MY HEART STORY
Most afibbers get this huge shock when they experience their first scary heart arrhythmia episode. Well, the same thing happened to me when I was 24 years old.
But, and this is a big but, I feel blessed that I’m still here and able to live a full life every day, and hopefully add value to my world. Happy to have a beautiful wife and two talented and wonderful children.
MY A
TRIAL FIBRILATION STORY
I was born in sunny wonderful South Africa, where I still live. My mother did not know that I was born with Tetralogy of Fallot (TOF), this was back in 1971. Nowadays they can pick up TOF much earlier. Well it turned out that I was a blue baby due to the lack of oxygenated blood in my body, caused by the TOF.
Fast forward to 1976 and the doctors decide to operate on me in Bloemfontein. This was still a very new procedure in those days, and I am very glad that everything went well. So during my school years my heart usually kept it’s beat, I say usually because I think that there were a few episodes of afib but they never lasted very long. As you would think I did pay attention to my heart and what it was doing and how I was treating it.
I went for regular checkups and because they said that if I did not have the operation in 1976 I would have only lived to 21, I was very happy to reach 21, relatively event free. So I thought this was home free for me, my heart is alright and I can go on with my life. I even made the cut and joined the Police, and yes, I had to prove my heart was OK. I did not know that my TOF surgery made me susceptible to heart arrhythmia.
HOW DID MY AFIB START
Then the curve ball, I went to the Kruger National Park (where you can see the big 5) and had to drink malaria prevention medication. My heart went out of rhythm. The doctors there did not really know what was going on and back in Bloemfontein they also struggled to figure out what the problem was. I visited a few doctors and used different types of medicine, but I was not 100%.
Then luckily I was referred to Dr Jordaan at the Universitas Hospital at the Free State University. He diagnosed me correctly and also did my first cardio version on me.
During this period I did have other “incidents” of fainting and using of wrong medication but overall things were not bad. But I did not know that my biggest challenge was just around the corner.
PANIC ATTACK
At the beginning of 1997 I had my first panic attack. All I could think about was my heart. The short version of the story is that I ended up in the emergency room of a local hospital. One wise doctor asked me if I had ever seen a psychologist after my afib problems and cardio version a year or so ago. No, because nobody told me about the psychological effects such a dramatic incident could have on a 24-year-old person in the prime of his life.
Then a big roller coaster of emotions and fears consumed me, and darkened my life for about 6-8 months. I can remember that in one week I saw three doctors, my GP, a homeopath and a cardiologist and all of them said there was nothing wrong with me. Then as if sent from above I went to see a psychiatrist. He helped me to understand that I cannot be in control all the time.That I will have to die some day, but that it may not be very soon and I may still have a very long and full life before that happens.
I am a reborn Christian and believe in life after death, but if death gets you by the throat (must read heart) and squeezes life and breath out of you, you know that you do not really want to die now. So fear was my closest companion for a while. Enough said, many of you afibbers will know what I mean.
Then a breakthrough, the wet socks episode (more about this later HERE).
My life went on, children, work, a motorbike accident, car accident and all those interesting stuff.
Then in 2002 Dr Jordaan (yes in my language it is Jordaan and not Jordan) told me that my heart was out of rhythm, but because of the medication I could not really feel it this time, and he suggested that I see another doctor (cardiologist). This has been the only time that I had heart arrhythmia that I could not feel.
My new doctor, Ian Roscher did 3 cardio version’s on me in 2002, and told me that I had big problems if my heart went out of sinus every time.I was also drinking a cocktail of medicines by that stage. So like before I did what I knew I could do and that was pray. The answer did not come in the format that I expected, but it did come and I had hope again.
HEART ARRHYTHMIA ABLATION
At the beginning of 2003 I went to Pretoria for an ablation. Dr Janse van Rensburg was reportedly only one of 4 ablation specialists in South Africa at that stage. He told me that he was only 70% successful because one of my heart chambers was too big (I think it is the right atrium) and his instrument was too short to do it 100%.
After the ablation my heart did go afib a few times, I got it back, once with prayer (I have faith in God), twice with cardio version and while playing squash (similar to racket ball) I have also felt it coming and going.
I am very blessed to also see Prof Stephen Brown a Paediatric Cardiologist from time to time. Because I was born with Tetralogy of Fallot he is in a much better position to understand the physiology of my heart,and why my atrium(I think it is the right one) is so much bigger than a normal heart.
