How has my TOF, AFIB heartbeat and Anxiety made my life “interesting”?
I have this urge to catalog my TOF(Tetralogy of Fallot), AFIB heartbeat and Anxiety journey. Why?……Hmmm. Just to see it there. On “paper” or rather a screen. To remind me to be grateful to so many people, to know anything is possible. To thank God.
So I write because it gives me perspective, insight and possibly hope to others too. In this journey, there were a few times that I thought THIS IS IT!! No hope! But every time there was something. When I saw how my heart made my shirt bounce and felt like I was going to die, but miraculously I lived! (At age 23) It made me grateful for everything. Could my curse be a blessing?
I use Bluehost to host my blog and it helps me tremendously to “see” what has happened in my life.
My experience with TOF, AFIB heartbeat and Anxiety will also help you on your journey with AFIB and anxiety.
During this journey so far I’ve hit a few walls. Do doors open? Sometimes walls crumble and doors open YES!.
Some walls that were there: Not much oxygen during the first 5 years of my life.
That I might not develop so good (my TOF operation was only done at 5 years old). The Tetralogy operation was a new procedure in South Africa and not that commonly done, not just in SA but the world. The long procedure, intense, precise and exhausting(and that is just the doctors and team I’m talking about).
By the grace of God, there was no infection. Anyone will tell you that with open heart surgery infection can be catastrophic.
Then AFIB, with all the tests, medicines, cardioversion’s, stress, worry, managing physical work with it sometimes, but also breakthrough’s.
The big “A” Anxiety and conquering it.
The start of Tetralogy of Fallot(TOF).
1971 – Born in South Africa with Tetralogy of Fallot, but my mother and doctors did not know it.
1976 – Tetralogy of Fallot repair operation was done in Bloemfontein South Africa by Dr. Meyer, Verwoerd, and another doctor. Dr. Meyer studied under the brilliant Dr. Barnard who did the first heart transplant in the world.
1977 to 1988 – I had some heartbeat issues, but was never hospitalized for it as far as I can remember. I had some Ectopic heartbeat or AFIB spells but I was never “in” AFIB, that I know of. I heard from my mother that the doctors said that if I did not have the operation I would only live to about 21 years old. So somewhere in my head, I focused on that 21 years old, although I did have the operation to correct everything.
What is going on?…AFIB?
1989 – Joined the Police service and underwent strenuous physical training, very little sleep and some stressful moments. Did I mention pain? I had 2 boils(carbuncles). One was removed surgically and both left marks that look like bullet wounds.
1992 – I drank anti-malaria medication and the rollercoaster began. Many doctor visits, tests, and lots of different types and combinations of medicines. Less of this, more of that, and everything in-between. On 1993/01/23 I had an AFIB attack, the whole thing. Shortness of breath, dizziness, fainting feeling and a heart going mad! At the hospital my heartbeat was 220 bpm and at times even more. Yes, I thought I was going to die.
1993 – 1996 I met Dr. Jordaan and he gave me lot’s of hope and also gave me my first 2 cardioversions. It appeared that everything was under control and although I was scared that my heart would make some sort of somersault I was fine, but…
That’s not the whole story.
AFIB heartbeat and anxiety.
My AFIB was actually under control but I was not able to understand what was going to hit me next? My AFIB heartbeat and anxiety was going to join forces! I was playing squash (2-3 times a week) and relatively fit.
1997/02/17 – In hospital ER with a panic attack, I thought it was my heart.
1997/02/24 – I thought I was going to die. Saw my GP, a homeopath, and cardiologist all in one week, and the verdict… there was absolutely nothing wrong with my heart.
1997/03/14 -I visited a psychiatrist for the first time. He gave me medication to cope with the anxiety and panic attacks. Thank you!
I visited him a few times. He also sent me to see a psychologist who specializes in death, how people deal with it, experience it and how it is part of life. Strange topic but very informative.
1997/04/17 -I visited a psychologist. She helped me with breathing technics and also how to handle my thoughts and fears. I did a few sessions with her and it helped me a lot to deal with anxiety, fear, and panic. I also did my own research on the topic. A few years later I developed my own Thoughtarrest technique.
AFIB heartbeat and Anxiety was real!
1997 – Seeing all the experts, during this year, did not mean that I was cured of all anxiety fear and panic. Far from it. Going to sleep was a problem. Eating was a problem(I thought food would get stuck in my throat). Doing sport or exercise was a problem. Breathing too much or too little was a problem. Being at work was a problem – panic.
Almost everything was a PROBLEM – PANIC! It was a tough year. I did not think there was any hope or future.
I cannot remember if it was in 1998, but I had my Sweaty Socks Breakthrough. An epiphany of sorts! I was sick and tired of being sick and tired! Panic, fear, and anxiety were getting the better of me. I did not recognize it fully but it was stealing life from me. Slowly but surely.
I was scared of doing many things. Like sport, eating, sleeping, or breathing too little. My AFIB heartbeat and anxiety was getting to me!
Sweaty socks epiphany.
I did not play squash for a long time because I was scared! My doctor and all the others that I ran to for help said I was fine, and my heart was fine. But my head was not fine, my thoughts were pictures of me getting a heart attack or my heart going to 500 bpm.
So a squash friend called me one night and said they needed me to play a game for their team. It was a very important league game. I did not have to win, I only had to go to court and play the game. He had called all the other possible players and they were not available.
I thought I was safe. I did not have any squash gear or clothes with me. I said no. He called again. There was no other choice and he(Johan) pleaded with me. I had to do it for the team.
I confront anxiety…walk into fear.
A few minutes later I was on the court. In my mind, I thought(just go on the court hit a few balls do not run and come off). I did not have shoes or socks! I was safe again, I would not put my life in danger, or so I thought.
