Tuesday, 28 July 2015

Frimley to Harefield!

Just doing a little blog to keep myself up to date with stuff! 
So the weekend was very chilled and I stayed in bed and didn't move as much as possible, which to be honest, wasn't the hardest thing in the world! Lol
After acting all brave on Friday, I have to admit, it did hit me Friday night when I was on my own! 
And OMG I experienced my first blood thinners injection and I have never felt pain like it! 
I'm on this one

Literally I don't have enough fat and when the stuff pushes in, the sting I get was so bad! And leaving my tummy with bad boy bruises! 

Decided to use Emla cream now an hour before to take the edge off! 

I'm not as brave as I come across sometimes, but I wouldn't be human if I didn't feel a bit scared! I was focusing on every pain or movement in my body and massively focusing on my heart rate, Which obviously the more you focus on it the higher it goes! 

I worked myself up into a state and when I switched from my nasal cannula oxygen onto my bipap machine, I went all panicky and heart was pumping like mad, I felt like chest was closing up on me, rang buzzer and nurce came running in and I was almost in tears I was so scared, im so embarrassed now, but someone had turned my oxygen off that connects to bipap so I wasn't getting any oxygen through it, just air and that's why I was struggling!!
I worked myself up over nothing, I just wasn't in a good frame of mind! And I relaxed so much after that and I asked nurse to keep my door open, not meant to normally because of cross infection but I was the only cf on the ward and I was so nervous!

Saturday was chilled and I was much more myself! Was quite sleepy and spaced out as I had taken tramadol regularly!
Mum spent the day with me and she looked exhausted so I gave her a pillow and we both curled up and fell asleep. 
Then Sunday I felt awful and was in and out of sleep all day! Luckily mum and Libby were in chilled mode, well Libby slept at the end of my bed bless her! 

I had bank nurses on Sunday too so that put me on edge as they didn't know me personally, so wouldn't no if I wasn't myself or not! 

In the afternoon I had a lovely surprise visit from two very close friends of mine Tor and Gemma! 
So mum and Libby went home and it really perked me up then coming to see me! 
Then lee turned up a bit later then after Tor and Gem left, my other two favourites turned up Hannah and Siobhan and had a lovely catch up with them and lots of cuddles with lee and it was such a good distraction for the following day! 

By the time everyone left I was exhausted even though I had slept most of the day, I put my bipap on and I was out of it asleep! 

So Monday arrived and I was hopeful of a plan but nervous at the same time! 
Mum got to me for about 8.45 and I woke up about 9.30 I think it was! We didn't know if we were going to harefield in the morning or afternoon or if it was that day! 

The day felt like the longest day! 
Phone calls back and fourth with harefield to see if there was beds and what ward would I be going on etc etc
So got to about 2pm and Chris came to see me and told me he had spoken to the team at harefield and they were trying to get me over in the evening but more likely be tuesday morning

He also said there wasn't a definite plan, but could give me a rough idea. 
He said they are going to try going through my neck to pull the stent out of my heart, if they can't get it up to where it needs to go they might just put it in another artery so it's not sitting in my heart! 
Most likely I would be awake and done in a lab, they call it, but it means like a room with X-ray and screen so they can see where they are going etc don't quote me on that, just my impression! 

If that doesn't work, then I'd prob be put under and they will have another plan! Chris gave the impression that until I was there, a lot of this suggestions weren't actually solid plans, but until they do there own imagery bits that's when they could make a final decision etc. 

And it was also mentioned that if they can't re-stent the SVC they will keep doing the balloon thing through my neck to keep the vein open and just do that until I get my lungs and do some sort of reconstructive surgery on the SVC when I'm having my transplant!! 

These weren't cast in stone plans just have been mentioned in convos etc. 
And I asked him after him giving me all that lovely news of i could see the pics of the stent and blocked vein etc and where my new port is! 

Here is some pics, couldn't get one of the stent in my heart cause it was on ct and it wasn't obvious. But here's one of my mri scan back in March when we first found the narrowing. 

And then the X-ray is the one taken when I was in recovery but the stent doesn't show up in X-rays but you can see my port on the side of my boob and the picc line by armpit! 

So we were told there was a bed for me tonight in Harefield and transport were getting me at 6! Because of traffic didn't get to us last and set off around 7ish I think it was! 
They had to do an ecg on me before we set off and mum followed the ambulance to Harefield! 
I was strapped in on the trolley and it was so bumpy! Lol a few selfies! 

I have great fashion sense, pjs and converse! 

So got to Harefield and was put on oak ward which is the cardiac ward next to transplant clinic. 
I forgot how old this hospital looks, so use to frimley now it was weird! Luckily they put me in a side room and I have my own bathroom! 
Done ecg again, and I'm attached to heart monitor all night! 
Saw the lovely Dr and he wrote up all my drugs and ivs. And told me not to eat past mid night incase they need to put me under but he said they are going to try remove it through the neck. 
I was meant to have echo come to my room but now having it done first thing in the morning before clinics start. And then I'm sure I will be seeing everyone and hopefully have a clear plan of action!! 

Very unsettled tonight and so out of my comfort zone but I'm trying to focus on keeping calm and just getting through all this as quick and he best way possible! The quicker I get this sorted he quicker I can get better and get home and enjoy some summer out of hospital! 

Orrrr now I'm here even better plan would have some lovely lungs match for me tonight and then that will solve all the problems and I would be one step closer to getting some sort of normal life back, or normal as can be!!

Feels like this is never ending at the moment, but like they say what doesn't kill you makes you stronger and despite worrying a bit, I am in mega positive, let's crack on with this type of mode!! And I will not be beaten!! 
Also my crp was 112 so that's not bad considering I had operation Monday and normally they fly up after that! Whoop whoop right better get some sleep before il be awake again! 


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