My story in solving AF

[MickMc]

It's been some time since I last contributed to this forum, but I thought it may be informative to others to read how I have resolved my AF problems and what can be missed during diagnosis.  In October 2009, I got off an airplane from Australia to Hong Kong and found it was difficult for me to breath while collecting my luggage - there was some chest tightness but no pain.  I was 48 years old at the time and had been very active with senior level contact sports until the age of 32, but hadn't looked after myself since then - working long hours, drinking lots of coffee and alchocol, and worst of all I smoked.  I was probably only 5kg overweight (11 lbs).  Furtunately for me, another passenger advised me to go to a nearby private hospital, where I was admitted for 5 days.  I was diagnosed with Ischemic Heart Disease (IHD) causing heart failure. My heart was in AF with a consistent beat of 160, was twice the normal size, and left ventrical had an EF of only 31%.  They said I had a fixed perfusion defect over the heart apex and distal lateral segment which was non-reversible (basically they said part of my heart was dead due to a heart attack, which was later proven to be an incorrect diagnosis). They put me on Plavix, Carvedilol, Lasix and Digoxin.

I immediately flew back to Australia and was able to see a well respected Cardiologist the following day. I had an Angiogram which proved I had not had a heart attack and none of my heart was dead, and did not have IDH.  His diagnosis was that I had Congestive Cardiac Failue due to underlying AF and atrial flutter, and if these were controlled then it was fully reversible. I was also given a TOE and Electric Cardioversion to bring it back in beat.

By June 2010 the EF was fully restored but I still had the AF and flutter issues. As it was still skipping out of beat every few days, I was put on Warfarin and Amiodarome (a drug that caused purple feet and lots of pain in my legs)and taken off Plavix and Lasix.

I then had an Ablation in August 2010 to bring my heart back in beat again. This fixed the atrial flutter.

I then managed to see another cardiologist for a second opinion, who was a very well respected teaching cardiologist.  Other than perhaps changing one of the drugs, he agreed with what had been done so far and the plan for getting it fixed.... and he wasn't offended I got a second opinion.  In October 2010, I was finally taken off Amiodarone, and in late November to try to finally fix the AF I had a Pulminary Vein Isolation (PVI).  This is a major operation where they enter the heart from the right side and through the heart wall into the left side to burn (by freezing) around each of the four pulminary veins to stop any rougue electricity from entering the heart.  It took two cardiologists six hours to complete.  My beat was back to 60 and I felt great.

But then in Jan 2011, it went out to a consistent 120 beats and I was out of breath again and feeling sick. So I had another electric cardioversion in February 2011...and back to 60 beats. I was now only on Carvedilol, Tambacor and Warfarin.  All was good and in April 2011 I was finally taken of Warfarin and on to asparin.

Then in October 2011 the flutter started again and I was put onto Pradaxa (a replacement for Warfarin).  I then had another Ablation.  A full blood test then picked-up that I had hyperthyroidism which was causing my heart to race (one of the symptoms of hyperthyroidism)...what bad luck!  I immediately suspected this was the problem all along, but that was not the case once I looked back through the previous blood tests.  They do a test called TSH, which I have been told can be incorrect in 10% of tests.  So if a thyroid problem is suspected you get a T3/T4 test.  I also had  a nuclear iodine test and ultrasound to confirm the diagnosis and that there was no cancer. I was then put on Neo-Mercazole to fix the excess throid hormones.

Now I feel great and back to moderate/heavy exercise.  Heart hasn't missed a beat for 3 months and I've even had a few drinks over Christmas.  While I still have a problem with my thyroid (suspected to be a virus which will eventually burn out), I feel like I am now on top of my health and can look forward to getting back to work.... and I don't have to see my Cardiologist now for 6 months!

Lessons learned over the past 26 months:
Number 1 lesson...don't smoke!  I feel 1000% better for not smoking.
Sit down with your Cardiologist and plan each of the steps you need to go through - because it may require multiple operations and years to resolve - so you are prepared.
If you can, get a second opinion, as there can be incorrect diagnosis.
Get a thorough yearly blood test.
Reduce or remove caffeine from your diet during treatment.
Make sure your teeth and gums are kept healthy as heart problems will cause teeth/gum problems.
Stay positive, these things can be controlled and even reversed.

