Ultrarunner fighting Atrial Fibrilation (AF)

This blog has pretty much always been about running ultras, mostly Hardrock. It still is but now it is also about running with AF. I was forced to miss Hardrock in 2011 due to my AF but my long term goal was to get back to a level where I could enter the lottery for 2012. And hopefully help any other runners with AF who stumble upon this site. I never made it into Hardrock in 2012, or 2013, or 2014. I didn't have a qual for 2015. I ran Fatdog in Canada instead. That was tough. Now back to Hardrock.

The heart problems all started back on May 25: http://howmanysleeps.blogspot.com/2011/05/out-of-hardrock.html

Wednesday, August 31, 2011

Countdown is over.

Last week I went through pre-admissions in preparation for my ablation. This is the stuff you don't think about but important for anyone facing this process.

I spent the whole day at the hospital having tests and answering questions. There is so much involved in getting ready. It is always a very humbling being a patient. After working as a health professional for over 30 years I still find being a patient very confronting. There is so much you don't think of. You are at your most vulnerable.

First up was the CT scan. This was of my chest with a view to providing a 3D model of my heart to help plan the approach and get an overview of my anatomy. After a long wait I found myself on the table with a cannula in my arm being hooked up to a pressure injector. This would inject a bolus of contrast that would fill my heart during the scan to outline the chambers and major vessels. I have performed and seen hundreds of CT scans involving the injecting of contrast media. But this was the first time I was on the receiving end. The standard warning goes something like: you will get a warm sensation, you might get a funny taste in your mouth and some people feel like they have wet themselves. Wet themselves? Holy crap, I thought someone had fired up a bunsen burner and applied it to my scrotum!

A couple of hours later I was in the Pre-Admissions clinic. After filling out one form I was whisked away through a series of back corridors and taken to the Professors private rooms in an adjacent building. After more waiting I had a brief consult with him. He was very reassuring and succinct.

Back to Pre-Admissions. A nurse took me into a very small room and did an ECG, check my blood pressure and temperature. Then a heap of questions.

Back to the waiting room.

Then the cardiology liaison coordinator (the lovely lady that got me the surgery date) took me to another room for a lengthy questionnaire. It was amazing how well she knew the answers to all the questions she was asking. Clearly I have classic presentation.

Next the young Cardiologist who will be assisting came and got me to swallow this ginormous pill with 2 cameras in it. This sent real time images to his laptop so we could see my oesophagus. This would be repeated after the ablation as part of a study into the damage caused by the scope down my throat during the surgery. The images were fascinating but I could feel the pill all the way down until it plopped into my stomach.

Finally another round of questions with the first nurse of the day and I was done. And very tired.


I went to a friends birthday afternoon tea on the weekend. She is a close friend with terminal cancer and in a very bad way. It is the saddest situation. A lot of my really old friends were there. I got talking to one lady I went through school with but have only seen a handful of times in the 30 years since then. Out of the blue she said to me "I have the same thing as you". AF? Yes. One of my daughters had been talking to her and told her what I had. I asked her for how long? 10 years! My god, I could never survive this for 10 years. I could see in her eyes the same frustration and pain that this illness brings. I am not sure whether it was the heightened emotions of the afternoon or just that sympathy you feel for a kindred spirit but my heart went out to her. As runners we talk endlessly about how hard some race was, how tough we were, how strong we have to be. Sometimes we lose perspective. Here was true strength. To carry on a normal life with the medication constantly dragging you down, the intermittent episodes throwing you into chaos, trips to the ED and cardioversions under anaesthetic and the continual fear of an attack. For 10 years? I have gone 5 months and are at my wits end. Apparently hers is not amenable to treatment with ablation. I was humbled yet again and given more perspective. And then there was my friend who doesn't have the luxury of any potential cure. That is the ultimate reality check.

Today was the last day before my ablation. I have been off the medication for 6 days. I was surprised how stable my heart was initially. But today was a shocker. I have been suffering arrhythmia all day. Tonight when I decided I was going for my last run for who knows how long, my heartrate was 135 bpm at rest. And I could feel it. But I ran. Very slow at first as I always do. But gradually when I realised my heartrate was already out of control I really wound it up. It was tough but felt good to cut loose. It may sound a little irresponsible but I needed to run. I am learning the hard way that you don't always get a second chance at things. I no longer have a bucket list. If there is something I want to do it is on my calendar. At the moment that calendar is all in pencil while I try to regain control of my heart but it is full nonetheless.

