Bipap and oxygen

[siestasue]

I am looking for some emotional support from fellow sufferers to lift my mood. A year ago I was started on ambulatory oxygen, which was fine. I recently was discharged after a 6 week hospital stay. I am now on 24 oxygen plus Bipap at night. I am happy with the Bipap, it's just the whole situation. I realise I am still recovering but will I have any sort of life in the future. Will I now be housebound. I try to stay positive but can feel quite down at times and of course living on my own doesn't help. Please cheer me up!

[Katinka46]

Hmmm... The first thing that I thought was that you have posted here. That is a good sign. So thank you for that. Life is looking bleak. You must be exhausted after a long stay in hospital. So first give yourself time, lots of it. And be kind to yourself. What would you say to a dear friend who was going through what you are? Listen to those words and take them on board.

I cannot offer glib noises of cheer or suggest you think of those whose situation is worse than yours. Or counting blessings. But maybe a little very short gratitude list? Things that are particular to you and things that you value.

All the best

Kate x

[Dedalus]

No need at all for you to be housebound - if you haven't kept or already been given cylinders or a portable oxygen concentrator, ask about the different types available for your needs when you go out and about. I was feeling the same as you when I was recently started on LTOT - I'm still not thrilled about it, but am coming to terms with it (it does get better). All best wishes x

[Ian1967]

Hi siestasue, I was diagnosed with Type II Respiratory Failure in April 2017 and put on oxygen 24/7 1 litre at rest and 2 litres ambulatory, I couldn’t go above that, because I’m a CO2 retainer, whilst I was in hospital I was also using BiPAP and was told I would probably have to be on it for the rest of my life, but to get my own BiPAP set up for home, I would have to go into another hospital for a couple of days.

I was discharged from hospital a week later, but only given LTOT and ambulatory oxygen my specialist said were going to try on the oxygen only, but not going above the 2 litres ambulatory because of my CO2 retention, that sort of worked for a few months, but in the October I had a sleep study done at home and was told I needed BiPAP, which would be sorted by February 2018, but on New Year’s Day 2018, I became really ill again and was admitted to the hospital HDU and treated for pneumonia, they were going to discharge me after three days, but I said to them if they sent me home without my BiPAP being sorted, I would be back in within weeks, back to square one.

Eventually they transferred me to the Respiratory Unit, where I met my new respiratory specialist and he told me that I wouldn’t be going home without my own BiPAP sorted to go home with, a week later I was sent home with my own BiPAP.

When I was being discharged my respiratory specialist said I would continue on oxygen 24/7 and ambulatory oxygen for the time being, but the aim was to reduce my oxygen usage over time, three months later I was dropped down to oxygen 15 hours a day, including the 8 hours at bedtime and in February 2019 I was dropped down again to ambulatory oxygen between 2 and 5 litres for waking and exercise and oxygen and BiPAP at bedtime.

Since being on the BiPAP I have also been able to complete an eight week course of Pulmonary Rehabilitation, which I have carried on doing at home twice a week, I also go out for local walks two or three times a week and before the dreaded Covid-19 pandemic struck, I would regularly go shopping using public transport, but I won’t be doing that anytime soon, until a vaccine is available unfortunately.

Unless you have been told otherwise by your respiratory specialist that your oxygen regime won’t change, please stay hopeful, BiPAP has really improved my life and hopefully it will do the same for you and you won’t be housebound for too long.

I hope I have been some help.

Stay safe,

Ian.

[Spacecat1]

I have oxygen and Bipap I did fi d it hard to accept that I am on oxygen 24 hours and bipap all night pua couple of hours during the day. Going out with oxygen I fou d diffi ultima felt as though I was being started which didnt help my breathing or anxiety. But learned through deep breathing exercise helped me. And with wheelchair in few and my bottle on the back.

You do get used to things.

[Ergendl]

A chap used to go regularly to our local Breathe Easy group meetings and meals with two oxygen canisters in the basket of his electric mobility scooter to keep him going. So there are ways of having a life outside your own four walls.

Wishing you all the best as you recover from your hospital stay. Everything will feel exhausting and too much trouble at present. The last time I was home from a long hospital stay, it was enough for me to get washed and dressed and make myself cups of tea and live on microwave meals during the day at first. So be kind to yourself. And keep posting here. This great bunch of lungies will help you keep your spirits up.

[Alberta56]

welcome to the forum. i hope my fellow lungies have convinced you life's not all black.

[Grandmatojack]

I’m on 24 hour oxygen and only come off my bipap machine for meals and shower. I can’t get out on my own but someone taking me in the wheelchair is fine. I have a nippy which is a portable bipap machine for when I go out and portable oxygen tanks. I was getting out at least once a week until this virus arrived. Had a few weekends out lately but we are now in teir 3 so not going out at the moment. The nippy give me my life back as I was housebound until I got that.

