CRT D hard copy settings not given to patient ?

I have the same problem

by Gemita - 2021-10-22 10:55:54

Hello Sandoval,

Nice to hear from you again but sorry to see you are still fighting the System.  I have to request to see my records officially and then they are released to me.  They cannot withhold them, but I have to apply under the Access to Health Records Act 1990.  It is rather long winded but that is the way my hospital handles these requests.  I see some UK members here manage to get complete pacemaker downloads, or used to be able to, while others have no problems getting Summaries of their Settings at their Pacemaker Check.   I usually request my latest downloads by email.  The data I request is sent within weeks (although Covid has delayed these non essential services).  I haven't been able to get my full pacemaker downloads and settings yet.  I always apply to my hospital's Information Governance Office who handles all these requests.  

Ref your Base rate setting of 60 bpm going down to 51 bpm.  Your Pacemaker won't (or shouldn't) allow this to happen.  Did you use a home monitor to check your heart rate during a period of heart rhythm disturbances?  Irregular heart rhythms can trick many home monitors and result in an inaccurate reading.   During an episode of ectopic beats/Atrial Fibrillation, for example, these irregular rhythms are not always picked up accurately by my blood pressure monitor and my Base rate of 70 bpm can sometimes become 45 bpm.  In the presence of an arrhythmia I often get lower Base rate readings.  Maybe that is your problem too?  Home monitors either error in my experience or record an incorrect figure.  Trust your pacemaker/ICD.  It will correctly record even the faintest, most irregular beat.  The pacemaker cannot fall much below the Base rate, although it may register anything between say 57 and 60 bpm which would be perfectly normal. 

CRT D hard copy settings

by sandoval - 2021-10-22 17:53:09

Hi Gemita, yes still fighting the system and for good reason; when I phoned the hospital I was told my base is 50 not 60 which is a damn good reason to get the hard copy since my EP who placed the CRT told me it was 60 only a few months ago when I complained of intermittent fast HR !  On the phone today I was told I need to contact my GP who then told me (via online) I have to contact the hospital - it shouldn't be like this. At least now I know the base is set at 50 but I can't say I feel confident if the EP didn't know that. At least I know I'm not the only one in this situation. I guess most people accept it but I feel like an experiment if I don't know what's going on with my body.

We understand your concerns. We live with them too

by Gemita - 2021-10-22 19:17:47

No you are certainly not the only one.  My husband (83) was originally told his Base rate was set at 60 bpm which was confirmed on his original PM ID sheet but he complained of worsening fatigue.  They said they would raise his Base rate.  At our last check we found his Base rate instead of having being raised had been lowered and was set at 50 bpm.  We have since changed doctors and pacemaker clinics and the care is so much better.  His Base rate has now been set at 60 bpm which has improved his symptoms.  

I do sometimes wonder what is going on with our health service, although today we had excellent care during my husband's MRI.

The new cardiologist did say that they usually try to keep the Base rate down so as not to weaken the heart muscle or make it work harder than is necessary.  My husband has right sided heart failure.

copy of remote transmission

by new to pace.... - 2021-10-25 21:37:07

I'm in the US and am having a hard time getting a copy of  the quartly remote transmission.  Even the yearly in office pacemaker check.  Have to call each time.  As was told they are not set up to snail mail or email the results or put in my patient portal.

Now i know to wait a week as the EP has to look at  it and then ok.  Asked about the nightly one .  Was told it goes to a triage then to the EP if they notice something amiss.  Someone is supose to let me know.  Not sure that works as one time on the quartely it was noticed had a couple of fast beats.  Had wondered why it was not caught on the nightely one.

Did tell them that the cardilogist said no stress.

new to pace