We Can Adjust The Sails

For the past near decade, my health, and my life, have been in the hands of the Royal Brompton Hospital. Or more specifically, the wonderful doctors and specialist nurses, that make up their Pulmonary Hypertension team. Over the years, these knowledgeable and caring folk have been by my side, keeping me alive, and guiding me at each twist and turn and loop-the-loop of the chronic illness roller-coaster. They are the team who reassured me that I’d be alright, when I arrived in an ambulance, scared and sick, back in 2013. The team that diagnosed my condition, the team that prescribed the pills that eventually lowered my pulmonary pressures and mended my failing heart, and the team that gave me hope when my future looked bleak. For the past ten years, they’ve monitored me, examined me, had many discussions and debates about how best to keep me alive. Along with the heart specialists at my local Oxford hospital, they always ring me back on the day, answer the tricky questions, free up tests and diaries when I need to immediately be seen. My Brompton team were the ones who pulled the curtain around my bed and told me I also had PVOD. And the same ones, that gave me some hope, by asking a world-renowned respiratory expert to trial me on immune-suppressant therapy. For the past five years, these caring, clever, dedicated group of doctors and nurses, have been full of smiles, as I bypassed my prognosis, was paused on the transplant list, improved against the odds. We trust each other, listen to each other, work together as a team. I owe them my life.

But now I have moved house. North. My new home in the Peak District is 177 miles away from my trusted Brompton Hospital. And 156 miles from Oxford’s hospital, where we’d often meet up in a satellite clinic. Suddenly I am five long hours away from the folks who have kept me alive, this past decade. Too far to nip in for single tests, too far to “come right now” when having a blip, too far for my husband to join me at an appointment or visit me as an inpatient, without having to take a day or two off work. Visiting the Brompton or Oxford hospital will now require hospital transport, an overnight stay or two, solo appointments. Yes, it is possible to be under the care of a hospital so far away, but… it’s not ideal.

So I’m thinking of moving teams. I’m considering putting my life in the hands of another expert Pulmonary Hypertension team, that are nearer to my new abode- the Royal Hallamshire Hospital in Sheffield. They’re less than an hour door to door, and are the biggest of the seven specialist UK teams. Plus they are highly regarded and recommended by my PHriends under their care. As all the PH units work closely together, share findings, and follow the same guidelines, I know I will be getting the same good care and high standards, that I currently do.

Therefore, last week, I rode the lift up to the twelfth floor of the hospital- to meet some of the Hallamshire PH team. Although the building looked a little grey and seventies from the outside, the M floor was modern and clean and welcoming. No dull concrete anywhere. 😛 And at sixty metres up, the views over the city were awesome- absolutely absorbing and addictive to stare at, but also quite stomach-dropping! All of the tests were completed on ward, there were comfy armchairs everywhere, and there was a fridge of free sandwiches and biscuits to help yourself to. Amazingly, for the first time ever, I was not on a ward for patients with a range of respiratory or heart conditions, but was with PH patients only. M2 is solely for folks with the same condition as myself, and is manned by staff who specialize in it. But best of all -like the northern stereotype- everyone was so incredibly friendly and welcoming. One pulmonary technician even recognized me from an article in the PH magazine! 🙂

This new team are keen on medical imaging, So I twice attempted an MRI scan. But both times, after less than a minute of full immersion inside the tiny tiny tunnel, my claustrophobia was begging to be pulled out. Damn. I’ve asked them to buy prism glasses -like at Harefield hospital- before my next attempt! 😛 There were then some breathing checks (TLCO is 32%), an ECG, and vials of blood were taken for clinical analysis and the latest research studies. Instead of the six minute walk test with oxygen, the Hallamshire prefer old skool torture -the bleep test- without O2 help. I managed 340m, and 72% saturations, before the bleeps bleeped me out! Then finally, there was a lovely long chat with the head honcho -Professor Kiely. I asked a lot of questions! 😀 I left the new hospital feeling lighter. I can see myself trusting this team, being happy when here. A big weight has been lifted off my shoulders.

But I’m not immediately swapping teams. Not straight away. My diagnosis is ridiculously rare, my clinical response even rarer. Having been by my side this whole journey, my wonderful Brompton team know my story, know the strange features and idiosyncrasies of my illness, know what is normal and not for me. And so it feels foolish/difficult/scary to just walk away from such expertise. 🙂 And likewise, as their longest surviving PVOD patient, as the first to trial steroids and improve, as a subject written about in one of their research papers; the Brompton also don’t want to say adios just yet. They are invested, they want to follow-up, watch how the story continues. So, the plan for now is to be looked after by both teams. Hybrid care. I will have appointments with the Brompton over the telephone, and have tests and in-person meets with my new Hallamshire team. The doctors will discuss my case together, decide my care together, and keep me alive together. How lucky I am- two teams is surely better than one! 😀 Then, when Sheffield know me better, they will hopefully take over my care completely. 🙂

I’m going to have to get used to that tiny MRI machine!