Wythenshaw appointment today

[Lynne K]

I had my appointment with a breathing specialist at Wythenshaw.

My blood gases were ok. Breath stacking must work.

I’ve been put on a list for a PEG but could take up to a few weeks.

He’s consulting colleagues about the suprapubic catheter as he too thought that it’s too risky. Lynne xx

[LindaB]

Good news about your breathing Lynne K ...hope everything else works out for you xx

[Lynne K]

LindaB thanks Linda x

[Ellie]

Any idea when you'll know about the suprapubic catheter Lynne?

Good to hear your respiratory muscles aren't badly affected. xx

[matthew55]

Keeping everything crossed including my catheter for you. 🤞😁😘😍xx

[Lynne K]

Any idea when you'll know about the suprapubic catheter Lynne?

Good to hear your respiratory muscles aren't badly affected. xx

No, he just said that he’d write to me after consulting his colleagues, and thanks xx

[shelly21]

Good appointment for you lynne. I've got my lung function test tomorrow. I hate it. X

[matthew55]

What's to hate when so many other wonderful things happen to us! 😉😁💐😘xx

[Ellie]

I've got my lung function test tomorrow. I hate it.

I know how you feel shelly21 I rejoiced when I was told that there is no point in me having any further pulmonary function tests as they couldn't get "meaning readings" from my huffs and puffs - it was soul destroying to see my full effort barely registering on their screens, hard for my husband to witness too. I didn't need the ignominy of tests to tell me my lung function was on the floor.

Now all I do is a SNIP test 👍👍

I hope your tests go as well as possible tomorrow. xx

[shelly21]

matthew55 breathing is my fear. I know niv is in my future because I do want to live a decent while yet.

my lip seal is weakening re bulbar muscles. Luckily my respiratory consultant explained that if lung tests become hard for me there are other tests.

[Mary C]

@ Shelley21…Breathing is a real worry for many of us.I tried the NIV and couldn’t gain anything from using it at night so after several attempts made the decision not to use a NIV.
Many people cope with the NIV and benefit from it but others decide against it.It’s a personal choice.

My palliative care nurse has been out to see me several times and explain what support I can expect to get via their team as a non NIV user .

All you can do is ask for information to make an informed and personal choice.I dislike the respiratory assessments too because I dread the results.

Hope all goes well for you tomorrow.
Mary x

LynneK ..glad your breathing assessment went well.Hope PEG gets sorted soon.
Mary x

[Rosemary6NT]

I’m lucky that I get on well with my NIV. I panic if I can’t breathe well. I use my BiPap during the day as well as at night. I’m shocked at how quickly my breathing has deteriorated.

[LindaB]

shelly21 good.luck for today's appointment - hope all goes well. xx

Rosemary6NT I feel the same about rapid deterioration with breathing xx

[Rosemary6NT]

LindaB very scary. I guess the breathing is make or break 😕

[LindaB]

Rosemary6NT I'm breathless even when walking (slowly)....maybe I need to practice breath stacking more😇😘