Wednesday, 9 March 2016

The trial begins

Yesterday was the end of my 2 week course of IVs. I feel a lot better in myself- more energy, sleeping better, coughing less, more of an appetite etc etc. My lovely friend Donna from belly dancing took me to my hosp appointment to check lung function, weight, have a blood test, take out port needle, get nebuliser meds and start the trial.

Disappointingly, my lung function hadn't shifted at all. Not even 1% up! After two weeks of IVs and all the physio and resting I'd been doing, don't get why it hadn't moved. The consultant wasn't available to see me though, so I couldn't try any other meds or anything so I had to have the needle taken out and see how I get on at home. Hopefully I can get it up through exercise. If not though, they said to just call up and they will get me an appointment.

In my last post, I spoke about a trial involving a smartphone app and recording data to try and keep patients out of hosp and notice if they need treatments earlier on before the symptoms get worse. I started this trial this morning after receiving all the equipment yesterday at the appointment. All the gadgets are quite fun to use and it's so clever how the app just picks up all the data. It's very straight forward for me as the patient. I need to do my weight, lung function, 02 and heart rate levels, activity level, give a score out of 10 of how I'm feeling and how my cough is and give a sample everyday for 6 months. I hope at the end of this my data is useful for the researchers and they can put this app in place for all CF patients- and maybe patients with other conditions. I'm sure this is the way forward!

Here are some pics of the gadgets. Just waiting for my freezer to arrive. I get to keep all the equipment after the trial finishes- including the freezer haha.

 Rucksack to keep everything in 

 02 and heart monitor:
The top number is the % of oxygen in the blood. 100% is the best- most healthy people sit at 99-100%. The bottom number is heart rate. A healthy resting heart rate is between 60 and 100 beats per minute. 

 Phone and the app:
Once I've done each part, the right part turns green

FitBit type thing:
Looks like I'm on tag haha. I press the centre and it tells me how much of the recommended daily exercise I have done for the day. I think it's pretty much a pedometer. 

Mini lung function kit:
I blow into this machine as hard and fast as I can. after the first second or 2, I slow down and continue to breathe out until my lungs are empty.


So that's that! 

Now to focus on exercising more and putting on weight to try and get these lungs better. Need to be well for summer. Can't wait :D 


1 comment:

  1. Now to focus on exercising more and putting on weight to try and get these lungs better. Need to be well for summer.
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