Hospital appointment

[Grandmatojack]

Was at Wythenshawe hospital yesterday for my blood gasses to be checked. I retain carbon dioxide and use a NIV (bipap) machine. Feeling a bit down today as my carbon dioxide had gone up from 5 to 7 and oxygen levels had gone down. Now need to try and use the full face mask for more hours usually this is used for sleeping and nasal mask for the rest of the day. Quality of life over quantity of life is really hitting me now it’s nofunbeing tied to machines 24 hrs a day.

Sorry about the post just really trying to get my head round everything.

[Katinka46]

So sorry to hear your story. No wonder you are feeling down. I do hope you have support from your family and friends. And Jack must be large part of your life. Tell us more about him?

Hang in here, there are others who have similar tales to tell and will sympathise with your dilemma.

All the best

Kate xxx

[Grandmatojack in reply to Katinka46]

Thank you. Lots of support from my family and especially Jack he is only 4 and has only known me attached to machines and takes it all in his stride. Before he started school in December he used to come and see me every day and help his mum with little jobs round the house like dusting and putting the washing in. He’s going to be a big brother in April so looking forward to a new grandchild but on the downside Jack is being assessed for autism.

[Oshgosh]

Don’t be sorry about the post.thats thing about this forum.theres always someone hereto listen. I’m sorryyoure having a bad time perhaps using the mask more wil improve things for you.

Try to have a nice day today ,

[Grandmatojack in reply to Oshgosh]

Thank you.

[corriena]

Oh dear i know very little about NIV machines but i can understand how you could quickly become quite down about having to increase your time tethered to any machine. Maybe you could learn to meditate while using the niv. Relaxing and accepting your situation could help relieve stress and any anxiety and maybe readress the balance just a thought. Sending you a warm siber hugg to hopefully let you know we are hear and listening

[Grandmatojack in reply to corriena]

Thank you I think it’s just a bad day I’m having I usually come round to things in time but things just appear to have happened all at once this last few months.

[Spacecat1 in reply to Grandmatojack]

I wear the Niv mask at night problem I had was I dont go t bed til about 12.30/1.00am and up and about by 7.30am so not a lot of time on the niv machine I just felt my chest/breathing wasnt coping. After lunch hubby brings machine down for me and I put tv on and watch a bit of history etc. A couple of hours during the day does me the power of good. Hope you get on ok.

[Grandmatojack in reply to Spacecat1]

I’m using mine on average 20 hours a day I have 2 machines bone upstairs one downstairs and also a nippy for use if I go out in the wheelchair or hospital appointments, will fin it very difficult to increase the hours but will have to increase the time using the full mask in stead of the nasal mask.

[skischool]

I am sure that the very accomplished team at Wythenshawe will guide you as to the best use of these damned machines and accompanying cylinders and probably in doing so make your life far more comfortable and fulfilling and to a certain extent improve that sense of quality for the future.In the meantime make no apologies about your post as we are all here to support and encourage you in any way possible.

Best wishes Ski's and Scruff's x

[Grandmatojack in reply to skischool]

Thank you. I know how good they are my quality of life before this was a weekly visit to your favourite hospital Tameside to have the carbon dioxide blown off.

[skischool in reply to Grandmatojack]

Goodness me, a survivor of Tameside hospital,you must be one very brave or foolish lady? x

[peege]

I'm sorry too to read your story, it mutual be so very hard on a daily basis.

Excuse my ignorance but did they offer advice on any way of lowering your co2 & upping the o2?

Thinking of you x

[Grandmatojack]

Thanks for replying. Yes to use my full face mask for longer I normally use it for about 6 hours overnight and a nasal mask during the day so normally on average 20 hours a day on bipap and 24 hours on oxygen at 4 litres. I think if I get the carbon dioxide down the oxygen level will go up.

[Grandmatojack]

Lol. Been under Tameside hospital on and off for different things all my life and I’m 67 . I have always been treated with compassion and respect until the last 18 month. I feel now that through no fault of the nursing staff that things are in decline. Was in there in November for 3 weeks and basically they didn’t want to know even though I had pneumonia and had literally lost the use of my legs and couldn’t walk.