This is Joe’s Story – a guest blog article based on Joe’s comment on this blog describing his fascinating experience with atrial fibrillation and subsequent heart failure. Joe has really demonstrated persistence and a positive attitude that, I think, a lot of athlete’s with atrial fibrillation possess. Joe is making a comeback from serious, life-threatening heart failure, and he has done a good job of accepting the new reality of his post a fib performance.
Hi Everyone – I’ve had A-Fib for about three years now.
I live in the tropics and cycle, run, do weights. I train five days a week but not hard or too easy. I believe I got into this mess when I cycled up our small mountain here on the island I live on three times a week back then. I would only drink reverse osmosis cleaned water consuming about four liters just going up the mountain. I’d do weights in the morning and cycle in the afternoon and believe me it gets hot and humid. It’d take me about two hours to cycle up to the top of this very very steep course. (approximately 5K to the top)
In hindsight now I guess I’d been over-training terribly and not putting back potassium and minerals into my body at all. I happened by luck (or fate) to be given a heart monitor and thought it was cool to use it on my cycle ride up the mountain. I set the max at 185 and started off – as soon as I started up the steep hill after a five kilometer preamble the damn thing started beeping – it was at 205 and I just started up the hill! Like an idiot (ha ha) I kept going and it would not shut up. Did it the whole way up and for the next month it was like that. Can’t believe it now I did that but as I’m in constant A-Fib now the reality speaks for itself.
Been put on beta blockers and have to take warfarin. I suffered a sever influenza sickness last year and it really took a toll on my ticker. My left ventricular ejection fraction (LVEF) was only 17% when I finally went to see the Cardiologist here as the echo showed.
Fast forward now to a month and a half and I’m back up to 35%. The goal is to get back to 55%! I love running and exercise and like some of you wrote would rather plonk on the trail then sit on the couch, so be it. I used to run with the goal of just finishing the run and was happy about it.
This is Joe’s heart on heart failure
Then I got into times, was happy about that too. Before my illness last winter my times were at my all time best. Slow for a lot of runners but for me great. After all I run to please me so I accept what ever pace I come home at. Not a biggie. The doc was amazed at how fast my heart recovered and I even saw the difference on the screen of my heart’s movement. The echo I had before it looked like Jabba the Hutt sleeping. I think I attribute this to doing a LOT of research on the internet getting informed of what I was dealing with and trying it slowly with my Doctor always in the know. He was very skeptical of the supplements I was taking but has done an about face now. I also believe the coconut water I drink everyday now has helped in a big way. I noticed I don’t have an ammonia smell anymore when I sweat. I always had that smell when I drank the Osmosis water. I drink a mineral water now along with the Coconut water.
Anyways – I do prattle on. The thing is not to Panic and get informed!
I wear a Polar T-80 watch with GPS and follow the Zone rules. Yeah, I’m running about four minutes slower than normal but I feel great after a run now and do not dread the next one. Hoping my pace will kick up a notch as the info says it will as the body adapts.
This forum is great may I add and it sure is reassuring to read of Peep’s in their 80′s who’s lived with A-Fib for 20 or so years and keep running. Hopefully one day soon someone will find a cure for this curiously annoying ailment.
When I had 17% ejection rate it happened really fast. The time line is like this: on a Friday I ran a very fast 5K run for me. One of my best times. Later that day flew to spend three days with a friend, and after returning home I got ill and by Wednesday was full blown into whatever ailment I had (Influenza?). I tried running a week later but could not even go further than 50 yards! Then I stopped and decided to rest a week, do nothing and fight this illness. Well, it got worse and worse – my lungs started filling up with fluid and at night I could hear bubbling in my lungs. Fast forward a week of no sleep, etc, etc, and went to a doctor was put on antibiotics. I didn’t get better, still the same symptoms. (Turns out the heart, because of it not beating properly causes the fluid to back up and then it seeps into the lungs so any of you with these symptoms see a doc. You can do a thumb press on your shin and if the indentation stays and is deep you’ve got fluid retention and need a diuretic).
After a couple more weeks of this I decided because of previous symptoms I felt there was something wrong with my heart again. Seemed to be doing the same old symptoms of A-Fib. I thought I was free of it for almost two years or else it was Silent A-Fib and I did not know it!
My cardiologist gave me an echo and all he said was “What did you do?” Man, you don’t want to hear that from your doctor!
Like I said before I even could see my heart wasn’t doing anything. Just sort of sitting there: legs up – arms crossed!
