Tuesday, 20 October 2015

Harefield - A 2 month special! Ha

Today I'm 2 months transplanted!  Had a fun weekend at lees friends engagement party!! First proper night out dressed up, HEELS on and a lot of alcohol! Didn't last long on my feet though, my feet were massively swollen when I got home, who cares I had a good night and I managed to walk in heels! 4 weeks ago I could barely walk in gripper socks haha 

So today!!!....
After one of those unexpected days it has me in deep thought tonight! 

Since last week I have started to notice more swelling in my neck.
For anyone reading who doesn't know my story this summer and how I ended up getting so unwell before my transplant it started with a narrowing superior vena cava vein, the main one to my heart! Had a stent fitted, that opened it too much and stent fell into heart, stent got stuck in heart, caused more problems was ventilated in icu for 3 days bla bla bla got more unwell a few false alarms then got my transplant! But this never solved my narrowing of the vein! But since having better lungs and not coughing constantly and struggling for oxygen, I suppose all this helped and took the pressure off!
So I don't really cough anymore, I mainly do it to clear my annoying throat so I don't sound like I'm on helium all the time!

So no coughing means haven't noticed swelling until last week, when I lent over to put bath on and befor going out tying my shoe laces, all the pressure goes to my head! 

This weekend it got worse ESP Sunday night. I never lay flat, I always have at least two pillows, but even that wasn't helping the swelling in my neck! And it was ESP worse laying on my left side! I I tried so hard to sleep upright but Naturally in my sleep I slide down and I spent most of the night being woken up by a banging headache! The pressure was unbearable, paracetamol wasn't touching it! 
I emails the hospital first thing and they were great, added me onto clinic and sent me for bloods, had two cannulas inserted into each arm so they could do a ct scan with the dye into both sides of my body! 
This the machine they used, and I could see my lungs and veins on the screen 

I also had an ultrasound on my neck on both sides to check those veins.
Looking extra special here!! Lol 

After I had my bloods done in the morning, I was told to sit away from everyone in clinic and was given a little snack box! Haha my white blood count was very low, more at risk of infections, so everyone is a walking bug to me at the moment! 
I got to see beautiful Simona my consultant, she told me I have to stop my septrim, valagancious and mmf until my blood count comes back up! Which I was happy about of course 3 less drugs to worry about for a few days aye! 

Going back Wednesday for more bloods and tac levels and then clinic again Monday to see Simona and Aron my surgeon, they will have all the reports back from the tests! By the sounds of it I don't think it's anything to worry about too much and it's not completely blocked! They want to check blood pressure and move me in different positions to check on Monday. 

I feel much calmer this evening about it all knowing I've had all my checks and avoided staying in Harefield! I have to stay in at home this week until the white blood count comes back up! 

So I'm In isolation, no contact with people and busy area as I'm more at risk of infection and bugs from you humans! Lol and have to check my temperature twice a day, if it goes above 37.5 I have to be admitted into Harefield straight away! 
On a brighter note my Lungs sounded good and we seem to be bonding well ;) 

So that's my stuff. But someone I can't stop thinking about is my friend Ashley! 

She has been I the Brompton for months now, away from her husband Alastair and beautiful son Emerson! 

She was a massive support to me and we talk regularly but now she has been put on echmo, thankfully they transferred her to Harefield but is seriously ill in icu waiting desperately for lungs now!! 

I have a lot of friends waiting for transplant but when it becomes this serious you know the wait is unbearable, and things could end so badly if that call doesn't come in time! 
I hope so so much that I see an update any second/minute/hour/day that she has gone down to threate for her shiney new healthy lungs! I know it will happen she is in the best place, I just hope so badly that her body can stay strong in time for that perfect match!

You don't realise just how lucky you really are until your on the other side and see people like Ashley so desperate!! We need more donors and people willing to sign up and for families to know our wishes so more lives like mine and Ashley can be saved! And many more of my cf and non cf friends! Life is so precious and Ashley has a beautiful son and devoted husband! She needs to see little Emerson grow up, not be left without a mummy before he can even talk and walk!! 
So if your reading this and your still unsure about organ donation I hope this helps change your mind! Just imagine if you were in Ashley or Ashley's husband situation, or even baby Emerson! Would you want to grow up without your mum!?
Sign up today it takes less than 5 minutes! 

So lastly this week i can't wait for channel 5 to air a program called the gift of life! It's all about people waiting for transplants, their stories and journeys and also the donors family! On at 10pm Wednesday channel 5! Record or watch it, ESP next weeks Espisode where it shows the story of a friend of mine holly who got her double lung transplant back in February this year and she's doing amazingly well! 

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