I’d got it in to my head that I was deteriorating. I was conscious that this time last year my health had shot rapidly downwards, so when I started to feel ‘different’, I assumed that history was about to repeat itself. For two months, from the end of October to the start of December, I kept having days when I was not feeling quite myself. Days with spells of being lightheaded and dizzy. Days with periods of headaches and unfocusing eyes. Days of nausea or carbohydrate cravings. Days when I just felt wrong. I’d had some shakes and aches, weakness and wobbles. Trips out were taking me longer to recover from, I wasn’t bouncing back quite so easily. My eyes were struggling to concentrate when I was trying to write my blog. And on one memorable morning, I spent 20 mins lying on my bed with serious heart pain. It felt like stitch in my chest, hurting if I moved. We sat googling heart attack symptoms, and debating whether to call an ambulance, before it lessened and passed. Being in the PH community for a number of years, I knew some of these were signs of my heart struggling.
My routine appointment with the Brompton team was due for the start of December. For the first time ever, I was actually afraid to attend. I knew that I would be in trouble the next time my health spiralled down. I knew there were no further drugs for me to take. I knew that if my heart or lungs were struggling, there was nothing we could do. But I wasn’t ready to face that eventuality just yet. I didn’t want to be on countdown to the end. As the appointment approached I prepared myself for receiving the bad news. I warned my closest that I was deteriorating, I discussed it with my counsellor. I meditated, I visualised, I psychologically prepped myself. But in the days before, my nerves intensified further, and I was either erupting at Phil, or getting tearful. I was truly scared.
Once again, the NHS provided a kind volunteer driver to chauffeur me to London and back, as Phil was unable to attend the hospital appointment with me. It was to be only the second time in nearly four years that I’d be attending on my own, which made me even more nervous. Would I be able to cope with hearing bad news on my own? But thankfully one of my besties arranged to meet me at the hospital for a cuppa before the consultation, and another was ready to rush to the hospital with emergency cuddles if the news was bad. Thank goodness for the support of wonderful friends.
The echocardiogram (ultrasound of the heart), took nearly two hours instead of the usual 30 minutes. First one sonographer collated the images.. before calling in a second to look at the results.. and then a third.. and finally a consultant. Four doctors stood by my bed, gravely discussing the images of my heart. Serious faces. They wouldn’t tell me what they’d discovered, and I couldn’t understand “companion artery” and other medical jargon they were throwing about. I lay there with panic bubbling inside, before deciding to tune out. The whole experience got me down. It felt wrong that the doctors knew more about me than myself. They knew if my results were good or bad. I just lay there like a doll, a thing to be prodded and poked. A case study to be discussed. A patient not a person.
Afterwards I had an hour of lung function tests. Blowing out.. breathing in.. panting.. holding my breath. The doctor had recorded a moderate change from the last test in June, so I was made to repeat the tests on a different machine, to confirm it. So it was more puffing and panting in the next room.
The doctors were expecting me back in the ward, but I naughtily decided to escape ‘hospital world’ for a while, and retreated to the cafe for cuddles with baby Agnes, and a chatter with her wonderful Mum. Despite having kept them waiting as my tests had overrun, Agnes was in a fun playful mood. She demonstrated her latest party trick- kisses! And showed me her little dance routine to “The Grand Old Duke of York”: jumping up, sitting down in all of the right places! It was just what I needed, smiles and laughs before I went up to the ward to brave the results.
And amazingly, wonderfully, surprisingly.. it was good news. To my utter relief, there was no change to my heart at all! It is still coping really well; pumping effectively and not showing any signs of struggling. Despite the lung failure and the high pulmonary pressure, my heart is marching on happily. Thank you heart. In fact, my BNP score (a blood test that indicates heart failure) had even reduced to within normal limits for the first time! The serious faces during the echo were because they’d noticed the hole in my heart.. but that is nothing to worry about. Then amazingly, wonderfully, surprisingly.. I received even better news. When last measured in June, my lungs were functioning at 24%. Now they are working at 30%! Miraculously, the steroid and immuno-suppressant combination has not only stopped my lungs nosediving.. not only stabilised them.. but has helped them work better. We were not expecting to ever see an improvement, but my lungs have found a way to collect more oxygen. Thank you lungs. Funnily, I’m still an enigma though, “We’re not sure why it’s working Sarah, but it is!”. Always nice to create a little mystery!
It wasn’t the results I was expecting. And to be honest, I went home in shock. Happy shock. Over the next couple of days, I discussed and deliberated with Phil, how I had got it so wrong. Maybe I’d been feeling nauseous and weak because of normal winter bugs. Maybe I’d been getting headaches and having trouble writing, as I need glasses. Maybe I’d been feeling shaky and light-headed because I was anxious. From experience, I know that psychological worries can create physical ailments. I was probably magnifying everyday health problems, which was creating more stress and further psychosomatic symptoms. A snowball effect. Revealingly, my symptoms worsened in the fortnight proceeding the appointment, and my imitation heart attack was only days before. When you get a serious illness, it is easy to blame every physical ailment on the condition. Prior to my diagnosis, I would not have battered an eyelid at feeling off sorts, but instead as I was convinced I was declining, I immediately blamed my ‘oddness’ on my heart and lungs. I’d forgotten that I’m still normal- I’m still likely to get a winter bug.. or anxiety.. or need glasses!
Furthermore, in retrospect, I’d also ignored all signs that I was doing really well. Looking at my diary, I realised that I’d achieved a lot in the last two months. A year ago, I wasn’t well enough to travel to London when Agnes was first born.. but this year managed to eat sausage rolls and chop up wooden fruit at her first birthday party. A year ago we turned around on the drive to Nate’s first party.. but this year managed an afternoon of chaos, noise and excitement. In the last two months I’ve spent weekends with my Mum, enjoyed day trips to Bradgate Park, babysat Nate. I’ve walked up the stairs more, helped rearrange rooms, fitted additional tasks in to my routine. I’d been looking for evidence that I was deteriorating, and been blinkered to the evidence that I was not.
And happily, as if to prove the point further, I have not felt lightheaded or dizzy or had heart pains since my appointment last week. Now I’ve been reassured that my body is coping brilliantly still.. my symptoms have gone. I’d got it in to my head that I was deteriorating… but I’m not. And that is the best Christmas present I could have asked for.