Type2 respiratory failure : Hi all, I... - Lung Conditions C...

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Type2 respiratory failure

Darreni profile image
24 Replies

Hi all, I have been recommended to this community for help and advice, and perhaps an ear to bend.

I was hospitalised 24/03 and was told I had type 2 respiratory failure. I was diagnosed asthma when I was 4 and COPD about 10-15 years ago. I’m now 50. My Co2 levels were very high and after a trip to wythenshawe I am now back home on a NIV machine.

I still find it hard to move around without getting absolutely shattered and out of breath. My o2 sats are between 88-92 and even when they are higher, just walking upstairs I feel the need to sit and control my breathing again. I’m dreading going back to work as I feel I am not going to be able to cope. Any advice would be welcome. P.s go easy on me, I’m new to all of this.

Regards Darren

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Darreni profile image
Darreni
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24 Replies
HungryHufflepuff profile image
HungryHufflepuff

Hi i don’t really have any advice to give but just wanted to say hello and welcome.

JANET127 profile image
JANET127

Do you have Heart failure too? So do I. One thing I have learned to do on here, is to sign up for Pulmonary rehab! They give you so much knowledge and you learn different ways to help your breathing. Like going up the stairs is hard for me too. Now I put one foot on a step,while breathing in thru my nose...letting it out thru pursed lips. If you let the air out by just hanging your mouth open, you can close part of your breathing tube. Next step..take air in thru your nose, let it out thru pursed lips. It helps me to get up the stairs ! Also, I work too..so I understand your fear. Just read everything you can from this website and know there are people here to support you! Janet127

Damon1864 profile image
Damon1864Volunteer

Hi Darren and welcome to the site, I'm sure if you go to your what information leaflets the BLF have I am sure there is one one on respritory failure. I suffer with this but not bad, but have a look for those leaflets. I hope this has helped, please keep posting so we know how you are, take care of yourself 😊 Bernadette xx

sassy59 profile image
sassy59

Welcome to you Darren, hope things improve for you. Stay in touch. Xxxxx

Izb1 profile image
Izb1

Hi Darren and welcome to the site, there are alot of people on this site with the same conditions that will come along shortly to advise you x

Darreni profile image
Darreni

Thank you all for your warm welcome and replies.

I don’t know if this is part and parcel of what I have, or wether it is the NIV machine that I’m using, but when I wake in the morning after being on the NIV I feel a pain in my right back when I breathe in ?? I also suffer from really bad itching all over my body which subsides as the day progresses until I start back on the NIV. Has anyone come across this ? I will call wythenshawe and see if I can get answers from them. Will keep you posted and thanks again.

Regards Darren x

Spacecat1 profile image
Spacecat1 in reply to Darreni

I use a NIV mask but never been itchy my problem is a very dry mouth. I do occasionally wake up with pain in middle of shoulders I do have a habit of lying on my side and occasionally rolling over and back again I did speak to the doctor and he had me checked out so for me back to the lovely NIV mask. Go and have a word with your consultant its always best to.

SquirrelsHolt profile image
SquirrelsHolt

Just a very quick "hello and welcome" to you @ Darreni. So glad that you've found this forum. Sorry to read about your health problems but keep in touch won't you?

Dedalus profile image
Dedalus

Hello and welcome Darreni

Offcut profile image
Offcut

Hi and welcome.

Pulmonary rehab is a great step in helping you understand and get some sort of control back into your life!

I worked for a further 4 years after a major lung failure. I am a great believer in a PMA and mindfulness/Distraction Techniques.

BE Well

Oshgosh profile image
Oshgosh

Don’t know anything about respiratory failure,but there will be people on here who know about it.

You couask your GP

OR ring the consultants secretary and ask for advice.

I don’t know if there’s a respiratory team in your area,

When I was discharged from hospital,the respiratory nurse visited me at home.

She taught me loads checked my inhaler and nebuliser techniques..also did all my obs.she discharged me from her care in February,I changed ring for help if I need it.

She recommended me for pulmonary rehab,which I was dubious about,but it was brilliant exercise and education.

They then referred me to the gym - 12 weeks,then reduced membership.

I was sceptical at first,but it’s working! Helps your aerobic strength and build muscle..

You haven’t been out of hospital very long, these things take time to settle down.

You need to be very kind to yourself,eat well.

You need to be ringing around for help and advice. Try googling respiratory team in your area. Look after yourself

Darreni profile image
Darreni

Thanks folks, just a little update. I called wythenshawe ventilation unit this morning and told them of my concerns, someone was supposed to call me back this afternoon but as yet haven’t.

I will try them again tomorrow and until then more antihistamines.

