23 September 2016.
I have spoken to one of the Doctors on the CF Ward. She was lovely. I have an appointment for a flight simulation test. This will test whether I can withstand the flight without oxygen. It requires several blood samples being taken from my ear. It’s worth it, it’s worth it, it’s worth it!
I have renewed my prescription and from today I will take every tablet, inhaler, nebuliser and supplement. I have nine weeks to prepare for the flights.
I’m also going to actually use my flutter as it should be used for physio and regularly do the exercises I should be doing to clear my chest. A flutter is a pipe shaped device that you blow into, in cycles, to cause a vibration in your lungs, which in turn assists in lung clearance.
I want to enjoy this experience but more importantly, I don’t want to come home ill and cause H any upset. She deserves a happy, healthy Mummy. That’s the goal. I have a target, it feels great.
Point to note: I appreciate that I am extremely lucky to have H and the fact that she is healthy and happy is a blessing. I do love being a Mum and keeping her safe and happy. That is my life goal that under pins everything. It is, however very easy to lose yourself in that. Having something slightly crazy to focus on is fun.
26 September 2016
The office is extremely busy but it’s fine, I’m managing to clear the ‘to do’ list every day.
FP has prepared a countdown calendar, which has been taped to the wall. I fly to Houston on Friday, 25 November. I have three trials to prepare before then and countless witness statements. I will actually only have two days away from the office as Friday is usually Mummy day in any event. Sarah has offered to use keeping in touch days to cover the two days.
I am going to be the most productive I have ever been over the next nine weeks.
H has noticed that I am a little giddy.
H: “I’m NOT going in the bath”
M: “Well, I’m just going to tickle you then”
H: “Mummy, you are silly”
H: “Argh, don’t chase me”
H: “Mummy, stop!” [giggle giggle giggle]
H: “Stop” [giggle giggle giggle]
H:”Mummy, just calm down”
12 October – Fit to Fly – Hurrah!!!
Despite hyperventilating throughout, I passed the flight simulation test. The idea of being on a plane with reduced oxygen was enough to set my mind racing. It doesn’t matter, I’ll deal with that later. From a lung function point of view, I’ll be OK. I have a letter from the CF Ward to say I’m fit to fly. Hurrah!!!
I just have to maintain the 75% lung function now. Easy peasy… if I‘m able to avoid anyone with any hint of illness, keep up with the meds, nebulisers and physio and get enough sleep.
Hopefully I will start getting affordable quotes for medical insurance for my trip. The quotes to date have ranged between £550.00 and £1,600.00 for a four day trip!! I contacted the Cystic Fibrosis Trust today to ask whether they had any recommendations or tips for getting affordable insurance. The person I spoke to was amazingly helpful*. I now have a list of insurers to try. It’s my day off tomorrow, I’m hoping H will have an afternoon sleep so I have time to contact a few and go through their medical assessments. I’m starting to gather together my emergency meds too and I’ve booked myself a flu vaccination.
“Bit by bit, putting it together”
* Contact details for the Cystic Fibrosis Trust can be found here: https://www.cysticfibrosis.org.uk/contact-us