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Heart failure low ejection fraction, suggestions on defibrillator
I had a heart attack in Southeast Asia in 2017. The hospital experience was so weird to me (not a language problem) that I left and got the first flight back to the US, part of it spent crawling through Narita airport. I did make it back, and I spent a month in the hospital there. Eventually a defibrillator was suggested. I had the surgery and spent another month in the US before returning to SE Asia. After my return, the defibrillator activated three different times. The activation point was set at 160.
While in the US the hospital enrolled me in their rehab program, three days a week for 45 minutes of treadmill and elliptical machines and some weight lifting. We were hooked up to monitors. I bought a cheap treadmill and some weights when I got back and continued exercising. My cardiologist attributes this work, which I do not enjoy, to the longer than 2-5 year survival that is usually predicted with heart failure patients. After 2 years I was able to return to most physical activities except for inline skating. For some reason my balance was off, so I gave it up. I continued with my exercises and added bicycling and swimming. However, I began to feel like I was losing ground quickly. When the 2 local hospitals could not find anything other than what had already been diagnosed, and I was feeling worse, I began the trek back to the US. I barely made it. A flight was cancelled and I had to take a 12 hour train ride to get to my hospital. A driver and a very helpful railroad employee carried me to the taxi. The cab driver found a wheelchair and rolled me into the hospital. I passed out in the wheelchair. I was diagnosed with sepsis. My oxygen level had dropped to 81, so I was given multiple transfusions. After several days the oxygen improved and I was moved to a room.
The source of the infection was the defibrillator. The surgeon who removed it said it was covered with staph bacteria as moss would cover a tree. I opted not to have it replaced as my heart was more stable after 2 years of exercise.
For two months, antibiotics were administered via TIC lines. I recovered from sepsis just as the covid pandemic was reaching a peak. I was able to return to SE Asia the day before entry to the country where I live most of each year was closed to visitors. Afterward, for several months, only citizens could return.
I have written this to inform others with heart failure of several things I have discovered. I believe for most patients, it is imperative to start whatever exercise program you can sustain. My cardiologists in the US told me it's probably the only reason I've lived 8 years instead of the 2-5 usually estimated for heart failure patients. The disease is progressive. My ejection fraction at this point has dropped to 35, but I still exercise six days a week for 45 minutes to an hour. My average heart rate during exercise is 122 (buy a cheap watch that will give you this information). I feel this is important as my organs are fed every day. My kidneys and other organs are still in reasonably good shape for someone on the cusp of 80 years old with a bad heart.
The second point is that if you don't feel like you are getting what you need in a hospital, leave, if you can. The first hospital I went to did not want to release me even though we had paid the bill in full. If you think this is a liability issue, it is not. You cannot sue a doctor or hospital here. So they were off the hook.
The last warning to people who are sick away from home, especially in the Third World, is to get back to your home country. It was not until I returned that sepsis was diagnosed. I was told when I woke up in ICU that I arrived with a less than 50% chance of living. Two of my relatives, who are doctors, concurred.
Heart failure is progressive, and I am definitely aware of that as I feel a bit dizzy and short of breath on occasion, which was not a problem 2 years ago. I can no longer trot with my dogs more than a few hundred meters. They are getting old too and don't seem to mind. My systolic blood pressure drops to 80 occasionally, but a little salt usually pushes it up over 90 again. It's the only salt that I eat. 90-95 systolic is the new normal for me.
I wrote this with hopes that someone in a similar situation might find something that will help them. But if I had only one word of advice, exercise. Try to make sure that the rest of your organs get the nutrition and oxygen they need to remain viable. If I’m wrong about this, I’m sure someone will let me know.
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@william66
I was diagnosed with heart failure (HF) in 2001. That is almost 25 years ago.
Heart Failure does not mean your heart has failed it just means not pumping the normal amount of blood. My Electrophysilogist (EP) and my heart failure (HF) doctor said to me that when a patient reaches a 30 EF the norm is to have a ICD put in as irregular heart beats and tacyacarida becomes more of risk. I also had a pacemaker implanted per my EP to keep my heart paced at 70 bpm as medications brought it down very low.
