Severe emphysema - my 6 monthly visit to Specialist

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

29 Replies

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  • Read all of your post and things sound pretty positive to me. Wishing you well. Xxxx

  • Thanks Sassy. I too read yours and always interested to see how Pete's doing .. and you too of course. Must be really tough for you as a carer, sometimes I think it must be worse even. Hope your daughter-in-law ends up with a full recovery from her breast cancer too.

    And yes, I am damn lucky!

    Mx

  • Thank you so much Michelle. Lots of love. Xxx

  • I am pleased it went so well for you. A positive result, a nice young doctor and a swimming pool thrown in! :)

  • Yes, aren't I the lucky one. Just need Mrs May to be nice to those guys in Brussels and get everyone to continue with the reciprocal health agreement, or we'll all be landing back in the UK. ;)

  • Fingers crossed.

  • All sounding pretty good. Wishing you the very best of luck with your future tests. Enjoy your swim. XXX

  • Thanks Pam. :)

  • Wishing you the very best wishes.

  • Thank you! :)

  • Hello Michelle.

    Your post made me smile from ear to ear. A very nice young man is always handy. πŸ˜‰πŸ˜ƒπŸ˜ƒπŸ˜€ I am also so pleased that you are so proactive with trying to get the best treatment for you. Oh and the pool aquarobics sounds like a lot of fun! I love that you are taking steps to enjoy yourself and exercise.

    Have a lovely weekend!

    Cas xx 🌿🐚🌿🐚🌿

  • Thanks Cas. Great to hear from you and I hope that things are going well for you too. I think of you often and how inspirational you have been to so many. Always helps to get myself off my butt! Big cuddle for Chom. You have a great weekend too.

    Mx

  • 😘😘😘

  • Hello Michelle I was very interested to read your post as we also live in Spain and I have read about coils and wonder if it would help my husband who has pulmonary fibrosis. We have another appointment with the consultant on June 8th so will try to find out more. Like you we are waiting for the pool to warm up so John can do some exercises in it. The only problem is the steroids have played havoc with his arms and legs where the skin has got so thin, every little knock seems to make an open wound and until they heal up it may not be wise to go in our pool. Hope you get on OK with your assessment for the coils. Carole x

  • Hi Carole, lovely to hear from you. I know exactly what you mean about steroids and thin skin. I have to be so careful. Sometimes I look as if my husband has beaten me up as my arms get covered with bruises and red patches. When the skin is broken I'm covered with bandages. Sometimes I look as if I've slit my wrists. Haha! No I know it's not funny but I have to keep laughing! Long sleeves are the answer but it gets so hot here. I have to waft around in kaftans. Ask your doctor what your husband can put on the wounds to allow him to swim.

    I'll keep you posted about the coil assessment. In the meantime, where are you living in Spain? I'm in the Valencia region near Denia. Mx

  • Hi Michelle we live in the province of Almeria in a village called Arboleas and we love it, but life doesn't let you be happy too long does it, life is not quite the same now, although John has definitely improved, he is trying so hard with exercise and he is not so depressed now he is feeling a bit better. Likewise John is always saying I have beaten him up when his arms and legs are full of plaisters! and thank you would appreciate keeping me informed re the coils. Good luck with it all. Carole x

  • Gosh Almeria! Even hotter than we are!! Will definitely keep in touch re the coil procedure. Just wish I could keep the oxygen levels up high enough to exercise more! Hopefully, the pool is the answer. Mx :)

  • It's great when you get on the right track. Things are looking up for, you well done.

  • Thanks! :)

  • Glad things looking positive. Hope all test results positive for the procedure. In the meantime keep up the good work with your exercises and njoy that pool xx

  • Thank you so much. Hope things are going well for you too. Mxx

  • Well done Michelle, looks as though things are going swimmingly for you and that upon meeting your new, young doc, you didn't recoil.

  • Hahaha! Good one. M :)

  • Glad things are looking up. Nothing wrong with a nice looking young doctor

  • Absolutely! Thanks Nichola. :)

  • Always here if you need to talk

  • That's good to know, thank you! :) xx

  • Good news Michelle, time to hit that pool.

  • Thanks Billiejean! I'll report back soon. :)

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