PET Scan

Hi all, I had my 3 months (4 months) checkup with my cardiologist, and she says she super happy with everything - she also mentioned that I"m using the device less than 5% ("Which is great - it means your battery will last longer!!!") ... and that I won't see her again for a year or 18 months, and I'll have an ultrasound in March 2024 to check everything is still in place. 
And then she asked if I'd heard from the hospital re: My PET Scan, and I had to say "Pardon? the what now?" and she said that because my complete heart block is so far idiopathic, she would like me to go for a PET scan to check for sarcoidosis. 

... is this normal? Should I be worried? Dr Google doesn't reply with nice things - and I just got through this whole pacemaker thing and finally starting to panic less, and now.... this? 

She did try to reassure me that it will be OK, and "We'll be seeing each other until the end of my career - 30 years at least! Get used to my face" ... :) which is lovely - but this is me.... and I'd like to hear from my pacemaker club people :D

And as luck would have it the hospital called this AM, and I'm scheduled for August 16th at 9am. EEEEEPPP!!!!!
 

2 Comments

PET Scan

by Gemita - 2023-07-27 12:55:02

Echoplex, they are not suggesting that you have Sarcoidosis;  they are just wanting to rule it definitely out, which sounds like they are looking after you well?  I would be very happy about that, although of course it would have been nice to have been in a position to rule everything out prior to any pacemaker implant but no doubt with complete heart block at that time, this was not possible.

I note you are using your pacemaker less than 5% of the time, so this suggests to me that you do not have 'complete' heart block any more, although you still need your pacemaker 5% of the time.  So the initial condition which caused your 'complete' heart block requiring a pacemaker would appear to have largely resolved itself?  Perhaps this is why they are doing further tests to look for any signs of an acute earlier illness at the time of your pacemaker implant? 

I had a PET Scan last summer for suspected pacemaker infection but it was firmly ruled out with this excellent imaging.  Preparation for the scan was nothing to eat for 6 hours, but I could drink water + I was told to avoid strenuous exercise for 24 hours before my appointment.  PET Scans look at how the patient’s cells react to a radiotracer which may indicate disease and can highlight how well certain functions of the body are working.  

Good luck Echoplex and I hope you will be found to be Sarcoidosis free. 

I feel for you

by crustyg - 2023-07-27 16:14:37

My second ablation for another prolonged period of AFlut uncovered some cardiac damage - markedly swollen ankles, raised RA pressure etc.

Which precipitated the hunt for causes of cardiomyopathy, which was not pleasant.  As a (usually) glass-half-empty person, and ex-pathologist I had a good idea what the various tests were for, and it was about a month of real anxiety.  Even the cardiac-MRI wasn't handled well as the radiographer who started the procedure didn't warn me of a staff change over and suddenly there's a face I don't know reaching for my IV to inject from a large syringe (gadolinium) without so much as a by-your-leave or introduction.  Having been on the periphery of an IV antibiotic made up with potassium chloride in my first year after qualification, I'm a bit nervous about people injecting things into my IV lines unless I've had a chance to check them myself.

Eventually we had to accept that my two long periods of AFlut had given me tachycardia-induced cardiomyopathy - not very serious so far, so I just had to get on with it.

All you can do focus on moving forward - CBT is my approach.  Otherwise you turn your life into mere existence and that's no good at all.

Best wishes.

You know you're wired when...

Your device acts like a police scanner.

Member Quotes

Pacemakers are very reliable devices.