My EF went down to 25 and has been there for over 10 years. I have a ICD/pacemaker implanted in 2006. In 2006 I was put on Carvididol and eventually Entresto. My EF remain stable from that point on and has not decreased.
I am an avid exerciser. Before my diagnosis, during, and after. I was told too that my body was able to compensate for reduced blood flow due to being an avid exerciser for my entire life. The medications I take really stopped the progression of HF. Not only am I an avid exerciser I have been doing Sprint Triathons for almost 10 years.
Not sure who gave you informatino on life expectancy for those with HF. With medications, exercise, and diet many many people can live a long life with a quality of life quite high. The reason a person developes HF can determine their life expectancy. Those that HF was caused by heart attacks is very different from those like me that had a left bundle branch caused by a virus that caused scar tissue in my heart.
Exercise is good but must be done with coordination and approval of your cardiologist and if you have acces to one a heart failure doctor. For those reading this post I strongly recommend it you have been diagnosed with HF and have access to a HF cardilogist specialist to do so. I see a HF doctor at Mayo as well as a EP for my implanted ICD/Pacemaker who work as a team to do what is best for me.
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2 Reactions@jc76 I appreciate the details of personal experiences shared in these written statements. I have recently been directed by my Cardiovascular Doctor to research the use of a Defibrillator potential use on my chest. My heart has been diagnosed this year at 25% ER. Will continue the effort to understand all that I can find regarding my effort to control my heart issues. Thank you, Robert
@bbnx2010
I have heart failure with 30% EF. After a heart attack in 2018, I was advised to have a defibrillator inserted. It went off maybe three times over a little over a year. But it was also infected with staph bacteria. When it was removed, the surgeon remarked that it was covered in staph like moss on a tree. Did I want another one? Nope.
I was given a 2-5 year estimate of continued life after the heart attack. But a cardiologist, and friend, told me to buy a treadmill (my least favorit exercise machine but at least done in a/c). It's very hot here. Outdoor exercise is only possible maybe a month or so a year. I miss my bike and skates. I've been using the mill for 10 years now, so I guess it helped. I worked up to full slope and 7.0 km/hr, done every other day, alternating with light weights and other exercises. I had my heart attack doing pushups, which I still do, but only 50 on hands and 45 on stands. Not perfect form, but my back stays straight and my elbows bend 90%. I stop if I feel anything unusal. I aslo do burpees and side straddle hops (what they were called 60 years ago, I have no idea now) to get my heart rate up. I have to do the same with the treadmill to get the aerobic effect, which I attribute to my being alive. As for the defibrillator, it did activevate three times before I had it removed, but now my heart rate is so low (usually 45-60 resting), that it would be useless and possibly dangerous considering previous experience. I was not far from checking out when I traveled 10,000 miles and 40 hours to reach my hospital. O2 was in the 70's, taxi driver carried me in, couldn't find a wheelchair. Recovery a week in intesive with a lot of transfusions, another three weeks in the hospital, then a month at a friend's house with an array of PICC lines stuck in my arm. I know defibrillators save lives, and may have saved mine a few times, but I don't know that I would ever want another one.
One can buy a digital BP monitor for less than $20 that will give you heart rate as well and store the results. No need for a cheap watch.
I do not understand your fascination with SE Asia. Well, as a tourist, yes, but for medical care?!?!? For anything more complicated than an ingrown toenail, I would be on the first plane to the USA. And not just anywhere in the USA... NYC, LA, or some other city with a well respected hospital. The first tip-off was their estimate of your survival rate. 2-5 years???? Maybe in THEIR hospital.
Your description of your trips back to the USA are terrifying. They bring me to make a recommendation of my own that might or might not apply to you: Get regular checkups to avoid, or at least be better prepared for, emergency situations.
