Thursday, 22 September 2011

IV's, Side Effects and A Potential CF Cure Update

I went to clinic yesterday which I had brought forward due to how unwell I was feeling, they pretty much could tell right away I wasn't well as I could say one word, then had to take a breath, say another word, take a breath, literally every word was exhausting, I also struggled walking from my clinic room to the weighing area which is a probably a 20 second walk, lol. Took me about 5 minutes! Terrible. Also my wheezing was very loud, with every breath came a high pitched crackle which might I add is soooo annoying, imagine trying to sleep at night and all you can hear is this wheeze, grrrr. Anyway, I didn't have to say much, my numbers spoke for themselves and they mentioned IV's immediately. I didn't want to stay in hospital because my Mum is on holiday this week and I hate being an inpatient without my Mum there to visit/support me I do have Josh and my Nanny and Grandad who visit often. But I said I'd like home IV's then if I don't feel that I'm getting the full benefit from them at home, I have to go back to clinic on day 7 and day 14 of IV's, so I can change my mind, or perhaps have a 3-4 week course of IV's to really kick this awful infection that has a nasty grip on my failing lungs.

Now what some people might not know, is that with IV's comes nasty side-effects, it has become apparent lately that the sicker I am, the harder the side effects hit me. When I wasn't this bad, IV's used to make me feel a bit cold-like on the first few days, then I'd pick up. But this time, for example, I've been sick 4 times since my first dose Wednesday afternoon (it's now Thursday evening) I had a terrible migraine, which left me with a pressure-headache which in turn caused a nasty nose bleed (something that's only happened to me once before) I've felt very lethargic, dizzy, faint and I don't have much co-ordination so last night I walked into a wall, yay. It's very difficult giving yourself something knowing exactly how bad it's going to make you feel, but I'm just trying to focus on the good - unfortunately I'm now so bad where IV's don't make me 'better' but they do pick me up a bit, my chest calms down a bit more, my lung function rarely increases but my infection levels do usually drop a bit. So there are some benefits in amongst the evil-ness that is IV antibiotics! There was one good thing which was that I had my PICC in still so didn't have to worry about needing a line put in my arm, which usually causes me stress to the point I delay IV's which is never a good thing when you're this sick.

I did receive some good news which was that I had gained weight! I started the Megace tablet a week before clinic and my appetite has definitely increased and the weight gain proved it! Always good news, it keeps the doctors/dieticians happy and it makes me feel my hard work is still paying off, however big or small the increase, it's still a gain, not a loss and not sustained - It's better! Yay :)

I'd like to finish on a subject which is obviously quite close to my heart, it's something called 'Gene Therapy' which could potentially cure Cystic Fibrosis. I wouldn't have any benefit from it because the point of gene therapy is to stop you getting any worse but because my lungs are so damaged and scarred I would still need a transplant and that is my only option. However, I have many friends with CF who don't deserve to get to this stage and if there is something that could end the suffering and stop new babies being born with this awful disease, then I'm going to do my best to help it.
Millions of pounds have already gone into funding this cure, but they are £6,000,000 away from where they need to be and the researchers have been given 6 weeks to find the money or the whole thing will be scrapped, ending all hope for people with CF who have put so much faith in the fact there is a potential cure out there.
It has been trialled on people so it is quite far into the research, but without the money, there will be no cure, which means my friends, my fellow CF sufferers and the 5 new babies are born with CF each week, well this could save their lives.
If you have any money, literally pennies, any contribution towards the target would help massively. So if you would like to donate, please visit the link below and I am thankful on behalf of the entire CF population if you choose to do so.

Cystic Fibrosis - Gene Therapy Appeal

Thank you for reading, I apologise this blog has been quite long but I do tend to ramble on!

1 comment:

Charlotte said...

Hi :)
I have only recently started reading you blog, nd think you are incredibly brave!!!
i am so glad that the megace has worked, and sorry to hear that the IV's are giving you bad side effects!
Take good care :)