He put me on meds again and the dreaded warfarin. They worked almost right away! I was on Codarone (amiodarone) for only a month and everyone should know that this is a dangerous drug! Long half life and it’s like shaking hands with the devil. Used a lot as a last resort. But! – for short periods it works miracles. Using it over six months or more can have repercussions.
Well, that day I came home from the doc’s I tuned up my mountain bike and went for a very short ride. I was out of breath the whole time. Did this for a couple of weeks and got stronger. Started weights again, and just started using the bars with no weights. Did this very very slowly and now after two months I’m almost back to benching 200. (ha ha – good for me anyways) The last check up the doc said my heart (Left ventricular ejection fraction) was up to 35% and I saw the difference in the video as well! Made me feel very very happy.
So now I’m trying something I never thought I’d do. I bought a Polar T-80 Heart monitor with GPS and run and cycle in the Zone. I exercise according to my heart rate. I’m finding I’m no longer exhausted during the rest of the day and overall feel better, stronger. It’s taking time to lose that competitive spirit though – ha ha ha – I’ve got friends who are in their 70′s running faster than me. My slowest times in years but I’ll stick to it and see if my times automatically come back up as the research suggests. This has to be done. I love being active but I hate being dead more so I have to accept and live accordingly. Don’t Panic!
A heart pumping at 33% efficiency feels a lot better than 17% I can tell you. I do more things than most of my friends. It still amazed me though how I can do weights for a hour, run for an hour then eat, chill and later in the day walking up a flight of stairs takes my breath away. It’s like a reminder – oh yeah I’ve got heart problems. A friend wisely told me that it could be like losing weight: fast in the beginning; then slower. I hope my ejection fraction % will keep increasing till 55%. Considered normal. Then I’ve got to deal with the A-Fib.
Joe still the life of the party – but no more beer for this guy!
A very important footnote: I used to drink beer everyday for years! Love the amber fluid. After my first A-Fib about five years ago I stopped for about three months. Then about two years ago I only drank on Friday and Saturday. For two years I did this. No exceptions. I’m 51 now and even this was taking it’s toll I believe. Now I’ve cut it out completely and will go the distance – sort of sucks but I’m close to the three month period now and will keep going. My next visit to the docs is in August so I’ll hopefully remember to post what transpires.
If anyone is interested in what I’ve been taking for supplements, eating, drinking, and exercising please leave a message on this blog and I’ll be most happy to share. One thing I’ve always found frustrating with most blogs is when I’ve read what someone has done and it worked there was no follow up. I’ll try and keep posting on this one. Great site! Peace out…………… don’t Panic : )
Update (from Joe)
Hi everyone. Went for my one month checkup at the cardiologist today and the results were better and improving. The Doctor said my heart has shrunk by a noticeable margin which is a good sign. (had an echo) It’s getting stronger. The ejection fraction went up a bit as well to around 37%. Getting nearer to 40% then in a few months hopefully 50 or 55%!! I was also able to wean off one med by half. I felt it in my run today – a really great run. Will continue on meds and supplements plus exercise and diet as is for another month. See ya then!
ha ha ha love the Hut!
great post—and as someone who has done the afib dance for almost 10 years now (Im a runner and gym rat like you) your words were inspiring, too. Just BTW I’ve found that supplementing with magnesium (just 100-250 mgs a day of mag chelate) has really made a hge difference. My breakthroighs are less frequent and I have been able top cut my sotalol dose. Plus a few slugs of Garolsteiner mineral water tenfs to calm the HR down post run.Anyhow, muchos nachos for the post…
Thanks for the comment. I do take Chelate Magnesium, 200mg morning and at 6PM(ish). I firmly believe that this is helping plus the 400mg of CQ10 and Taurine 3 X’s a day @ 100mgs. From all the research I’ve been doing (Believe me hours and hours) for what I have this is the right direction. Suprized that 90% Doctors do not addminister these products when A-Fib is found in patients. I’m excited about Nattokinase as well for anti blood clotting. Japan is ahead of the west on this one! Still trying to persuade the Doc into me trying it, or if I actually need it.
Great post and very interesting. I had a cryo ablation on May 8 due to my A-Fib and so far so good – no problems. I’m still on Pradaxa and Diltiazim (sp?). I started running when I was around 58 years old (I’m going to be 69 in Sept). I love being active and apparently so do you. Keep up the inspiring posts. I don’t take any supplements except Vitamin D3. Coconut milk is interesting; I’ll have to read up on coconut milk.