Lets start by seeing what tomorrow brings.

Friday, August 26, 2011

Pre-op tests

When is a DNS for a favourite race a good thing? I have had to pull out of my ambitious plan to run the 100km at Glasshouse. It will be just over a week after my surgery so no chance of running it. I hope to still fly up to hang-out and help out on light duties. But this is a good thing because it means I am starting on that long road to hopefully getting my health back.

I go to Melbourne tomorrow to have some tests in preparation for the ablation. The main one is a cardiac CT scan. I have seen plenty of these but to be on the other side of the fence is a little daunting. They will use a 3D reconstructed image of my heart to help plan the approach to the region they need to target. They will also use ultrasound via an oesophageal scope and an image intensifier. These are tools of my trade, although not my area of expertise, but I still don't feel all that comfortable about them.

I have volunteered to participate in 2 clinical studies during the procedure. Although after reading all the consent forms I am not so sure that was such a good idea. But I am a firm supporter of research so could not say no to the request. Besides I was so excited about getting a surgery date they could have asked for my left kidney and I probably would have said yes.

The first one involves swallowing a tiny camera inside a capsule: a pill-cam. It will take pictures of my oesophagus. This will be repeated after the ablation to see what damage the scope does to my oesophagus. Here's hoping not much.

The other involves measuring the levels of my blood gases during the actual procedure, which they would do anyhow. To improve accuracy of the catheter that burns my heart, the anaesthetist will regularly suspend (read stop) my breathing to reduce movement of my heart. If it means more accuracy, hell they can suffocate me. Well perhaps not quite.

Sometimes it is better to be ignorant about what is going on. Someone at work asked me if I wasn't a little worried about all this. I said given the alternative that wasn't even a consideration. I have been hanging on for this treatment since I realized I had a problem. Let's just hope it works.


Sunday, August 21, 2011

Recall

A lifeline. Another phone call. This time from the cardiology department at the public hospital, Royal Melbourne. When Professor Kalman put me on his public waiting list he asked if I could be considered urgent. There was no questioning that from my viewpoint. So I have a new date: September 1. First day of spring. First day of my rehab. I can't describe the sense of relief tinged with a healthy dose of fear. I rushed in to town to get a blood test so I could get things moving. I go for a CT of my heart next friday and stop my medication for the week. That will make for a very interesting week. Countdown has begun. Can't come soon enough.

I ran the Bellarine Rail Trail run today. 34km social run from Queenscliff to Drysdale and return. My wife and one of our dogs ran with me to the half-way point. I had a lot of trouble getting my heart-rate down at the start and we ended up walking lots of the first 5km. This put us well behind everyone but after I stabilised we set a steady pace and even managed to catch a couple of runners before the turnaround.

I ran back on my own and again, after the restart struggled to get my heart rate down. After a couple of kms I settled into a rhythm and started cranking out sub 5minute kms. My heart-rate gradually crept up as my pace increased. over the last 3 kms I was doing 4:30 km/min and my heart -rate kept creeping up. I felt fine and wasn't in arrhythmia like the start of the run, so allowed myself to keep ticking along. The ocean opened up before me. There wasn't a cloud in the blue, blue sky. The paddocks were lush and vivid green. The sun was warm like the first hint of spring. It felt so good to be running again and for a minute there I actually forgot my heart problem and just let my legs do their own thing: run. Sometimes you've just got get out there and do it.




Friday, August 12, 2011

The phone call

I got the call at work today. The young lady on the phone said she was ringing from Professor Kalman's rooms. They had had a cancellation and she knew it was short notice but a spot had opened up on Monday the 15th. (Holy crap that was this Monday!) And she was sorry it was such short notice but did I think I could make it. Yes, yes most definitely. (Are you kidding my whole life has been focussed on getting this surgery.) She went on to describe in detail the course of events necessary over the next few days: Chest CT at Royal Melbourne tomorrow at 12:30, come into the rooms and pick up some forms, take them to pre-admissions over at the Private Hospital, stop my Flecainide, fast from 6:00am, be there by 8am. I was scribbling madly and my head was spinning. At last a step forward after so many sideways and backwards.  I hung up reeling. A couple of the ladies I work with were standing beside me and worked out pretty fast what the call was about. One of them wanted to hug me, they knew how much this meant to me. They told me to go and organise and they would cover for me.

