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Getting ICD for Heart failure - how worried should I be?

sonia_66
0 Recommendations

Does anyone else have heart failure? I have been diagnosed and have fears of reaching end-stage heart failure. My medical history includes TIA 1999. History of palpitations since then also. Hypertension. Left ejection fraction of 20-39%. An apical aneurysm, severe left ventricle systolic dysfunction. Pulmonary venous congestion. I am currently experiencing shortness of breath, sore ankles due to fluid build-up. I get some relief from angina medication. I am on heart failure medications too. Any advise, tips or suggestions about what I should do and shouldn't do would be great. I am 43 years old. I am not overweight. No family history of heart disease or hypertension.

Explore topics in this discussion:

Exercise Heart disease Heart failure Surgery Atrial fibrillation Sudden cardiac arrest Cardiomyopathy Anxiety Angina Hypertension Altace Coreg Pacemaker Heart attack Stress

12 replies

maureengraz

My husband received a biventricular pacemaker/ICD for heart failure in July of this year. (He previously had a sudden cardiac arrest caused by a massive heart attack in February) His EF was 10-15%. Since receiving the ICD and with his medications his EF is now about 25% and he is doing quite well. He is working and exercising with no Shortness of breath or fluid buildup at all.
I would say these devices are very effective in preventing the progression of heart failure...I know of many who live for decades with very active lives after receiving these devices.
Also, watching your diet(lowsalt,low fat) is so important...
When are you getting your ICD?

sonia_66

Thanks Maureen for the reply. I am on the waiting list which is about 3 weeks away, but I like to know besides the incision of the collar bone, is there any other part of the body that gets cut open? I watched a procedure on YouTube (which probably wasn't a very good idea) and it looked really bad. I want a general, do they do that? I suffer from irregular heart beat/ectopics daily and out of control palpitations which require hospitalisation, will this trigger an electric shock from the ICD? That's another concern, I don't want to walk around all day in fear of being constantly shocked. I'm happy to hear that your husband's ejection fraction improved!! I'm so scared and don't see any other choice to this matter.

bobcapuano

Hi Sonia,

I have had heart failure since 1995 with an EF of 15% for that entire time. I had an SCA in 2003 and an ICD was implanted. It was upgraded to a bi-vent pacemaker last December. I have had a total of 12 shocks, but five have been in the last six weeks alone. I know the anxiety of waiting for the next one, but I keep telling myself that it is better than the alternative. In the more than six years since my first ICD and shock, I have enjoyed a lot of life that I did not enjoy before. I have played golf, taken vacations and just tried to enjoy every day like the bonus that it is. It sounds simple but it is the only way I can survive. Good luck.

Bob

Tunafish1130

Hi I write for my son who has no computer. He is 52 years old had a major heart attack with severe heart damage in 2005.He is fit as anyone can be.It has been suggested that he have a ICD. Here is my question. On Wednesday he had a stress test and his EF was 17% on Friday after a day of hard work he rode his bicycle for about 30 miles up hills and down with zero problems. He cannot get his head around those two events which would seem to be contradictory. One moment he thinks ok I need the ICD according to my EF and next moment he thinks if I can be that physical without any discomfort do I? Any thoughts would be greatly apprciated and would also help Mom to give the best advice.
Thank You So Much
Charlene Mecer
spareroom208@verizon.net

maureengraz

Tunafish1130- With an ef that low your son is at risk for sudden cardiac arrest, that is why it is recommended he receive an ICD.
My husband has an ef of 25% and is also able to exercise moderately with no problems. I agree that it is amazing that they have such a high exercise tolerance with ef's that low. I like to think it's divine intervention :-)

sonia_66

Could you please explain what a biventricular pacemaker is? Is that required when the ICD is not efficient enough on its own? Is that when both right and left heart function becomes dysfunctional? I work in Nuclear Medicine in a Hospital where ejection fraction is measured through a gated blood pool scan. I haven't had this test, but apparently it's the best to measure an ejection fraction. I went from <59% in 1999, to 40% in 1999. 20-39% since 2005. Once the ICD is planted, do heart failure medications still continue? If heart function keeps decreasing won't this eventually lead to end-stage heart failure requiring transplant with or without the ICD. As I also have ectopic beats, my cardiologist is also suggesting cardiac ablation as an addition to ICD. If I just stay on heart failure medications and don't have an ICD or cardiac ablation, will medication alone repair damage? Sorry all my questions, I just am so confused and don't know what to do.

Rhansen1

I know how you feel. I was diagnosed with Heart Failure just over a year ago and had my existing pacemaker replaced with this ICD. No it has not been easy. The hardest part in my opinion is the "isolated feeling" you can get time to time. I owe my life to this device and fortunate to have been diagnosed before it was to late.

cindyinohio

I can understand how scared you are at this time. While I can answer many of your questions having been through heart failure diagnosis, and having asked them myself, I am instead going to tell you that the best source of up to date information to answer these questions is your cardiologist.

