Well Ive had my sleep study/polysomnogram

and much to my (massive) relief, I'm not in respiratory failure, which is what the consultants were concerned about. I do have some sleep apnoea and desaturation but the decision is to hold off on NIV as he thinks it will probably make my situation worse as it appears I am also borderline hypersomniac. I will get followed up by the sleep clinic yearly as its likely that I will need NIV at some point due to the restrictive lung disease caused by severe scoliosis (that's why they thought I may have respiratory failure). Lots of relief in our house tonight, I hope it stays that way for a few years yet..!

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That's great news! Really pleased for you and hope what they're worried about never happens or is a long time coming.

btw I know it's not on this thread but meant to say on your other one, really pleased to hear that you're retraining in something you want to do (the psychotherapy). I imagine it must have been really frustrating having to give up work so very pleased to hear you've found something which accommodates your lungs AND which you really want to do and I imagine will be a satisfying second career.

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Thanks philomela I don't think Ive ever been so relieved the thought of those machines shoving air in my lungs scares me! I know it's likely in the future but rather I was 50 or 60 and not 40!

Now that's sorted I can ask consultant next week about adrenal issues as I'm wondering if that's the cause of my tiredness as well as a few other things - like plenty of folk on here Ive had loads of long term oral steroids plus steroid injections 3 x a year.

I am loving the psychotherapy. It's funny how life turns out eh - was so gutted leaving nursing after 14 years, it was like losing my identity. And my brain felt like it was turning to mush! Lol. I'm just about managing to keep up with the workload and its just fab really :))

Next week I'm having IV bisphosphonate infusion (zoledronate) - anyone on here had it? Potential side effects are horrid, I'm having a week of oral steroids to try and avoid them but I'm not looking forward to it. If anyone's had it and can put my mind at rest, please do

Philomela I hope things settle for you soon

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Thanks! Hope you're celebrating with something fun. And it's not too hot where you are. And hope the adrenal thing can be sorted if it is there - know from what others on here have said that sorting it can improve other things.

Not the same but I had a period of working in a horrible job while dealing with lungs (undiagnosed at that point) and nothing else - very demoralising and I was so glad to start my masters as brain also felt like it was turning to mush then! It's definitely good to have more purpose to things.

Things have settled down a bit with me thanks which is good - don't think I'll have any more admissions now, it seems to have been a blip, maybe the tree pollen? On the other hand am having cons issues again - won't hijack your thread/bore you with them but really, it's like a soap opera sometimes! Makes me really cross and messes with my head. Crossing fingers I can do a bit more with the next appt.

I know nothing about that infusion but sounds nasty, hope not as bad as you expect.

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Thanks! Hope you're celebrating with something fun. And it's not too hot where you are. And hope the adrenal thing can be sorted if it is there - know from what others on here have said that sorting it can improve other things.

It's been blisteringly hot! But so far although I'm struggling a bit, I'm not yet on oral steroids, last year was horrific. I also am using my scooter if we go into town which I am slowly accepting as it makes things far less stressful and physically exhausting. Not brave enough yet to use it on my own though so I'm still not going out if my lungs are crap - I just feel too conspicuous and vulnerable. I will talk to consultant this week about adrenal issues - ironically I have to go back on oral steroids for a week prior to the infusion to reduce side effects (wish I hadn't flipping read about those tbh!!). We did go out for a meal with friends to celebrate - well, they scoffed and I drank wine hahaa

Not the same but I had a period of working in a horrible job while dealing with lungs (undiagnosed at that point) and nothing else - very demoralising and I was so glad to start my masters as brain also felt like it was turning to mush then! It's definitely good to have more purpose to things.

I was lucky I guess - I loved my job but you're right, it's so demoralising. I was spending 4 months off work, making it back for two weeks and then ending up back in hospital to start all over again. It wasn't fair to the patients on my caseload (no one supports them in my absence, good old NHS!) So I the end I felt it was best for me and them to just resign. Stupidly I could have got medical retirement with full pension but I didn't know - and employer doesn't tell you! In a funny way things have turned out okay now I'm doing a course I love and the eventual work will be far less (physically) demanding so I should be okay some of the time! Not sure my brain is up to doing PhD stuff though, I don't know how on earth you manage that and being unwell too. Hats off to you

Things have settled down a bit with me thanks which is good - don't think I'll have any more admissions now, it seems to have been a blip, maybe the tree pollen? On the other hand am having cons issues again - won't hijack your thread/bore you with them but really, it's like a soap opera sometimes! Makes me really cross and messes with my head. Crossing fingers I can do a bit more with the next appt.

Good to hear :). I'm very blessed with a fantastic consultant/physio/dietician at Papworth - and likewise for my GP. Don't know where I would have ended up without them. It must feel so frustrating when you don't feel you're being heard.

I know nothing about that infusion but sounds nasty, hope not as bad as you expect.

Frankly I'm rather apprehensive. Side effects are horrid and I always have wacky responses to meds. Hopefully steroids will do their job and the infusion will tell my bones to get a grip! Thankfully I think it's only once a year :). I can't be ill, Ive got an essay to hand in at the end of the week which I haven't started!! I'm no better than I used to be lol - always work best under pressure

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That is good news Nursefurby, it must be a relief to you to know the out come isn't as bad as they thought it could be.

Good luck with your new career choice.

Have a lovely weekend.

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Lovely to hear your news nursefurby! I was also very pleased to hear you are training for a second career that meets your passions xx

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Great news NurseFurby, I bet it is such a relief to know for certain now, rather than the concern of not knowing, and even if it is inevitable, a least you have more time to get used to it and hopefully many of years before you need it.

Lovely to hear about your retraining too, good luck with it xxx

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So glad to hear that the test was negative, nursefurby - and good luck on your program.

How is the program structured? How do you manage it with fatigue?

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So glad to hear that the test was negative, nursefurby - and good luck on your program. How is the program structured? How do you manage it with fatigue?

Hi Beth, and thanks

I purposely picked a part time program as I knew that even that would be demanding. Last year was very difficult due to ill health and it was a real struggle to get both the academic work and practical sessions completed. I always arrange practical stuff for afternoons if I can as mornings are a real no no, I don't function very well AM. Many a time I was sitting on a ward begging to be let home to do my own IV's so I could attend Uni! I would take all my IV stuff to Uni with a stainless steel container which could be cleaned properly for my prep surface. They soon got used to me having to stop at 2pm to do them at the back of the classroom, though it was rather embarrassing initially. I still managed a distinction last year so I was proper chuffed

Things have been a bit less unstable since not eating (infection/admission wise) so I'm hoping that in two years I will be well enough to progress to a part time masters program. We shall see....