Hey thanks for the comments….just an FYI….it’s not Coconut milk but water. Huge differance. If you can get Fresh Coconuts where you have to open them yourself…that would be the best. Can’t say what the Tetra packs of Coconut water taste like. I’m lucky they grow right outside my door! Good luck!
Hi…. had another checkup today. Heart is at 44%! That’s up from 17% four months ago. I felt the differance with this weeks run. I ran my 5K in 34 mins. Now that slow for a lot of folks but for me pretty fast. Three months ago I was running 45 mins 5K’s. Another big differance is I’m not at all tired after doing so and the power is there to sprint at the end. Breathing is ten times better too. I’m on about 7 suppliments total now all directed at improving the heart. Amino acids, and very healthy foods and liquids and NO crap!. Never liked garbage food that much anyways so I don’t miss it. Beer? Yes, but even that I don’t miss anymore. Never thought I’d say that! ha ha ha….My med’s are down to only two half pill dosages a day now from 2.5 pills a day dosage. Still in A Fib but the doc says “Slight” now. What ever that means…ha ha ha….I watched the Echo and saw the little bumps the heart made when beating but they’re not anywhere near the way they were when Jabba was lounging in LV Chamber! So as promised that’s my update….another one is Six weeks this time. May everyone get better!
Just a quick note to others who may benefit from this bit of information. My first episode of A-fib was several years ago and landed me in the hospital because I had no idea what was going on. I was fortunate in that is seemed to be a single episode…until about two years ago. I started having about one a month and they lasted several hours – usually starting in the middle of the night and lasting 8 – 12 hours. My wife is a health nut and decided I should try Iodine in my diet and get off of the Synthroid that I started taking just before my first episode (see where this is going?). I have been off of Synthroid for over three months and have not had any A-fib to speak of – just a flutter once a week or so, and no lingering effects. My heart rate has dropped from 58 BPM to 52 BPM and my endurance is through the roof! I typically train at 5k and have discovered that it barely tires me any more and am considering bumping up to half marathons. I am 66 years old and haven’t felt this good for many years. While on Synthroid my heart was always working extra hard and almost forced me to pay attention to it…now I’m not even aware of it. That has to be a good thing! I’ll be going in for a numbers check with the doc to see what she thinks. I’m not prescribing anything, just reporting what has happened to me. Syntroid – bad – and appears to be an A-fib trigger for me.
Hello All Again:
This is my follow up of my experience of the last six months. As in my first write up here on this excellent site stated, 17% heart function. Jaba living within my innards. What to do?
Well six months later just came back from the Doc’s. 58% heart function! Zeoweeeee….looks like Leia was in my chest cavity taking care of ole Jabba once and for all. I was so happy I cannot begin to tell you how….
So it seems all the work and med’s and supplements worked? Who knows….I’m sure it was a bit of everything. Most of all the stopping of alcohol completely I would bet. Looks like no going back. The doc said I can go off Warfarin now as well since I’m out of the danger zone. Man six months ago he wanted me to go back to my home country (I live abroad) and get a defibrillator installed. I mean turn around walk out of the office and book a flight home and get one in ASAP.
I’m still on Concor 2.5 for another two months and then I’ll wean off that as well and see what happens. I’m still in Afib though. I feel the flutters and I can hear them with my stethoscope. Not anywhere near as bad as they were. I’m running 5K’s at 32mts which is properly the best I’ve ever run them…(this is cross country with hills. Not a straight track) I’m 51 now and my weight is down to 184 pounds. It was at 210ish when this whole thing started. My goal is to get my fat percentage down to 10%. I’m at 16% now. I’ll be in better shape that when I was in collage!!!!
So if anyone out there want’s to ask me how I did this and what was my exercise, diet, supplement and medical regime. You can contact me through the fine executor of this blog.
This will be my last e-mail to this site as I’ll be too busy running around…..
That’s remarkable, and marvelous news! I don’t know if you ever expected to get your ejection fraction back up to 58%! That’s normal range, now. Far out!
