Saturday, 25 July 2015

Bad outcome!!

Friday I slept in as I had a bit of rubbish night sleep Thursday. Whilst I was asleep I remember my other consultant Alex coming into my room and kneeling next to my bed in the dark and waking me up gentle and asking me a few questions. 
She asked was I still feeling swollen and pressure, I said yeah but it wasn't as bad as the day before. And she asked was it as bad as when it was before I had my last port removed, and I said yes! 
She said ok, going to book a CT scan for you later. 
And she left me to go back to sleep! 

Then my nurse came in and woke me up just before midday and said I needed to have a cannula put in for the CT scan! 
I was like whatttttt I've got a picc line in, can't they use that, but they wanted a cannula- bastards!! Hahaha 
I had decided I was in woosy mode that day and wanted numbing cream on before I had the cannula put in. 
So we numbed me up and came back about hour later. 
I'm the only cf on the ward but there was two end of life patients and one had sadly died not long after I had put my cream on, and the other nurse has gone to do 2 hour training and no healthcare assistant that day so they were mega busy. Worked in my favour as I could keep the cream on longer!!

So when she came to do the cannula I didn't feel a thing! Was perfect! 
I went down shortly after it was put in, the little Nepalese porter guy with red hair came to get me! 

Got there filled out my forms, and waited to go in. 

I wasn't waiting long. 
I got in and had to lay flat which is never easy for us with rubbish lungs, but they gave me a pillow so wasn't completely flat. 
I had to put both arms above my head but could only manage one as port side was a bit stiff still. 
They attached the dye tubing to my cannula and she left the room. 
The bed moved right under the polo bit as I call it and it started swirling around the inside bit of machine not me swirling around haha 
Then the machine robot voice asks me to take a deep breath and hold it and as you hold it the table moves you through I'm guessing to scan all ya bits! 
Then it went back in again, then they injected the dye into my veins and same again asked me to take a deep breath and hold it! 
The second time was mega hard, not only does the dye go through your veins and tingle, it makes everything go warm and because I've had it before I know what to expect but feels like you have wet yourself! But this time with that to deal with when the dye went through and having to hold my breath it made my breathing go really tight and the pressure in my neck and head was horrible! 

I couldn't wait for the woman to get back in the room, undo the cannula and tubing bit, so I could get into the wheelchair, laying down makes the pressure worse!!

She pushed me out of the room and I had to whack the oxygen up, I couldn't stop coughing and I could feel all my veins budging out of my neck, the hulk had returned! And I got the worse headache!! I don't know if it was the dye or the pressure, or a bit of both but made me feel so sick and wanted the porter to hurry up and get me back to the ward!!

He arrived and walked pretty quick for an old guy! 
Got to my room and felt so faint and so sick! Nurse got my anti sickness but I was already being sick by the time she got back to my room!  

Then I relaxed a bit, Hannah and mum arrived and mum said I wasn't looking good and I explained. Then about 4.30 Chris my consultant came in, and I knew from his face and body language something was wrong!.......

I did not expect him to come out with this though! In a nut shell, my stent had fallen into my heart!! 
Come again!! Lol stent had just fallen into my heart, how does that even happen lol !!??

I stayed so calm and to be honest as weird as it sounds I was relieved! I honestly thought oh god I've tuned into that patient that wants to stay in hospital all the time and find something wrong with them!

That's not me in the slightest but after having the stent and port fitted it was meant to be all good and I would be home Friday and recovering well and hopefully manage to stay out of hospital for a bit! So when I started not feeling so great on Wednesday it didn't add up! And I thought maybe I was over reacting and making symptoms up on my head ya know! 

Well I'm glad I'm not that patient and I'm not going crazy and here generally is something very wrong that's happened!

Chris said basically he has spoken to Dr Carby and sent over all the imagery bits and there going to discuss a plan, and get me over to Harefield next week as soon as possible! Frimley haven't got the equipment here to deal with this and Harefield specialise in Hearst etc and with me being on the list for lungs anything like this needs to be done properly! 
Chris said Dr Taylor going to come down and have a chat, he's the guy who fitted the stent! Of course I asked for pictures! I want to see what it looks like! Ha 
I rung lee as soon as he left but couldn't talk long as I knew the Dr was coming to see me. 
Mum and Hannah were in shock and couldn't understand how I was so calm! Ha 
20 mins later Dr Taylor came in with my nurse and said do you want me to draw it and I was so pleased because I'm not great at understanding all these bits so it helped to explain what had happened! And luckily lee walked in before he started drawing and explaining it all! Chris also came back into the room. 

He said what he thinks has happened is the stents done such a great job at opening up the vein that it opened it so much that's why it's slipped. 
I asked why it wasn't stitched but they don't stitch them because there meant to cling onto the vein. 
It's all very complicated but now I have a stent sitting in my heart in the right atrium. 

I'm not allowed to leave the hospital or get out of bed much! I have to take blood thinner injections because the mesh is inside my heart if it was to clot inside I could have a heart attack and we defo don't need that happening!! 
But my god I had my first injection last night and I cried it hurt so much!!  How the hell do people do that, and I've got hardly any fat which made it worse!! I'm can't even refuse it because the risk is too high!! 
So I'm officially dreading that later!! ESP now I know how horrible it is!! Fml! 

So yeah I'm pretty upbeat considering and here's hoping whilst I'm at Harefield next week they find me some beautiful lungs!! 

I feel like this year as run away with me, and was so looking forward to this all being over with so I could get a break for a while! 
Now I think things are just going to get worse before they get better and I'm terrified going to sleep every night and coughing or just going to the toilet! 
My heart rate sits at 110 just resting normally and so scared I'm going to make it worse!! 
I never worry about stuff but this has scared the hell out of me if I'm honest! 
I can't be super human all the time!! 

On a brighter note my just giving page has gone over the second target of £2000 and I'm so so pleased! It's a good distraction! 

My favourite number is 8 so I think my next target is going to be a big one! 
But thank you so much to everyone who has donated, means the world to me and I'm sure even more so to the CF Trust!!
So massive thank you!! 

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