Search found 11 matches

by jan122016
July 30th, 2017, 5:14 pm
Forum: 2017 Forum topics
Topic: Sarcoidosis of Heart - ICD Implant - Vtach storm
Replies: 5
Views: 1208

Re: Sarcoidosis of Heart - ICD Implant - Vtach storm

I had lots of ventricular tachycardia and was finally diagnosed with cardiac sarcoidosis (after a previous biopsy of lymphatic sarcoid) in May, following a cardiac PET. Had my first shock without exercise, when I was sleeping, so up to 4 now. I was put on prednisone, metoprolol, mexilitene and lots ...
by jan122016
July 14th, 2017, 4:40 pm
Forum: 2017 Forum topics
Topic: OT-Chemotherapy day 1
Replies: 63
Views: 7820

Re: OT-Chemotherapy day 1

Thank you for the thoughtful postings about turning off ICD. I have been thinking about having that added to my directives sooner rather than later. Best to you and hope your quality of life inches up.
Jan
by jan122016
July 7th, 2017, 5:47 pm
Forum: In The News!
Topic: Can everyone with an icd expect to get a shock at some time
Replies: 14
Views: 5888

Re: Can everyone with an icd expect to get a shock at some time

Hi, I've had an ICD for 7 months and have gotten shocked 4 times. I just got a diagnosis of cardiac sarcoidosis as the reason for the ventricular tachycardia, so I have the ICD for a totally different reason. The standard treatment for sarc is steroids, and they have not been effective (6 weeks so f...
by jan122016
May 10th, 2017, 4:33 pm
Forum: 2017 Forum topics
Topic: 19th Anniversary
Replies: 12
Views: 1739

Re: 19th Anniversary

It is very encouraging to read of such long-time ICDers. Thanks for sharing!
Jan
by jan122016
March 23rd, 2017, 8:08 pm
Forum: 2017 Forum topics
Topic: OT-my condition
Replies: 66
Views: 7312

Re: OT-my condition

The best to you as you commence a new treatment.

Jan
by jan122016
March 12th, 2017, 5:29 pm
Forum: 2017 Forum topics
Topic: ICD Pacing you out...
Replies: 21
Views: 2686

Re: ICD Pacing you out...

Surprisingly, I did not have to jump through a lot of hoops. My electrophysiologist is in NM since the local hospital doesn't have one. He had connections with doctors at UNM so that probably helped, and turns out my insurance is in network there. Otherwise I would probably have declined to do it, a...
by jan122016
March 7th, 2017, 7:35 pm
Forum: 2017 Forum topics
Topic: ICD Pacing you out...
Replies: 21
Views: 2686

Re: ICD Pacing you out...

I've gotten paced out of ventricular tachycardia (VT) a number of times and I can't really feel it, but it happens when I all of a sudden get very short of breath and feel horrible, same as when I get shocked, except it isn't followed by a shock. Just had it happen yesterday (pretty sure, won't know...
by jan122016
February 7th, 2017, 12:22 pm
Forum: 2017 Forum topics
Topic: Welcome jan122016 (Jan)
Replies: 15
Views: 2460

Re: Welcome jan122016 (Jan)

Hi all, here's an update. My electrophysiologist looked at my shocks and thought an ablation might be appropriate. So I had another EP study, this one in depth, and he decided not to do an ablation since the VT signatures were not as consistent as he'd thought they would be. For now I'm back on the ...
by jan122016
February 1st, 2017, 10:49 am
Forum: 2017 Forum topics
Topic: Welcome jan122016 (Jan)
Replies: 15
Views: 2460

Re: Welcome jan122016 (Jan)

Hi all, Thanks for the tips on chest discomfort and backpacking straps. I will probably get one of those sheepskin sleeves for the car at least. My visit with the electrophysiologist yesterday went well. I'm now on Sotalol and will go back on Friday for a followup. I am on Advair Diskus so I'll have...
by jan122016
January 30th, 2017, 5:39 pm
Forum: 2017 Forum topics
Topic: Welcome jan122016 (Jan)
Replies: 15
Views: 2460

Re: Welcome jan122016 (Jan)

Wow! Thanks everybody for the welcome. I haven't been on here recently (spending time looking up terms like dromotropic and how a 12-lead EKG works), but came back to see what you've all been doing. So far my ICD life has been less than spectacular, with 3 shocks and a paceout, and 2 medication chan...
by jan122016
January 4th, 2017, 2:27 pm
Forum: Main Forum 2019
Topic: .·:*¨¨*:·..·:*¨¨*:·.INTRODUCTION THREAD.·:*¨¨*:·..·:*¨¨*:·.
Replies: 1165
Views: 397126

Re: .·:*¨¨*:·..·:*¨¨*:·.INTRODUCTION THREAD.·:*¨¨*:·..·:*¨¨*:·.

jan2.jpg Hi, I'm Jan. I got a Medtronic ICD implanted a couple weeks ago after a year of chasing different issues: a lowered ejection fraction and slight cardiomyopathy which has improved; shortness of breath and presyncope; SVTs and PVCS and finally VT. I've had beta blockers and ACE inhibitors an...