Hi, I’m new to this blog but happy to hear stories like mine. I’m 59 and have been a life-long runner, biker, swimmer, hiker, etc. 7 years ago I had by 1st a-fib episode during an ultra-marathon in VT. Since then I’ve had 3 additional episodes with the intervals descending (4 years, 2 years, 6 months). All the episodes were treated immediately with cardioversion and I’m not on any meds other than aspirin. I’ve kept up my physical activities but no more long distance running. After my last episode (March 2014) I decided to experiment and totally cut out caffeine and alcohol. I was typically drinking a couple cups of coffee per day and drank only beer on weekends but the only common thread among each of the episodes was that I’d had a beer or two the night before. It’s now been 8 months and I’m wondering if cutting out the beer actually had an effect. I’ve seen a couple references to stopping drinking and although I hate the idea of staying on the wagon permanently, it would be great if that was part of the answer. Anyway, good health to all. I’ll be lurking for future posts. Bill Powell
Hello: I thought I’d troll past and see what’s up on the site. Great to read these extra additions. Happy to read of other peoples progress. In regard to Bill Powell I sympathize 100% Being a Canadian and a Acadian to boot it’s in our blood to drink beer! ha ha ha….I like to think anyways. So giving it up was a tremendous let down for me. I went from almost everyday to only the weekends, then one day a week! I’ve not drank now for nine months but I still have the symptoms. I live with A-fib everyday. I have a finger monitor I check every other morning and can even feel my beating heart and know what’s up. I’d sure like to have a few brews again at some point in my life but for now I’ll stay away.
I live in the tropics and this year I came down with Dengue fever! I went to my cardiologist for an echo and sure enough the heart fraction rate went down and it was all wonky. After a month I went back and it was up to 58% ejection fraction and beating somewhat normally again. I’m finally after two months feeling somewhat stronger and “normal” again. So there are definitely other factors involved with AFib.
I’m still running 5k’s, cycling 20ks and weight lifting five days a week, I take Sat and Sun off and just chill. I still dj my weddings on top of this twice a week more or less and do Carpentry and other work pertaining to building during the week as well so I’m busy.
Remember……”Don’t Panic” Peace out!
These stories are awesome and inspiring. I’m a 45 year old runner with paroxysmal afib and it’s frustrating me no end. I’m not on a beta blocker but on Verapamil and Flecainide and I seem to be ok for 6 months or so and then for no reason whatsoever would just ‘spike’ and on a run would often go over 220 beats per minute. In fact it confuses my Garmin heart rate monitor and it jumps between 55 and 230. My cardiologist seems to think I should run through these episodes if my body feels strong but I’m too nervous to take those risks. I may try that coconut water and magnesium supplements you guys are talking about. Thanks for sharing your stories!
I’m not a doctor, but it seems to me that it would be risky to push your HR w/out taking anti coagulants but probably OK if you do; coumadin is a pain but Xarelto is pretty cool, you can actually eat green stuff like salads and you don’t have to go in for blood level checks. Just BTW you might want to visit the sites for verapamil and flecainide to see if there are any cautions about mag supplementation—I take Betapace and they counsel avoiding mag for 2 hrs before or after you swallow their pill. FInally, I have had some luck with potassium supplementation—about 1/2 teaspoon per day of bulk potassium citrate. Hope this helps!
Joe your story is compelling. Everything you go through, you still follow through with your passion and it’s absolutely incredible. Thank you for being a role model for Afib patients across the world.
Thank you! I’ve started drinking coconut water and it’s healing with Afib.
What do the CoQ10 and Taurine do?
By any chance didn’t you played as an extra (Genii Soldier) in few episodes of Stargate Atlantis?
Please tell me ur supplements
I have paroxysmal atrial fib
I don’t take any supplements specifically for a fib. For general health I take B complex (I’m vegetarian) plus vitamin D (everybody needs this if they live in Northern climates) as well as Magnesium and vitamin C.
Hey there, thank you for your blog and encouragement! Not sure if I haven’t dug deep enough into the blog as I just found it. But I wanted to ask about your afib, if it is the type that is slow, or the type that is real fast? I am asking this as I have a tendency to the type that is very fast known I believe as tachycardia. The doctor right now has me as a pill in pocket because episodes have been spread out. But recently there have been more episodes (whole house had the flu), and Im feeling more depsperate to find things to help myself. They recently did an echo and everything looked ok except for one discovery. there is a hole that never sealed in the heart known as PDA, the new equipmrnt found it. However, the doctor didn’t feel this was a contributing force but wanted me to go to another type of cardiologist as it is very rare for an adult to have this. With that, not sure it would be benefiacial for me to try some more of the supplements myself? I currently take magnesium glycinate about 200mg in the mornning and at night. I take D3, some E occasionally but the Mag., is my most constant. Where is good information to look at some of these other supplements and there potential actions and/or benefits if you can recommend any? And as you have stated, I run everything by my doctor. When your life is in the balance, this matters FYI. Blessings to you in your journey!
Hello. thanks for your kind words. My rate is controlled w meds but would tend to go high without meds. I don’t make any recommendations regarding treatment or supplements; but my cardiologist advises that I take magnesium. Good luck!