[siestasue in reply to Grandmatojack]

Hi, sorry for delay in replying. Much as I like my bipap at night, I don't know if I could cope with it 24hrs. How did this come to be?

[Grandmatojack]

Hi, my CO2 levels were very high and whenever they took me of the bipap machine within a day or two they were sky high. So they originally put me on 18 hrs a day but over time this has creeped up to approx 20 hrs give or take. I now have a problem of my oxygen readings being high so they are now reducing my oxygen intake gone down from 4litres to 3.5 but will reduce again next time.

It’s been much better since I got the nippy as I can now go out in a wheelchair but have to take 2 oxygen cylinders and my nippy which my son has organised on my chair then he pushes lol. Good workout for him he says. Take care and keep safe .Pauline

[siestasue in reply to Grandmatojack]

Oh Pauline I thought I was quite an expert on my copd but I must admit I became very confused with your story. Was your high CO2 picked up with the blood gas test? Nobody has checked my level since starting Bipap, although I'm due my first appointment since starting next week. I have so many questions but don't know how to write them all down. If I'm not being a pain and you can be bothered what is the whole story? Don't worry if its too boring for you. It's just I've never heard a story like yours.

[Grandmatojack]

I was taken into hospital with an exacerbation of my COPD along with a few other things but the other main thing was I was very confused talking rubbish and just not being me. One of the doctors on A and E very luckily realised what was wrong and had my blood gasses checked and found them to be sky high. I spent 3 days on a completely full face mask which was horrendous and then another few days on mask during the night and nasal mask only during the day. This got my levels down so once stable i was sent home. Couple of week later I was back in not quite as bad as we had realised what was happening, well my son did, again the same thing blood gasses and high carbon di oxide levels on the mask again. Once stable sent home but within a matter of days I was back with the same thing. Asked if there was anyway that this could be sorted and told no just keep coming in and have the mask on. Luckily while I was in a girl came in with a portable bipap the nippy so my son and I quizzed her and she said that Wythenshawe hospital sorted her out with this. So I asked for a referral to Wythenshawe which the hospital actually laughed and said no just come here. Well I didn’t fancy every other week in there with a mask on so I got in touch with my respiratory nurse who came out to me and she referred me. Got my appointment for an assessment and they wouldn’t let me home as my levels were way over what they should have been. They had me for about a week with a bipap machine checking which mask were comfortable for me making sure I knew how to use my bipap machine and of course getting my levels down. Since then I have never been in hospital for high carbon dioxide levels. I was told to use it at least 18 hours a day. Before COVID I was seen by Wythenshawe who checked my blood gasses and I would see the consultant every 3 months. I am end stage COPD which really just means that until something new comes along there’s nothing else to give you. I got my nippy which opened up going out again as before I was housebound with being on oxygen and bipap but the nippy allows for oxygen to be run through it so I go in the wheelchair oxygens on handles nippy as well and son pushes lol. Just ask away if I haven’t covered anything I don’t mind at all.

[siestasue in reply to Grandmatojack]

Hi again Pauline, thanks for sharing your journey. Our stories run parallel to a certain point. I have had copd at least 10 years,and have been in hospital quite a few times. I was taken in whilst on holiday in Eastbourne a few years ago and put on a cpap for a few days, was in for 2 weeks and then sent home. In fact I have been in a lot of seaside hospitals, my sister says I'm a liability to go on holiday with!Then a year ago I was put on ambulatory oxygen which I coped well with. It all went wrong a couple of months ago, taken in and told I needed oxygen at rest as well. Sent home after 3 weeks but was back in 4 hours later. Really ill, I was hallucinating, I believed I'd been kidnapped. I wouldn't cooperate with any of the staff. It was so frightening. So I've ended up on oxygen during the day and a cpap at night. I had no help sorting out the best cpap, I just got sent home and left to sort myself out. Sorry I need to sign off for the minute a nurse has arrived. Will get back to you with my questions

Sue

[siestasue in reply to Grandmatojack]

Back again Pauline, sorry if I waffled on about myself. But I have already learnt a few things from you, the fact that the masks come in different sizes and and strength of oxygen can be adjusted. I shall be inquiring on Wednesday. Also I have to have my mouth open when the mask is on because its so strong it blows out of the side of the mask if I try to keep my mouth shut. Normally I sleep with a closed mouth. I'd also like to know why I would have an occasional headache but on the mask I feel every morning that I have a hangover. Does any of this affect you? Overall Pauline how are you coping? I never feel well and sometimes feel that I don't want to live like this. But that's just me feeling sorry for my self. How do you keep your spirits up?