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Transport and Latest Appointment

June 28, 2011

What a day! I don’t why, but I always seem to be able to book my London appointments on the hottest days of the year. The 19th April was the “hottest day of the year” and yesterday, was most definitely “the hottest day of the year”.

Sunday was bad enough and I recall  spending the entire day, suffocating with the humidity and struggling to hold back a seizure. Sitting eating my dinner, my legs were starting to shake and it took a major amount of concentration to hold it off. A seizure usually takes me a good 3 days to recover from, so with a trip to London the following day, I really didn’t want to do anything the night before that would make things any worse for myself….

Despite holding it off all night, 9.30 Monday morning (30mins before I was due to be collected by the transport team for my London appointment) I broke out into a violent fit! 999 and a paramedic arrived at 9.45, I took the Entonox as quickly as I could – almost throwing up because of it, but in less than a minute, it had stopped the fitting.

15mins later a Norfolk ambulance arrived to take me to A+E, and within seconds of that, the London transport ambulance turned up to take me to my appointment. The road now looking like an ambulance depot!

Don’t ask me why or how, but I refused a trip to A+E, and instead by some miracle made it out the door and into the london ambulance. 3hrs stuck in a goldfish bowl on 4 wheels (no air-con and a temperature well over 40+ degrees) I just laid there gasping for air, exhausted and in pain from the seizure, and slowly deteriorating from the sauna like conditions in the ambulance. My heart was pounding out of my chest throughout the journey and it was as much as I could do to hold back fainting (despite laying down flat on a stretcher bed).

Eventually we made it to London and they got me a wheel chair, wheeled me into reception and bang! The foot support clean broke away from the chair and everyone turned to look (as if I didn’t feel awkward sitting in a wheel chair in the first place). The porter fixed it back on and we set off for the lift to the second floor – squeezing me in to a packed lift. “bing” the doors opened. “bang” the footplate fell of again so I continued the rest of the journey with one leg stuck out in front of me, holding a bottle of water in one hand – resting my wrists on an ice pack to keep cool, whilst holding the random footplate in the other (a rather odd sight that only drew more attention as I went down the corridor).

I just about made it out of the chair and into a seat, when the nurse came over to ask me to do a urine sample “I don’t think he’s going to be able to walk to the toilet” mum said in my defense “he had a seizure this morning and he’s incredibly tachycardic and faint”

I just sat there, puffing to get my breath, whilst rocking back and forward with the force of my heart palpitations, sweat beading on my head, and eyes half closed struggling with the light – It must have been a sight that would have frightened the grim-reaper away!

“Oh no, don’t worry then, I’ll get a BP monitor and take the readings here if thats ok Liam?”

“Yes, that’s fine” is what I intended to say – it came out more like a caveman grunt though.

“And I’ll let the consultant know your situation and get you in next”.

True enough I went in next and Dr Manson was lovely – having an understanding of pots is such a refreshing experience, she kept the appointment short and was incredibly helpful and concerned not to make my symptoms any worse as she examined me.

She confirmed that I have type 3 EDS, and wants me to see an eye specialist to check my vision, a neurologist to check that these seizures are just a lack of oxygenated blood in the brain, and to see their physio team to help me build strength in my joints etc.

She also confirmed many symptoms I get, which are related to the EDS, such as the skin discoloration and the blisters on my hands and feet etc – even to things I never considered like cutting my gums when I brush my teeth and mouth ulcers.

EDS effects the joints, skin tissue and the blood vessels (in fact they think that the elasticity of my leg veins is what stops them from tightening and fighting the drop of blood to my feet when I stand – which in turn causes POTS) she also said that the tissue etc will effect my heart, which is why I get the bad tachycardia – also worsened by the POTS.

Its not curable, and there isn’t any medication for it either (apart from pain relief) but with the right exercise, you can get the joints to work in your favor (Andy Murray has EDS apparently – only he obviously doesn’t have POTS with it, otherwise he wouldn’t be leaping around playing tennis).

Because I had a seizure that morning and my heart rate was still 148bpm, she sent me for an ECG, which for the first time ever, showed some irregularities in the heart rhythm, so I then went and had a load of bloods done.

She will see me in 6 months time (December so hopefully the journey will be much cooler!) by then she will have all the results back and will be able to give me advice on how severe the EDS is and a best course of action on how to manage it etc.

Back at reception we notified them we were all done, and then spent 3hrs in the heat of the day (this time the ambulance didn’t even have tinted windows or blinds and the sun was also shining on me all the way home) I could see my t-shirt bouncing up and down erratically with my heart rate, and the sun caused awful numbness and earache in my face. My neck swelled up and I struggled to breath – I just laid there thinking of sitting at home with all the fans going, and that somehow got me through.

Despite the hellish day – the appointment went really well!

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