Carbon dioxide

[TuchyBear3466]

My Lungs filling with Carbon dioxide, so when my Lungs are full. They think it's Oxygen but it's not, that's when my problems begin and I end up in Hospital. I don't know how much more I can take of this. I've been in Hospital 5 times since October 2018. Anyone know what I can do PLEASE LET ME KNOW.

[Stitcher48]

Touchy ear,love your tag,I had the same problem,I was on a constant 3 -4 litres of oxygen,and as my lungs have detiorated I can no longer be on this level so at rest I have to bring it down to 1.5 - 2 litres but 6 as soon as I move about as my spo2drops like a stone and I have to be on 2.5 on NIV during sleep it used to be 3 as I tend to be more at risk during vsleep but as the carbon dioxide levels were so high it had to be reduced. You don't say if you are using oxygen,but I know my NIV machine helps my lungs clear it out and I try to get as much sleep on it as possible,I wear a full face mask as the pressures are quite high and it's much more comfortable,it is wonderful and now my settings have been sorted it's a lot better it can take some people time to adjust to it but I must admit I loved it when I felt my lungs fill with air from the first breath,though there is are touch of the Hannibal Lecters about me when I'm wearing the mask,maybe you need to speak to to your doctor about it,but if you're on too much oxygen it can be worse than not having enough,I've been on it over ten years now and litres per minute are in constant flux as my lungs get worse but there's always help out there,sometimes you can feel like you're hitting your head against a brick wall,but mostly everyone is there to do their utmost for you,I'm surprised not given you advice with blood gases so poor,sometimes though you can fall through the cracks,the NHS is a huge machine,so let someone know how covered you are and that you need some help to know what to do for the best for yourself,all the best I hope you get it sorted as when my co2 levels were bad I thought I was going mad ,it's such a rotten feeling. Best thing is see your respiratory nurse,if you have a good one they knobs so much and most are good listeners and ask them for print outs or to write down what you need as when my carbon dioxide levels were bad it played havoc with my memory ,good luck,hugs and kisses a nd I hope not you get sorted out s on.

[Stitcher48 in reply to Stitcher48]

Tuchybear forgive my predicted txt and it's not even the phone this time,mostly me blind as a bat and it's trying to translate what I put in ,only for you to have to translate what it comes up with lol.🤓😬😀

[Stitcher48 in reply to Stitcher48]

Oh my dear lord,I HOPE YOU GET SORTED OUT SOON, ,and I need a trip to , Specsavers,just got new glasses too,🤓😬😘

[Queenbean in reply to Stitcher48]

Hi Stitcher, my mother also has been given an NIV machine but she just cant get use to it, interestingly and dangerously when we attach the oxygen to the bleed value with the NIV sats drop to 78-80 and we have to push the o2 up to about 3.5 ltrs to get it there, if she wears the nasal cannula on liters and puts the mask over her face her sats stay constant on 94ish however you can feel some leakage through the mask where the nasal cannula come to her ears... did you experience this at all? Any advice would be welcome?

[Stitcher48 in reply to Queenbean]

I'm so sorry your mum is having problems I just loved mine from the beginning,but you just have to be very relaxed when you have it on and "give in to it",I mean give in to the rhythm of it,and never wear any moisturiser on your face as it will affect the seal,wearing the nasal canulae isn't a good idea,I'd be asking for an overnight oximetry test so her respiratory team can see her sats are dropping but if the mask is leaking they will believe that to be the cause,I was hitting my head against a brick wall for 2 years with a very difficult nurse who had raised my IPAP pressure from 28 to 30 and reduced my oxygen levels too,and my sats were going down as far as 35,took a bad fall for it to be eventually sorted and I'm back to 28 again and 8 Epap and 2.5 litres of oxygen,at the beginning when I first started I would listen to relaxation cd to help and I can't stress enough how important it is to have your face completely clean of any oil,it sounds awful but I use detox wipes to clean the natural oils from my face and the silicone part of the mask that comes into contact with your face,get your mum to try wearing it during the day for 10 minutes now and then just to practice getting into the rhythm of the breathing on it but wearing nasal specs will cause leaks that will stop it from doing its job,before I had mine I had a heart attack in my sleep at the age of about 39,so I love it,but only an overnight oximetry test will give accurate info as to what is happening,it's just like a big wrist watch with a probe on your finger that you wear while you're asleep,

Has your mum got her oxygen going into the mask via the wee port that attaches to mask and tubing and is there a switch to change direction of oxygen from nasal to mask.

