Does anyone else have Heart Failure here?

kiteflyer105 · October 2023

IF you have heart failure and a low EF% (injection fraction percentage), can you tell me how you raised your EF % and got it back to normal? I have been taking all of my medicine.

I started at 24% then 3 months laterI was up to 25%. This was discouraging to be honest. I hope it eventually goes back up to normal levels.

Next, I am going to have an ICD placed in my body.

Thanks for the input.

loulee997 · October 2023

My mom has this---she has a pacemaker. Well, technically she is on her 4th pacemaker. She outlives them all.

It worked for her. Is her heart cured? No. Her quality of life has improved.

Good luck.

jennpen310 · October 2023

I recommend you start taking something called "heart miracle" they have it at vitamin shoppe its a supplement you drink. It may help you get back to normal. Also take magnesium. I am a firm believer in taking natural supplements instead of pharmaceuticals. You can continue your meds but it you see results little by little you can wean off them as you see yourself getting better.

kiteflyer105 · October 2023

Thank you both for your input. I appreciate it.

wm3796 · October 2023

Please put careful in taking various supplements when you have a serious medical condition like heart failure. Some of the supplements could interact with prescription drugs or alter blood chemistry levels and affect your heart, kidneys, etc which can be a serious problem in your condition.

kshama2001 · October 2023

jennpen310 wrote: »

I recommend you start taking something called "heart miracle" they have it at vitamin shoppe its a supplement you drink. It may help you get back to normal. Also take magnesium. I am a firm believer in taking natural supplements instead of pharmaceuticals. You can continue your meds but it you see results little by little you can wean off them as you see yourself getting better.

First off, anyone with a serious medical condition should run any supplements by their doctors.

I used to work for a supplement company. People should not waste their money on one product that contains dozens of ingredients. This formulation does contain CoQ10, which has been studied for heart conditions. However, the amount in this product - 35mg - is far lower than a clinical dose. This happens again and again by manufacturers who want to tout their "Proprietary blend."

This is basically a multi vitamin/multi mineral, with some trendy things like Green Tea extract, and again, a subclinical dose of CoQ10.

Oh, and it has 50 mg resveratrol, again a subclinical dose.

https://www.webmd.com/heart-disease/resveratrol-supplements

...To get the dose used in some studies, people would have to consume 2 grams of resveratrol (2,000 milligrams) or more a day.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6822644/ (CoQ10)

...the average dose necessary to attain a therapeutic blood level of > 2.5 mcg/mL is 200 mg taken twice daily with a meal.5,7

I'm not even going to discuss the ACV...

I do take supplements. In fact, I take CoQ10. But as a stand-alone ingredient. I take a B complex and a multi-mineral. Most everything else is stand alone. This way I get the forms and quantities I want.

kiteflyer105 · October 2023

I was planning to discuss anything I do with my doctors. All of this is very confusing. WE all have different anatomy and physiology...what works for one might not work for another. I understand that...all I care about is digging myself out of this hole. Thank you everyone. Hugs.

kwilson18 · November 2023

Do you have access to cardiac rehab? It seems like a program monitored by people with experience with your specific diagnosis. And I would also run anything by your cardiologist!

loulee997 · November 2023

kiteflyer105 wrote: »

I was planning to discuss anything I do with my doctors. All of this is very confusing. WE all have different anatomy and physiology...what works for one might not work for another. I understand that...all I care about is digging myself out of this hole. Thank you everyone. Hugs.

There used to be several low EF% (injection fraction percentage) message/discussion boards. Perhaps your cardiac team can recommend a few patients to talk to about different approaches.

My mom's pacemaker worked for her--but she also had it done in her 80's and she has kidney issues on top of it. So it may or may not be the approach for you. She had a lot of upside with very little downside...but once again, she is now 92. The amount of daily activity she wants to do would be much less than you--as a younger person.

Talk to your cardiac clinic. See if they can recommend some support groups or some people who have done the ICD. Someone who lives it--can give a better view of what to look out for.

I will say mom's intervention has bought her many more years than she should probably have ---but each situation is different. She is not a candidate for different or surgical interventions due to her age and overall health.

I'd try to find a board of people who have done the different options. Discuss it with a practical group.

T

Gisel2015 · November 2023

jennpen310 wrote: »

I recommend you start taking something called "heart miracle" they have it at vitamin shoppe its a supplement you drink. It may help you get back to normal. Also take magnesium. I am a firm believer in taking natural supplements instead of pharmaceuticals. You can continue your meds but it you see results little by little you can wean off them as you see yourself getting better.

