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Low EF, ICD
Hello! I hope everyone is doing well.
My husband’s was diagnosed with heart failure this April. He has been wearing a lifevest since discharge. His most recent echo still showed a low EF and the cardiologist is recommending placing an ICD. We are very anxious and nervous about it. He convinced the doc to repeat echo about 2 months from now. I don’t know if its going to be any better, although I’m really praying that it will. He was recently starting to retain fluids again and and doc is not able to titrate up on meds because of low bp.
I was just wondering what are your thoughts and experiences with ICD?
I hope everyone, including me, will continue to find the strength and support as we all go through this very challenging situation. God bless us all.
jbspiro, September 14, 2019 7:31am EST
My husbad got an ICD (Medtronic) and pacemaker, three wire put in June 6 2019. First 6 weeks they had it turned up (did not know that) going a bit fast and he was back to normal. Day before 6 weeks check up, he started getting spasms in the left shoulder. The shoulder would jolt forward. It was the ICD making him convulse. Next day he went into the doctor for the 6 weeks check up and they didn’t know what had happened because it wouldn’t do it in front of them. That day they turned the speed down and he’d get tired again and have to sit down after doing something. When it was turned up, he didn’t get tired at all. We thought it was working, and told it was working for him, but when they turned it down he was told, the good part is, it won’t let you die. The speedier way was good for 8 years battery life, the way it is now, it gives him 10 years battery life. We’re going in again and ask for it to be turned up a bit, and see what they say. For the next two weeks he would get those spasms on and off. We ended up in the ER two times and they prescribed a new medication called amiderone it helped. He still gets tired but keeps going, our kids help us quite a bit. He’s 81 this November. His problem is that the bottom of the heart doesn’t pump enough blood through the heart by itself. With it, his color has improved. His dad passed at 52, his younger brother at 42. His brother had muscle failure too. I believe he would have benefited from having one of these, but it didn’t exist in 1986.
Good luck to you, with whatever you decide to do. This was our experience, everyone is different. Once we ironed things out we’re glad we did it.
November 18, 2019, we are going in again to have another catheter thru groin area to clear any scar tissue and hopefully, we won't need the amiodarone tablet he is taking. In two months of taking that medication, his thyroid levels are higher. So here is hoping😔
AHAASAKatie, September 16, 2019 9:03am EST
Good morning, I am sorry that you and your husband are having to manage this. I can share the patient education information we have on ICD's with you. I also look forward to reading what our members have to share a well. Please know that you are not along in this. Best Katie
marshamd59, September 23, 2019 12:03pm EST
I'm sorry to hear about the heart problems your husband is experiencing. I know how scary it can be. I'm sure they have him on some meds to help get rid of the fluid. I have the same problem with low bp and cannot tolerate the highest dose. I take furosemide to keep my fluids off. I had a ICD placed in October 2017 and I've had no problems with it. My shoulder was sore for a while after the surgery, but other than that I haven't had any issues. I look at it like it's an insurance policy, it's there just in case I need it. The pacemaker is set at 60 bpm, which I think is the normal setting. I hope your husband can get feeling better and that his EF goes up and he won't need an ICD, but if he does hopefully he'll have an easy time like me. One thing I've learned is every persons heart failure story is different and there a definitely ups and downs. Keep in mind you can recover from major illness caused by heart failure. I've had times I couldn't do anything, but sit on my couch for weeks, but with the help of my doctors, meds, and procedures I can get back to feeling good again. Keep the faith and know there's a lot they can do to help with heart failure these days. Also, make sure you have a good medical team behind you!
Take care and wishing you both the very best!
Michelle (heart failure survivor since 2014)
enriquer, September 24, 2019 7:03pm EST
i had a heart attack on thanks giving day 2018 , also have Low EF
used the Life Vest for about three Months , in can be some times dificult to deal with at Times depression can set in
what helped me was my family and Getting back to Work soon as possible , i had ICD implanted first week of Feb , went back to work
Excercise every day ,eat Healthy , make a conscious effort not to stress about anything , having an implanted ICD
gave me Freedom to Live a more active life , will still having the piece of Mind
Memorare, September 25, 2019 10:15am EST
Thank you so much for sharing your experiences. While I am still hoping for an improvement on the next echo, I do see the purpose and importance of the ICD. I think the possible complications are what scares me the most.
There are times when anxiety looms. But we have to do what we have to.
I am so thankful to have this forum and this group who share stories and give each other support. We are in our 30s and while we are blessed to have a supportive family, there is really no one that we know who are going through something like we are.
‘Hoping that everyone will continue to do well and wishing you the best! 😊
jerzeycate, October 10, 2019 11:53am EST
I also had multiple problems. My EF was 11%. A virus had decimated the electrical system in my heart.
I had a Complex Cardiac Device implanted. Mine was a Medtronic Achiva CRT-D. While it has an ICD, it also has a star wars type of pacemaker that does a lot more than pace. IT can actually retrain the heart,
I was given 3-months to live without a transplant. That diagnosis and prognosis were made nearly SEVEN Years Ago. While I am far from perfect health again, I am also far from where I was when my heart went off the reservation and had a 3-month ex[iration rate...
It's A Great Day To Be Alive..
Mspolland, October 23, 2019 12:10am EST
I had an ICD implanted at the end of August. Other than some initial soreness, I've had no problems. Prior to the implant my heartbeat sometimes dropped to the low 40s. I passed out twice. It now stays at 60. I, too, had reservations but decided to do it when my cardiologist said it might keep me alive. I'm very glad I had the ICD implanted.
cdavis805, November 16, 2019 6:27pm EST
Hi. I had my ICD implanted one year ago after passing out due to tachycardia. I also have cardiomyopathy (genetic) and AFib. I have it, well almost, all of it. I also had 2 ablations. The surgeries were not bad. I still travel and really have no restrictions. I had all this done within a year at 51 years old. Send much wellness your away. It's an easy surgery. Just a little scary but if it prolongs life it's worth it. Just my thoughts,