And after ten years experience with NIV I can't express how important a good seal is.

There are lots of different masks I prefer the performax full face mask as it can take my high pressures though I have to change the straps every few weeks as they wear out so quickly and I must admit the first time I saw it I was frightened thinking I'd feel so claustrophobic in it ,but not at all ,it was a revelation.so to summarise(sounding a bit professional lol)

Make sure face and mask scrupulously clean,no moisturisers at night,A Good Seal Is All Important!!

Oxygen is actually going into mask.

Overnight oximetry test,to see if settings need changed but don't be putting oxygen up as it can be as bad having too much as too little

Try different masks out that your mum has one she feels comfortable in

(Forgot to say if the seal is good then I it won't be really noisy,the noise of escaping air can be really awful)

Relax,relax ,relax,I now wear it at night and can watch a good film through the mask before I fall asleep. But try some relaxationtapes or favourite music,relaxing of course!!

And it can all be very frightening to start off with,all the information you need to take on board it can be a bit scary,and I have noticed in hospital people afraid not to always have their nasal specs on,build your mums confidence that it'll be ok,but if the mask is leaking then so is the oxygen so I always say the seal is the most important thing of all,and just to let go and enjoy the fact that it's going to keep you breathing,I love my NIV it's a part of me now,a friend that looks out for me at night and keeps me ticking,but to begin with it can take a bit of time to get used to,and the fear when you first are told you'll have to use it,can take a little time to to come to terms with.

But I'll sign off now with ,the seal,the seal is the thing(a nod to Mr Shakespeare lol,xxx

[Stitcher48 in reply to Stitcher48]

Dettol wipes,awful but the only thing I could find that didn't have added moisturisers😬😀

[Roessner541]

When I breathe I try to exhale twice as much as I inhaler that seems to help me. I also take NAC and I was taking Daliresp for about a year as I was constantly going to the hospital I have only been once in three years and haven't been admitted.

[stamford1234 in reply to Roessner541]

It's a good habit to get into. It helps me, I just have to remember!

[Whitechinchilla in reply to Roessner541]

Hi Roessner541.

Your post has caught my attention as once again within a few days the supplement NAC is mentioned. I find it amazing the difference it has made to your health. Thanks for sharing that.

[Hidden in reply to Roessner541]

What is nac?

[Stitcher48 in reply to Roessner541]

Can you tell me what NAC is please,😀

[Roessner541 in reply to Stitcher48]

It is an over the counter supplement that helps with inflammation of lungs you can Google it my lung doctor suggested I start taking it to help my lungs

[stamford1234]

You sound really low, so sorry to hear that. All I can suggest is deep breathing exercises but I am sure you will get plenty of tips from others. I hope you start to feel a bit better soon

[annienell]

Hello TuchyBear, I'm sorry to hear you've been having so many hospital stays recently. I suggest you call the BLF Helpline (03000 030 555 office hours) and discuss your problems with them. They are very experienced and I'm sure will have some good advice for you.

Let us know how you get on. Best wishes.

[Whitechinchilla]

So sorry to hear you are having such a difficult time.

Do take Annienell’s adice and contact the BLF.

I hope you find a solution very soon.

Good wishes,

[Roessner541]

It is an over the counter supplement NAC N-Aceryl L-Cysteine 600 mg I get mine on Amazon it helps with the inflammation of the lungs I take at least two tablets sometimes three. Not sure what all it does, just seems to help me. I also took Daliresp because u was going to the hospital to much and those were making me like to much weight. I just quit taking those hoping I wouldn't start going back to hospital and i haven't

[Spacecat1]

Have they not tried you with a niv mask which you mainly wear at night. It helps to get rid if the carbon dioxide. Have a word at the hospital

[Stitcher48]

Tuchybear definitely you need to be referred for Niv,non invasive ventilation,it helps to clear the carbon dioxide from your lungs and is fantastic,I had a few issues with mine recently but it was down to nurse incompetence and absolute refusal to listen to me but I'm hoping it's all been sorted out now but before she changed my settings it was doing a great job of keeping my carbon dioxide levels down,as a type 2 respiratory failure I have to be very careful. Has no one even suggested it for you,it amazes me the different levels of care and knowledge across the UK, it's upsetting really to think of.

Good luck hope you geto help soon as I know that having high Co2 made me feel like I was going out of my mind at times and the exhaustion was unbearable,sending you a hug hope it's something,I know when Caspiana sent one to me it helped make me feel not so alone.😊🌻🌻🌻