I’ve spent far too much time visiting hospitals these past three months. My recycling bin is full of appointment letters, the veins in my arms are feeling sorry for themselves, and I still keep finding remnants of heart monitor stickers that I miss each time I shower. I’ve had ten visits in the past ten weeks… I’m turning into a professional patient! 🙂
It’s funny how the words of one doctor can completely thwack your diary. In January, there were barely any medical meetings planned for the coming months. I had hopes to catch up with friends and family after the hibernation of Winter, as well as finish some of my long-overdue photo-books. But then during a routine appointment at Harefield, my transplant team broached the subject of reinstating me on the active list. The air transfer in my lungs (TLCO score) had dropped, my functionality was reduced compared to the Autumn, and my lungs were still being hyper-sensitive. Bummer. Tests, tests and more tests were needed. Ten trips in ten weeks at four different hospitals! As each appointment needed three days from my life (forced rest day before, day of visit, recovery day after), my diary was quickly filled. Consequently my catch-ups have not quite been caught up, and my travelling photobooks remain unfinished… but my body has had a thorough MOT! 😛So I’ve spent the past three months being pricked and scanned and monitored. And had meetings with my Pulmonary Hypertension team, and a couple of respiratory consultants specializing in allergies. Some of the assessments were those that are repeated every few months -ECG, Echocardiogram, Six Minute Walk Test, X-ray, Lung function tests and bloods. But some were more specialist and only checked occasionally. The Cardio Pulmonary Exercise Test (CPET) calculated my VO2 Max and produced clever graphs of my heart and lungs. The hardest appointment by far; it involved peddling an exercise bike when covered in wires and wearing a suffocating mask, whilst being continually shouted at, to peddle faster and for longer, by an army doctor (he obviously confused me for a squaddie… until I cried like a civilian! 😛 ). The CT scan pulled me in and out of a noisy short tunnel, as it took detailed photographs of my chest. And the Right Heart Catheter, was forty minutes of lying stone still in a mini operating theatre, whilst a wire was inserted through my arteries to my heart, to take internal measurements. Yep it’s as scary -and fascinating- as it sounds!
And amazingly, wonderfully, thankfully, despite the worries and concerns, there is much to celebrate. 🙂 Unbelievably my Pulmonary Hypertension has not deteriorated… but instead has improved again! Yep again! Thanks to the life-saving PH drugs I take multiple times daily, my resting pulmonary arterial pressures have reduced to just 16. This is classed as very mild! And astonishingly is not dissimilar to most of the population (normal is 8-15)! Unfortunately though, this is only my resting pressure; unlike everyone else, mine increases with activity, thus explains my symptoms. But it is fabulous to think that when I’m asleep in bed, I’m now almost normal! 😛 Thank you wonder drugs for continuing to keep my PH under control and stable. Consequently my heart is still coping brilliantly. No signs of enlargement or damage. Happily it is managing despite the extra medical issues it is contending with. Two years of heart stability. 🙂 It still struggles to pump as efficiently as needed when doing activity, which contributes to my breathlessness… but again when I’m resting, it is almost normal. It’s a pity life requires me to move around! 😉 The head honcho from the Brompton, was amazed by my improvement. Proud! So happy days for my heart!
My lungs are still having a tough time. They cannot extract enough oxygen, due to abnormalities in their tiny capillaries and veins, caused by Pulmonary Venous Occlusive Disease. In fact, they are only between a quarter and half as effective as a typical person of my age and sex. (VO2 at V1, the exercise level at which the lungs start to struggle is 26% of expected level. VO2 Max, a measure of the maximum amount of oxygen my lungs can extract is 48% of the predicted level). However, wonderfully, these results are almost identical to last year, suggesting that my lungs are not deteriorating. And happily, my other tests results also showed similar scores to 12 months ago, again indicating stability. I walked 440m in the Six Minute Walk Test. The CT scan showed no new large structural changes in the lungs (However CT scans only identify abnormalities larger than a finger nail, and the majority of the PVOD deformities will be smaller than this). The chest X-ray was clear, showing no masses or fluid overload (pulmonary oedema). And most of the lung function tests were also identical to when last assessed. In fact, only the gas transfer score in my lungs (TLCO) was slightly worse (43% reduced to 38%). We’re therefore assuming that this is likely due to a one-off bad test, and will right itself with time. So wonderfully my lungs do not appear to be deteriorating or declining or worsening. I am still stable. Hallelujah! 🙂
And to top off the good news, my daily functioning has also improved since my Harefield appointment in January. With the emergence of the Spring sun, my body has started to awaken from hibernation, and my solar panels have started working. I’m able to do significantly more each day than three months ago. This is further helped by the increase in my inhaler dosage, which has dramatically improved my issues with over-sensitive lungs. I am no longer reacting to everything and anything! After a tricky Autumn and Winter, it is an enormous relief to be feeling more normal again. More like me again. To be on the up. Thank you wonderful body for getting through that tough time. 🙂
At the start of February, when Harefield pondered about reinstating me on the active lung transplant list, I was certain the deterioration had started. Having lived with PVOD for three years, and knowing its poor prognosis (90% die within twelve months), it seemed almost certain that I was starting my long over-due decline. I could only out-wit the condition, rely on a miracle, beats the odds for so long. But the results have shown differently. I appear to still be stable. Someone is looking after me. 🙂