Hi all. I am new here and my research led me to this site. I am 54 years old and was diagnosed with heart failure a couple of months ago. My EF at the time of the diagnosis was. 20%. It has not gotten better after months of medication; it is now 18%. I have no family history of heart disease; I am the first. What i had before the diagnosis was a cold that wouldn't go away for weeks after two bouts with the corona virus. I was also experiencing shortness of breath and a bit tiredness. My doctor cannot point to the cause given my family history and healthy lifestyle. Given that my EF is trending backwards after four months of medication, he has recommended that I do an ICD implant with three leads. I am scared. I have three children and a husband. I don't know how my life will be affected by this, if any. The surgery is scheduled next week. I don't know if I've thoroughly done my research but I am scared for me and my family. So I am turning here for anyone with same or similar experience for any thoughts. Thank you
Slated for ICD implant in one week - British Heart Fou...
Slated for ICD implant in one week
By no means an expert or anything close, but have they discussed the possibility that the low ejection fraction was caused by the coronavirus which means it might be temporary and not heart disease per say.
In any event, before making important medical decisions, like this ICD implant, I always like getting a second medical opinion. And that would be specialist, in your case might be one opinion from a cardiologist, specializing in heart failure, and another opinion from an infectious disease specialist.
Jim
Thank you so very much. Like you, I thought that the bouts with corona virus might be the cause and asked, initially, to put off the ICD implant for the past couple of months with the hopes of seeing an improvement with medications. However, my EF is regressing. I do plan on getting a second opinion this week. O found a specialist that will fit me in for a consult before the scheduled surgery.
Hey I'm a 37 year old mum of two. I was diagnosed with dilated cardiomyopathy 3 years ago and I had an EF of 15% was a very scary time. I had 2 weeks in the cardiac care unit and after that I had 6 monthly visits to the transplant team. I had an ICD fitted the same year as my diagnosis. I am thankful for my ICD it has not fired so far but has help with dangerous heart rates. 3 years on and a lot of medication tweaking my EF is now 34%. They don't no what has caused my heart issue either as no history and I have a healthy lifestyle minus the odd but if chocolate. I'm happy to answer and questions, good luck xx
Certainly comforting to hear. Thank you! I am still trying to wrap my head the sudden change on my health. Certainly happy to hear about your improvement. Best wishes
I can identify with you in terms of anxiety, had my implant a year ago and it was painless and took less than an hour. Never looked back since, the wound healed after 7-10 days.
You will be fine
I've been in a similar position. My ef recovered. You say yours has not got better. How do you know? Have you had it remeasured? When? My ef recovery took 3 months but I was on medication. E.g. forxiga, ramipril, eplerenon, bisoprolol. I also got a blood clot but that was dealt with using blood thinners.
My advice is, get the ef remeasured. Ensure you take your medication to the letter. Upon improvement, start rehab. I also had a genetic test which might be something to consider. Not sure the nhs covers that though. With baby steps you can do it. Be positive.
Did you have a heart mri scan? That is the gold standard for diagnosing such issues. My cause was myocarditis. The mri scan can identify where in the heart there is damage and what kind of damage there is which can direct doctors towards a better diagnosis. Mine showed speckled not stretched scarring which is less severe.
Regarding the implant, I've had a loop recorder fitted. It was nothing to worry about. I have the plaster on my chest now. All done in about 45mins. The icd might be a little more involved. Look after yourself and eat the best food you can to give you a chance of recovery.
We are rooting for you here. Be strong and you will be strong again. I was where you were, but I've recovered now to at least 49%. These things can sometimes take even 1 year.
I have been on meds since being diagnosed in February this year. I also had a short stint in the hospital and did rehab. Initially, my EF was 20. Three months in, it went to 29. This past Thursday, it came down to 18. I had them do another echo. Same results. I have not had the MRI scan. I am seeing another cardiologist the same day as the pre-op consult for a second opinion. I am happy to read yours and others stories on this forum. Thank you
Hi. I developed severe heart failure, EF 24% after catching Covid in Dec 21. Diagnosed with dilated cardiomyopathy. After all usual medications I didn’t really see any significant improvements until I had ICD-P fitted in May 23. Recently had another ECG. EF 40% and classed as moderate to mild heart failure. I was also very nervous but my life has been transformed. I’m back to swimming 3 times a week and have lost over half of the 4 stone I gained after my initial diagnosis and I’m back to the confident happy person I was before Covid.
I truly hope the same can happen for you.
I’m rooting for you as will all the other members of the forum, many of whom could tell a similar success story.
I thank you very much. Truly inspiring
Hello Husby. I had an ICD implanted when I was 37, and had all the anxieties that you do. 3 years later, I hardly notice it is there. After the initial recovery, life goes back to normal very quickly. You’ll feel much better when your heart is being helped by the device.
If you find your anxieties are hampering your daily life, please speak to a counsellor to talk them through.
I know how you feel. My experience was almost exactly the same. A chest infection triggered the investigation, and I was diagnosed with HF and an EF of 20%. Medication produced only a slight improvement, and I was fitted with a 3-lead device 5 years ago.
After a few months my EF was 60%, the cardiologist discharged me, and I am just back from a Lake District holiday. I can't do all the things I used to, but I am 20 years older than you, with an arthritic hip.
If you are offered a cardio rehab course, I would recommend taking it.
Thank you very much. I did about two months of rehab after a short period of hospitalization. I still do walk. Notwithstanding, as stated already, my EF regressed. I am lifted by yours and others' stories on this forum. Cheers!
Hi Husby, I had a similar diagnosis over 8 years ago with an EF of 18. I was started on medication and had an ICD fitted 2 months after diagnosis. I was led to believe that this was more of a safety measure. There followed a long period optimising the medication. The ICD was particularly useful in maintaining a minimal pulse rate and controlled high rates. It was essential when 3 years after fitting it also acted as a defibrillator. I was surprised when this happened as I was not feeling particularly bad at the time. With time my EF and heart progressively improved considerably.
Needless to say I would be in favour of having the ICD if it has been recommended by your cardiologist. Good luck for the future.
Thanks so much. Very inspiring indeed
ICD surgery is a very easy procedure, done under light sedation. The only thing that can be bothersome is not being able to lift your arm up above your shoulder for a few weeks. It will also give you peace of mind knowing it can save your life incase of a cardiac arrest. I have had a CRT-D [3 wire] for a little over 10 years, and had my 1st battery change last November, which was also a easy procedure. You got this!
Having an ICD is like your insurance policy hopefully you'll never need it but if you do it will save your life. The op is quite minor but you'll be sore for a while My ICD has kicked in twice and I'm still alive
You'll be fine good luck
I thank you very much
ICD/Defibrillator implant imminent.
what is right?
HF and scared 
One week post my Heart Attack
Better diagnosis??
