My Breelib challenge
PHA UK member Heather Pollitt has recently transitioned onto Breelib, a nebulising device used to take the drug Ventavis. She shares her experiences and advice.
Breelib is the size of a mobile phone and it has a rechargeable battery inside. The specialist nurse asked if I felt that I could try it. It would open up the small arteries and the drug would go straight to where it was needed via the nebuliser, thus avoiding any side effects.
I bowl up at Sheffield Hallamshire complete with overnight bag and a list of all the medication I’m already taking. There’s a lovely bed waiting for me in a room with three other women, all of whom have PH and one other person who’d come to be inducted into Breelib.
The learning process started straight away! I was shown how to assemble the electronic nebuliser, which meant clicking two essential parts into place. Then I was shown the small glass phials of Ventavis that looked like dolls’ house glass skittles all packed in a row.
I was shown how to use a plastic applicator to break the top off the phial and then how to syphon the liquid from the phial and squeeze it into the heart of the nebuliser. Click the top down and then it’s ready for use. Press the button and, hey presto! It lights up!
Now, if you’ve been a smoker, and I’m a ‘never’ smoker, you have a decided advantage. It’s like an E cigarette. That’s why it took me a few goes before I got the knack of it. Pam, the nurse, demonstrated how to draw the mist into the lungs in a series of slow, steady breaths.
She had a ‘dummy’ version with water in hers. After about four tries, I got it! It’s all about breathing in and not letting any breath go outwards and into the mouthpiece.
It took about three minutes before the device flashed three times to tell me the dose was complete. I felt so stupidly proud of myself! But Pam made me feel as though it was a real achievement.
After each dose, the device must be dismantled and rinsed in zero water, which is filtered water. There’s a special filter jug provided with a tiny tap on the base for filling up small bottles.
The whole thing has a neat carrying case for going out with. It’s functional but I could think of a nicer colour than the strident turquoise that draws attention to itself! Black or grey would be much better.
The rest of my induction story is quite smooth. I had no ill effects: I was using the device efficiently and all my ‘numbers’ were ok when I said goodbye to all my new friends and struggled to carry home a cart load of equipment in boxes and bags. The refills and subsequent doses were going to be delivered as required.
I didn’t feel any better for about four weeks! And I got fed up and despondent at having to do this procedure every three hours! I couldn’t believe how quickly the time went by. Then gradually over the course of one week, I began to feel brighter and to breathe more freely.
Now it felt worth all the trouble. And by now I’d got used to how to cope with taking the dose in a café or in my car. I can honestly say I’ve not had any strange looks or been questioned as to whether or not I’m smoking. I had all my retorts ready though. ‘Have you heard of the incurable invisible illness?’ I would say, waving the PH information sheet at them, but this was absolutely not needed.
I guess my biggest triumph was to travel to Spain, taking the Breelib nebuliser into the cabin and using it during the journey. Here’s the procedure, which worked fine with Ryanair.
- Apply online for a permission to carry a medical device for use on the flight. (you need a ‘fit to fly’ signature from your consultant or GP.)
- Complete and return the form by email to the flight operators.
- They will stamp the form and email it back to you. Keep this to show at the airport.
- Just take one or two doses with you into the cabin. Check in the other phials to be put into the hold.
- Just do your procedure then squirt the zero water on to the parts, patting them dry with a tissue. (It’s best to do this in your seat to avoid germs in the plane toilet!)
It all worked for me and it can work for you! Stick with it and it could make a big difference, or even a small difference, to your life. Ventavis has a cumulative effect and that’s why it takes time to kick in with some people. And that’s why we have to take six doses per day to keep the levels up. I wish you well!