Pacemaker to ICD upgrade

ICD Swap

by Jmiller - 2019-03-10 16:19:11

I was just like you, fitted with a dual lead PM (St Jude) in 2009 for 2nd degree heart block and in 2013 they diagnosed me with Cardiac Sarcoid and they advised I swap the PM out for a ICD due to fear of a possble bad arrhythmia.   Like you they had to replace leads (now have 3 leads).   The implant was done in February and in September I developed a bad vetricular tech and passed out, ICD brought me back.   Happened again 2 weeks later, again brought me back.  Scary stuff, the ICD possibly saved my life both times.  Haven't had an episode since.  They atributed it to changes from steroid treatment I was on that caused a bad circuit to develop.   I like you am very active, ice hockey, golf, biking.   Living with the ICD is really no different for me than for the PM.   You hear stories about false shocks, which sounds aweful but in both my cases the ICD shocked me back and I felt nothing, just woke up to people scurring around trying to call 911.   As you said, the biggest risk of the swap is the lead change.   I had no complications.   I found I was uneasy for a period of time after getting the ICD, but I've found with time I got used to having it and don't even think about it.   Hope this helps and good luck with your procedure. 

ICD Swap reply

by kushanku1976 - 2019-03-10 16:42:22

Thanks for the reply.  I appreicate it.  I too have Cardiac Sarcoid.  They are not 100% that they are going to change the pacemaker, i have 2.5 years of battery life left but they have told me that this is somethign they may considering.  I am also lowering my steroids, so am being monitored very carefully.  Im so nervous about having a flare and not being protected by an ICD.  I wish they hadnt of mentioned it to be honest.  Thanks again.

pm to icd upgrade

by islandgirl - 2019-03-10 18:04:42

About 2 years after my Medtronic pm was implanted due to sick sinus syndrom, I had a sudden cardiac arrest and pm showed quickly going from normal sinus rhythm to quickly vtach, vfib, fthen flat line for 10 min.  I survived with good CPR for 30 min. and 5 shocks from EMS. I was upgraded to a Medtronic ICD.  The right ventricle lead was removed and replaced.  Make sure you have somebody remove the lead with experience.  If they leave a loose lead in, you will not be able to have an MRI.  

Add to Stress

by Jmiller - 2019-03-10 19:18:00

Sorry, I didn't mean to add to your stress.   To maybe help you feel better the two episodes where I needed the ICD were when they first put me on a high dose of steroids (3 days in ).   They said there was some presidence for initial treatment of steroids causing this problem.   Since your tappered you are probably fine.   I definately know how this can mess with your head.

Can I ask how they have treated you, I was on 20 mg Pred for 1 year, 15mg for 3 months, 12.5 mg 1 month and 10mg for 2 years.   As they dropped me down to 5 mg over the next year my EF fraction seems to have taken a hit.   Now I'm on 20 mg again with a plan to tapper to 10mg where I seemed to be the most stable.

No problem.

by kushanku1976 - 2019-03-10 20:16:31

Hi. No worries. You haven’t added to my stress at all. I know that asking questions on here is going to give me answers That may be uncomfortable but that is fine. Being informed is more important. 

I was put on 40mg of Pred 5.5 years ago. I then tapped off over a year to 15 which is stayed on for 2 years. Then about 2 years ago I went down to 10. I’m now on 6 and have just been told to aim to hit 3 a day.   Lowering them has also given me flu like symptoms which has been terrible.  

6 years after Cardiac Sarc diganosis I’m still effected by it. But some days are good others are not. Going to the hospital last week had triggered off a load of worry but in time I will adjust. I’m just anxious about having a flare.  

Thanks for the advice though. It’s good to know other people are out there with similar problems. 

%EF

by Jmiller - 2019-03-11 16:28:14

Can I ask where you are with %EF?   I started out at 35-40%, improved to 45-50% by the time I was at 10 mg/day.   After the period of weaning down to 5 mg/day I'm down to 35-40% again.   Now as I said I'm back to 20 mg/day.

Not sure.

by kushanku1976 - 2019-03-11 17:48:31

I’m actually embarrassed to say I don’t know. But I personally don’t ask to many questions because it freaks me out a bit. I’ve been told that my heart work well despite the screwed electrics which has caused complete heart block. All I know is that my lower chamber is completely dependent on the PM and my upper chamber uses it 30% of the time. 

Cool

by Jmiller - 2019-03-11 18:24:32

No problem, that can be a good way to handle it.   I am unfortunately a science guy and  it helps me to know all the details.    Thanks for sharing

Sarcoidosis and the pacemaker

by braver - 2019-03-13 21:09:24

I also have cardiac and lung sarcoidosis and now 2 weeks with an ICD & pacemaker. I have an appointment with sarcoid DR. next week and am concerned about starting steroids with the pacemaker and ICD. Any suggestions?

Steroids and Pacemaker.

by kushanku1976 - 2019-03-14 03:43:57

I only have a pacemaker so my experience of steroids is different. I had no problem with them initially and they helped bring the disease under control. When I came off 40mg the doctor said tapper off at 5mg a week. This was a mistake. I felt so Ill. I’ve bet felt the same again to be honest. So when you do taper just make sure you do it as slowly as you can. I’m tapering now by don’t. 0.5 mg a month. And I still feel a bit rough. That though could be something else.  Thanks.