I'm pleased ... well, sort of! Had my appointment with the specialist this week and I was a bit scared about what they might see from my latest x-rays as it's been a year since the last one and I've been feeling more breathless recently. He was a replacement consultant as my previous lady had left. Now I have a 'very nice young man'. Haha! Things are looking up!
These appointments are always a bit tricky living here in Spain (their NHS is brilliant, but they are not supposed to speak other than in Spanish .. just in case they have got it wrong .. the English that is!) so I find it best to take a translator with me. (When I'm anxious all the Spanish I've learned goes right out of my head, and I need to be sure I've understood them properly .. and that they've understood me.)
He said that there was no change on the x-rays, which is good I guess. No nasty shadows etc. Being a bright-young-chap I thought I'd ask him about any surgery that might help. Unfortunately, Lung Volume Reduction Surgery is not appropriate as the whole of my lungs are badly affected, and I'm 6 months too old for a transplant as 65 is their cut off date - guess I should have got worse earlier!!
So I mentioned the coils - we all had a giggle at first as things got a bit mixed up in translation until I said that it was a little late for a contraceptive coil and that I was actually referring to endobronchial nitinol coils, which luckily he was aware of. Happily he agreed that the treatment might help me, especially as I have recently had problems with walking/exercising with my pulsed ambulatory oxygen - which he said didn't surprise him.
So now it's time to be screened for the procedure .. ECG, CT Scan, Ultrasound, Spirometry tests etc. and he'll confirm whether I'm a suitable candidate when I see him next in September. Exciting eh?! ( More info here if you're wondering what the treatment is healthunlocked.com/blf/post...
In the meantime he told me that I'm currently on all the meds available for my condition i.e Symbicort 320/9MCB and Bretaris Genuair inhalers twice daily, and Theo-dur 200mg in the morning. My GP had told me to use my Ventolin inhaler 3 times daily but the 'very good looking nice young consultant' could see that on top of the other inhalers, it gives me the shakes and told me to stop that and just use when absolutely necessary.
I asked him how I was going to be able to improve my muscle strength if I can't exercise properly. He told me to keep on with it as much as I can and put me on 5mg Prednisolone daily, cutting down to 2.5mg and then stopping. Unfortunately it's not making much difference so far, but will keep going before upping it to 10mg. I've used short courses of 30mg over 9 days and that's done the trick brilliantly earlier this year when in the UK. Makes sleeping difficult though and my skin is already so thin so don't want to get stuck on anywhere near that sort of level.
Anyway, if you've read this far, thank you! I'm now just waiting for the swimming pool to warm up a little bit more and then I'm going to get advice on aquarobic exercises. Last summer I was able to swim quite well without any oxygen, so we shall see how it goes.
Thank you all for being there. Much as my husband is a huge help, I do think he doesn't really want to talk about any this. I guess it scares him.
Love to all, keep well, or get better soon. Mx