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.