EXERCISE FOR MY HEART ARRHYTHMIA
I keep myself fit by doing mountain biking, road cycling, jogging and other exercises at home. I try to eat right and keep stress to the minimum.
Now I am afib free for 2 years and keep an eye on what I eat, drink and what I do or not do.
I wanted to tell my story, document what I have learned and help other people with my story and discoveries. My heart arrhythmia journey can help you.
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Good day mate!
I am glad you are doing so well!
Thank you for your blog and what you mean to other people with the same condition.
you are a blessing in disguise.
God bless you everday.
Hallo Christo (Whitey)
Thank you for the kind words, I am blessed to be a blessing.
Janco
Dear Janco,
I can’t tell you how important you have become to me reading your discussion of the 10 ectopic heartbeat vagus nerve palpitations tips for you. I am now a year following an ablation and was without arrhythmia for 6 months. Over the past months I have had times of really bad atrial premature beats. These have been assumed to be recurrent AFIB and may or may not be. When they come I have blurred vision, become cold and shiver in normal temperature, feel bloated without hunger and occasionally have difficulty voiding. I have known that this was related to the autonomic nervous system but it is not known in the medical literature. I would like to know where you found the references to ectopic beats and vagal nerve dysfunction as it is clea that that is the problem. 15 years ago I had a gastric bypass and the surgery relates to the vagus nerve at the junction of the esophagus to the stomach. It explains everything. since reading your discussion I have spent a significant amount of time doing a Pubmed search and can find nothing about this issue. I now understand myself and have a strategy to help myself. Thank you. I am considering doing a case report for the medical literature if you can let me know how you figured it out. I am a retired neurosurgeon and have dealt with dysautonomia related to the brainstem but not to the more distal parts of the vagus nerve. I greatly appreciate you.
Hal
Dear Hal
Thank you for your kind words.
Unfortunately, there is not much research on the connection between the “irritable” vagus nerve dysfunction and ectopic beats. Much of it is anecdotal and therefore not scientific. Not much time and effort is spent on it, maybe because Ectopics are “benign”.
I will go through my notes to get more info, but here is what I have now.
“The significant correlation between the number of VPBs and a vagally mediated parameter underlines the triggering/permitting effect of parasympathetic tone on ventricular ectopy.”
“Our data suggest that in patients with frequent VPBs and absence of structural heart disease enhanced vagal control is involved and could play a role in the increase of ventricular ectopic activity.”
Autonomic influences related to frequent ventricular premature beats in patients without structural heart disease.
from https://www.ncbi.nlm.nih.gov/pubmed/29995813
“Decades of research has contributed to a better understanding of the anatomy and physiology of cardiac autonomic nervous system and provided evidence supporting the relationship of autonomic tone to clinically significant arrhythmias.”
Role of the autonomic nervous system in modulating cardiac arrhythmias.
https://www.ncbi.nlm.nih.gov/pubmed/24625726
“Our study showed that the sympathetic nervous system is dominant in young patients with VEBs and without significant comorbidities”
https://www.ncbi.nlm.nih.gov/pubmed/25039863
“AB-VNS significantly reduced the occurrence of spontaneous ventricular arrhythmias, including isolated premature ventricular complexes”
https://www.ncbi.nlm.nih.gov/pubmed/30552763
“Vagally mediated ventricular fibrillation initiated by premature ventricular complexes”
https://www.ncbi.nlm.nih.gov/pubmed/18223543
“These data suggest that strongly increased vagal tone can suppress PVC’s in a significant percentage of such patients.”
https://www.ncbi.nlm.nih.gov/pubmed/48331. Does this mean that decreased vagal tone will automatically “increase” PVC’s?
I know that above may not be conclusive evidence, but there is definitely a link, and I will continue my search.
What are your thoughts?
Hello, thanks for the description.
I have been the sufferer of vpc since last one year. I feel a pinch whenever I get VPC. This has started last year when I had heart attack. Since the heart is partially damaged I get those beats as per the doc. I did under go ablation but not 100 percent success. Now my vpc records 4 percent indicating approx 3000 vpc per day. Medication doesn’t really help me to good extent. Hard to live such a life. Hoping for a new ray of light in future
Hi Praveen
Just keep your spirit up and keep on hoping!
I have had a few situations where I thought things were just getting worse, but I kept the faith, prayed and things changed.
Not always the way I wanted and not always immediately, but still able to live a full and exciting life.
Hey Janco, Thanks for a great blog. You have a great attitude bud. I’m a runner going for my third ablation battling a bit, not because of meds etc, but because I run and don’t want to give it up. Selfish I know. I’m looking to test Magnesium Taurate … any idea where we can get it in this country? Thanks!