Sorry but this is not a good recommendation. Only doctors should decide if a patient needs to wean off their meds, especially for somebody with serious heart problems, as the OP has.
OP, just follow your cardiologist recommendations and be aware that some supplements may interact in a negative way with your meds. This is a forum to help people lose weight and be fit and healthy; this is not a place to tell people how to "cure" their medical conditions.

kiteflyer105 · November 2023

I have to have my AICD surgery, heal, and then I will finish cardiac rehab. After that, I am hiring an exercise physiologist to work out with. This is going to be a slow build up process. Starting from ground zero. Covid caused my heart failure, my diabetes caused my kidney failure, and I used to have uncontrolled diabetes, however, my last A1C was 7.1, down from 12.3. I see a nutritionist.

loulee997-Thank you for your input.

jennpen310-I know you were trying to be helpful.

wendymoreland3796-Thank you for sage advice.

kshama2001-Thank you for your helpful input.

kwilson18-Thank you. My first AICD surgery did not work , because my vain was too small. I am seeing the cardiologist next week to find out my new surgery date. I was doing cardiac rehab. I can last 1/2 hour on the machines, which is awesome.

cwolfman13 · November 2023

jennpen310 wrote: »

I recommend you start taking something called "heart miracle" they have it at vitamin shoppe its a supplement you drink. It may help you get back to normal. Also take magnesium. I am a firm believer in taking natural supplements instead of pharmaceuticals. You can continue your meds but it you see results little by little you can wean off them as you see yourself getting better.

This is pretty much terrible advice for someone with a serious medical condition. For one, over the counter supplements are completely unregulated. For two, anyone with a serious medical condition should be consulting their Dr. in regards to taking any over the counter supplements. For three, nobody should be weening off their medication without their Drs. knowledge, consent, and supervision. I mean, yeah...it's a free country and people are free to do that, but it's not really a particularly good idea and can have some pretty serious ramifications.

loulee997 · November 2023

kiteflyer105 wrote: »

I have to have my AICD surgery, heal, and then I will finish cardiac rehab. After that, I am hiring an exercise physiologist to work out with. This is going to be a slow build up process. Starting from ground zero. Covid caused my heart failure, my diabetes caused my kidney failure, and I used to have uncontrolled diabetes, however, my last A1C was 7.1, down from 12.3. I see a nutritionist.

loulee997-Thank you for your input.

jennpen310-I know you were trying to be helpful.

wendymoreland3796-Thank you for sage advice.

kshama2001-Thank you for your helpful input.

kwilson18-Thank you. My first AICD surgery did not work , because my vain was too small. I am seeing the cardiologist next week to find out my new surgery date. I was doing cardiac rehab. I can last 1/2 hour on the machines, which is awesome.

Good luck! Let us know if things are going well.

kiteflyer105 · December 2023

So, my first ICD surgery failed. I am trying to get the second one scheduled. They are 2 months out. In this time I will be close to my last cardio rehab appointment. I can't wait to finish. I also need to finish PT for hip bursitis. I am waiting on my insurance carrier to approve a scan, so the surgeon can see how much inflammation is around my heart. Overall, I am trying to walk more mileage than speed. I have walked up to 2 miles this year. This is awesome considering I almost died this year. I had to teach myself to walk again. I can't wait to give away the cardiac Zoll vest. This will be one of the happiest days of my life. Good luck everyone in 2024!

ddsb1111 · December 2023

@kiteflyer105 Good luck to you as well! I can only imagine how anxious you are. If you don’t mind me asking, how did this happen. Is it something I can avoid or is it genetic? 😟

kiteflyer105 · December 2023

I came down with Covid. Covid gave me Heart Failure.

https://www.hopkinsmedicine.org/health/conditions-and-diseases/congestive-heart-failure-prevention-treatment-and-research

Prevention
The best way to avoid congestive heart failure is to avoid the conditions that contribute to it, or to carefully manage these conditions if they develop, says Jones.

Stop smoking—better yet, don’t start. It’s a major factor in the arterial damage that can cause heart failure. Also steer clear of secondhand smoke.

Eat in heart-healthy ways. The foods that help you are those that contain little saturated fat, trans fat, sugar or sodium. Think fruits and vegetables, low-fat dairy, lean protein such as chicken without the skin, and “good” fats such as those found in olive oil, fish and avocadoes. Get practical ideas to eat for heart health in Eat Smart.

Lose pounds if you’re overweight. Along with diet, being physically active helps achieve this goal and is also great for your heart.