Oshgosh profile image
Oshgosh in reply to Darreni

Am pleased that you have managed to speak to someone. Hopefully they will be able to help you.

Oshgosh profile image
Oshgosh in reply to Darreni

Hope you get some help/ info today

PollyP profile image
PollyP

Hi Darreni,

Oh it’s a pain isn’t it ?

I have Type 1 Resp Failure!!

I would echo a referral PR if you haven’t already had a one. It is a real help !

Breathlessness is often an associated issue and is not linked with oxygen therapy.

Being fitter is a good way to manage breathlessness as pursed lip breathing.

Have a scout round on YouTube and see if there is anything on there which suits you from breathing exercises to chair yoga to Pulmonary exercise.

Yes keep your sats at 88-92.

Good wishes.

Darreni profile image
Darreni

Another update, still waiting for someone to get back to me from wythenshawe. Everyone in a meeting, been told they will call back today. In the meantime, currently using a chopstick to reach itchy points on back lol !!

I was trolling the internet yesterday and found that someone had the same issue that I had and it was related to fostair ! Now that has only recently been added to the many tablets and inhalers that I take and I wonder if that could be causing my issue. Hey ho let’s see what the boffins say when and if they call back.

Keep smiling gang, the suns out and summer on its way ! X

HungryHufflepuff profile image
HungryHufflepuff in reply to Darreni

Which issue do you think is related to the Fostair? The itching? I had Fostair for a few months last year and I had the most unbearable itching like being eaten alive by insects. At the time I didn’t imagine it was caused by a medication and I thought my cats must have fleas (even though there was no sign of fleas) I must have had the most de-flea’d and de-wormed cats in the land! Anyway of all the bad side effects I had from Fostair I think the itching must have been the worst. Good luck with your appointment tomorrow. I hope you get some answers 🤞

Darreni profile image
Darreni in reply to HungryHufflepuff

I can relate to what you say by being eaten by insects. It’s weird, it’s like my skin is crawling but no specific point. If I itch at my stomach it seems to move around. Very strange. The boffins day they have not come across any side affects related to fostair, but it clearly states itching as a side affect on leaflet ?

Also someone had also posted up on this site that he/she was also relating itching to fostair. I should have screen shot it and saved it for the boffins. Ah well as long as everything I’m doing, is keeping the Co2 down I suppose it’s a small price to pay, and at least I have the antihistamine to help.

Stay in touch, regards Darren x

Hacienda profile image
Hacienda in reply to Darreni

Hi Hun, I too have this itching, especially on my Back, The thing is I have taken all my same Meds & Inhalers for Years, so I can't claim any of them have given me this Itching, I use a Long extendable metal Fork, reaching difficult places bought from the £ shop, it does the trick. I only have the "Itch" when I am relaxed in Bed, it is like all the nerve ends are fighting. Oh Well, One day might find out Why? Have a Good day Hun. xxxx

Darreni profile image
Darreni in reply to Hacienda

Are you also on the Fostair ??

Try a chopstick. They’re brilliant, nice long and sharp.

Stay in touch, take care Darren xx

Hacienda profile image
Hacienda in reply to Darreni

No Hun, Im on different inhalers. Xx

Darreni profile image
Darreni

Back to wythenshawe tomorrow to check obs and NIV settings. Will post after my appointment at 2.00

Take care all x

Darreni profile image
Darreni

Ok, back from the boffins at wythenshawe.

After walking down the wrong corridor (decided lunch at subway first) I assumed that all corridors were linked but appears not, I arrived at the outpatients entrance 2 gasping for breath !

After a ten minute wait, which I needed, I was assessed and sats checked. Also had arterial gases checked and both came back within limits ! Yippee !!

The pain in my back they seem to think it is my lung expanding more than it’s ever done in the past. They said it should settle down. As regards to the itching they don’t know ? And told me to speak to my own GP ? Which I thought was a bit odd as the itching only appeared after changing to fostair. They said that too may settle down, so I think it’s a case of carry on with the antihistamines and chop stick for reaching parts of my back.

So far so good and sort of happy with the outcome today. Let’s see what I’m like when I return to work next Tuesday. Baby steps !

Have fun gang and keep smiling ! Xx

HungryHufflepuff profile image
HungryHufflepuff in reply to Darreni

I stopped taking Fostair after a few months because it didn't work for me at all and in fact made things worse, and I had a whole lot of side effects. The worst was the itching though. It was horrendous. I mentioned it a few times to the nurse and the doctor but they didn't make any comment or even seem to acknowledge me saying it. I'd just be interested to know what caused it and what it meant. Anyway I'm glad your appointment went ok apart from you getting lost. Sometimes it feels like the most stressful part of an appointment is finding your way round the hospital!

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