Postpartum cardiomyopathy now looking at Ablation & ICD
23 years ago I had my last baby. 2 1/2 months after I had him I started having shortness of breath and was unable to sleep at night. I finally went to the doctor, they hooked me up to an EKG and asked if I had problems with skipped or extra heartbeats and I said no. They sent me to the hospital for X-rays and blood work. I was diagnosed with postpartum cardiomyopathy and was placed on Lisinopril, Carvedilol and an aspirin daily. My Ejection Fraction (EF) has held for 23 years at 46-47.
In 2023 I self diagnosed myself with vertigo and later in 2023 my cardiologist and I had a discussion about my dizzy spell and he agreed that it didn't sound to him like a heart issue.
In late summer of 2024 I was having low blood pressure and started again with the random dizzy spells I made an appointment late 2024 and the doctors office called the day of my appointment and cancelled due to doctor sickness. They said they would reschedule but never did - I started feeling better.
May of 2025 I started having random dizzy spells where I was having to hold onto something because I felt as if I was going to collapse. June of 2025 I made an appointment with my MD and he order the ZIO halter monitor for 14 days and an Echocardiogram. The Echo came back at with a EF of 39 and the ZIO halter showed that I had 2900 episodes of different irregular rhythms. One of concern was Ventricular Tachycardia that lasted more then 50 seconds. I was referred back to my cardiologist and he said that I needed to see the Electrophysiology & Cardiology doctor. I saw Dr Saliaris on the 9th of July and he recommended an Ablation and told us that I was a candidate for a defibrillator. He went on to tell me that I need to have a Cardiac MRI before the ablation and that is scheduled for the middle of October of 2025.
I completed my MRI on beginning of August 2025 and it showed a EF of 28-29. Now praying/waiting for a call for an opening earlier then the middle of October.
Has anyone had something similar? What was the outcome? I know there are lots of people who have a defibrillator can you tell me your experience?
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@wyograndmaof6
Your doctors and you did the right thing seeing a Electrophysiologist (EP). They are electrical experts of heart issues. With an ejection fraction (EF) of 28-29 do you also have access to a heart failure cardiologist?
I was diagnosed with cardiomyopathy back in 2001. My EF was going down and when hit 30 my local cardiologist stated that was the level a ICD was recommended.
I went to Mayo Clinic for a second opinion and saw a EP and Heart Failure (HF) cardilogist. I was advised to get a ICD/Pacemaker as the ICD would take care of irregular heart beats and the pacemaker would help with electrical signals of heart. My HF cardiologist put me on Entresto and Carvididol. I was already on Carvididol from local cardilogist. My HFD double the dose. The Entresto is a specific drug to treat heart failure.
My EF had steadly gone down until I had the ICD/Pacemaker put in and put on the new medications. With the new treatments and device implant it (EF) stablized at around 25 and has stayed that way for over 10 years.
A defibrillator is a ICD. It will monitor your heart rympthm. When it senses tachacardia our high heart rate it will try to pulse you out and if does not work it will shock your heart back into rympthm.
When your EF gets that low you have HF. It does not mean heart has failed. It just means is not pumping the normal amount of blood.
What can I say about having a ICD. I would not be typing this post if I did not have one. It has brought me out of tachacardia 6-7 times. What my EP said to me is to think of a ICD as your own EMS in your chest waiting to help you.
The damage to heart and surviving tachacardia is based on getting treated ASAP and getting heart back to normal rympthm. Thus if you do not have an ICD you have to wait until EMS shows and can shock you back into rympthm. That amount of time that takes is crucial to survival and prevening damage due to lack of blood flow.
Now some inspiration. My EF has remained steady for over 10 years. I execise 6 days a week and do Sprint Triathlons. When I was put on Entresto and Carvididol my heart stopped getting weaker. My EP and HFD work together. When I have had a shock to correct arrymthymia they look at cause. It can be electrolytes, medication changes, changes to pacemaker programming.
With that I have not had a ICD shock in several years now. But I know my ICD is there if I do need it and the statistics for a ICD correcting an arrymia is almost 100%. Now that is arrymias not heart attacks which is a toally different subject.
I had NSVT ( 2 episodes of 180 beats per minute for 4 seconds only). I’ve never fainted. Regardless, my EP stated that this was life threatening and recommended that I get a defibrillator asap. He worked me in 5 days later with Memorial Day weekend causing that 5 day wait. My ejection fraction is normal with no compromised cardiac blood flow. All testing normal. Arrhythmia only, due to a scar from a previous virus.
Note that excessive PVC’s or VT will put stresses on your heart that result in reduced ejection fraction and eventual heart failure- not to mention the worst case possible scenario of SCD - sudden cardiac death. The SCD was why my EP treated my case as though it were an emergency. And now I have a 911 emergency crew sitting near my collarbone and am happy to have it. There are absolutely no ill effects or restrictions. I am 77. BTW, it is outpatient. I entered the hospital at 6am and was on my way home by noon the same day. The bill from Hospital of the University of PA to Medicare was $662,000! Of course, they won’t get paid that much but in case anyone wonders, one of the reasons why Medicare is slated to implode in 9 years……
Are you close to a major teaching hospital with a great reputation? First, enlist your PCP to help in getting an EP appointment asap. If no luck, or if you’re not close to a premier hospital, your best approach:
You can call Cleveland Clinic’s 800 number and make a FaceTime appointment. They make it easy and possible to quickly schedule surgery, if warranted, after a EP sees your records and talks to you. It’s so simple to navigate and they are among the best in the world. Google “Cleveland Clinic appointments, cardiology”, and go from there. I had a mitral valve repair there 20 years ago and it is a hospital that amazes with its excellence. I would imagine Mayo is the same.
Good luck. Be assertive. Don’t take no for an answer or be willing to wait for weeks or months for an appointment locally. Being your own best advocate will serve you well.
Best of luck to you.
I always have luck snagging an appointment due to a cancellation. It requires calling every day. It works well if your doctor’s office works that way.