Johan gave me his wet socks and shoes.
Anyone who has played squash or racquetball knows you sweat a LOT! So I put on the socks and shoes and was on the court. In some sort of way, I was also facing the fear of dying. I had enough of being scared. I thought what will happen will happen.
I did run a bit but lost. My AFIB heartbeat and Anxiety did not kill me!
It was the best loss of my life! Slowly it dawned on me that I played, but was still alive. It was a breakthrough. I started playing squash again from that day. My AFIB heartbeat and anxiety was slowly but surely divorcing each other. There were still anxiety attacks but they became less extreme and further apart. One of the things that I did was the practice of using my Thoughtarrest technic.
Anxiety under control, AFIB not.
2000/01/14 – Motorbike accident.
2001/05/29 – Car accident with a head injury but no permanent damage.
2001/06/06 – My father passed away.
2002/01/15 – I visit Dr. Jordaan and he tells me that my heart is out of rhythm. I did not know it, or felt it. I am referred to Dr. Roscher(cardiologist).
2002/02/0? – Dr. Roscher does a cardioversion.
2002/05/02 – Dr. Roscher does another cardioversion. Ablation was never mentioned.
2002/09/12 – Dr. Roscher does another cardioversion. I went out of rhythm while I was watching the 9/11 commemoration on TV.
AFIB heartbeat was getting worse!
There was a period of about 3-4 months that I was very hopeless and down. It looked like my heart was going haywire and the doctors could not do much about it. Was my AFIB heartbeat and Anxiety going to win, and destroy me?
2003/02/06 – I think I was cardioverted again and my cardiologist said I could not go on like that. I was drinking 2 or 3 pills in the morning and evening and on warfarin. This meant I had to go for my INR(International Normalized Ratio) blood test every few days, then every week until my INR was at the right level, an ablation was mentioned, but not even considered.
The doctor said he did not even think of an ablation because it was usually only done on a physiological “unscarred” heart. Later he said that he spoke to an Electrophysiologist and although there were no guarantees we should give it a try.
Is there a ray of hope?
2003/03/20 – An ablation was done on me at the Heart Hospital in Pretoria by Dr. Hendrik Janse van Rensburg(an excellent doctor). He explained everything in detail and even drew a few pictures. Thx to Lalie and Esme for letting me stay with you, before and after the procedure.
He Dr. Janse van Rensburg, said that the ablation was only 70% successful because my atrium was too enlarged and his catheter too short. I was AFIB free for more than 2 years, after this.
2005/10/14 -My heart goes out of rhythm, I cannot remember why or from what? Pastor Syd from our church comes and prays for me and when I opened my eyes, after the prayer, the heart monitor showed that I was back in rhythm. My cardiologist puts me on 2,5mg of Bisoprolol and 100mg of Asprin after this episode.
2009/09/27 – My cardiologist Dr. Roscher says that my left ventricular muscle is 6cm thick and he is not happy with that. Previously it was 5,4cm thick.
2009/10/? – I visit Dr. Steven Brown, a pediatric cardiologist and he says he is more concerned about my right atrium. Dr. Brown is an expert on TOF(tetralogy of Fallot), and he also understands what the physiological changes are that take place in a TOF heart.
2009/10/06 – I go for an angiogram and everything is fine.
2010/05/19 – Me and my wife visit Dr. Verwoerd(still practicing at 75years old, but not doing operations anymore). He was one of the 3 surgeons that operated on me in 1976. He was very modest and says that he did not do very much. My visit to him was to “show” myself to him and to say thank you for their excellent workmanship on me. He said that one of the other surgeons who performed the operation on me studied under Dr. Chris Barnard. He apparently meticulously wrote down all his procedures. I visited the Dr. Chris Barnard Heart Museum in Cape Town not that long ago.
Type of sport and stimulants are my triggers -that’s what I think.
2010/08/10-16 – My heart rhythm went out twice in one week after I played squash (I was not playing that regularly anymore). It went back into sinus rhythm on its own after a short while, and I did not even have to visit the doctor.
2011/06/02 – I was cardioverted on Thursday. But I think I know the reason why my heart went out.
On the previous Monday, I did a mountain bike training ride of 65km and drank of someone else’s caffeine-filled energy drink. I know that was dumb! But sometimes it’s the best(or only) way to learn. That evening I played an hour-long squash match, and on Tuesday morning, my heart went out of rhythm.
2013/10/29 – I was cardioverted on Tuesday, but my rhythm already went out on the previous Monday. I was at the beginning of an exam week and if I did not write the exams, there was a possibility that I would have to re-do the whole year. Decision TIME!
I spoke to my cardiologist and he put me on Pradaxa for the week, during the exam time. The reason for me going into AFIB? We had a party, there were shooters. I stayed up until about 01:30 and went for a 40km Mountain bike training ride at 06:00 on Saturday morning. On the Monday morning while I was studying with a small study group I just felt it and knew! Here it is. What now? Write the exams or do the cardioversion?
Dehydration could also have played a part in this AFIB episode.
My cardiologist took all the information into consideration and said the cardioversion could wait for a week. I was then put on a Cordarone IV drip for a day but my heart did not go back into sinus rhythm and I had to be cardioverted.
After the cardioversion, I had extreme acid reflux and had to go to the pharmacist to get meds to help me through it. It was over after a few days. This was the worst acid reflux I ever had after a cardioversion.
That’s my story..what’s yours?
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So, for now, I have been AFIB free for more than 4 years. I believe it’s a combination of the ablation, knowing my triggers, doing the right type of “heart” sport(cycling), drinking bisoprolol, regular check-ups and grace.
Can AFIB heartbeat and Anxiety be managed, controlled or even be conquered? Yes, I believe so.