10/ Shocking Discovery...
On arrival at the mainland hospital I met with my cardiologist once again. He confirmed the atrial flutter diagnosis of my local hospital and cited increased load on the right atria from my surgery as the likely cause. My left ventricle thankfully was still performing as expected and within the realms of normal despite the disease now being well manifested in the right hand side of my heart. I pondered for hours how a disease, in my case, can only effect one half of my heart. How is it that a disease of the cardiac cell structure only causes degeneration on one side when the heart consists of the same cells regardless of sides? It's not like there is a border running down the middle of my heart and the left side cells form a united front and shout to the right sided cells "keep that shit over your side!". ARVC is certainly a very bizarre condition and it's no wonder it challenges doctors desperate to try and treat it successfully.
My cardiologist proposed another ablation as the right approach to rectify this glitch. My heart sank (pardon the pun). My faith in the ablation procedure had been somewhat challenged over the years and I wasn't exactly filled with joy at the prospect of having another one performed. I was assured this would be far more straightforward in comparison to my previous procedures, it was the atria as opposed to deep in the ventricle and would likely be much easier to resolve. Just the one overnight stay required.
The flutter, on top of the reduced right ventricle function, was causing me a lot of problems. I was extremely breathless with it and it was sustained at around 120 beats per minute. Sleeping became very awkward as when laying down my head would pound. It had also been noted that my tricuspid valve, a non return valve between the right atria and right ventricle, was leaking and not sealing closed when the ventricle contracted. This was due to the scarring from the surgery and progression of the disease causing the right ventricle to become enlarged and misshapen, the envelopes of the valve simply didn't fit together anymore. This has the result of causing some blood to pump back the wrong way around the body including back up into my head. This also causes blood to get to the lungs less efficiently where it needs to absorb oxygen, yes you get it, less oxygen, more breathlessness. So not only was I breathless but I also had blood pumping backwards into my head causing a permanent headache and on attempts at exertion (when I say exertion, read drying after a shower or putting socks on), an invisible hand would appear, squeezing my throat as if trying to strangle me. Marvellous! I struggled most days at work but desperately clung to any semblance of normality and routine, keen still as always not to let my condition get the better of me. This was though now posing a real challenge on top of the physical demands of having a toddler too.
Why now? After these good years why does this happen now? My daughter was over the moon at the prospect of becoming a big sister, my son was due in a matter of weeks. I was loving my new role as a Dad, I felt I'd finally found my calling. I was my happiest in the thick of it, nappy changing, feeding, dressing and watching and encouraging this amazing little person show such interest and joy in the most mundane of things. Who knew CDs could be so much fun and make awesome colourful Frisbees! I couldn't wait to welcome another child into the family I was so proud of having. This flutter had no place in ruining any of that, I needed to get it sorted and as soon as possible. I agreed to the ablation.
The appointment for the ablation came two weeks after my son was born. My poor wife now had to cope with a new-born baby, a very excited three year old toddler rising to her newly elevated status and a husband who practically collapsed in a heap when he put his socks on. Despite my reluctance towards the procedure, I just wanted it done so I could get back to being a Dad and husband. We checked into a family room at a hotel on the mainland, a short drive from the hospital, my wife and both children would stay overnight and my in-laws kindly checked into a room down the corridor. They had very kindly come down from Manchester to look after the children so my wife could attend the hospital with me for the procedure.
The operating theatre now felt like returning to the scene of a crime. The now very familiar sensation of the catheter running up inside me occurred and the usual chatter and discussions of the doctors and theatre staff ensued whilst they paced me, trying to find the source of the flutter. The sense of tedium was overwhelming. The team proceeded to ablate a couple of times at sites of suspicion. It was then that I felt myself starting to feel drowsy. I recall a member of staff asking me if I felt OK. I responded that I felt very light headed and woozy. Then I remember nothing.
