The Unpredictability of a Chronic Illness

Last week I, unexpectedly, took a bit of a nose dive. I laid on the sofa one evening, baring in mind being laid down is usually when my heart rate is at it's slowest and calmest and when I feel my best. I was suffering really badly with palpitations, then suddenly my heart started beating out of my chest, when I did a one-lead EKG my heart was beating at 120 BPM. My resting heart rate is usually somewhere between 42-55 BPM so this was extremely abnormal for me. It kept shooting up and then the pounding would stop and my heart rate would be around 60 BPM, then after a few minutes it would start pounding again and it would be up over 120 BPM again. This pattern went on for about an hour before I rung my GP because I had become so uncomfortable and exhausted. Thankfully I had a call back from the GP who had previously seen me twice that week. She advised there really wasn't much she could do for me if I came to the surgery and from what I was describing it was sounding best to go to accident and emergency to be checked out. I held out another hour to see if it would subside on its own before going to hospital but it was where I ended up.

Now, let me tell you something.... my body is a prick! Whenever I am symptomatic I will wait for as long as I think is safe to wait before seeking medical help. When I do seek help, pretty much the second I step into hospital my body goes hahaha, fuck you, I'm going to make you look a right twat now, and all my symptoms stop. Brilliant, so then I have a group of healthcare professionals looking at 'picture perfect observations' while I look a hot mess and feel like I am dying inside, whilst they wonder why I have presented myself to accident and emergency!

Not on this occasion!!! Leanne: 1 Body: 371. I'm working on those odds! Actually I'm working on staying out of hospital full stop, that's the dream! My PoTS symptoms were hugely exacerbated on this particular night as well, I was dizzy when I stood, I was getting awful headaches and pressure in my head when I was stood up and I was finding it hard to stay up on my feet long enough to walk any distance. By the time I reached the desk to check myself in I had to slide to the floor and sit down, my body and my heart just couldn't do it anymore! I was given a wheelchair and placed in the extremely busy waiting room. Thankfully I didn't wait as long as I had expected before being called through to be triaged. At this point I explained what had been happening and they took an ECG and caught the rhythm I had been experiencing and found my heart rate was 140 BPM. After consultation with the Doctor they moved me into resus, hooked me up to all the monitors and inserted a venflon ready for emergency medication if needed.

After a few of these episodes being caught on the monitor, the Doctor came and explained it was actually SVT I was experiencing! Didn't see that one coming as my SVT's normally run at about 270 BPM and feel completely different to what I was feeling that night. The usual manoeuvres to stop SVT have never worked for me (blowing into a straw, vagal manoeuvres). I simply lie down and after a few minutes it tends to stop. The Doctor had me try a modified manoeuvre, which involved me moving onto my back when the episode begun, blowing into a syringe whilst the Doctor brought my knees up and into my chest, within seconds I was out of SVT and I felt instant relief! Until a few minutes later and it happened again.

When I was first diagnosed with SVT I asked my Doctor why I felt like I could sleep for a week after an episode. He quite simply explained, it's because your body has been tricked into thinking it was run a marathon in the about 5-10 minutes! Makes sense! I normally experienced one, isolated SVT, roughly once a week. This night I experienced probably about 30 in about 3 hours. I was absolutely exhausted, even the nurse commented on how shattered I looked.

After a few hours the SVT seemed to stop and they were happy to discharge me at 2am with an emergency referral to be seen by the cardiology team within a week. Whilst I appreciated I would be seen within a week, if it wasn't with my own cardiologist, I felt it would be seemingly pointless, as another cardiologist, wouldn't know my history and the plan that my own consultant has in place to move forward. So I spent the following few days frantically calling my consultant's secretary, trying to explain everything that had happened and how I desperately needed to reviewed by her. At this point my PoTS had exacerbated so badly that I felt like I did when I was first diagnosed and was bed bound and in a wheelchair, I was struggling to get around the house due to pre-syncope, headaches and pressure in my head.

I was lucky enough to receive a phone call from my consultant the day before Christmas eve to bring her up to speed with what had happened. She advised me that she had reviewed the EKG's I had sent her and could confirm the readings showed SVT and asked that I increase my beta blocker from once daily to 3 times daily in preparation for my review with her next week and I may be considered for another ablation. The increase in beta blocker has certainly helped with the tachycardia, but in no way helped with the chronic fatigue, nausea and just the general struggle of getting through the day.

For now, I am trying to survive my days as best as I possibly can, whilst I wait for my appointment with my consultant to see what the next step is. I'm living in fear that this is how I will have to live my life now. I live with guilt everyday that I don't have enough energy to give my children all of me. I'm angry because this condition is so unpredictable, I'm finding it hard to manage my life, and I'm sad that I am the shell of the person I was prior to this relapse. I'm so tired and becoming increasingly depressed because of all of this, I'm just keeping everything crossed and holding out hope that my appointment will come with a positive outcome.

On a positive note, we had a lovely Christmas, it was magical for the girls and they are happy and healthy. Despite struggling, I do make it through each day and I do try my best.