80%!!!!!!!!
I can’t believe it! I’ve gone from 67% to 80% in 5 weeks and I’ve also gained 3KG!!!!! AMAZING!
As I mentioned in my previous post I have had a cold and I went to the hospital to do blood tests, get antibiotics and do a sputum culture earlier in the week. I called the CF coordinator at the hospital yesterday to get the results from the tests and mentioned that I have still had a cold. I decided to go into the hospital yesterday to see my doctor to see if I could prevent my cold from getting worse. I was so nervous to do the lung function- I think I’ve secretly been avoiding doing it because I was so worried that it wouldn’t be what I wanted it to be. Mum bought me a little home lung function monitor a couple of days ago and I refused to try it out of fear!! I bit the bullet and decided I needed to face reality whether I liked it or not. I did my first test and it was 78%! I was amazed but suddenly 80% was within reach and I was determined to make it. On my second try and I made it and I’d compare the feeing to winning Tattslotto!! I had not been at 80% since August 2009. After, my doctor and I looked at a graph that showed all my lung functions from 09 to present- I wish I had of got a copy to put on my blog. If I can get one I'll post it on here because it’s a very good visual representation of my decline in health over the past 2-3 years and my rapid increase in the past 5 weeks on KALYDECO!!! :-D
I know it’s just a number but I feel like my FEV 1 lung function numbers have been ruling my moods for my entire life. Mum and Dad would drive me to Melbourne from Shepparton (2 hour drive) when I was younger to go to my doctor’s appointments at the Royal Children’s Hospital every 3 months. I remember the drive home ever so distinctly- it was either a celebration and we would stop on the way to have a nice dinner and talk and laugh if my lung function was good and if it was bad, I would cry (mum often cried too!) driving down Flemington Road because mum and dad would be so worried! Looking back now I remember I use to hope that my lung function was good so that we got to go out for dinner and mum would be happy and I never really associated my lung function with my quality of life, future or health in general. Whilst I did grow old enough to realize that going out for dinner was not the epitome of a good lung function result I have continued to be ruled by a number as I grew to understand the importance and impact that these numbers could have on my health and my life.
When I moved from the Children’s hospital to the Alfred in 2008 I saw a decrease in my lung function and this mortified me. I had always been in the 90% range at the children’s and suddenly I would see myself in the 80-70’s!! After a few changes in my health care I moved to Monash Medical Centre in 2009 and my health began to improve with the help of my amazing doctor (present doctor now) I maintained 80% for a while but complications and lung infections got the better of me and ever so slowly over the last 2 years I’ve got down to the 60%’s. If you look at just numbers you would think there isn’t a great difference between 80% and 60% however when we are talking lung function every number counts so much. I can’t explain how hard it is to get a number back once it’s gone- its actually almost impossible. It’s like each number is a day of your life and every time that number gets smaller you feel like your closer to the end. To a certain extent I guess I see my life on a scale of 100 to 0, the lung function scale. I’d said goodbye to 80% in late 2009 and I honestly, honestly thought I’d never see it again! I had accepted that the 60%’s was the norm and this was how it was. I had said to myself if I could always keep above 40% I’d be okay, it was like 40% was the dark zone and I never wanted to see that! BUT NOW I have KALYDECO and it’s a miracle and I’m looking 80% right in the face! I’d love to say goodbye to 80% and say hello to 90% soon, but I’m taking one step at a time J Whilst my lung function is on the UP these numbers still continue to affect me and all the other G551D C.F patients eligible for Kalydeco, as we are constantly plotted on grids to determine whether or not we should be granted this amazing drug. I hope that very soon we can all stop plotting our lives on lung function scales and all have access to KALYDECO!!