All the best

[dwave]

Wow that is some story. Here is a small bit of mine. I am a surfer and I had VT in the water in mexico. Blacked out and woke up under water. 3 months latter VT in the water in southern California. Stents than a difibulater than ablation to stop AF because my difibulator went off when I was held under water for some time.  3 weeks after ablation I have severe Angina and I am noticing some asophagus issues. The next plan is another angio to see whats "cooking". The angina pain is centered in the chest and goes up the carotid arterys in the neck, sometimes to the jaw, scarry! Can't surf, run, or hardly walk without pain. Pain after ablation perhaps they melted my stents! This is like remodeling an old bathroom, fix the toilet than the sink starts leaking.

[MickMc]

Thanks for all the positive comments.  The goal to me was to be able to get back to doing some exercise, because it gives me the opportunity to strengthen my heart and do what I should have been doing for the past 20 years. At first I found it difficult to walk up the stairs of my house, but now I can walk/run up to 6-7 kms (4 miles).  I was also fortunate to be able to take time out from work to get it fixed.

Hope you all have an improved 2012 and I'll be sure to keep you posted if things change.

and Bigkev, sorry mate, while I do like to watch a bit of Aussie Rules, I prefer to play Rugby Union.  cheers

[MaryLL]

Thank you for sharing your story. I came on tonight because I was feeling low about my own AF. I've had it about 12 years, had an ablation in 5/10. It was not entirely successful after 10 hours. I have had more episodes in the 19.5 months since. I am scheduled for a cryoablation in February of 2012.
I've been having frequent episodes and feeling sorry for myself for having to have my life interrupted by them. I love my work, but never know if I'll have to go in for a cardioversion in the middle of the night.
It feels better to know I'm not alone and that AF is a process. I look forward to the next ablation and hope it is successful.
Again, thank you for sharing and I wish the best for you all,
MaryLL.

[Red_Star]

Welcome to misdiagnosis! Been there, done that lol.  A single TSH test can miss a thyroid condition especially hypothyroidism.

"The consensus of thyroidologists decided in 1973 that the TSH (lab) was the blood test they had been looking for all through the years. This was about two years after I started practice. Having been taught how to diagnose hypothyroid conditions clinically, I was in a position to watch to see what the relation of the TSH was to the onset of hypothyroidism. What I found was many people would develop classic signs and symptoms of hypothyroidism but the TSH was ever so slow to become abnormal, rise and confirm the clinical diagnosis. Sometimes it never did. Finally I began treating patients with hypothyroid in the normal manner I was taught. I could not see why I had to wait for the TSH to rise for me to be able to treat them." - Dr. David Derry

[itdood]

Thanks for posting, it's always nice to hear from someone that got to the root cause.  It's a difficult process.

[Jerry_NJ]

Thanks, it is always good to read about something working.  I think most people who don't have problems getting heart rhythm issues resolved (many possibilities here, including living with it) don't come here to tell us how they succeeded.

That said, you really had to go through a lot and your story kept me in suspense to the end.  Noting it is a complex story, the ending seems to my reading to say all is well at this point, Great !  Many Happy New Years.

The down side of atrial fibrillation is it tends to come back.  I have had several periods of normal sinus rhythm, some lasting 1.5 years, with the aid of medications following electrocardioversions.  I am currently just treating symptoms and reducing clotting risk and living with permanent AFib.  But, I am 20 years your senior and the other (bad) thing to observe, is one can expect that all being equal (not a change in life style or a new cure) one wears out, heart included, as they age.  AFib is more prevalent in older people, and in tall people, and in athletic (extreme?) people.  I have all three problems, except my athletic past would not be considered extreme by most.

Again, thanks to letting us know the ups/downs/successes you have experienced.  I hope those considering getting an ablation read you post to put more perspective on the process... can work, but not 100% effective.

[bigkev414]

Great to hear you're back on track mate; what a trip. Just shows that you have to get more than one opinion and keep trying. Easy to say, not so easy to do. You've obviously got a lot of 'ticker' (no pun intended - well, OK it was intended) and your story will help us all to keep going.
The only thing I would like to clarify is your 'contact sport' experience when you were young; obviously very fit and no problems then? Please don't ruin it all and tell us that it WASN'T our real game -
Good luck - hope you keep on going well. Regards from an old Magpie (SANFL)

[rilesnic]

Wow...what a ride! I'm so glad you're feeling better. Thanks for sharing your story....maybe there is hope for us after all :)