“Then a breakthrough, the wet socks episode (more about this later).”
You never mention this again later.
I mentioned it in a blog post: TOF, AFIB heartbeat and Anxiety journey, you can read it at https://www.myafibheart.com/tof-afib-heartbeat-and-anxiety-journey/#more-637, it is under the “AFIB heartbeat and Anxiety was real!” heading.
Thx for letting me know, I just thought I could not cram everything into that story of mine. There are a few other things that I have experienced in my heart journey that I still need to write about. I think I will put a permanent link to that post in my “My heart arrhythmia Story”
Hi! Thanks for sharing your story and for being so open. I’m a newly diagnosed afibber (33yo M athletic) in North Carolina in the United States. I’ve been struggling with coming to terms with what my life might be like going forward. Your description of talking with a psychiatrist sounds hugely beneficial and I might consider that myself. I feel like I’m stuck in this dark scared place most days now. Just wanted to say I really appreciate you sharing and helping this new afibber.
Hi Patric
Thank you very much for the comment.
I really appreciate it.
I’ve also been in some dark places in my mind.
I believe if you don’t have hope you will not be able to live a full life.
I have lived (and still living) a full life, even with an AFIB sword hanging over my head.
Hi. Thanks a lot for sharing your story, I’m also I’ve born with TOF and I’m 27 years old male , i have pacemaker and recently the doctor said i have to repair or replace my Pulmonary valve, and im going to marry but I’m afraid and I’m being anxiety, And my girlfriend is also afraid of my heart problem, so I want to ask if i can do sex like anyone? By the way I’m also a sport man i do run and indoor cycling 3-4 every week and my fitness is so perfect
Hi Sami
It’s interesting that someone asked me that just after I got married, long ago. I think the safest option is to first talk to your doctor, but if you are already doing sport I cannot see that it will be a problem. I have 2 children, and I have never had any heart problems after sex.
janco
I tried to email you but
myafibheart.com comes back no such address. not deliverable
please advise
Hi Julianne
There must be a problem with that address.
You can use jpdv@webmail.co.za
Janco
I have recorded your jpdv@webmail.co.za and will use it in future.
I am trying to drink 6-8 glasses of water, rooibos tea and other liquids per day as staying truly hydrated seems to really help too with pac’s.
also this added liquid really helps with regular bowel movements which seems to have something to do with keeping the vagus nerve happy. I have started making my own kefir as well and consume about 1 cup of that daily. excellent for the gut and overall health or so I’m told. high fibre diet really good too.
your email address myafibheart.com
cannot be delivered. comes back not recognized the address
julesbaron3@gmail.com
I have recorded your jpdv@webmail.co.za and will use it in future.
I am trying to drink 6-8 glasses of water, rooibos tea and other liquids per day as staying truly hydrated seems to really help too with pac’s.
also this added liquid really helps with regular bowel movements which seems to have something to do with keeping the vagus nerve happy. I have started making my own kefir as well and consume about 1 cup of that daily. excellent for the gut and overall health or so I’m told. high fibre diet really good too.
A very informative website now that Atrial Fibrillation has become part of my life after a December 2020 hospital stay due to a 172 bpm heart rate, swelling of the legs and abdomen, CHF, and my body accumulating 21 liters of fluid putting pressure on the liver, kidneys, and other internal organs. Being a 59 yr. old active male, I’d have to say that it was quite a “psychological shock” when everything happened. Though the doctors could not say for certain why my heart went into A-fib. and started the chain reaction of body shutdown events (a heart catherization revealed zero blockages or valve discrepancies), I believe the entire situation was caused by weeks / months of prolonged high levels of mental stress causing my “situational anxiety” to stay hyped-up on adrenalin overdrive. Once the A-fib heart rate was under control with Metoprolol (control heart rate), Eliquis (blood thinner), Spironolactone (regulates potassium retention), and Furosemide (diuretic) both liver counts and kidney numbers returned to normal. Having never been on any medications for the past 30 yrs., it took my body a few days to adjust to the meds. and for the body to adapt. to where I have no limitations that I am aware of whether at work lifting pieces of steel in a warehouse environment or walking my dogs 5 miles on a trail. With all that I have read on this site and others, I have made some observations:
– I’m wondering if mental stress is a major contributor to A-fib. perhaps affecting the Vagal nerve that regulates the heart rhythm during a “fight or flight” response situation. I was in this condition for weeks with my head pounding every night which I believe was the cause of my body failing.