If you have another type of heart disease or related condition, closely follow your treatment program. Ongoing care and adherence to prescribed medications, such as statin drugs to treat high cholesterol, can make a big difference. “Recent research shows that a major portion of the long-term benefit of statin therapy is in the prevention of heart failure by way of preventing heart attacks and coronary events that lead to it,” says Jones.

ddsb1111 · December 2023

kiteflyer105 wrote: »

I came down with Covid. Covid gave me Heart Failure.

https://www.hopkinsmedicine.org/health/conditions-and-diseases/congestive-heart-failure-prevention-treatment-and-research

Prevention
The best way to avoid congestive heart failure is to avoid the conditions that contribute to it, or to carefully manage these conditions if they develop, says Jones.

Stop smoking—better yet, don’t start. It’s a major factor in the arterial damage that can cause heart failure. Also steer clear of secondhand smoke.

Eat in heart-healthy ways. The foods that help you are those that contain little saturated fat, trans fat, sugar or sodium. Think fruits and vegetables, low-fat dairy, lean protein such as chicken without the skin, and “good” fats such as those found in olive oil, fish and avocadoes. Get practical ideas to eat for heart health in Eat Smart.

Lose pounds if you’re overweight. Along with diet, being physically active helps achieve this goal and is also great for your heart.

If you have another type of heart disease or related condition, closely follow your treatment program. Ongoing care and adherence to prescribed medications, such as statin drugs to treat high cholesterol, can make a big difference. “Recent research shows that a major portion of the long-term benefit of statin therapy is in the prevention of heart failure by way of preventing heart attacks and coronary events that lead to it,” says Jones.

I’m so sorry to hear that. Thank you for informing a dummy like me. I had no idea where that came from or what to do, sad to say. As I get older I realize how much I should start paying attention to stuff like this.

kiteflyer105 · December 2023

Good news! I will have my surgery around the end of March/beginning of April 24. I will have waited 5 months to start my new life. They are 1.5 years behind due to Covid. They have 700 patients. My Pet Scan was denied by my insurance carrier. This detects how much inflammation is around the heart. So I get to move foward. They will schedule me at the end of February. Woo Hoo! Can't wait to give my cardiac vest back. I have an electricity problem in my heart. The ICD will shock me to keep me alive. I can't wait to get it. For real, I can not wait to dance again, or go in the ocean.

kiteflyer105 · December 2023

Repost

springlering62 · December 2023

Hey, Kite, regarding physical activity. It’s awesome you’re up to two miles a day. There’s so many people who whinge they can’t do anything and here you are, killin’ it and anxious to do more.

Just a thought. My gym is part of a large hospital system (Wellstar). It has a large, separate area devoted to cardiac rehab with all kinds of equipment, and a lot of degreed staff and therapists specific to cardio rehab. They also offer special chair fitness and water aerobics classes, specifically for cardiac patients, and even a special kickboxing program for Parkinson’s patients.

When rehab patients graduate up to the “regular” gym, there’s a BP monitoring station where they record it every visit, and trainers who are knowledgeable with former rehab patients.

If you’ve got something similar in your area it would be worth checking out. I’m always astounded at the number of locals - including doctors who practice at the adjacent regional hospital !!!- who don’t even know this fabulous gym exists- and has been open to the public for decades. It’s a first rate facility.

PAV8888 · December 2023

Have medical practitioners given you any advice on what to do in the meanwhile in terms of diet and exercise in order to remain as healthy as possible and/or improve?

kiteflyer105 · December 2023

I see a nutritionist for my Binge Eating Disorder and work on moderation. I am demanded by my PCP to exercise 5x a week for at least a half an hour. After I graduate cardiac rehab, I can go to the weightlifting section again. Woo Hoo. Unfortunately, I moved from a larger city to a smaller town .Thank you for the idea though. My surgery date is 1/10/24. I get in a new ICD. I can't wait. Happy New Year's folks!

kiteflyer105 · March 12

Time flies. I had my ICD surgery in January and 6 weeks of recovery after that. The ICD is about the size of a post it implanted in your body with 3 leads. Giving back my Zoll Vest was one of the happiest days of my life. It will shock me if my heart stops working. This feels like a horse kicking you in the chest, so I have been told. In January, I remained binge free for 30 out of the 31 days; however, I did gain weight due to the Tylenol not working for the pain. I did drink pop ad ate sugar--I can't lie. I was just doing whatever it took to get through the recovery time. I received my Cardiologist clearance for cardiac rehab, and physical therapy. I have to walk at least 3 times a week for at least 30 minutes. I think every other day is the most optimal.