Not that it's foolproof. I noticed a sharp increase in fatigue in June of 2025. What followed were a series of tests that pointed to a heart block. Alas, the Advent Health cardiologist in Orlando that I went to dismissed them all as "test errors" and proceeded to prescribe a double starting dose of Nebivolol to control my BP which sometimes hit 170 - the only thing he seemed to care about. Nebivolol works by creating a heart block...
Which brings me to another suggestion: NEVER trust your doctor completely. Do your own research. Investigate every symptom, every treatment, every prescription. It's easy now on the internet. Gone are the days when our childhood admonition to "trust the doctor" holds up.
In June 2026, my heart block was severe enough that my heart rate was 30. Google said I was dead and gave me a list of nearby funeral parlors. (dark humor) Off to the ER. A temporary pacemaker was implanted that afternoon. A permanent one 3 days later, after they were certain that stopping the Nebivolol wouldn't restore my heart rate.
SIDE NOTE, SORTA: The Advent Health surgeon who implanted the pacemaker arrived four hours late for the surgery. I lay on a table in the OR while everyone wondered where he was. The pre-op staff had gone home, so eventually they wheeled me to post-op while we waited until he finally showed up. Then back to the OR. Just before turning on the anesthetic drip, he asked me which pacemaker I wanted. ??? Old style or new style? uhhhh.. new sounded better. The nurses changed preparations while the drip started. ...Lights out...
SIDE NOTE #2: The surgery resulted in an acute pulmonary embolism (blood clot) and another trip the ER three weeks later for an emergency embolectomy. I had called every doctor I had seen at Advent Health to report my very low BP readings, but the only reply from Advent Health was to cut back the BP meds and "Have a blessed day".
SIDE NOTE #3: A month later, I experienced some symptoms similar to the embolism. Not really severe, but we weren't taking chance. We went to a DIFFERENT hospital emergency room to avoid Advent Health. They determined that I had contracted COVID, probably while in the Advent Health hospital since I had gone nowhere during my recovery from the two surgeries.
MESSAGE TO SELF: I read those test results. I even called the cardiologist and questioned him about them. I trusted the doctor. MISTAKE. I did NOT dig into how Nebivolol worked. ANOTHER MISTAKE. That cardiologist never even came to the hospital while I was in the ICU, either time.
So now I have a new pacemaker, a new cardiologist, and go to different hospital facilities for health care. My days may not be blessed, but they are slowly getting better...
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2 Reactions@william66 You have posted many times in the past, you live in SE Asia, I believe that I suggested that you seek medical health for your situation elsewhere. Your health is very important to you and those who care about you - even us - supportive strangers!
You wrote "I traveled 10,000 miles and 40 hours to reach my hospital. " Please elaborate where you went? A notable heart facility is just about the only place to receive top notch care.
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2 Reactions@bbnx2010 Welcome to Mayo Clinic Connect, a forum where you can meet others with similar health issues. It is not a place to get professional medical advice or care. Your statement "Will continue the effort to understand all that I can find regarding my effort to control my heart issues." is exactly the advice we give to people. Knowing as much as possible allows you to understand your doctor's explanations, formulate questions and be a part of your care team. You have a great attitude.
Here is a link to help you in your quest: https://www.mayoclinic.org/tests-procedures/implantable-cardioverter-defibrillators/about/pac-20384692
I have an ICD, Buddy and I became an item after a septal myectomy; I had developed electrical issues resulting in arrythmias. I am paced from the pacemaker function, and I hope I do not ever need the defibrillator function.
Have you been diagnosed with a particular heart "misfunction?" I had HCM (hypertrophic myopathy). It's truly amazing that there are so many issues that can affect hearts. It's important to be aligned with a cardiologist well trained in your personal ailment.
When will your next appointment take place? How will an ICD benefit your particular situation?