– I saw a You Tube video by a chiropractor making a connection between auto accidents affecting the Vagal Nerve and an increase in those patients going into A-fib. making me think about a bad case of whiplash that I incurred after an auto accident at age 17 which may be haunting me years later
– When in A-fib. I can feel the relief from giving myself a “Sinus Massage” by massaging the side / back of the neck near the Vagal Nerve. There is a video on this on You Tube by a Cardiologist.
– While in the hospital I kept hearing that my Magnesium levels were low, so I was given an IV with Magnesium. I have since started taking Magnesium supplements 2X daily for a total of 400mg/day
– I’ve also wondered if A-fib is some sort of autoimmune disease where the body “attacks itself” by corrupting the heart’s normal sinus rhythm in anticipation of a stress event that is not present and does not need an accelerated heart rate to respond to the situation.
– I had my first Cardioversion on 2/10/2021, but unfortunately went back into A-fib. on 2/22/2021 during the night before or that morning. Sensing how I felt in both modes (sinus & A-fib.), I believe that I might have been out of rhythm for years or decades, confusing the elevated heart rate of “situational high blood pressure / situational anxiety” with Atrial Fibrillation. I’ll probably try to get a second cardioversion to see what happens, but am not too sure about getting a heart ablation. If it’s true that I’ve been in A-fib for years or decades, I might be better off trying to find the root cause of the incorrect heart rhythm.
– Exercise: Based on the premise that the heart is a muscle, I have started getting back into moderated weight training to build up my body and heart to regain some or all of the strength that was lost while in decline due to A-Fib. creating CHF (Congestive Heart Failure). I have not noticed any negative effects of weight training /exercising post-hospital with the possible exception of my heart rate being restricted by the 50 mg. 2X/day of Metoprolol.
– Throughout this whole ordeal, I feel that once the underlying cause has been corrected, the body then begins to heal itself. Once the 21 liters of excess fluid was removed from my body through diuretic and normal bathroom visits, the pressure was off my stomach and my appetite returned (ate like a horse for days), and my kidney and liver returned to normal operation eliminating the discussions of permanent damage. I also noticed that it took a few days for my body to adjust to being back in normal sinus rhythm, and then to readjust to being back in a version of A-fib that is more of an irregular 60 – 80 bpm heartbeat than a rapid “beating out of my chest” feeling faint out of breath A-fib.
– Sorry this is so long, but I hope others will benefit from my journal
– Best Regards, Jeff
Hi Jeff
Yes, that was long, but also very informative and interesting.
I have been in the Police Force for 31 years with AFIB coming and going. Last year my heart went out 5 times and I got my 2nd ablation in October 2020.
The previous 3-4 years were very stressful, but last year not that much. I never thought about stress being a factor, but if you think about it people get heart attacks from stress in my opinion, so why not AFIB?
My cardiologist never talked about stress. He just wanted my heart back in rhythm.
I saw a psychiatrist in November and he has booked me off for 6 months. His opinion is that AFIB can definitely be stress-related. I have not done deep research into it but I have read a few articles about it.
I am planning to see a chiropractor to hear what her opinion is.
It will be interesting to hear what other people’s experience is with stress and AFIB.
If you have any other comments please send them and check out my YouTube channel. I have heart stuff and some other videos.
https://www.youtube.com/channel/UCS0n8GAwqetIM_e0BvzwWsg
https://www.youtube.com/watch?v=joOBaODHPd8
https://www.youtube.com/watch?v=lbKTAbcN_pw
Janco
How do you learn to not be terrified of the next event? There were 8 years between episodes 1 and 2 and only 15 months between 2 and 3. I was cardioverted each time. I struggle with anxiety and now this latest incident has me terrified to even leave the house. Thank you for sharing your story!
Hi Lara
I concentrate on what I have when I have it. I try and focus my thoughts on the present and also analyze what I’m thinking about (thoughtarrest).
It’s not easy!
I had a stretch of about 4 + years and thought I was “healed”. Then the AFIB came back slowly and then in 2020 (keep in mind Covid was also there) I had 5 events. It ended in me having my 2nd ablation.
I went for treatment at a psychologist and psychiatrist, it helps.
My biggest “support” is that I believe that Jesus Christ died for me long ago and because He rose from the grave I will too. That and my Christian faith, church, community, family, and friends keep me going.
Keep on fighting the good fight, seek help and support.
Thank you for the question.
Janco