So. You have an inherited bleeding disorder, which means at some point (maybe even frequently) you’re going to end up in your local public hospital. When was the last time you ended up in hospital and it went well? Tests came back with fine results, the staff were friendly, patient, understanding and allowing you to contribute to your treatment for the day. Did you gaffaw out loud when you read that? I would have too, but today I had a great (not just fine, passable or good) experience in the hospital.
I had a lovely nurse, which is always a good start to the process. She was kind, had a good sense of humour, and was really understanding of my condition. She’d read the notes my haemotologist had left for the day, and was empathetic to my recent medical, ahem, hiccups. She was also a good phlembotomist – when taking bloods for the tests, the needle went in smoothly, it didnt move in the vein and sat comfortably, and hardly bled on withdrawal. I’ve encountered a few nurses with much less skill (swollen, bruised and painful elbows are not a good result from having blood taken), and its not fun!
The main point of the day – testing my reaction to DDAVP also went well. I’ve had a few out of the norm reactions to it, but during one of my recent bleeds it got a bit acute, so my haemo told me to use a shot of DDAVP to minimise the amount of blood loss, at least for a short period of time. I had a really severe reaction – instant intense headache, what felt like intense low blood pressure (wooziness and faint feelings), my vision went all fuzzy and I was incredibly nauseous. A normal reaction to DDAVP is a bit of facial flushing and maybe a little bit of headache or wooziness that dissipates after an hour. I was still feeling a bit uncomfortable when I woke up the next day (I took it just before bed). So quite a way out from a normal reaction. But today? Some mild facial flushing and that was it! So clearly stress and anxiety plays a role in my reactions, which means I can manage it myself. Its such a relief – that I can continue using DDAVP, that my reaction can be managed, and I managed to control it today.
The other great point was that my blood pressure hadn’t gone up. As it seems that the contraceptive pill needs to be part of my treatment to control my menstrual bleeds, I can’t stop taking it despite the fact it gives me high blood pressure. But even though I’ve had to up the dose of my pill recently, my blood pressure seems to be under control still. Which is amazing.
And – in and out in 3 hours. That rarely happens, even with visits to the emergency room.
So what made this trip to the hospital different? Sure, the one big factor out of my control was important – getting a understanding medical professional to assist me with my procedure was a gift. But I’d also like to think that despite a little bit of nerves, my mental preparation of believing the success of the tests was in my control, that I could manage my stress was a factor. I know I will probably struggle with this again in the future, especially if I have another wildly out of control bleed like the period bleed that sparked this hospital visit. Or I have a bad run with the glass vials and 4 break in a row. Or something. But today has given me the confirmation and courage to seek out ways to calm my mind and learn to trust myself, because I obviously can and it helps, in a real, obvious, tangible way.
And the tea? Today I packed Coco Chai Rooibos in my Timolino. Hmmm, warm and snuggly, perfect antidote to the environment of a hospital.