I came to and instantly realised I was no longer in the theatre but in the recovery room, what was going on? Why had I been put under? Why do I feel so incredibly weak? The nurse, spotting me awake, moved in close to me and asked me if I was OK.
"How did it go?" I enquired.
"It didn't go well I'm afraid" came the response, accompanied by an appropriately big frown and face of pity.
"Oh, Fu%$!" I blurted, unable to hold my expletive before losing consciousness again.
I arrive back in the land of awareness not long after and I'm now travelling down in a lift on the trolley, my wife at my side. I'm heading to the CT scanner where they wanted to check for any pulmonary emboli, blood clots on the lungs. My oxygen saturation was very low and the medical team were concerned. The scan was performed and I was thankful that no emboli had been found. I again lost consciousness.
I awoke again and found myself sat slightly upright, I didn't recognise where I was at all. I'm now in a bed and I'm hooked up to various things, I start to survey my body in a state of confusion to see just what I was connected to. Drip via a cannula, yeah OK. ECG heart monitor, oxygen mask, OK. Wait, what's that...?
I am startled as I see some leads emerging from my chest from under a large dressing then heading away and disappearing from view under the bed clothes. I move the bed clothes, concerned to know what was at the end of them. I find it. A big metal box that looks like it's from the 1970s, adorned with a plethora of retro style dials and manual controls. What the hell is this Heath Robinson, Metal Mickey contraption and why do I seem to be permanently connected to it?! A nurse appeared to explain that I was in ITU and the device was in fact an external heart pacing box, not something I'd become impaled on whilst perhaps stumbling into the hospital's old store of medical contraptions. It turned out the operation really hadn't gone well at all. Whilst ablating my heart, damage was caused to my sinoatrial node, the hearts natural pacemaker. It was damaged and without this contraption on my bed my heart rate was stuck at thirty beats per minute and refused point blank to speed up. Mickey ate batteries for fun. He had a main battery and a back up battery for when that one ran flat. The nurses would have to frequently change them, carefully removing the flat battery and replacing it with a new one. That was until one nurse decided to pop both batteries out simultaneously to change them! "Noooo!" I cried out to her as she desperately fumbled trying to reinsert them, I slumped further down into the mattress until she finally got them both back in. I found I could rev my heartrate up and down by twisting one of the knobs, a crude speed controller. I felt I had to sleep with one eye open trained on Mickey in case the bed clothes dragged the control around.
The consultant eventually explained the situation further. The external box was thankfully just temporary but due to the node damage, I would likely require a permanent pacemaker fitted, probably in the next few days. He explained that they hadn't been successful in getting rid of the atrial flutter either so I still had to contend with that, however the pacemaker could likely filter the worst of it out and I'd likely need medication too. He was concerned about my low oxygen levels and said I would have to go on a continuous positive airway pressure (CPAP) for a few days to see if my oxygen uptake improved. I wasn't keen on the CPAP, it crushed my head it was so tight and the forced air was pushed into me all day and all night for days straight. I was relieved when it was time to try and eat or drink something. Sleep was virtually impossible despite being so very tired.
The operation had been an unmitigated disaster. Why is it that the most straightforward procedures I'm always promised turn into significant incidents? I'd promised my daughter I'd only be away the one night and I'd see her the following day, I hated breaking my promise to her. The hotel stay would need to be extended and my poor wife and in-laws would have to endure a bit longer. The days began to drag and I began to worry about my family and in-laws' wellbeing and the rapidly increasing hotel costs. I told my wife she needed to be at home with the children and we'd just have to see how things progressed. My wife was concerned as our usually happy daughter was getting increasingly worried about me and saying she didn't like the doctors because they had "taken Daddy away". We decided she should briefly bring her in to see me before heading home, I could put on a short display of happiness for her and make light of the slow bouncy lines on the monitors and leave the CPAP off whilst she was there. I saved up my little cartons of apple juice for her to enjoy. She was over the moon to see me, to watch the colourful lines and for a kiss and a hug and her juice present from Daddy. She was to leave no longer worried, Daddy was smiling and he'll be home in a few days and she was happy. Thankfully my oxygen levels rose a few days later and the CPAP could be removed and I could leave ITU for the general ward to await the next procedure.
