Thursday, 26 February 2015

Anti bodies drama

Well nope no new lungs yet unfortunately, however 3 people in one week that I know got their call and one of them is a very very close friend of mine! 
Long recovery process but she's doing amazing and I am so so SOOOO proud of her!! Thanking that amazing person that said yes to organ donation and making this possible!! To be continued..

So my life, right well after being at Harefield on the Wednesday, I had a phone call the Friday after telling me that my anti bodies, which were originally only 8% had jumped up to 58%! As soon as she told me over the phone, I kinda shut off, I remember filling up with teary eyes and my brain just wasn't registering anything else she was saying as much as I wanted to listen! 
I just thought fuck, that's it I'm
Not going to get lungs now- a little dramatic I now realise! Haha but felt like my world had fallen apart. 
They wanted to repeat tissue bloods before they discuss me in meeting etc and said they would send the bottles out but it was only mid day and Harefield isn't far form home so I asked if I could just go to clinic and get the bloods done for peace of mind! 
So mum and I headed there and got it done. 
It's baffles me why it had gone so up high, normally they rise because of blood infusions or pregnancy etc and I clearly hadn't had any of them. Obviously there are Probs lots of reasons and maybe just lots of infections contributed but hey ho nothing can change it. 
For people that don't know (I'm still not 100% with it all) but it basically means like in my blood group a+ out of all the donors that I can match with, 58% I won't match with now, so still 42% I will. But obviously that's why I was pretty upset, my size is already against me, my only transplant options realistically are lobar transplant or lung reduction transplant now as I'm so desperate and finding my size lungs in time will be hard or be a miracle! 
Have to say I was a bit of a mess that day but was really grateful for the love and support I got from family and friends! And everyone I spoke to about it and who explained and calmed me down loads! You know who you are xx

Anyway they told me it would take a week for results to come back, I also ended up back in hospital...

I had to go thru a&e woke up early hours of the morning, mum came over and we headed to frimley a&e, they were fantastic and once consultant Chris got into work And heard I was there he came straight to see me, sorted out what drugs to start, I told him about my anti bodies and just burst into tears like a muppet!  He's DEFO not use to me crying, normally bantering with him or winding him up, not balling my eyes out! Ha 
 He also told me that my aspergillosis levels had gone up, normal there's like two results hey take and one of them had rissen a year ago but Brompton said it was fine until the other goes up they don't treat it.
Anyways so the other one had gone up which kinda makes sense now, I've been so wheezy the last few months and I never use to wheeze much, so whilst I was in, I was put on some fungal Iv plus my other normal I'vs and they tried another dose of meropenum on admission which I was fine with...go back to that though! Ha

So had a rough first few days, temperature was spiking quite high, they had to take a lot of blood for all sorts, that's one thing I can't fault Frimley, they're so on the ball, took bloods as soon as temperature kept rising, even after taking paracetamol just kept getting higher, I felt so crap and emotional, kept going in and out of sleep then waking up with sore throat and crying again, my poor mum, I was a pain in the arse looking back! I was sleeping a lot and they done blood gases which were teeny bit high, but I had asked to try the Niv machine again so they thought it would be a good idea with everything going on.
 It was good but with a sore dry throat and cracked lips, and being the emotional wreck I was, I couldn't hack long on it. 
So after about 3-4 days I started feeling human again, all iv's and stuff kicking in, I stopped crying!  Haha got to the Monday and I was dying to get realeaed as I'm in so often id rather get out when I'm feeling good to make the most of it, they wanted to me to have at least 10 days off the fungal iv to make sure it helps. So I agreed to stay till Saturday of course and also they put me on meropenum twice a day to build me up, make sure I'm completely over my reaction now...
Well how wrong were we all! Ok so I don't do the whole struggle to breathe sats drop etc anymore when I have it, but my face wakes up every day swollen! Everyone thought I was on Steriods so didn't think much of it, until Friday, I was not looking hot, I didn't feel hot! I had Been one it twice a day since Monday and I don't like to post pics of me like this but im going to cause its the reality of what goes on, not like the usual little posey ones on facebook, Twitter or Instagram! Hope your all ready for some mega hotness 

Also as you could tell by my facial expressions I was in a delightful mood over this aswell!! Ha! I couldn't go home that Saturday had to wait for swelling to go down and obviously the meropenum was stopped and doubt it will be used again, which is annoying but not meant to be! 
I also was waking up every morning with banging head aches so so bad, that wouldn't go away, I felt so much pressure on my head, everytime I lent over it would hurt my head so bad and veins in my neck popped out and was just horrible. Wasn't sure if it was all the swelling or something else was going on, also was having really harsh tummy pains, I was literally falling apart compared to the Monday ha so they sent me off for xray on my tummy which was all good thank god (not literally) and then they wanted me to have an mri scan instead of ct, to be honest didn't know the difference, just knew I was going to need a cannula again...

Which bloody hurt! And instead of going in a polo shape thing, it was a tunnel, they explained when I got there, they lie you down Flat, never good for the old lungs, ladies said lips went blue so had to put oxygen on higher, then they raise your legs up, they surround you in like a cage thing around neck and upper chest,  which obviously is like the xray like bits I imagine, then they said its really noisy so had to put earplugs in my ears and then headphones, woman was like do you want music so I was like yeah can't hear anything though, couldn't hear what they were saying, I'm deaf pretty much as it is so as soon as earplugs went in thats it, you could be telling me anything, thankfully I didn't have to do any weird breathing and I kinda heard towards end something about breathe in and hold so I did but couldn't hold for long was like two seconds ha awkward position! They put dye in then cannula that was soooo cold and that was me done, it was bloody noisy though and not good if you get clostophobic!! I just closed my eyes! Was a bit scary not gna lie! Ha 

I managed to get a couple of nights using the niv which I think helped, I felt crap, was so annoying after feeling much better, was a step back, bloody meropenum anyway I left Wednesday a week today/ yesterday! And the mri scan was ok, as far as I'm aware! 

So it was good news on the results of my anti bodies, they have gone down to 32% now, still higher than my lovely little 8% before but I don't think it will be that low again, have Harefield in March so going to be explained all then what this means now, before they said they will take the higher results for a while until they get more repeated lower result etc, suppose they have to be safe which obviously I want them to be! Gotta be matched up as best as possible! 

I spent valentines in hospital and fat haha but on a brighter note when I got out me and lee last Saturday had our belated valentines meal in one of my fav places in box hill in Surrey called smith and western! Loved it and was nice to spend the evening with my hubby :) 
Lots of love to you all xoxo