I'm back in hospital I caught a cold from lee and started feeling unwell quite quickly on Saturday/Sunday so called up the unit Monday and got seen yesterday and got a bed on the isolation ward as cf unit was full, hoping to get over to cf unit tomorrow.
Despite this I've actually been keeping quite well for me since my last blog post, it seems maybe treating that aspergillosis might be keeping me going a bit longer in between needing ivs!
I have noticed I'm going through a lot more oxygen tanks in a week than usual and its on a lot higher when I'm out and about but overall I was good!
The week before last had been a bit hectic and not because of me for a change!
My little sister who is 18 was taken ill from work last Saturday complaining of awful stomach pains she could barely stand, we all assumed it would be her appendix, mum called me as soon as she was going to a&e and I wanted to be there.
I'm so use to hospitals I know the crack and wanted to be there to not only support her but my mum too, probs not best idea because of bugs and all sorts in those places but when it comes to family you do what you have to, I wouldn't feel comfortable at home!
So they took bloods put a cannula in and gave her paracetamol iv.
About an hour later after getting her blood results, the doctor came in to see her, she had gone to the toilet with mum and he just assumed I was the patient, sat there on oxygen.
It was quite funny, I told him as he started talking to me that I wasn't the patient and explained where my sister was. He went away, came back and said "are you ok?, your on oxygen" lol I had a little giggle and told him I was fine just waiting for new lungs!
And off he went!
So he came back once my mum and sister came back into the bay, and he explained that they didn't think it was her appendix as her infection levels weren't high, however totally different problem, her hemogoblin levels were 5.7, we all looked at him a bit unaware of what that meant, but we're very quickly told that it was quite serious, they should be 11 and they start worrying when they reAch 8, they rushed her into the majors department of a&e and emotional as you can imagine my sister was a bit panicked by what was going on, they were sticking ecg machines on her and heart monitor bits and doing blood pressure etc, for someone who doesn't have to deal with all that and how they were acting, it can be scary and she was just feeling rubbish anyways.
I have to say mum and I are use to this and we were worried! They said she only had 1/3 of her bodies blood and were surprised she was still even waking around and had collapsed yet! But because she's young her body coped better.
Cut along story short, she spent a week in hospital, done a few tests, gave her 4 bags of blood
(A+ same as me I now know!) and can't really understand what caused it, she will have to go back for a few tests, I think they want to try and do a bone marrow biopsy again and a few other bits. But we might never know what happened or could take many weeks till they fine out, she's now on iron tablets 3 times a day and folic acid! And will have to go back for bloods every so often to check her levels aren't dropping again. So random and had no idea!
After everything that happened with Hannah and it made me realise how important it is to give blood, she has 4 bags of blood and that wouldn't have been possible without the help from generous people who donate, I can't due to my illness but I would if I could, I thought the only experience I would ever have would be for transplant, it just shows you how life can surprise you! So please anyway can and its so easy! Please donate https://www.facebook.com/NHSBlood
I had my 6 months review at Harefield on Wednesday too, I forgot how hard those days are, literally wiped me right out, I stayed at my aunties the night before, as my sister was ill in hospital and dad needed to be around to get my other sister from school I asked my auntie to take me and then my hubby got a half day and met me for the drs bit after lunch.
I saw the lovely Brian, I have to say all the staff are so lovely there but Brian's my favourite and he's known me since 2011 now, we were going through my anti bodies a bit and he explained more about lobar transplants and lung reduction. The type of Transplants which is what I am most likely to have as I'm only 149cm in height so teeny!
He drew little diagram of the lungs to show how it all works, was good for lee to see as he can't make my appointments normally!
He said they were going to discuss me again in there meeting on Thursday with all the team and I'm still high lighted as more of an urgent need for lungs now, but wanted to make sure I'm on the surgeons radar!
He then gave me a few things to fill out, one was a mood questionnaire, I thought oh here we go, I'm so not a despessive person I can't see the point in even entertaining these forms, well I started filling it out, and ended up actually fitting a lot of the "less positive" shall we say answers than what I thought I would be, I think it's how it was worded!! Very clever Harefield! Lol
So I'm back in frimley, was struggling a lot yesterday, heart rate was really high so they put me on Niv in clinic to try relax me, just about managed to do lung function which was 17% not sure what infection markers were, weights dropped a bit to 38kg but I've been quite sick and vomiting the last few days.
They have put me on my usual ivs cef and tobrimycin and given me
Caspofungin to treat the aspergillosis again, bloods showed last time I was in that it had gone down so worked so no harm in giving it to me again whilst I'm in he said, also stops thrush which unfortunately is a lovely side effect to antibiotics, doesn't always happen but becuaSe I'm on kalydeco I can't take tablets to clear it, so I'm more than pleased to go on this drug!
Chris my consultant did mention something about my mri scan I had last time, before I left hospital, it's nothing to worry about but it showed I had some narrowing in one of my my veins that goes to heart, more than likely due to having a port over the years, I've had one since I was 9!
He said if I was a normal person they would Prob put a stent in but just going to keep an eye on it for now and let Harefield know, so they are aware of it. Kinda makes sense why I have a massive vein that pops out a lot on my neck if I cough or just a lot more now than it use too! But It's not serious so don't need to worry about it!
Nothing much to report, this ward is ok, but I much prefer the cf unit, funny how quick you get use to things, still much better than the Brompton so can't complain!
Here's hoping my next blog with be about new lungs! Want it more than ever now, life feels slow, and on hold, can't do much, can't plan much, il always be as positive as I can, but it's becoming harder and harder and completely taking over my life now!
I so wish I could rewind time back to when I was 18/19 or even last few years where I had independence, I hate relying on people, I hate that my head is still so young yet my body feels so old and slow!
Anyways it will happen and I will get my life back, all good things come to those who wait aye!
Xxx
Also if anyone who is reading this and would like to challenge themselves this summer and help raise money for Cystic Fibrosis at the same time here follow the link and sign up today!
