What’s it like having an ICD? I don’t want to do it.

I have been diagnosed with AFIB and was put on solotal but it's not working my cardiologist has recommended a difibilater but I'm kinda nervous about it my heart rate goes up to almost 300 beats a minute I have been hospitalized 5 times this year for AFIB can anyone give me some advice on this matter thank you

@myheart26
I have had 2 incidents of sudden cardiac arrest. I have HOCM and Cardiac Amyloidosis (stiff heart syndrome). I also have complete heart blockage so my ICD (pacemaker side) is working 100 percent of the time so my heart is completely dependent on my ICD. Having an ICD for me is not a choice. It's not a problem and the battery is good for 10.8 years at the current time. If you need one get it put in.
Jim

@myheart26
And ICD is like having your own EMS in your chest ready to help when needed. Look at it that way and know it is extremely effective in bringing heart rhythm back to normal. It is usually an outpatient surgery and millions done over and over.

I have had a ICD/Pacemaker for over 20 years and on my 3rd device. The normal battery last about 10 years.

I have never regretted having one put in as has saved me multiple times. I don't even know it is there now unless needed (I have dual device as have pacemaker also). Mine pulses my heart at 70 bpm as with my medications my HR would be down in 40s.

@myheart26
Get a 2nd opinion if you’re not sure and scared

Get a 2nd opinion, HCM can be managed with medication

@krb48
What is your reluctance in getting one? Yes it is surgery but consider minor and outpaitent in most cases.

I think those who have had one implanted and has activated can tell you they are life savers. With me I have had about a dozen shocks over the 20 years I have had one.

I have come to feel the device is there to save me if I go into tachacardia. What my cardiologist told me that once you reach 30 % EF (ejection fraction) a ICD is recommended. You have not got there yet but very close.

I am not familiar with hereditary HCM but I have HF caused by cardiomyopathy. My HF doctor just put me on Jardiance not for diabetes but research was showing can help remodel heart and improve EF.

Talk to your doctors about your hesitation, explore medications with them, or see a second opinion.

@aprilshowers97 Management of HCM using medications depends so much on the individual, we are all unique. I needed surgery; medication, in my case, was not an option. Yes, a 2nd opinion is a good suggestion.

@jc76 Hi! I am a little confused because you wrote you have cardiomyopathy but not hereditary HCM. That is new to me, would you be willing to explain nonheredity cardiomyopathy to us? Thank you.

@myheart26 Welcome to Connect, I believe this is your first post. I am sorry you needed to be hospitalized several times and the medication did not help. Are you under care at a COE (Center of Excellence)? Several participants have written responses attesting to their gratefulness on having a device. We cannot give medical advice, that's reserved for medical professionals. I have an ICD (defibrillator and pacemaker combo) named Buddy. New things are stressful for sure, I was dizzy and giddy and had syncopes because of arrhythmias after a septal myectomy, none since Buddy became my constant companion. Do read all you can about your condition and ask your doctor lots of questions.

@walkinggirl
I have HOCM and have had 2 incidents of sudden cardiac arrest. I now have an ICD. Now I have complete heart blockage so my pacemaker is working 100 percent of the time and my heart is completely reliant on my pacemaker. Also my Defibrillator went off and woke me up a few nights ago. When I had my ICD put in I woke up during surgery and knew better than to move or say anything. The ICD was put in and a few hours later I was released. I went to a Hotel but could not lay down flat. I slept in a recliner. At 2 in the morning I had chest pain so bad I had my wife take me to the ER. Once there my BP was extremely high so I had IV's in each arm after I was given 2 nitro pills that did nothing. Then I had 2 shots of morphine, then 2 shots of Fentanyl, then 2 shots of oxycodone. Still no reaction. I was then given 6 shots of Fentanyl/Oxycodone. Finally the pain started to ease.
Was my ICD surgery difficult--Absolutely but I would be dead since I have complete heart blockage and my ICD (pacemaker) is now working full-time and my Defibrillator has gone off.
Jim