I just started an Eating Disorder clinic to deal with my BInge Eating disorder. My main goal for March is to focus on nutritious portions. Fruit will need to be my dessert. I am not going to focus on losing weight, just staying in my calorie allotment. Without bingieng, this will be challenging enough. Being more disciplined is my larger goal. It's GO time. NO excuses.

kiteflyer105 · March 12

VegjoyP · March 12

I will share my testimonials.I simply stating facts from real life events. My fiance had CHF. He died in the table in operating room but came back.
When we met he was 220 and recovering. We met at the gym. We became friends and I sharedwirhhimmy nutritionandhealth knowledge. I coach him. ForstI took Hinton the grocery store Sandwell went through all the isles. I showed him labels,asked questions, figured out things. We tried different foods, recipes.
There is more but to summarize I had him on aplant based diet. I am vegan but when i help people I meet them where they are and respect thier choice.well he started doing what I do. He continues to learn now and I cook for him sometimes, and taught him how to cook WFPB SOS also. His ejection fraction went up, IT was ~ 23, now I believe 32. His cholesterol dropped in half. He lost wright and is 159. His waist went down several inches. He does cardio, walks with me, lifts weights. He even build us a home gym. He looks great and his skin looks incredibly better. I have seen this transformation in him and other people I know.
He takes Coq10. He got off many of the meds but not all. He is still on his journey and wants to go to 155 then 150.
I have been into health since I was 12. I worked in gyms as a trainer and health food stores. It is mind boggling the aggression,defensiveness of many prople who vhenimently defend thier belief with keto, carnivore, etc. Vegans too, yes. All I know is what I did, what I have seem anddine and where I amnow. I read science,studies and medical wellness pracritioners.
YouTube, Twitter, etc. Magazines, celebrities, EVERYONE gas thier " best diet" I am not going to talk about those. I need not. This is what I k ow. A WFPB diet works.

alys_nawawi · March 13

kiteflyer105 wrote: »

IF you have heart failure and a low EF% (injection fraction percentage), can you tell me how you raised your EF % and got it back to normal? I have been taking all of my medicine.

I started at 24% then 3 months laterI was up to 25%. This was discouraging to be honest. I hope it eventually goes back up to normal levels.

Next, I am going to have an ICD placed in my body.

Thanks for the input.

I just joined. I have HF and 2 years ago had an EF of 22%. I was back to 55% in 7 months by close management by my HF specialist and medications. I am also strict about no added salt in cooking and I rarely eat packaged prepared meals. Always low sodium soup if not homemade, no sodium canned veggies, all that kind of stuff. I also limit my fluids to 64 oz per day. It takes getting used to and I miss salt. Has your team helped you with tips on how to reduce sodium and stay on track with fluids?

springlering62 · March 13

alys_nawawi wrote: »

kiteflyer105 wrote: »

IF you have heart failure and a low EF% (injection fraction percentage), can you tell me how you raised your EF % and got it back to normal? I have been taking all of my medicine.

I started at 24% then 3 months laterI was up to 25%. This was discouraging to be honest. I hope it eventually goes back up to normal levels.

Next, I am going to have an ICD placed in my body.

Thanks for the input.

I just joined. I have HF and 2 years ago had an EF of 22%. I was back to 55% in 7 months by close management by my HF specialist and medications. I am also strict about no added salt in cooking and I rarely eat packaged prepared meals. Always low sodium soup if not homemade, no sodium canned veggies, all that kind of stuff. I also limit my fluids to 64 oz per day. It takes getting used to and I miss salt. Has your team helped you with tips on how to reduce sodium and stay on track with fluids?

What a wonderful, insightful and inspiring first post @alys_nawawi

Welcome to the boards and I sincerely hope you’ll share more.

kiteflyer105 · March 26

VegjoyP-Thank you for your input on the Plant Based Diet. I eventually want to move in that direction.

alys_nawawi-Awesome EF! I get mine tested in April. Thank you for your story. I was never a huge salt eater. I have had a nutrition class and have seen a nutritionist in the past. I don’t have a problem with water. I am attempting to just drinking unsweetened tea, and with no caffeine, fruit tea. I like cinnamon iced tea and green tea with mint on occasion. Then sassy water for hot days. I need to give up pop for good. I still struggle with this at times. I know to stay away from cannned and frozen foods for the excess salts, and bread too. Boo!

The recovery for the ICD went better than I expected. The sensation with the ICD unit does not go away. Some days it is more tender than others. If I moved too much, it was painful. I ended up becoming more depressed in recovery. I worried about get mobility, endurance, and stamina once again. It is a slow process. I can't wait to finish cardiac rehab.

The Eating DIsorder Clinic is going well. It is about learning new healthy coping mechanisms and tools. It is about feeding your body--3 meals, and 2 snacks per day, so I don't restrict and binge eat.

