After my post on Monday I've just gone downhill.
Everyday I had woken up feeling really swollen on my face, my head felt like I was going to pop from the pressure, my neck was fat and two massive veins on each side of my neck would be pumping and on display, was a horrible feeling and I thought it was just a side effect of steriods, I didn't think much of it as it had been happening the past few days and usually went once I took done anadin and/or inbuprofen.
However Tuesday was a different story I woke up with this same feeling, took the tablets etching but it didn't go down, all day the pressure in my head was horrible, it got to the evening and it felt like it was getting worse, I asked my husband to bring my oxygen concentrator down from upstairs and sat on 3 litres of oxygen hoping it would ease the pressure in my head-it didn't!
This was really unusually and scared me to be honest so I sent my mum a little pic of my face and said I don't feel right shall I contact the Brompton. She called the on call doctor and like she assumed they would say, they told us to go to our local a&e to get checked out.
So off I went with my mum around 9pm and got seen almost straight away, the Brompton doctor had called thru to a&e to let them know I would be arriving. The done my obs, Sats were 89-90% and they could see I was not right, they took me thru for bloods straight away- tried to put in a cannula which obvs I refused to have, and then they put me into the majors area.
I can't fault the drs in a&e that night they were amazing and restored my faith in St. Peter's as I've had some bad experiences there in the past! They did ECG, echo, chest x ray and some other tests can't member names of but everything came back fine, they wanted me to stay in over night so they could do more tests the following morning as the radiologist wasn't there at that time of the night and they wanted to admitted me onto the ward. Buttt....
I refused and discharged myself, it prob wasn't the smartest or safest decision at that time but I had ascot that morning and I wasn't going to miss it for anything even if it was the death of me I would die a happy satisfied girl!!
So Wednesday came ascot day..I woke up with a face the size of the moon!! And felt crap and I knew my body was telling me to not go but mind of matter, I got washed, I put my make up on and done my hair and grabbed my outfit and off I went to pick up my beauty squad and to enjoy the day I been wanted to do for years!! One to tick off my bucket list!!
My face and swelling went down as the day went on and I took tablets to help and although there was shot loads of walking in heels might I add which I am terrible at walking in, once we got in I sat down most of the day! My friends were amazing and helpful I can't fault them, they made the day so special and glad I spent it with them!!
We got a lot of looks and comments as we "didn't look disabled" the staff at ascot were awful and very discriminating against us cause we "didn't look I'll" if only they knew less than 12 hours before I was in a&e- bastards!
Didn't let it ruin it and to be fair was fun winding up the old people who weren't aloud in the gomey area!! Ha!!
The old people are the worst, at least you have the chance to get old!!
And was told by the old guy letting people in the disabled area that, ok il let you but if someone with a wheelchair comes you'll have to leave...er no mate I'm disabled and have every right to be there, my bloody wheelchair was in the car aswell!
Anyways we had fun and got chatting to a lovely middle aged lady who have us a few tips on what horses to bet!
So Thursday morning I got a phone call from bed manager to say there was a bed for me. I was so releaved, I really pushed myself the day before and I knew everyone at the Brompton would be angry but I literally didn't care, you don't know what will happen in future or where I will be this time next year so making the most of it! Lol
I got on the ward and they all asked if I enjoyed ascot lol and then said the needed to put a cannula in so they could do a ct scan and inject dye into my veins to check for clots!
I felt so dramatic with it in, like those people I critise who can't move there arms, I was such a baby and couldn't wait up get it out. Had the scan which the dye felt so weird going in, my insides went so hot and tinglely and I felt like I had wet myself(I hadn't and was warned I'd feel like that)
Results came back fine, no clots, it's a mystery to why I was feeling like that.
So I'm not well anyways whatever is going on in my body needs to sort itself out. Lung function is down to 17% my infection markers are down again which is good, there 63 I think he said. They changed one of my ivs too Fosphomycin which is 4 times a day and takes an hour to go thru, I think it's making me so sleeping all I want to do is sleep, my lungs are aching so much and keep getting episodes of feeling cold shivery and feverish, I'm glad I'm here I need the rest and I just want to be well now!
Get well soon George! Glad you got to go to Ascot :) xx
ReplyDeleteHey George, hope you start to pick up again. Just wanted to say recently I have been having the exact same pressure in my head, veins in neck being massive thing that you describe! really weird. The docs could see no reason for it but said it could be narrowing of the veins around my port? might have the dye scan thing next time im up there. It just comes and goes, weird. Hope you are out soon x
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