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2 ReactionsThe comment, "NEVER trust your doctor completely," struck me with caution. Least not forget cardiologist have years of training and hopefully an equal amount of experience. However, know your body because they don't. A year ago I was measure with 38% EF after my cardiac arrest. It was not an attack and I was diagnosed with no coronary artery disease. Doctors are expected to follow the 'protocol' in a one-size fits all treatment plan. I have an ICD. I refused to take a beta-blocker, with a resting heart rate of 60 and at 68yr, vo2max of 40. Physicians are naturally skeptical of anyone trying life style changes -- but that's on you!
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1 Reaction@dynamited You stated "Least not forget cardiologist have years of training and hopefully an equal amount of experience. However, know your body because they don't." Well said!
Let us all remember that it's the Art of Medicine, not an exact science. You also stated, "Doctors are expected to follow the 'protocol' in a one-size fits all treatment plan." Very true - until something comes up and that protocol does not fit well with an individual. I think protocol is a starting point and if it does not work, we all certainly hope a Plan B will solve the issue. The protocol needs to change for individual situations. Yes, physicians are skeptical of change.
Case in point: A couple of weeks after my septal myectomy, July. 2022, I developed dizziness and giddiness. Complained often and loudly. No one could figure it out. Scary. Mid-October - I had a syncope. Wore a Halter monitor for a month. Waiting for results. Day before Thanksgiving, another syncope (broke my ocular bone). Friday, day after Thanksgiving, results of Halter - I am having many arrythmias, an electrical problem. New companion - ICD Monday after Thanksgiving.
Told my cardiologist that we could have all saved a lot of grief if I was fitted with a Halter when the dizziness and giddiness persisted for a couple of weeks. "We have to follow protocol." I hope this was a lesson in dizziness and giddiness for my doctor and his colleagues.
About those "protocols": Unrelated to pacemakers but a clear example, you can still find online description of the "protocol" many doctors adhere to regarding the PSA blood test for prostate cancer.
According to the "protocol", the PSA test should not be done after age 70. Why? ***Because even if they have cancer, statistically they will die of other causes first.***
The rationale behind this is that PSA is often elevated from other causes resulting in a pointless indication of possible cancer. So skip the test and avoid the worry and any follow up testing because the patient will be dead anyway. Nice.
Never mind that there is a simple "free PSA" blood test that determines if a elevated PSA is actually elevated to fight a cancer. Often done together, the combined PSA and free PSA tests are the most accurate diagnostic procedure available, nearly 100% accurate for low PSA readings in the critical "borderline" range.
Moreover, treatment for prostate cancer has improved significantly, and it is NOT a death sentence. But the "protocol" some doctors learned is old, and they haven't updated their knowledge.
Biden's last PSA test was at age 70. I'm guessing his doctors followed the "protocol".
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2 Reactions@walkinggirl
When I finally got access to my U.S. hospital's website, I discovered my diagnois was congestive heart failure, ejection fraction 30. Last time I had it checked it was about the same. I thought it would just keep getting lower until I croaked, but after nearly 10 years, I'm still here. Arythmia and bradycardia are constants. Due to the cost here as a non-citizen, I would probably need to return to the U.S. to get a pacemaker, which I don't care to do right now. Cremation is cheap here, and there is a roaster about 300 meters from me. They will take care of my dogs too when their time comes.
So my choice is to limp along with the slow and funky heartbeat. I took a 29km bike ride today. Heart rate avereaged 112 with a high of 124. I think my max is 140 if I did the math right. Garmin's doodads seem to disagree. Treadmill average is higher, around 120, but the high is about the same. Oddly, my heart rate will sometimes abruptly drop to 55-60 in the middle of treadmillling. I get off the machine and do jumping jacks, or whatever they are called now, to get my rate back up over 115 where it will do me some good. Other times it will stay in the 115-120 range witout futher intervention. I nearly always have to do the exercises starting out. I don't understand why it is so hard to elevate my heart rate on the treadmill, yet it is reachable achieveable doing jumping jacks. I asked my doctor here and got the thousand mile stare.
So I get along as I can. If I outlive my dogs, one refugee from the streets and another from a completely wild litter, I'll be happy to check out any time. They are house pets now, living inside in the a/c and eating well, and I want them to have that until their lives are over.
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