229 days of Kalydeco

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Felt like being creative with the title so went with 229 days rather than almost 8 months.
This is 458 magicbluepills. Pretty amazing what many small pills in a row can do.

I had clinic yesterday and my FEV1 was 69%. Whilst not in the special 70s, it was 2.36L last time and 2.35L this time, so it really is an insignificant difference! I was expecting it to be lower as I have been quite stressed and busy with uni recently. My grandpa also passed away. Despite all of these stressors my lung function has been stable. Previously, when I was very stressed during my final year at school, I was quite unwell and varied between 60 and 75%. Now, 11 years later, I’m still at 69% 🙂

This means I have been stable between 69-71% for 8 months.

It has now been 8 months without inhaled or intravenous antibiotics. I think the last time I went this long was back in 1994. But even back then, my pfts varied. My cough is slightly productive in the morning but I rarely cough during the rest of the day. It is also a mostly dry cough. My sputum cultures have not changed, the pseudomonas is still there. My sputum tests don’t show the amount of pseudomonas, but I am sure the amount has significantly decreased.

It has been 6 months with no chest physiotherapy now, but I am still doing pulmozyme and bronchitol regularly. This combination, along with the Kalydeco, is definitely helping to keep my lung function stable.

I was looking back through a few folders that have copies of my pfts/admissions:

Number of admissions (respiratory- intravenous antibiotics):
1994: 1, 1995: 2, 1996: 2, 1997: 4, 1998: 3, 1999: 4, 2000: 3, 2001: 4, 2002: 4, 2003: 3, 2004: 2, 2005: 3, 2006: 4, 2007: 3, 2008: 3, 2009: 3, 2010: 3, 2011: 4, 2012: 3 and… 2013: 0!   (none since sep last year)

Total= 58 admissions (plus others for sinus surgeries, gastro blockages and a stroke in 1993…) This equals about 150 weeks. Thats 3 years.

Thats enough for my lifetime 🙂

 

FEV1 May Kalydeco

My FEV1 is stable at around 70%, my highest in 3 years. My BMI has plateaued at 22.

Weight May Kalydeco

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3 thoughts on “229 days of Kalydeco

    Oli Rayner said:
    May 9, 2013 at 1:43 pm

    This is awesome. Keep it up Gen.

    David Turner said:
    May 13, 2013 at 8:53 pm

    This is great to read – thank you for sharing the news!!

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