Friday 3rd November 2017- 16:00
Super nervous. Setting off from home in an hours time to begin the long journey down. I’ve got a twenty minute drive, three and a half hour train journey and then a 9 hour sleeper train to get to London for my tests and I’m kind of dreading it all. At least once I’m there I can crash until Monday when the tests begin. We spent the afternoon packing, well my Mum did, turns out the biggest piles of things to take was my medication. We also have A and E protocols for if I end up in a hospital that doesn’t know me on the way down as well as a whole load of fact sheets on my conditions as it’s rare anyone has heard of it. I had a trial run with this information yesterday. I was just about to sleep when I suddenly felt really unwell and my pulse hit 176 while I was resting. A first for me to have that happen out the blue. It was pretty scary. I got taken to hospital by ambulance and the paramedics were able to use my fact sheets. I was border line being admitted but everyone needs these London tests to happen and I had only last been in hospital earlier that day so for now we’re going to see how far I can get on the way down. No pressure at all! I’m very tired from it all and I can’t get my pulse below 90 which has worn me out. I’m hoping it means I will be able to sleep on the train as a result. I’m just trying to keep the nerves at bay. It will all seem like an adventure in a few weeks hopefully!
Saturday 4th November: 10am
Successfully arrived in London and so very relieved to be here! The train down wasn’t brilliant but not disastrous either. The hardest part was sitting on the train to Glasgow as that felt very long and I was ready for a nap by the time we arrived. Luckily we didn’t have to long to wait until we could get on the sleeper. This was definitely a bit of an adventure as there is not much space, which seems obvious, but I didn’t fully consider it. Rollo, the wheelchair, just squeezed in but took up the floor space so we squeezed on to the berths and rolled him in. I was very nervous about getting a sleeper for the first time however there was really no need to be. It was an incredibly comfy bed, you get given an eye mask and ear plugs and there are no announcements. I managed to sleep on and off on the way down. It was fairly bumpy but you get used to it quickly and it only became strange when we stopped. We arrived in London nearly an hour early and were woken up by the assistance people with their van to take us through the station and help us get off the train. The only downside of this was an extra hour to be up in the day.
Squeezing Rollo on the sleeper
We’re spending the first night in Premier Inn Hub in London before we get put up in hospital accommodation for the tests. Premier Inn were absolutely amazing! We arrived at 9.30 in the morning (check in is at 2) to drop our bags off. As I was a very grey colour and having presyncope symptoms they however offered to let us check in then and we only had to wait ten minutes for the accessible room to be sorted and that was it. We’ve consequently just checked in and so relieved that this has been made easier. The staff here are really friendly too. It’s my first time staying in an accessible room and it’s been well adapted with a shower seat, emergency alarms and more space. Not sure what will happen the rest of the day.
Sunday 5th November: 16:00
Had a very rough day so tucked up in bed in a new room dosed with strong painkillers. I think I’m paying for the traveling and a mini trip out to Hyde Park yesterday to people watch.
We moved Rooms today as for the rest of our stay we are being provided with accommodation by the hospital who are carrying out my tests. We’ve been put in an NHS hotel which is a novel concept for me. It’s a really nice hotel which provides accommodation for people who have to access services at the University College London Hospitals but live further afield. Apparently most of the people who stay here are seen either by the same place as me, are getting transplants or have rare forms of cancer. Everyone staying seems really friendly and there is a sort of day room where you can go and sit. There’s also a laundry that’s free to use, you can borrow Kindles and DVD players from reception and the rooms are well stocked with drinks and snacks. Since we’ve checked in I’ve been stuck in bed though so not really been able to do anything today. Tests start 8.30 tomorrow morning and I’m nil by mouth from tonight.
Monday 6th November: 17:39
Feeling absolutely deathly. I knew today would be tough I just didn’t appreciate exactly how tough! I got to the Autonomic Unit at 8.30 and had to wait in a day centre for tests to begin. The day centre was a room of recliner chairs where patients sit until they are taken away by porters and in between tests. I had my blood pressure and pulse done here which were already not too good. They couldn’t pick up my oxygen sats as my hands were too cold so I had to sit holding a bottle of hot water they gave me. Apparently the cold hands thing is an Autonomic thing, I always thought it was just me!
About twenty minutes after arriving I was taken to a different floor for my tests. A doctor who was really nice and once she found out I was interested in the details of the tests gave me lots of information ran them. After a mini consultation going over my daily symptoms I had to lie down for part one of testing: seeing how my Autonomic system responded to everyday things. I was attached to an ECG machine, oximeter and had a cannula put in my arm. I had to carry out a number of breathing tests, had an temperature test where ice was applied to my arm, had my reflexes tested, had some lying down to standing up tests and also had a stress test. The stress test consisted of counting backwards in 7s from 100 but apparently nothing changed on my sats so they started giving me quick fire maths problems instead. After this round of tests was the tilt table test. The tilt table test consists of being strapped to a table which is then tilted upwards 60 degrees- it sort of replicates standing up and can last between 10 and 45 minutes. The doctor made the decision from my readings to lower me back down after ten minutes. I didn’t faint but felt very dizzy and light headed. They took quite a lot of bloods to check for autoimmune diseases and also to check adrenaline levels when I was both lying down and on the tilt test.
While I didn’t get any results and couldn’t see any numbers from today the doctor did stop several tests early and said they had a lot of information that would be useful from the tests so I’m expecting it definitely showed something. My blood tests get sent to Oxford so it will be a while before I hear back about those.
After a 30 minute lie down as I wasn’t well enough to sit up, I was wheeled through to another room for part two of the day. I had to fill out quite a bit of paperwork agreeing for my test results to be used in research (there’s currently very little research so this will be interesting). I was then attached to a blood pressure cuff which will take my blood pressure and pulse every twenty minutes for the next 24 hours. I have to write down every twenty minutes what symptoms I’m experiencing and what I’m doing as well. Alongside this I have quite a bit of homework to do with the blood pressure cuff on including walking up stairs, standing up for five minute intervals, walking briskly and carrying out activities I know exacerbate symptoms. It’s not too much fun.
After all of this there was a bit of a break where I had lunch in the hospital canteen and then sat up in the day patient room before seeing a doctor this afternoon. The doctor appointment was a little bit pointless as it was to check I was well enough to have the tests I had already had. It was also to answer questions which unfortunately she didn’t know the answer to any of mine so will have to email her boss but isn’t sure if they will reply before I leave. The doctor was surprised I hadn’t been admitted as an inpatient for tests on the ward and left us with the parting words of to go straight to A and E of my symptoms become particularly troublesome. Not very encouraging.
After all of this it was mid afternoon and so it was time to head back to the hotel and begin my homework of activities. We arrived back at the hotel for me to have a near faint on arrival and so I’ve not moved consequently for the last couple of hours except to record my diary and do a sit and standing test. I still have the stairs and other homework assignments to go.
Unfortunately I’m really feeling far from well after today and am struggling to move at all. I’m well dosed up on morphine though it’s still all feeling a little bit unbearable. I’m holding on to the fact that these tests are the only way to get the answers I really need. Luckily I’m not due back at the hospital until 11am tomorrow morning when I have a meal test and have to have two more tilt table tests. We also have to move hotel tomorrow as the one we’ve been put in is fully booked so the Autonomic Unit are moving us somewhere else, we just don’t know where yet.