dl123
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dl123, March 5,  2021  2:54pm EST

new HF... Biventricular ICD recommended

65 female HF diagnosed 6 mos ago.  non ishemic cardiomyopathy leading to heart failure. efr 25%.. left bundle branch block...biventricular ICD recomended.  hf drugs working well, lab tests good.  anyone experienced anything similar or info on biventicular icd s.  which is basically a pacemaker for left and right ventricles with an implantable cario defibrilator attatched. also diagnosed earlier last year with lupus and yes i was on hydroxychloroquine for 6 mos.  so it possibly coud be  a contributing factor. basically doing ok now just need to watch fatique at times.

2 Replies
  • AHAModerator
    AHAModerator, March 5,  2021  4:02pm EST

    Hi there,

    Thank you for sharing your experience with the Patient Support Network. I hope you will find a sense of community and support among the members here. Unfortunately, I am not a medical professional, but I can share this resource with you on Devices and Surgical Procedures to Treat Heart Failure.

    Please keep us updated on how you are feeling!

    Best Wishes,

    AHA Moderator 

  • jerzeycate
    jerzeycate, March 6,  2021  12:21pm EST
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    Hi there...

    It's great to hear that you are doing ok. I just had my initial **-vent a Medtroni CRT-D replaced as the battery was dying. They put mine in July of 2013. 6 months after I became suddenly ill with cardiac issues and, at that time, gave me 3-months to live without a ransplant.. My EF, at the time was 11%. I was not eligible for translant and they told my family to "Take her home. Make her comfortable. Get her affairs in order."

    The **-vent was implanted iwih no promises, but as a chance to have more time to find another answer. I had, at tht point, been in hospital for 6 months and was unable to get out of bed without asstance. The complex crdiac device they implanted was then experimental. Well, did it show it's value quickly. The very next morning I got out of bed on my own and walked to the bathroom. 2 days later I dressed myself and walked out of the hospital. Within 6 months my EF had gone up to 30%. By 18 months it was at 55% here it remains to this day.

    The device alowed my heart to function properly. My cardiac electrical system it turns out, had been decimated by a viral infection (Coxsackie B) that got into my heart. With the bivent operating my hearts functions it enabled the rest of the therapies (medication, lifestyle changes, dietary changes) to work.

    It's been 8 years since they gave me a 3-month "expiration date." My EF remains around 55% and my bnp went from 5000 (on the 100 scale) to under 50. Most of the damage done to my organs from the 6 months with such limited oxygen in my blood has reversed--in most cases without residual effects.

    So... Know that you may be on the right course. The course to a new life. A life with cardiac issues that are being managed. btw... once I was stable (Ef wise) they were able to cut the BP meds in half which really helped the fatigued feeling. Check with your medical team as it may be a med making you so tired and they may just be able to tweak it or change to another medication.

    Best to you...

    It's A Great Day To Be Alive...

    Cathy

     

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