I was overwhelmed, emotions welled up from dark depths. Relief, excitement, fear. I went and found my wife so she could organise some time off. I texted Jane who had been offering to find me an alternate specialist with a shorter waitlist: I am on for Monday. The text came back: I have lost all my phone numbers....please let this b from Andy! I found my boss and told him I would be off for the next fortnight. I went outside to try to settle as I was on an emotional roller coaster. The nice lady rang me again from Kalman's rooms. Can I come to them first tomorrow for the forms and they will take me to the CT. Yep, no worries. I started thinking about life after AF, knowing that this wouldn't guarantee me a cure and that I would likely need it done again in 4-6 months time. But it could cure it. Or at least it improve it. I texted my mates and got a couple of congratulatory responses and the inevitable one asking for all my running shoes if I died during the procedure. No prizes for guessing who that was. I reassured him they were in my will.

I went back to work, and tried to be helpful. Within the hour my phone was buzzing silently in my pocket again. I pulled it out and now recognized the number from the rooms again. It was the same lovely lady. "I have some bad news. We sent your private health insurance details to the hospital admissions and they always run a check and turns out your cover doesn't include heart surgery. I am terribly sorry but we have had to cancel you. You have been placed on the Public waiting list, which as you can imagine is considerably longer than ours." I was speechless. My mind reeled as I started processing it. How can that be? I have had insurance for 30 years and recently had cause to increase it. I vaguely remember now being offered specific exclusions: do you want obstetric cover? No. Likely to need a hip replacement? No. You want heart surgery cover? There it was. At 45 and as fit and healthy as most 25 year olds why would I want cover for heart surgery? Gone.

The poor young lady was hanging on the phone. I said, oh, I'm sorry I should have checked. She said, no, no she was sorry, and sorry to be the one who had to tell me. She could hear my shattered response down the line. She explained that the check was routine as the out-of-pocket for the uninsured was hugely expensive. I asked how hugely? Don't expect any change from ten thousand dollars. Oh. That was it. I had held the chance of some salvation in my hand, only to feel it slip through my fingers, like so much fine sand. I was numb.

I found my wife again and told her. She asked but how? I explained. She said we will pay for it. I said you sure? Yes. I rang the poor lady at the rooms again. "Can I pay myself to have it done?" "Oh, I'm not sure how that works can you hold on?" A lengthy piece of terrible on-hold music while I could feel every heart beat in my chest. She came back on "sorry Professor Kalman is uncomfortable operating on full fee paying patients and besides it couldn't be organised in time now (presumably I would need to pay up front)." "But I can pay." "His PA is back on Tuesday I will talk to her. What he can do is work out a quote for you and we can take it from there." She could hear the desperation in my voice and I knew if she could, she would help me. It was over. To be so near and now so much further away with the thought of a public waitlist or a massive bill was such a cruel twist. I was in shock. I went home and curled up with the dogs in front of the heater totally numb. I couldn't even face going out for a run.   



Tuesday, August 02, 2011

Waiting, planning and hoping

While I sit and wait for a date for my ablation I am trying to regain some normality in my life. I have returned to work but only 1/2 days. That is plenty. I am trying to maintain my running. Still very low intensity. Still very short. Still very slow. After a particularly difficult weekend I have entered 2 races coming up. I have explained my predicament to both race directors. I figured I would miss Glasshouse this year but could not miss GNW100. GH comes up first and I intended flying up and just crewing but then figured I would try to complete the 100km. If things go well I will be done in a day and be in bed at a reasonable hour. More importantly it will allow me to see where I am at and how I might go at GNW. I have run every GNW and finished them all. The first year I only ran the 100km but it still makes me the only runner with an unblemished record there. I cannot give that up. When the AF hit me back in May I knew Hardrock was off. But I never conceded GNW. That became my ultimate goal for the year. Nearly every run I have been on since I have thought about GNW. I have imagined running the long road into Yarramalong. I have pictured crossing the sandstone escarpment on the Sunday afternoon. I have closed my eyes and imagined running up to the Warrah Trig before descending to the beach. Every year at the pre-race briefing Dave Byrnes pays tribute to the handful of runners who have started every year. One runner has started every year but never finished once, 6 DNFs. Up to last year there has been 2 of us who had finished every year. But Dog was ahead of me since his were all milers. I lodged my priority entry on Sunday. I plan to be there on November 12 when Dave acknowledges those five runners. More importantly I plan to reach the beach at Patonga. Under my own steam. I am learning to run with my mind instead of my heart. My heart is broken but I won't be beaten.