Mended Hearts Open Forum

  • 1.  EF at 30% with No Symptoms - Why a Defibrillator?

    Posted 06-29-2021 07:43
    Hello everyone,

    I hope that you all had an excellent weekend!

    First of all, I would like to thank all of you for taking the time to read through this and giving out your honest feedback. A small background.. I am 37 years old, male, a mountain biker, super active, work out, and ride 5-7 days a week. I eat very healthily as well.

    I was diagnosed with Chronic Systolic Heart Failure in 2019 and had no symptoms aside from high blood pressure. Also, I have a left bundle branch block. No one knows why my heart did this.

    After going on medication - Entresto, Spironolactone, Carvedilol and drastically changing my diet, I have been able to bring my EF from 20 to 40%. It then dropped to 30-35% where it has stayed consistent for the past 2 years. I just went to get my Echocardiogram last week and there was no change in my EF (still estimated at 30-35%). However, the swelling in my heart is almost completely gone and my LV cavity is now only mildly dilated. My heart wall thickness is now back to normal. I have no diastolic dysfunction. I don't have any symptoms. I exercise super hard and am very fit.

    They really want me to get a defibrillator. My question is, do I need it? My arteries are clear, no sign of a heart attack, no arrhythmias. Sometimes I get tired because of the drugs I'm on which is not that big of a deal. I know that they can put a defibrillator in me and pulse my heart to help with resynchronization and it may increase my EF, but I just don't really think it's a great idea. I just can't see it improving the quality of my life and I feel like this is being thrown at me as just a good idea.

    Thank you for your time. Any and all feedback would be greatly appreciated. ๐Ÿ™‚

    ~Mike

    ------------------------------
    Mike Lofgren
    OR
    ------------------------------


  • 2.  RE: EF at 30% with No Symptoms - Why a Defibrillator?

    Posted 06-29-2021 09:33
    Hi Mike,
    In 2017 I was diagnosed with CHF with my EF at 12%, like you I had no idea where this came from or how it happened. The doctors put me on Entresto 49/51 mg twice a day, Carvedilol 6.25 mg twice a day morning and night. I had no blockage, but I am Type 2 diabetic. I would go for my echocardiograms and each time my EF would be in the 40's which have held steady. Of course like you we have our good and bad day but we noticed them and adjust to the situation. There was only mention of a defibrillator if my heart did take to the medicine, and still no defibrillator thank God. 
    I would ask your cardiologist to maybe up your medicine because Entresto does have three dosage and maybe you need to be move up to the next dosage. Just till about three months ago they have pin pointed my CHF to Cardiac Amyloidosis, this disease causes the heart to stiffen because the body is producing a abnormal protein, and that protein attaches to the heart. You should have your doctor test you to see if you have this abnormal protein in your blood. I hope I was some help Mike it's been a journey for all us here but we will get through this together. 

    Charles Mazur 
    The Woodlands, TX





  • 3.  RE: EF at 30% with No Symptoms - Why a Defibrillator?

    Posted 07-01-2021 23:05
    Hi Charles,

    Thanks so much for replying to this thread. I am currently on the highest dose of Entresto and unfortunately, it does not seem like my EF wants to climb any more than it already has after two years. I am glad that they were able to catch that abnormal protein and hopefully they have been able to treat it. I really appreciate your response, Charles.

    ------------------------------
    Mike L.
    ------------------------------



  • 4.  RE: EF at 30% with No Symptoms - Why a Defibrillator?

    Posted 06-30-2021 07:29
    morning
    congratulations on taking such good care of yourself. the defibrillator relates to the bundle branch block you mentioned.ย  you're working with two problems. who knows why you but there are amazing tools today. keep your positive attitude
    best of luck,
    de

    ------------------------------
    Doris Edwards
    Retired RN
    Dublin, Ohio
    ------------------------------



  • 5.  RE: EF at 30% with No Symptoms - Why a Defibrillator?

    Posted 07-01-2021 08:25
    Mike - youโ€™ve been through a lot especially for someone your age. In an earlier response, Ralph states the specifics of dealing with heart failure and defibrillators quite succinctly. You mention that your arteries are clear and youโ€™re not sure you need a defibrillator. Your heart is basically two systems - plumbing (arteries) and electrical (heart rhythm). The defibrillator deals with the electrical system. Folks with low EFs are more likely to go into lethal arrhythmias i.e. sudden death (even with clear coronaries) and the defibrillator can save your life.

