected to live to 140. Frankly, that would be awful.

Inside, I'm an a- -kicking 42, but I've had to come to terms with the knowledge that others see a little old lady. A darling little old lady, I hope. Just the sweetest old thing!

 I let them think that.  [ evil grin ]


by AgentX86 - 2019-09-07 22:29:39

Well, I did put it in quotes, indicating that the words weren't mine.  ;-)

Hell, I'm still "middle-age" at 66 (67 in a couple of weeks).  I just can't convince my body, particularly when the alarm goes off at a quarter-to-six.

You know you're wired when...

You have rhythm.

Member Quotes

A pacemaker suddenly quitting is no more likely to happen than you are to be struck by lightening.