If you’ve been reading my blog for a while now you’ll know all about my epic (well epic for me!) train journey to London for a hospital appointment which I found out on arrival had actually been cancelled back in August of last year (If not read it here). That appointment was rescheduled for May 31st of this year, so how come you’re writing about it now I hear you ask? Well back in the middle of April I had a phone call rescheduling it again, this time to May 1st if it was convenient, which it was despite the relatively short notice.
This time though the plan was to get hospital transport, to make it that bit easier on my body. I have to admit, I hadn’t factored in the stress about not being in control of when we were leaving. We were told to be ready for 8:30am and we were, as the minutes ticked by after that the anxiety built; would they not turn up at all? Would we be late for my appointment? Did they know how to get down our road? (Soooo many people have got lost trying to find our house over the years, especially since part of it became one way so you can’t enter it directly from the main road, this wouldn’t have surprised me!) All these questions and more were going through my head as I sat and waited for the transport to arrive.
At about 9:35am a Toyota Prius slowed to a stop in the middle of the road outside my house, of course there was no parking nearby and so we opened the door and asked if he was from hospital transport, and he was! And so between the driver and my Dad they loaded my wheelchair into the boot while I loaded myself into the back of the car.
So the journey to London began, it actually only took an hour and a half to get to the hospital so I was there in plenty of time for my appointment. The advantage of having been up in August 2018 for that cancelled one, was that we knew the shortcuts to the cardiac department we needed to go to – we’d been told about them to make our journey out of the hospital quicker and easier back then, and now we were putting them to good use.
The appointment itself couldn’t have gone better. Although the beginning bit was rather dicey:
Cardiologist: “How old are you?”
Me: “Errrrrrm…..errrrr…..26?” *Looks at my Dad who came in with me just to double check* “Yes 26”
Cardiologist: “I have to warn you the questions only get harder from here on”
*We all burst out laughing*
That was the ice broken and from then on things went well. He actually listened, and didn’t dismiss anything as just me being a lazy, hypochondriac! After my last experience with a consultant this was my main worry about the appointment.
We discussed my huge array of symptoms, of which I had a list in my bag so I didn’t forget (such is the extensive number of them), and when he heard I had a list he asked if he could look at it and keep it for his records. I even told him about some of my weirder symptoms, such as my sternum cracking when I move sometimes, and the bright red blotchy rash I get which doesn’t itch but is unsightly and I can’t pinpoint a reason for. For both of those symptoms I began with the words, “This will sound mental but….”, and after telling him about them he told me it wasn’t mental at all.
The upshot of it all is I’ve got to have some tests, but I’m showing symptoms of Postural Orthostatic Tachycardia Syndrome (POTS), as well as potentially a few other things. I had my ECG and some blood tests done there and then, to avoid too many more London trips. I had to have my blood done in the blood department though rather than cardiology, because I have a tendency to faint. This meant an hour wait, but ultimately it was worth it; I got a LOVELY phlebotomist who kept me talking the whole way through AND I didn’t even feel faint once, let alone actually faint!! A minor miracle in itself. (The hour wait in which I’d probably drunk over half a litre of squash probably helped matters too).
It was another hour or so wait for hospital transport home, in which time we made use of the Costa Coffee next door to the transport waiting area, picked up a Metro and started on the puzzles. Then another hour and a half drive, before we arrived home. Utterly exhausted but stupidly happy.
The weeks that have followed have been a little on the tough side; the post exertional malaise wasn’t as bad as I expected in the three or four days that followed. But a week on and I had the most awful headache, which would only ease a little, not completely go, for three or four days, and then BAM at around 11:30am on May 11th I felt like I’d been hit by a ton of bricks. I curled up on the sofa and dozed for the rest of the day. Hoping to feel better after a good night’s sleep, but alas I awoke physically worse. I could barely move, and I have been slowly recovering since.
There’s a couple more appointments in London over the coming months, for more tests on my heart. And weirdly right now I feel strangely calm about them all. The reason I say strangely calm is that I have never been a fan of hospitals, and as such try to avoid them at all costs. Whether it’s because I now have a doctor who actually believes there is something wrong, causing these symptoms and wants to help alleviate them I don’t know. But I currently don’t have that feeling of dread which usually accompanies the prospect of a hospital appointment, local or otherwise! I’m just going to go with the flow and trust that everything will work out the way it is supposed to, although there will probably be some anxiety on the day when waiting for hospital transport to arrive!
I will be a little more careful in the weeks that follow those appointments though, because I can only assume that this time round I did too much too soon even though it was less than I usually do. This will be difficult with the next appointment as I have 2 appointments in the week that follows it; both more local, with my Occupational Therapist and my GP but they will still take their toll.
Overall though I am optimistic that I am now on the way to getting some answers as to what is causing some of this vast array of symptoms I encounter on a day to day basis. Perhaps even some treatment which will not only mean those symptoms improve but allow me to manage a little more than I do now. There is finally a bit more hope that the medical professionals may actually be able to do something for me, and after 14 years of illness with very little support medically, this is a big thing.