If the one you have is not answering your questions sufficiently, then change doctors. Write them down when you have an office visit and speak up to make sure they all get explained to you to your satisfaction.

What I can say in that my recent ICD implant procedure did not hurt at all during the operation. On the other hand, I am glad I saw no video of such ahead of time. Like the saying goes, no one should see sausage or hotdogs being made, otherwise you will never enjoy eating them again. I do not believe a general anesthetic is needed, generals have more risk associated with them anyway.

Since the ICD implant, I have experienced mild to moderate discomfort and some sensations around the site, such as tightness, muscle pulling feelings, tenderness, heaviness of the implant, etc. These are normal for the healing process. And a few hours here and there feeling sorry for myself, I will admit, and having fears about the unknowns ahead.

As many people on this site have mentioned, I think the most difficult part of the process and the disease is the part in your head, coming to grips with ones mortality, thoughts that many people without such a serious chronic illness like heart disease, can often push out of their minds. The ICD is a reminder of that, so your brain/mind needs to adjust to your new situation. And the idea of a machine inside of you. I also think that seeing a therapist is helpful. As many people get this diagnosis at mid life, for me anyway, the ICD/heartfailure issues have blended a bit with the midlife crisis type issues, i.e. am I spending my days and my life in the ways I want to, should I re-evaluate, etc.?

Twndd

Sonia 66

I don't know all of your medical history. Here's a little of mine. I am 55 yrs. old with Dilated Cardiomyopathy. My EF was 10 to start with almost 9 yrs. ago. Today it is 30. Lost weight, exercised when I could and took Coreg to increase the ejection fraction. Take water pills for heart failure (torsemide) 20 mgs. Altace for my BP. They wanted me to have an ICD implanted with one lead. University of PA has 5 labs where they perform the procedure. my insurance will only pay for a 24 hr. period. Area numbed and sedative given for procedure. Takes about 2 to 3 hrs. Will not help EF. Insurance companies will now pay even if you haven't had a heart attack (I haven't) and your EF is 30 or below. Cost of ICD depending on model $100,000 and will need to be replaced in 5 - 7 years. Medtronics have had several recalls which means replace whole unit. Not sure who pays for that. I have done extensive research on this. Have decided for now I will take my chances as I have not had an SCAs.

Not sure if this helps or not but I have been researching my disease since day one. Knowledge is power and most drs. don't like that.

Keep in touch and be proactive.

Donna

cindyinohio

In cases where a biventricular type of ICD is used, also called dual chamber, some people who have bundle branch block or other issues wherein the two ventricles are not well coordinated in their function, this type of ICD can often increase EF, as the ventricular function is altered by the device such that they beat more efficiently together. Sometimes the poor coordination from BBB or other has led to low EF, if so increasing the coordination can improve it. This does not occur in all such patients. This type of ICD as I understand it has three leads, two of which are in each ventricle, the third in left atria. I would investigate which type is recommended for you. From what I understant the type with just one lead does not distinguish well between abnormal heart beat/arrythmia, that comes from atria vs. ventricle. It is usually not needed to control atrial fibrillation with an all out shock, but if the device cannot tell one from the other, then sometimes, from what I understand, you may experience the all out shock when it was not really needed. I am not a doctor so please go to yours for more complete correct info. I got a 2 lead icd on Oct. 1 and am healing quite well, I have not had an SCA but I was scared of having one brought on by heart failure. Also scared of possibly being left with brain injury afterwards. There is just some adjustment period, but it does become part of the new you. Sometime in the future, you will probably experience something with your heart, that shifts your mindset from not wanting one to gettng one. Or someone you know or in the news, etc will die of an SCA. That is what happened to me, and I have no regrets, although I am still quite early in the whole process.

oleblueize

I have dilated cardiomyopathy, CHF, Sudden Cardiac Death, Arrythemia and had an ICD-R (3 leads) put in Feb 2, 09. My EF was at 25% when I had surgery and today I am at 50% EF. I am still on meds but the pacemaker part has helped.
The surgery was not difficult. I was knocked out for it. Overnight in the hospital. One incision under the left collarbone is all I have. The hardest part was not raising my left arm for 6 weeks and not carrying anything more than 2 lbs with my left arm.
Good luck and keep in touch.

Cathy

sonia_66

Thanks for the replies, they are very helpful. I'm still in discussion with my cardiologist about whether cardiac ablation or ICD is the next step. She sent me off for a cardiac gated blood pool scan (MUGA) which measures exactly how much blood is ejected from the left ventricle. Mine at present shows 48.9% which is amazing compared to an ultrasound just in August which showed 20-39%. I am though, still concerned about the large apical aneuryms on the left part of the heart, which is the result of severe hypokinesis and can't be removed. I see her again on 17th December and let's hope she only brings good news. Is it possible to have the ef increase with medications in such a short time, how accurate is the MUGA when I now have new symptoms of heart failure, like swallon ankles and chest xray revealed pulmonary venous congestion in October?

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