I am progressing slowly but surely. The biggest change is in my mindset. I need to focus on improving each day. Good luck everyone.

kseeds5112 · March 26

I just joined the community and have HF. 2 years ago I had cardiac arrest (Widowmaker heart attack) with an EF of 35. It came up to 55+ a year later with the help of med combos from my Dr. I also was overweight by about 60 lbs. I hadn't really done anything about my weight until recently, this past October. I subscribed to another weight loss app and have lost 35 lbs so far. I am trying some other apps and free programs to continue my journey because I'm not sure if I want to keep paying as much for it. Weighing my options (pun intended 😆). Everyone is different with HF and the reasons for it, mine was high cholesterol, weight and generally didn't take care of myself. That's just my story and sharing some successes of what is working for me

kiteflyer105 · March 27

kseeds5112-Thank you for sharing. I am glad you are still here. Woo Hoo! Nice job with the weight loss and raised EF score! I am proud of you!

Hi. I had a breakthrough today in yoga. Instead of the ED voice dictating everything, I had more radical acceptance, inner peace and calmness than I've had in a long time, which was completely unexpected. My soul feels relieved instead of the critical dictator/ director ruling my brain.

Eating Disorders are a mental health issue. One that our society does not take seriously enough. The difference between alcohol and drug rehab is you are taking the substance away, whereas, in ED recovery you are adding more food/nutrition for better overall health. Everything is allowed in your eating plan.

They, in my rehab, don't believe in BMI, since it was meant for men in the military. I am used to waist circumference and BMI being indicators for good health or lack thereof. I still feel uneasy, and this is not comfortable in the least. I keep pushing through the pain; all I want is to graduate. I owe that to myself. Two weeks left and I may have to go to the next phase of rehab. We have homework daily. Some days I am more accepting than others—you want me to do what????

The nutritionist is onto every game you can play. You have to eat ALL the food groups. Coming here to MFP was trigger, since most people are restricting. It is when I restrict, and tell myself ‘No", is when I binge more. I sincerely never realized I had so many food rules. I know this probably sounds like crazy talk to some people. It is about everything, except the food.

I love and approve of myself now, not when I fit into “size 6 jeans or weigh 120 lbs.” That in itself is a release and complete freedom. I just want to get out of my self-imposed bondage. For those readers who have E.Ds., or any other addiction, my prayers go out to you. You can get out of hell...we just need to work on it daily. You are worth it. Life is more than a number on a scale.

When was the last time you felt pure joy in your life or had a peak moment? This is living life at its best. We only have one life.

Will you regret not achieving your goals at 65 years old? Think about it. Excuses and BS keep us stagnant. Kick it into 5th gear and speed, baby! Don’t you want to move to the next level in life? We only hold ourselves back. High fives and much love…

kiteflyer105 · April 17

Well, I made it to the 4 weeks. As a gift, they want me to stay for another 4 weeks of recovery. Lucky me! Lol. Really, they want me to work on changing my neural pathways. Realistically, at first I was irked, but I know this is the best thing for me. We are learning skills and tools to replace the bingeing. I am focus on weight maintenance instead of my weight fluctuating so much. They told me not to lose weight. That I needed to achieve weight stabilization first. Some people are put on movement restriction. I am not going to talk about walking in group.

We use mindfulness, meditation, self-compassion, Cognitive Behavioral Therapy. Behavior Chain Analysis, Dialectical Behavior Therapy, Dear Man, Radical Acceptance, Do the Opposite of what you feel. etc.

What it boils down to is that I choose to live or die. I am choosing to live. Chronic BED is not cured in a month. I need to focus on my WHY and the negative/ positive consequences of following through or not following through.

The first 1.5 days I was not a happy camper. I was ticked off over eating in front of people, and being forced to eat 3 meals and 3 snacks a day. It has taken awhile of getting used to...All of the clinicians are very helpful; they want you to succeed. We have yoga, CBT, DBT, community group, and cooking group.
The nutritionist gives a lecture every week. She is very knowledgeable and helpful.

I am now incorporating some binge foods in my daily food plan. This makes me not crave them so much. Some of those foods are unappealing. We have exposure therapy where we eat different "scary' foods in front of the group or out in a restaurant. The point is to go out of our comfort zone.

All in all, this has been a life changing experience. It works if you work it, especially one day at a time. I want to graduate the second month. This is my goal.

As far as the ICD, I have to recondition my whole body. I thought I would bounce back rather quickly. This did not happen. I deal with daily fatigue that I never had before. I almost always take a nap after all the groups. It is emotionally grueling. I am not getting adequate sleep at night. My diuretics keep me up at night. I'd rather be sleeping for sure.

All I can do is keep on keeping on.

Does anyone else have Heart Failure here?

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