Have received Barostim device

Barostim Device

by Gemita - 2022-10-12 16:01:17

Dear Islandgirl, thank you for the update and I am sorry to hear of your discomfort.  I am glad you are trying the Barostim therapy which is an option for heart failure patients that uses autonomic stimulation to improve symptoms.  Have you noticed any changes, or is it too early to tell?  I attach a link for members who want to read about this therapy.  I hope it will be a success or at least help you to feel better.

https://www.cvrx.com/healthcare-professionals/

Good luck for tomorrow and I truly hope the Barostim makes a difference.  It is miserable being on anti arrhythmic meds and while they might help reduce episodes they can become pro arrhythmic or cause other problems.  You sound as though you need to be on a cocktail of more urgent meds anyway for your heart failure and they must take priority. 

Great News

by Good Dog - 2022-10-13 10:16:26

Congratulations! I am happy to see that you finally had the implant. I think that you obviously will need some time to recover before you can see how this cutting edge technology will change your life in a positive way. You are in my thoughts and I'll be hoping and praying that this is the beginning of a new and better chapter in your life! Thanks for posting! Just know that we'll be thinking about you.

Sincerely,

Dave

Thanks for the positive thoughts and question.

by islandgirl - 2022-10-15 16:10:36

The HF dr and device rep activated the generator. My BP before activation was 120/73. They moved up 2 points (have no idea of the correct terminology) and it dropped my BP to 111/63 after walking around in the office.  My pulse remained at 60. The dr said she would like me set at 6.  I go back in 2 weeks. She said she will have me restart the Entresto after my next visit. Not sure how they'll make that work with an even lower BP to start.  I'm PM dependent and crtd is set at 60. It seems like a slow process and their positivity gives me optimism.

My only other anti arrhythmic option is amiodorone to keep the ventricular arrhythias controlled.

I'm having almost continuous ectopic beats--mostly PACs.  Does anybody know the likelihood of PACs turning into flutter?

I am finding it difficult to work with multiple cardiologists. Electrical and HF/transplant surgeon.  The EP definitely let's me know he only focuses on electrical.  At least they're at the same hospital/university.  

Thank you for the guidance and direction, listening, knowledge, and support. I hope my experience will help others. 
 

Karen
 

My PACs often trigger AF and Flutter

by Gemita - 2022-10-15 17:28:38

Dear Karen,

Thank you for the latest news.  You are a fighter and you deserve to succeed.

As a matter of fact my PACs which can be continuous on bad days always trigger AF or Flutter, but I really don’t know which came first?  I suspect the PACs.   I noticed Flutter when taking Flecainide, anti arrhythmic med for AF.  I stupidly failed to take a beta blocker at the same time to protect from Flutter.  Because Flecainide can cause Atrial Flutter with rapid conduction, combined therapy with a beta blocker, verapamil or Diltiazem is always recommended.

As a matter of fact, I am currently in contact with my clinic to optimise my settings.  I suggest you ask your EP whether your pacemaker has Atrial Rate Stabilisation or similar settings designed to "outpace" atrial arrhythmias.  I believe this function is designed to help prevent long pauses that commonly follow premature atrial contractions?  This should help suppress their activity.  I would imagine with your pacemaker/ICD you will have anti tachycardia pacing Karen, so you should have a few options pacemaker wise to help reduce your PAC episodes.  

I attach a link on Atrial Rate Stabilization in case your EP is able to utilize this setting for you (if you have such a setting and if it is appropriate).  

https://www.medtronicacademy.com/features/atrial-rate-stabilization-ars-feature

If all else fails, remember Amiodarone may safely be used for short periods if you are monitored closely for any adverse effects.  It might just help to get you over the worst period and stabilise you while your body is adjusting to your new therapy and heart failure meds.  My mother was given Amiodarone for a short period and it certainly settled her arrhythmias when everything else failed, so don't absolutely rule it out.  Doctors like it because it is so effective.  

Stay strong Karen and never give up the fight.  My sister was diagnosed with heart failure last November, EF of 16%.  She was put on a cocktail of meds.  Her EF is now 45%.  She was never offered an ICD, nor pacemaker, only treated with meds.  Fortunately she doesn't have ventricular arrhythmias, but her progress has been truly remarkable.  I hope for the same for you too

Flecainide

by Selwyn - 2022-10-16 12:42:22

Hello Islandgirl,

My best wishes for a sustained recovery. Your spirit is inspiring, continue to battle on.

Flecainide is contra indicated in structual heart disease. If can cause atrial flutter ( I had an ablation).

I have been told my cardiomyopathy makes me prone to tachy atrial arrhythmias and these can pop out at any time ( I have just narrowly escaped by 4th ablation).  I just wondered whether ablation therapy is an option for yourself?

Thank you all for your comments!

by islandgirl - 2022-10-23 13:01:07

Thank you all for your support, information, resources.  We all have our own health problems and we manage to handle them, even though times can be challenging and overwhelming.....  This site provides an avenue to discuss problems with people with similar problems and the feedback is most appreciated.

I take Sotalol.  My dose was reduced from 160 2x/day to 120 mg, but then increased to 160 in the pm and 120 in the am.  My QT? wave is still too long.  I also take aldactone, bumex, xarelto, and will be back on entresto soon. 

I've had numerous ablations 15+? with the first in 1999.  I've had ablations for flutter and other ectopic arrhythmias, all in the atriums.  I've avoided afib so far....  My ventricular arrhythmias come from both ventricles and numerous different areas, which I told was uncommon, so ventricular ablations have never been attempted.

I can go back to regular activity 2 weeks from tomorrow, per my surgeon's appt Friday.  

I am scheduled for a couple of weeks of cardiac rehab in early December, as they want me closely monitored as I get back to exercise and see how my 'angry, irritated' heart performs.  

Thank you Gemita for the link and suggestions for discussion with my EP.  

I will be reaching out again to give you updates.  

Karen