Respiratory Nurse update

Hi I am back from my assessment with the Respiratory Nurse she is someone I know as she is on the same Breathe Easy Committee.

The start was not too good, I had taken a cancelled appointment but no one had told her so she did not have my notes, the oximeter would not work properly because my hands and the room we were in were very cold, and the spirometary results I had taken from my last visit to the doctors was of no use because it was plus or minus 10%.

On the good side she took my blood pressure which was good and listened to my chest, she said I was a bit tight on the right side so would I take steroids for 5 days, she knows I hate them they make me ill, but I said I would.

I did a short walk test for her which showed her how breathless I become.

She thinks the headaches are carbon monoxide retention but is not sure why I am shaky as I am not using my Bricanyl too much, she also noted the change in my voice and that I had lost lots of weight. (I believe the weight loss is because I have had no steroids for over 18 months).

Conclusion

She believes it is natural progression of the Emphysema so when I go to RH next Thursday I will do the 6 minute walk and I am also tell them if I am feeling any different after the steroids and they will relay that back to her.

She is going to speak to my consultant with a view to getting a CT scan and spirometary done soon.

I am happy with the results so far.

polly xx

7 Replies

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  • So pleased you are happy with your results Polly. People we haven't seen for a while will say "oh you look well" little do they know what we have to put up with and what it's really like for us behind the scenes. I don't like steroids either they make me tremble. xx

  • Hi gilly I agree they don't have a clue. I am quite hight the second and third day of steroids then I come down with a bump, no sleep, irritable, every gland in my body hurts and I have a really bad time getting off them I think i will be o.k. with 5 days but 10 days and it takes me ages to come off them.

    polly xx

  • Hi Gilly at least things are in progress. As to steroids I take 20 mgs every day permanently in addition to more meds than you could shake a stick at and oxy 24/7 whilst keeping my co2 levels in mind. When my oxy reaches 94 I come off oxy until it drops below 90. I am on palliative care with a community matron etc so closer to the final page. With the help of my wonderful wife I stay happy. That's the best thing we can all do - find a way and there are many - to stay happy.

    Good luck

    Chris

  • You've got a thorough resp nurse Polly, she sounds as if she definitely knows what she's doing

    Lib xx

  • I agree she works very close with the consultant and probably knows as much as him, we have a very good resp team here.

    pollu xx

  • I think I would ask for it to be done again in the proper conditions.

    Lynne xx

  • Good to hear things going well for you Polly,like Lynne,I think I would ask for a repeat,in better conditions! However if the nurse gets the consultant, to agree to a ct scan & spirometry,that will put you in the picture better.Good luck with it all,

    Love Wendells xxx

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