Thursday, July 31, 2014

Tobi podhaler

There are 4 capsules per dose and you do 2 doses per day. You put the tablets into the podhaler, one at a time, and press the blue button at the top of the podhaler which pierces a small hole into the capsule so that the powder is released when you breathe in. You do 3 breaths per capsule and hold each breath for 3 seconds. A podhaler lasts for 7 days after opening. After this, you throw the podhaler away and open a new box which includes 14 doses of capsules (56 capsules) and a new inhaler. The company deliver enough boxes for 28 days so after this I go back to using my Ineb for one month until it is time for my month back on the Tobi podhaler. 

Annual Review Follow Up 2014

I have been busy with going on holiday, work, coursework etc that I have only just got round to blogging again! I never find the time to update the blog and then when I have spare time I never remember!
Anyway, I had my annual review follow up on the 8th July which all went well. I have put on 5kg’s since my annual review this time last year which is brilliant news as I’ve struggled to get to 50kgs for years and years! My lung function is pretty stable in comparison to last year, weirdly my fev1 was exactly the same. My physiotherapy still needs improvements (meaning that I need to do it), however, I joined the gym on Monday so actually went ahead with what I discussed with Jo at the review. Go me!

I met Chris, the new doctor, and he discussed the follow up with me. He said that the bloods showed my Itraconazole levels were low and I have now upped this to two tablets twice a day to try to fight off any infections I have currently got that are stopping the lung function from increasing. I would note what the infections were but you would only be sat there thinking ‘WHAT?’ if you didn’t have CF. We also spoke about inhaled antibiotics to replace the nebulisers to try to find some more time to fit in physio and I have now started an inhaler called Tobi podhaler instead of the Bramitob nebuliser. I am getting on with it quite well and it’s so much easier and quicker to use. However, Jo warned me some people have said they get a ‘horsey’ voice with it and guess what... I happen to be one of those people. I am still on Promixin on my alternate month, but Chris wants to try me on Colobreathe at my next appointment which is the inhaled replacement of Colomycin instead of Promixin. I will upload a video clip of me doing the Tobi podhaler so any CFers who haven’t seen this before can have a look.

There was nothing major at the review and I got to go on my holiday!


Tuesday, July 01, 2014


Today was #CFyelfie day, where you take a photo of yourself (selfie) wearing something yellow and post it to Facebook and Twitter with the caption '#CFyelfie' to raise awareness and join in with the Cystic Fibrosis Trust No Party party events month.

It is called a No Party party because...

"The Trust has achieved a lot since 1964, but until everyone with cystic fibrosis can expect to celebrate their 50th birthday, and look forward with confidence to many more to come, it is no time to party. Instead the Trust is working harder than ever to reach the day when everyone with cystic fibrosis can receive the treatments that transform their daily life."

If you haven't done yet, text CFYL14 and your amount £3/£5/£10 to 70070 to make a donation and upload your CFyelfie to Facebook and Twitter using the hashtag! 

Me and Maddy have done our bit, now it's time to do yours!