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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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@walkinggirl
I traveled from SE Asia to the central U.S., same doctors' group that my family has used for several generations, but it's a business of doctors now, which I find a little creepy after being cared for by doctors who were family members for most of my life.
Travel at 80 is a bit of a hassle, especially if I end up overnighting in China to save money. One leg of my last flight back was 16 hours, barnacle class, pretty wretched way to get around. So I hope I never have to return "home".
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1 Reaction@william66
Oops, I think I've been replying to something not intended for me.
I apologize.
@william66
I moved to a rural area in SE Asia as it is inexpensive to live here and the people I see every day are friendly and helpful.
I was a pilot and went to see my parents after being away for a month or so. My sainted mum had fallen head first into the Alzheimer's well. She was still abulatory but didn't have a clue who was looking back at her in the mirror. I am an only child, and Medicare does not pay squat for long term care for this type of thing, so I quit working to care for her and my dad. My mum lived another nine years (92) and my dad a few months longer (96), finally succumbing to his 4th bout of cancer over 35 years. Alzheimer's care is extremely expensive. Since I was no longer working, and also single, my parents' and my savings picked up the bills. After they were gone, most of my money was too. So I looked for a place I had traveled as a more affordable place to spend the rest of my life. The country I chose was one where I had spent time before and enjoyed myself while I was there. Like most of this part of the world, the heat was a challenge. Most of the people who live near me have no a/c. Fortunately I do. Only a month or so out of each year gives me a break from the heat. But that's coming up shortly and I will be able to spend more time outdoors.
I may be replying to someone else about this, but the watch I wear is to keep me aware of my heart rate. It hooks up to a chest band when I exercise and gives reasonably reliable readings. I try to get my heart rate over 115 for 45-50 minutes each day, and I can download the watch data into my laptop to let me know if I've met my goal. I do have a blood pressure tester as well and check my blood pressure several times a day. I recently started a new drug which has tanked my systolic and diastolic, 80-85 systolic and 50-55 diastolic, but my heart rate has been low for years now, 45-60, except when intentionally raising it when I exercise. My last EKG was pretty awful looking, but I feel as good as I guess someone with heart failure can expect to, and I have not had to quit many of the things I like to do. My leg balance seems a little off, so I quit inline skating. I had to do it at night to escape the heat, but with blinking lights strapped on a hockey stick to ward off a mowdown. I only had one close call and had the stick knocked out of my hand. The guy who hit me came back to see what he had hit, and he apologized and helped me pick up the lights that had been knocked off and get my stick working and visable again. Otherwise I would have been walkng the last 4 km. Nice guy.
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1 Reaction@william66 You seem to be leading your active best life and are comfortable with your choices! Do you speak and read the local language well? At 80 (I am the same age) you have seen much, done much and thought much. Yes, that was a long trip to the USA for medical care, you have been away a long time and may have been amazed at how things have changed from family-doctor-days. Here's an extra ((HUG)) as you continue on your journey to remain active and content where you are. Do check in to let us know how you are doing!