Right so since my last post I've actually had my admission im in no and a 16 day admission after not lasting long from my last admission, think it was a month.
Was struggling a lot, it was around the time when it was sooooo hot and humid and I physically couldn't handle the heat.
I spent most of my days before being admitted, laying on the sofa attached to oxygen, when I really would rather have been out enjoying what I now know was the last of our British summer.
I was admitted with lung function of 15% rubbish sats dropping down in the 80s, no apeteite etc etc the typical cf crap sign of infections, crp of over 100s.
Things didn't pick up at all for the first two weeks and finally after starting hypotonic saline my lung function increased to 25% and few days later I left.
But this time I felt weaker, the whole admission I was asked when would I be visiting harefield next, and that I should be thinking about the transplant route again,I felt very emotional the last admission, everything seemed to be taking longer, recovering from infection, my energy levels, I needed oxygen again to walk about even when well.
And gettin my head around it all was one of the hardest parts, I just cried 80% of the time and if you know me well! I'm not a cryer! not because I don't feel emotions! I just talk things thru a lot with people closest to me, so I don't bottle things up therefore crying doesn't happen :) not this time, with all the talking, it made the crying happen more....one big cry baby hahaha
When I tell peopl this, a lot of people have asked me if the new drug (kalydeco/ivacaftor) isn't working anymore, that's not th case, I just have very damaged lungs and unfortunately the drug doesn't undo damaged that is already there! I am and always will be so very greatful for these past two years extra I have had being on kalydeco, I've had the best two years and appreciated my life so much! So whatever happens, it's always Been for the best!
Anyways so I left that admission an emotional wreck and scared at the thought of transplant creeping back up on me!
Well 6 days later I started struggling badly again, no ernergy, full time oxygen, barely got out of bed or was stuck to the sofa.... I couldn't believe it...6 days that was a joke, that was worse than pre kalydeco days! But if anything it made transplant decisions a little easy to think and talk about.
So I went clinic last Friday. Sats were rubbish, weight had dropped, lung function back down to 15% and I was so breathless and wheezy. They weren't letting me go home without I.vs
They tried to admit me, but I had booked to do a hd brow course on Sunday just gone, so I wanted to do that and come into hospital after, there was no way I was missing it, I would have to be on deaths door!
So starting I.vs was the compromise lol. Transplant was mentioned again and I had come around to the idea of waiting until after my cousins wedding in December, as I am bridesmaid, but the dr basically said to me that I've dipped a lot and I'm so small so could be waiting a while for lungs and can't waste anymore time. I prefer people being straight with me, so she helped clear my head up a bit more, it was also discussed that I am now staying on long term I.vs until I can become stable enough, so could be a few months and then see if I can plan to go in hospital without dipping too much each time.
Well karma hit me, Friday night, laying in bed, lee fast asleep next to me, I couldn't relax my breathing went tigher than normal, so tight, I couldn't catch my breathe, and I just thought sod the course my lungs are more important than a course I could do any time.
I tried squeezing lees arms to wake him up as I couldn't even speak, then He woke up all shocked with glazed eyes and I just said ambulance! ( such a drama queen I know haha) I knew it would be easier and safer than going by car to a&e. So he called my mum and then called the ambulance, my little sister drove my mum over and ambulance turned up, gave me loads of ventolin which them turned me into a shakey crackhead haha and off mum and I went to St. Peter's a&e. Have to admit I was a lot calmer then and spent the whole journey from mine to St. Peter's worrying about a wasp that was stuck in the back with us! That's the last thing I wanted, a nice big wasp sting! Lol
Got to a&e, Spent hours there, being attacked with blood test and blood gases and more antibiotics ( which I refused) and fluids, x rays and felt much better and prob more relaxed knowing I wasn't sat at home. Then I got moved to a ward around 4.30am it was a long night. (I was actually out on a ward and in the same bed as my nan had previously stayed in before when she was alive, we had spent Xmas day with her, was very strange!)
Few hours later I was woken up to have my morning I.vs and my portacath line was blocked, thanks to the guy in a&e he never flushed it after using it and it wasn't budging. Long story short I missed my morning and afternoon drugs because no1 likes being told or advised what to do by patients in general hospital, they also don't like communicating with your specialist hospital for advice. Finally got a cannula in around 5pm and got my ivs then.
That evening I was told I would be transferred to the brompton the next morning first thing. I couldn't wait, I didn't see one nurse wash there hands there, they just left my cannula with out flushing it after my drugs went thru, so as I had no other acess, I was pretty precious over this cannula, so took it upon myself to flush it off, but at the same time making a point that she hadn't done it. The care was just awful and some vulnerable old ladies are just left in there and it's so sad, I may have crappy lungs but at least I can speak up and do something about my care!
Anyways so that brings me to now, I'm settled, I've been very spoilt with visitors, I have a lot of special people that care about messaging me or coming to see me already! My cousins came down from Manchester today, was amazing to see them, I love them so much and hate they live so far away, also one of them is preggers and has 8 weeks to go and feeling her little one moving around made me even more excited! My hubby came up this evening and us 4 went out for a lovely pub dinner down the kings road!
Get to see the girls again tomorrow before they head back and then the countdown until the hen party for the non preggers one next week! So I need to get these lungs in good shape for that weekend! Although me and preggers will be the chilled ones out of all the hens, but I'm still so excited!!
So that's me up to date, I will prob post after my harefield appointment on Wednesday to see what the situation is.
Sorry for the essay, lots to catch up on