When I moved from the Children’s hospital to the Alfred in 2008 I saw a decrease in my lung function and this mortified me. I had always been in the 90% range at the children’s and suddenly I would see myself in the 80-70’s!! After a few changes in my health care I moved to Monash Medical Centre in 2009 and my health began to improve with the help of my amazing doctor (present doctor now) I maintained 80% for a while but complications and lung infections got the better of me and ever so slowly over the last 2 years I’ve got down to the 60%’s. If you look at just numbers you would think there isn’t a great difference between 80% and 60% however when we are talking lung function every number counts so much. I can’t explain how hard it is to get a number back once it’s gone- its actually almost impossible. It’s like each number is a day of your life and every time that number gets smaller you feel like your closer to the end. To a certain extent I guess I see my life on a scale of 100 to 0, the lung function scale. I’d said goodbye to 80% in late 2009 and I honestly, honestly thought I’d never see it again! I had accepted that the 60%’s was the norm and this was how it was. I had said to myself if I could always keep above 40% I’d be okay, it was like 40% was the dark zone and I never wanted to see that! BUT NOW I have KALYDECO and it’s a miracle and I’m looking 80% right in the face! I’d love to say goodbye to 80% and say hello to 90% soon, but I’m taking one step at a time J Whilst my lung function is on the UP these numbers still continue to affect me and all the other G551D C.F patients eligible for Kalydeco, as we are constantly plotted on grids to determine whether or not we should be granted this amazing drug. I hope that very soon we can all stop plotting our lives on lung function scales and all have access to KALYDECO!!
xxxxx AP
Awesome. and almost identical.results to what Dean saw after 5 weeks. We just saw the G.I. doctor yesterday and she instructed him to transition to 1% milk from whole milk! Be careful! You will gain A LOT of weight! So stay in shape because once you start packing those pounds on, from what I've observed watching my son, they are HARD to take off! Thank you VERTEX! Great blog!
ReplyDeleteDon it is Jessica Nickless here who follows Dean's blog on You Tube. I think i have told you before about the fight we have on our hands over in the UK getting Kalydeco made available due to the cost :( Alex has been a superstar and has completed a short anonymous survey for our lobbying Group Quest for Kalydeco. I was wondering if you/Dean would be happy to as well? We need proof that Kalydeco works in the long term, increasing quality of life and reducing admissions & meds. As we have been told the NHS don't believe it is more effective than traditional treatments. xxx
Deletehttp://www.surveymonkey.com/s/RNNC8HN
Sorry Don also we are collecting personal statements of how Kalydeco has changed your lives & Dean's health. I know i am asking a huge amount from you but if you could just write one paragraph for us it could go a long way to getting it made available in the UK :) We again obviously keep your statement anonymous it is just for the higher powers in the NHS to take into account. Our email address is patient.interest.group@gmail.co.uk
DeleteHi Jessica,(and sorry to hijack your blog Alex), I did see your petition but thought that you had to be a U.K. resident. I would be happy to advocate for Kalydeco for CF patients to the NHS. And BTW, Vertex released it's a phase 2 study which showed drug endurance out to 96 weeks(up from 48 weeks)! And that is with FEV1 increase of 10%! That means the drug works in studies as promised for up to 2 years without diminished efficacy. I CANNOT BELIEVE that NHS thinks its cheaper to pay for continuous hospitalization for CF patients rather than this highly effective drug. 30 pounds in 4 months! And blood work that was out of normal at last clinic ALL in normal range. AND elevated liver function from pre Kalydeco clinic found DOWN too! Got your email-will send.
DeleteYes so sorry Alex i am hijacking your blog here :( The petition can only be signed by UK residents unfortunately but the survey link is open to all worldwide.
DeleteIt is shocking that the NHS think this way and i am sure it is just an excuse to not prescribe as with stories so exciting as Alex's and Dean's who can argue with the facts! Hence why we are going to present the English decision makers with these testimonials and the survey results this week to show we have done our homework and are not just desperate parents & CF patients (which of course we are!).
Sent it!
DeleteAs always...a fantastic update. We are very Happy for you. The bit about the journey from clinic - I bet EVERYONE can relate to that!! We have had two girls in our group start Kalydeco this week (on the compassionate program) So all in all it's been a very uplifting successful week. Still got a good bit to go but together we will fight to have Kalydeco available for everyone who can have it...Well done and keep up the good work - giving people hope xx
ReplyDeleteI love how Faye Upston (6 weeks on Kalydeco) describes her new found weight gain and associated curves as her K-bod.
ReplyDeleteAre you and Dean in Australia Don?
Hi, Dean and family reside in Roswell, Georgia, USA
DeleteHi Don, Thanks for your comments! I watched some of Dean's youtube blog posts- FANTASTIC! so pleased he is doing so much better and i hope he continues to stay healthy!
ReplyDelete:-) all the best,
AL
Thanks so much! Looking forward to your next post!
ReplyDelete