The procedure for the pacemaker would be straightforward they told me, as always. The doctor told me how they would create a "pocket" in my chest and he would feed two wires down to my heart then attach the relatively small device to the wires before popping it in the pocket and stitching me back up. A pocket? Like when did I become a garment of clothing?
My wife came over on the day of the operation and I headed once more unto the breech. The procedure is done under local anaesthesia again. I strongly recall wondering who on earth was eating bacon sandwiches in the operating theatre. It only dawned on me a few moments later the smell of bacon was my chest being cut open by a laser, the first step before creating the "pocket". I'd wondered how this pocket would be achieved, what type of medical space age technology would be used. I hadn't appreciated it was more akin to using a shoehorn to remove the skin off a chicken. The doctor yanked away at my skin at the point of the insertion so much he was lifting my left shoulder clear of the table in a quite brutal manner. Hardly space age like I'd envisaged. Now came the wires, just feed them down to the heart, nice and straightforward as explained. But of course this is me and it wasn't straightforward at all.
"Sorry Nick, there appears to be blocked veins on your left hand side leading to your heart. We'll have to sew this pocket up and try again on the other side".
"Fan-bloody-tastic, I knew it!" I incredulously laughed to myself.
Another round of bacon sandwiches and a good shoe horning ensued and I now had a matching right hand pocket, my chest now resembling a well tailored shirt. Thankfully the leads went down fine this time with no issues and I was finally stitched up after the device was slid into the pocket, Metal Mickey was now relegated to just a bad memory.
The next day the pacemaker technician visited me on the ward to fine tune the device more specifically to me. It would respond to exercise apparently, miraculously knowing if I was active or sedentary and adjusting my heart rate accordingly, amazing. They set me a base heart rate of 70 beats per minute so at rest it wouldn't go below this figure. The doctor prescribed flecainide to hopefully help control the flutter in conjunction with the pacemaker. I was more than ready to go home with my wife and to be with my children again, especially my son who I'd spent so very little time with. My one night in hospital had morphed into eleven.
I was so happy to be home. My son was adored by us all, I was so proud of my wife and daughter for their resilience and the way they coped with the situation. I was also so grateful for all the help from my in-laws, graciously being there to help out, just at the right time.
The pacemaker took a bit of getting used to. It was annoying being on the right hand side, I sleep on that side and the seat belt became annoying when I was back driving, pushing down on the device. I struggled to sleep as I naturally have a low resting heart rate and 70 beats per minute felt very fast and exacerbated the pulsating in my head. I started to increase my exercise, taking short walks with the family but was constantly frustrated by breathlessness and severe fatigue. I wasn't tolerating the flecainide well either, it was causing terrible anxiety attacks, something I have never experienced in my life and I found very unnerving. I struggled back at work, so exhausted day after day and on a couple of occasions bursting into tears with sheer exhaustion whilst just sat at my desk. I began to feel very vulnerable and could feel myself losing control of life in general. The exhaustion and anxiety were unbearable. This was meant to be the happiest phase of my life, I was surrounded by my young family and I was thankful but I couldn't enjoy much of it, having to sit a lot of things out on the side-lines as I simply didn't have the energy. Attempts were made to adjust the device, to improve the settings, to give me a bit more but nothing really helped. I had to go back to the mainland to see my consultant, cards on the table time to see what else could be done. I couldn't carry on like that.
We sat in the consultant's office as he looked through the piles of device print outs and ECGs.
"I'm sorry Nick, it looks like the pacemaker is actually causing your heart to work against itself, it is actually hindering you rather than helping you"
"I'm afraid we will need to surgically remove it"