Ten days ago I sat down at my computer to write a blog about Pulmonary Hypertension. The UK’s first ever PH Awareness Week was looming and I wanted to do my bit. I started typing with great intentions to write about the biology and the physiology, to write about what was happening to my body and why. But after a few hours of sitting and thinking and writing and deleting, my blog’s word count was 11. A lone sentence was written on the screen. Einstein once stated “If you can’t explain it simply, you don’t understand it well enough”. If the test for understanding a subject, is whether you can explain it to a six year old… then I don’t understand PH. I can’t explain it to my six year old nephew Jacob, and so I can’t explain it in my blog. This week I have realised that I still don’t fully understand my disease.
I could wax lyrical about the symptoms and how it affects me and others. I could explain to you the finer points of mobility scooters, meditation and oxygen. I could rant to you about the difficulties with the welfare system, getting a diagnosis, and drug deliveries. I could make recommendations about how to adapt your life, when to call for an ambulance, what medicines and foods to avoid. Like all of my Facebook PHriends, and due to their shared knowledge over the years, I now know about living with PH. Since getting diagnosed three years ago, my understanding of how to survive and thrive with the disease has increased greatly. However my understanding of what PH is doing to my body, hasn’t really improved at all.
At diagnosis I was given the standard sentence about high pressure in the pulmonary arteries. The doctors, the nurses, the booklets, the PH website- everyone explained it with that one simple phrase. And initially I was happy to accept that. For the first year that was all I needed to know. I was concentrating on surviving, getting stronger, not giving up. I passively conformed to the old stereotype – the doctors’ role to understand the physiology of the disease, and the patient’s role to listen. I didn’t need to know the details about what was happening. Maybe I was scared to know too much. Maybe learning about it in detail would be too graphic, too real.
Then a year after diagnosis, when I was ready to understand more, there was nothing out there. I trailed internet sites trying to get a better grasp, to be able to satisfy my curiosity of what was happening to me. There was a gulf between the two types of PH websites: Internet pages for patients just reiterated the same one basic line about high pressure in the lungs. And websites for doctors contained lots of interesting details.. but were too advanced for my barely scraped A-Level biology. There was a huge void of intermediate level knowledge. I’d sit there with downloaded PH research papers trying to make sense of them, to get some answers, a clearer understanding. With my old school biology books, and trusty google, I’d decipher the term hypoxia, work out where the endothelium was. But it was generally over my head. I looked on amazon for books about PH; understandably there were hardly any available. The most recent textbook cost over £100, and seemed to be full of medical gobbledygook. My doctors were better at explaining, but I only saw them every few months. At each hospital appointment, I’d ask for another explanation. Each time I’d learn something new. But when trying to explain it to someone after leaving the consultation, I’d realise that I was still confused. The knowledge wasn’t concrete in my head. So two months later I’d ask them to explain it again. And again the next time. And again the next time. At some point, I just accepted that I was never going to understand it all fully.
And that has been the way I have lived with PH ever since. Over the years I have learnt more about the physiology, and my understanding of what is happening to my lungs has increased. Intra-pulmonary shunts, fluid in the cells, vessel wall hypertrophy, occlusion of veins. Vasoconstriction, diffusion capacity, lesions, fibrosis. My head is full of half-remembered sentences, phrases that are banded about, memories of consultant’s explanations. I understand the terms when doctors are discussing them with me… but not enough to explain them to someone else. I thought I was ok with how much I knew. But then this week, as I struggled to put together the words to describe PH, I suddenly felt enormous guilt.
I feel guilty that the thing which is taking my life, is so unknown to me. It is a masked murderer- I know it is there, but I can’t see its face. I don’t know what it looks like. It is a covert killer- I can feel its effects, but I don’t know its weapons. I don’t know how it is hurting me, or why.
Others in my situation would probably have made it their mission to fully understand everything. I know a couple of PH patients who have studied medical courses to further their understanding. They go in to their appointments arming with questions. Their consultations are more equal. Should I be learning everything I can about it in the hope that I can think of something that my doctors might have missed? Others in my situation would probably have tried harder to find a cure. I know of PH patients who have spent hours scouring the web looking for treatments and trials. They are willing to try everything, even if it has only a slight chance of helping them. Should I be reading the latest research papers from obscure countries, in case they mention a breakthrough that could benefit me. Am I being lazy? Am I being too passive? Am I just letting PH take my life? Am I just accepting my fate? Am I letting the masked murderer win?
So PH Week 2016 has been and gone, and I’ve not been able to put together the words to describe the condition. Maybe I’ll spend the next year reading everything, asking more questions, researching. Or maybe I’ll just accept my basic knowledge, and carry on as before. Perhaps this time next year I’ll be able to write a blog about it in great detail. Or perhaps I won’t. It’s a quandary I’m going to have to give more thought to.
If you’d like to learn more about PH, click here to go to the PHA UK website.