    Evidence has shown that defibrillators save lives for folks with low EFs. If you have sudden death in the hospital - there are trained professionals & equipment (crash cart with defibrillator) to bring you back but what if you are, say, on a long bike ride in the country or on camping trip with friends and family out in the woods. I don't want to scare you but want you to think about the realities.

    Iโ€™m a retired cardiac rehab nurse & have had patients of many ages had their lives saved by a defibrillator.

    Carol Loe

    Sent from my iPad.




  • 6.  RE: EF at 30% with No Symptoms - Why a Defibrillator?

    Posted 07-01-2021 23:33
    Hi Carol,

    Thanks for chiming in. It's been an interesting ride working to restore my health as best I can. I really appreciate you laying this out for me with your personal experiences and insight. The issue that I am most concerned about is being too weak to do the thing I love which is riding my bike. I have been fighting tooth and nail to stay as healthy as possible. You sharing your experiences means a lot and I really appreciate it :)

    ------------------------------
    Mike L.
    ------------------------------



  • 7.  RE: EF at 30% with No Symptoms - Why a Defibrillator?

    Posted 07-01-2021 23:11
    Hi Doris,

    Thank you for your reply. I definitely have learned a ton from this experience and have grown in ways I never thought possible. A blessing in disguise for sure :) I just want to make sure that I am gathering as much data as possible and your reply is very helpful. Thank you!

    ------------------------------
    Mike L.
    ------------------------------



  • 8.  RE: EF at 30% with No Symptoms - Why a Defibrillator?

    Posted 07-04-2021 07:17
    Please stay in touch. Mike

    ------------------------------
    Doris Edwards
    Retired RN
    Dublin, Ohio
    ------------------------------



  • 9.  RE: EF at 30% with No Symptoms - Why a Defibrillator?

    Posted 06-30-2021 14:06
    Mike, it's obvious that like most people you don't understand "defibrillators" their purpose and operation.

    When your heart is operating at 30% ejection fraction (EF) your organs are not getting oxygen enriched blood necessary to keep them alive. Eventually the organs begin to die. Your problem is further exacerbated by the fact you have LBBB (left bundle branch block) meaning the two ventricles are beating asynchronously reducing the force of ejection. Secondarily, it has been proven that people with a EF of 30% or less are prone to ventricular fibrillation and sudden cardiac arrest.

    Most assuredly they are recommending you get a CRT-D which stands for cardiac resynchronization therapy defibrillator, also referred to as a bi- ventricular defibrillator or 3 lead device. This device performs numerous functions. First it's a pacemaker and will synchronize your ventricle beats and may improve your EF. No guarantee but the majority do see improvement but it can also dekay further degrading of your EF. Second it can be programmed for ATP (anti-tachycardia pacing) this is so that if your heart starts to race out of control it will overdrive the beats then stop and the heart goes back into normal rhythm. Finally if you go into fibrillation it will shock your heart causing it to go back to a normal rhythm before cardiac arrest can occur.

    These things are real life savers. I'm on my third one in 15 years. Often forget I even have it and have been the recipient of it's life saving capabilities one more than one occasion. My beneficiaries are not too happy my life was extended but I'm thankful to have one. You don't feel the device operating unless you get what I lovingly refer to as a Jesus jolt ( it hits, you shout Jesus and it's over) but even that's no biggie.

    So, your choice but at least now you know the rest of the story. Good luck whatever you decide.

    ------------------------------
    Warren
    TucsonAZ
    ------------------------------



  • 10.  RE: EF at 30% with No Symptoms - Why a Defibrillator?

    Posted 07-02-2021 00:11
    Hi Ralph,

    Thank you so much for breaking this down for me. Because there are a couple of things going on with my heart, it can get pretty confusing at times. I know that there is a wealth of information out there, but there is also a lot of misinformation. I have discussed defibrillators with my cardiologist but I feel like I may have glazed some of it over as I have been so motivated to try and flip this thing upside down.

    I appreciate you bringing this information to the table in a format that is easy to understand. My aim is to preserve my health as much as possible and make an informed decision so that I can continue doing what I love for as long as possible.

    I particularly enjoyed your explanation of Jesus jolts. That definitely made my evening :)

    It sounds like as technology increases these things will become more programmable which I think is super fascinating. I wonder how long it will be until you can personally pull metrics from these devices.

    Cheers


    ------------------------------
    Mike L.
    ------------------------------