Tuesday, 17 July 2012

Say 9...

Day 9 at Brompton, and starting to feel better yaaaay! My lung function is on the up: FEV1 70% and FEV2 90%. When I came in they were around 55% and 60%. Also my appetite is coming back and therefore my weight is creeping back up- put on 0.4kg last week (every little helps!) so now I weigh 46kg. My Sats are also going up, which is the amount of oxygen in my blood. When I came in they were around 93% and now they are up to 97%! This is great because it means that my airways are clearing and oxygen is able to get into my blood again.

My arthritis was still quite bad, plus I had been "exercising" with the physios, which hadn't helped so now I'm on Diclophenac- an anti-inflammatory. I take it with something called Omeprazole to line my stomach as Diclophenac isn't great for your tummy. So in a few days time my knee will be back to normal :D

In other newsss, I've decided to try and make some awareness of a new groundbreaking drug for people with CF and a certain gene type. It's called Kalydeco and is the closest thing to a cure that scientists and experts have come up with :D Disappointingly for me and loadsss of other CFers, I don't have the right gene type (even though I asked the docs to triple check!) that the drug works for; however for the people who do, this drug could literally change their entire lives! It can increase lung function and weight and mean less IV antibiotics and hospital admissions. I believe it works by "unblocking" the defective part of cells in the lungs, allowing water and salt to flow properly in and out of the cell; therefore making the mucus in the lungs more manageable as it thins it. This is the first drug to address the underlying cause of CF, as opposed to the symptoms.

Even though this particular drug won't have an effect on me, it has brought promising hope that other drugs will soon be developed to help all gene types of CF. Hopefully one day soon they will find one for mine! :D

However, as usual these things don't come easily. For the patients who can use Kalydeco, some are still unable to take this life changing drug due to it still needing to be fully approved in England and the costs of the drug. The government can help fund this drug, but it's down to them to decide whether they want to spend some money to help people with CF or if they want to spend it on something else, such as treatment for other illnesses or the NHS or building some stuff or whatever... No one can say one thing is more important than another, but personally, I hope they decide to give us CFers some funding! ;)

There is a petition that the public can sign online to help approve Kalydeco for use in England:
 ------->  http://epetitions.direct.gov.uk/petitions/34753  <----------

lovesss xxx

1 comment:

  1. Good to hear you are feeling better Jojo! Interesting stuff about that new drug, hope they find one for you soon. Take care,
    Gary xx