Wythenshaw appointment today

[Ellie]

The hospice nurse has advised 1 ml oramorph when I feel I need it, and I think I am pretty alert still.

You're absolutely right, 1ml of Oramorph isn't going to curb much, if any, of your alertness Heather - see how you get on with it tomorrow 🤞🤞😘

[Heather R]

Thanks too Matthew, Linda, Rosemary and Lynne xxx

[Rosemary6NT]

Heather R what a terrible dilemma, I hope you can find a way round it xx

[Heather R]

Ellie not the same hospital. I was presuming general anaesthetic would not be viable , especially in the future. I will ask about different masks thanks for suggestions. The hospice nurse has advised 1 ml oramorph when I feel I need it, and I think I am pretty alert still. Tomorrow I will test lying flat with oramorph xx

[Ellie]

Gosh Heather, that's an awful situation to be in.

I had thought I could just use my Bipap with undernose mask, but apparently this doesn't allow enough access round the eye.

Heather, do you think you could lower the straps from around your eye socket area and still use it effectively? Maybe try it at home during the day. Could you get a different mask type just for the op? It's only a tiny Oramorph dose you take, isn't it, was the dose mentioned before it was written off? There must be some way of using NIV during the procedure...

I need to say that you must be very careful about having a general anaesthetic with poor respiratory function - take advice from the Consultant Anaesthetist prior to putting yourself on the waiting list.

Is it the same hospital you attend for your MND Clinic appointments? xx

[LindaB]

Heather R that's tough...I guess it's the waiting list option🙏😘

[Lynne K]

Heather R good luck for a safe experience with your cataract op xx

[matthew55]

You really are going through the mill backwards. Big hug and loads of love. 🤗😊😘😍xx

[Heather R]

I was given a depressing probably impossible choice for a cataract operation, either one in 4-6 weeks if I can lie flat or nearly flat for 20 minutes, or get put on a long indeterminate waiting list for an op with general anaesthetic. I had thought I could just use my Bipap with undernose mask, but apparently this doesn't allow enough access round the eye. Tried lying flat for 20 minutes telling myself I could do it, and I was just imagining I was breathless, but needless to say I didn't get very far. I asked about if it was okay to take oramorph, but they weren't keen as they said I had to be alert and follow instructions. Can't bear the thought of losing sight on top of everything else! Warning to those developing cataracts, get them done sooner rather than later! xx

[Lynne K]

Lynne K I need to take a leaf out of your book and practice breath stacking more🙏😘

Good luck with breath stacking Linda xx

[LindaB]

Lynne K I need to take a leaf out of your book and practice breath stacking more🙏😘

[Lynne K]

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.

I’m glad that your BiPap works for you but sorry that your breathing has deteriorated so much. Love Lynne xx

[LindaB]

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

[Rosemary6NT]

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

[LindaB]

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

Rosemary6NT I feel the same about rapid deterioration with breathing xx