Ahh Friday. Still feeling like shit in every possible way!!
Daily bloods are taken, as well as the score of other things coming in and out of my body. Daily X-rays are taken of my new lungs. All appears to be progressing well.
My 2 tubes that are still in are still draining a lot of fluid.
My sister Di and Mike arrive and Mum too - I can't remember at what stage!!
I'm still very very tired and not up to much talking at all.
I just lie there and listen and occasionally try to say something. I'm talking in my head through their conversations or imagining smiling, but I just don't have any more energy than that. I wish I could - I'm annoyed that I can't be more energetic and join in!! I keep glancing at my hairy legs that I had no chance to shave before I got the call. I had been so dutiful til winter arrived!! HAHA...so all my family have seen my gorgeous hairy legs now!!
I still feel terribly hot.
They want to shift me to another room - I'm not sure why - but while they prepare the next room, I have to be shifted out to a holding bay. My view is the helicopter pad, but it doesn't come at all - it's nice to see the clouds outside and the street below. I see a guy walking slowly past having a smoke - I would like to yell at him and tell him he is an idiot...but I just have to imagine it!!
Mike and Di sit with me for a long time, then it's time for Mike to go to the airport.
As I'm wheeled back - one of the nurses is not looking where he is going - only looking at the other side aware of my drains, and the thing that is holding all my wee breaks against the wall...great! But I think he felt more embarrassed than I did.
Finally my "new" room in ICU is ready for me - I love the cool breeze as I'm wheeled back to the room.
The various teams are happy with my progress, enough that I can go to 5 east now. 5 east is where I have always stayed in the past for CF tune-ups. However at this time, there aren't enough beds - an ongoing common problem unfortunately! So I have to wait until tomorrow to see if there is a bed.
They continued to remove tubes throughout the day, so there was continual progress in that regard.
A bit later Sue arrives. Around this time, I have to be put back on the dreaded Bi-PAP (Bi-level Positive Airway Pressure). I can't control the speed of my breathing as the machine takes over the control of that.
There is no clock that I can see so I have no way to know how long I'm on the damned thing. I think this is the most uncomfortable moment of the whole experience. I'm wringing my hands with frustration and don't know how I can take anymore.
Around on the hour mark, Ranj the physiotherapist comes - and saves my DAY!!!
She wants to get me out of bed. Whilst I'm a bit doubtful about this, I will DO ANYTHING to get out of doing the Bi-PAP!!! It takes forever for the poor luv to sorts all the tubes and get things in a position that allows me to stand up and walk a bit to a chair. While she was rearranging the tubing, so that she could get me up, she noticed that one of the saline bags was leaking and there was fluid all over the floor at the back of the bed. They mopped that up and then got me out of bed. I then had to march on the spot. Ranj says something about my good balance and being very strong in the legs and that she normally had to help people with the marching.
I think because I was able to keep walking right up the transplant, it kept me in good form muscle wise...tick! :)
"When I left ICU, Gen was sitting in the comfy chair with a glaring look on her face. She said “no” to having a photo taken, so consequently there is no photo of that event! (She had previously asked for photos at all stages) At this stage one could describe Gen as totally exhausted. She said later though, that getting out of bed was a turning point and that she started to feel a lot better after that. Mum said that after I left Carol thanked Gen for being an "awesome patient".
And that is indeed the case. After sitting in the chair a short while, my oxygen saturations start shooting up!! Hooray!!! And I start instantly feeling like I have some energy! If someone had happened to visit, I think I could have actually talked to them!! Sister Jo and her husband had been planning to visit, but before the other girls left, I had said no more visitors....as I was just too over it.
I sit in the chair for a long time.....I discover that by sitting up, I'm much cooler! Oh the bliss of not feeling hot.
I'm allowed my first light meal - it is porridge, a bit of juice and a cup of tea and icecream!! Nom nom nom!! It's very difficult to eat though - my throat is still very sore from the gastric tube still being in - and I'm finding it difficult to swallow tablets - plus I still have the Hudson mask on! But eventually I finish and it's the best bloody cup of tea ever!!
So another night of no sleep - I can just tell. But I so don't care! I'm almost euphoric to be off the Bi-PAP machine!!
When the nurses are changing over, I hear them mentioned the Bi-PAP.
I say to the nurse - "I will go for a run around ICU, just please don't put me back on that ****** machine!!"
She laughs and says "No fear Gen, your saturations are wonderful now, you won't be needing it".