I’ve had another few weeks of ‘medical stuff’ commencing with a longer than usual hospital stay starting the weekend before last (my fourth hospital admission this month!). I went to see the GP out of hours in the evening with severe joint pain that my painkillers just was not getting rid of. They decided I was really dehydrated and needed IV fluids while I was there. While waiting for a room to become free so I could get a cannula put in I collapsed in my chair. I have no memory of this event but apparently it involved people being kicked out of rooms in A and E back to the waiting room and me being wheeled into a room very quickly. Several litres of IV fluid later and I was still really unwell and so it was decided it was best to admit me for the night. There was quite a bit of hassle finding me a bed, but with the advantage of being a regular I have now visited enough times to have got the loyalty customer prize of the A and E staff turning up with a portable DVD player and a bunch of DVDs while I waited. I spent a couple of hours revisiting my childhood watching ‘101 Dalmatians’ and had a general catch up with some of the staff.
I was admitted to a high dependency ward and attached to a telemetry (a machine which monitors your heart rate). The hospital was pretty busy and at one point in the night the man in the bed next to me fell out his bed and was stuck on the floor. I woke up to see someones legs and feet sticking under the curtain round my bed which gave me a real fright! Luckily he didn’t seem to be too injured and they got him back into bed. As is the usual experience when I am admitted to the hospital ward they didn’t really know what to do with me. I also think people find it hard to understand that you can be sick and young. There were some problems as the next day they decided I needed to be ‘reenabled’ by which they meant I had to sit up for breakfast and until after the doctor had been. I can’t really sit up, at least not for any length of time as my blood pools into my feet, I become really unwell and collapse. They also removed my wheelchair to the other side of the room and stopped helping me with things listed in my care plan. Consequently I stood up and walked across the room and set off all the heart monitors and everybody came running in. My physiotherapist also turned up on the ward and wasn’t happy that they made me sit up and managed to speak to them and I was allowed to lie down again. It was very stressful though as I know what happens if I don’t do these things and being ‘reenabled’ won’t re-enable me or cure me but rather drag out my hospital stay as I will keep collapsing. At some point as a result of all of this I am supposed to be having a meeting with the hospital, my GPs and physiotherapist so we can come up with a hospital care plan that makes it clear what I can’t do and what help I need. Unfortunately with having rare illnesses people don’t always get it.
Shortly after getting out of hospital I had my trip down to Glasgow to see a rheumatologist about suspected Ehlers-Dalos Syndrome and the joint problems I have been having. The journey down was a little bit of a nightmare and took a lot longer than we expected as my Mum, who was driving, had to stop frequently for me to lie down as I started to faint. By the end of the trip we were stopping every twenty minutes for me to lie down for half an hour or so before I stopped having pre syncope symptoms. However luckily the route between Glasgow and here is really beautiful and we got to stop in parking spots that overlooked snow on mountains so I shouldn’t really complain!
When it was my turn to see the rheumatologist they called my name and the ultimate embarrassing moment of the day happened, I fell over! Not only did I just fall over, I fell over three times in succession as my legs would just not hold me up! I don’t think that a waiting room of people is the best place for this to happen but luckily the consultant was very nice about, saw it was very genuine and came over to help, it also helped them see what happens to me several times a day!
My rheumatologist appointment took nearly two hours and involved having to see several people as no-one was exactly sure what was wrong but could tell something was very wrong. I do know I have lost more weight (not good) and grown taller (strange but explains why everything else has shrunk!) It seems that while I would fit the criteria for Ehlers-Dalos syndrome they’re not sure that is what I have. Instead they think I might have another genetic connective tissue disorder called Marfan Syndrome. Interesting they are the third place to mention Marfan Syndrome so I’m thinking there might be something in it. Marfan Syndrome is caused by a gene so I will have testing to look for this, it can take up to two years after the test though to get the results as there are thousands of variations that the gene has mutated to in people that they need to look for. Its a fairly expensive process so they are fairly sure I have it to put me forward for it. I made the mistake of googling Marfan Syndrome and was unimpressed that the search told me that it’s progressive, often causes sudden haemorrhages, sudden ruptures of the aorta, lung collapses and all sorts of wonderful other things. A bit more research since though I’ve found that you get yearly MRI scans, echocardiograms and see lots of specialists so they try to see problems before they really cause issues and then you can have surgery and things to correct it. Some people are also only mildly affected. Unfortunately as the rheumatologist told me there is no cure and they can do very little to improve my quality of life- which is pretty rubbish!
They also think there is a lot more going on than simply POTS/Dysautonomia and a connective tissue disorder too so they don’t think I’ve got to the bottom of it all yet. I think by the time this is all over I will have a much longer medical alert bracelet! They took 13 bottles of blood for various things (not a fun experience and they went through several veins so I’m sporting technicolour arms at the moment but at least everything can be ticked off). I am also being referred to a geneticist, back to cardiology and also to see gastroenterology as soon as possible.
I made it through the trip back home with lots more stops and even went through the first snow storm I’ve encountered this year!
Also as a final note I’m really sorry for being incredibly behind with communication this month. If you’ve sent me an email, text, letter or message I will get back to you as soon as I can but it might take me a little while.