L'hotel Brompton... It's the Place to be...

Just thought I would update you all briefly as to how I am doing. I arrived at the Brompton on Friday despite the weather being as awful as it was! I'm just glad we went with hospital transport as there is no way we would have had enough oxygen to last the journey! 

Upon arrival my various and observations were not too horrendous, one of my lung function levels (FVC - how much air I can blow out in my total forced expiration) was markedly down from 45% to 33%. Thankfully however, my FEV1 remains stable at 18%, which is good as this is the result which would indicate a more acute increased inflammation. At least I am not battling from such a low as last time! My oxygen sats are pretty similar to that of home (I.e. horrendous, but no more so than at home!). I am able to walk around the ward for physio with a high flow oxygen mask, not solely on the Bi-pap. Obviously I still spend a large amount of time on my Bi-pap (non invasive ventilator) but I'm not on it permanently which is good. I am on two different intravenous (IV) antibiotics, Tobramycin and Meropenum. I am also on an IV anti fungal, as the doctors thought that it was likely to be a fungus irritating my airways. My prednisolone (steroid) has been increased to 30mg from 10mg to help open things up too. As well as lots of IV fluids to help loosen sputum. It all seems to be helping and at ward round today, my doctor said my CRP is now 170 from 224 and I could hope to be discharged next Tuesday if the CRP continues to drop nicely. We will also need to make sure I'm stable on the IV antibiotics they send me home on. I have also had an abdominal x-ray as I've been having a lot of stomach problems, with being on morphine and various other medications. Fortunately there are no big 'obstructions' (lovely!!) so I just need to keep on  drinking plenty, and taking senna and movicol (yum!) .

I am really pleased that this should be a relatively quick turn around... Less than two weeks is a record for me, even on paediatrics! However it also kind of hammers the point home that there isn't too much more they can do for me. I desperately need new lungs. It's just a case of maintaining the status quo at the moment. I'll never be without needing bi-pap again, or high flow oxygen, never be without infection, so will need IVs permanently until I'm lucky enough to get a transplant. However I am thankful that I am allowed to have so much done at home and hospital transport can take me backwards and forwards from my very regular appointments. I hope not to sound despondent, this is just how it is now. Sometimes people can wrongly associate leaving hospital with being completely better, which is not always the case. 

Could you also spare a thought for Luke? As I'm not too ill he's been commuting to Oxford from our lovely friend Eimi's house and coming to me in the afternoon/evening, then tubing it back to Eimi's later in the evening. He's exhausted. In addition to this he is desperately sad that I'm at hospital in the Brompton as opposed to being on ITU in Harefield should my call last Sunday have been successful. I just feel like I am such a burden to him, but I know he doesn't think of me like that and he wouldn't want to be away from me.

On a positive note, my friend Laura has finally had her liver and pancreas transplant! Cystic Fibrosis affects most of the organs and Laura was in desperate need of a new liver and I thank God she got hers today! Here's a link to her blog. It's really interesting to see other ways CF affects the body. 

Thanks to all for reading and please, please, please consider signing up to the organ donation register if you haven't already and tell your loved ones of your wishes regarding it too! Also, here is a link to Rhod (Eimi's boyfriend) and Caroline's fundraising page, they are running the Reading half Marathon to raise money for the CF Trust! Any donation will be greatly received!