How bad does it have to be before...

[Timberman]

Oxygen. Thing is I have severe COPD (emphysema and bronchiectasis) at stage four. Last FEV1 32%. I am 78.

Now I have also had arrhythmia and some oedema so I was diagnosed with congestive heart failure as well. But two echo- cardiograms showed a healthy heart, two E CGs have showed the rhythm is now good. And the oedema is reduced. So I saw the heart specialist for the first time last week and he said there was nothing he could do to help, keep taking the tablets and its not your heart you need to worry about. Signed me off. GP will get letter this week.

But my breathing is dreadful. I am down to four or five paces, showering is a nightmare. I do have an oxygen concentrator which helps but of course it not the full solution. And as yet my team will NOT put me on oxygen. Another review due.

Now I figure it this way - each breath we take is 21% oxygen ( assuming no useless O3) but I can only use 32% of it which means I get only 7%.... now to function we need nearly 10% minimum so not only do I not get enough but I never have any reserve for instant effort.

I can read off my oximeter sats as low as 70odd% although they recover well enough.

But if the paramedic saw that I would be blued and twoed to A&E immediately - and put on full-face pure oxygen from the moment they laid me on the gurney! Anything under 90% gives them the colly wobbles.

So would it not be cheaper to put me on oxygen now surely?

Any thoughts out there good people?

[skischool]

If your sats drop as low as that on exertion ,even if they do rebound quickly it would appear to me that you are definitely in need of a proper assessment for supplementary oxygen.You need assistance to maintain your sats between 88-92% to protect your other organs from damage and you need it sooner rather than later.

My sats do fall into the 70,s with the mildest exertion but thankfully my supplementary O2 lifts them up to a safe level,though sadly with an FEV1 now less than 20% and very bad gas transfer values my O2 is on constantly 24/7 to just help me do everyday things like washing and housework. these days and going out has become a rare event.

Go bend their ears again and get the help you need now!

🙃

[Cloudancer in reply to skischool]

Bless you ski school.Totally agree with your advice to Timbermann to raise the issue with his medics.

Have found recently that unless you are firm (not rude) you can be overlooked.Am still waiting to be told spirometry results from last May.Am grateful to have been able to have them done but the results would be appreciated!

[CDPO16]

I agree with skischool Timberman, push for a review of your oxygen needs. You really shouldn't have to be struggling with such low sats.

[HollyBoyd]

Yes, I agree with skischool , you should keep your sats between 88 and 92, so sounds as though you are very much in need of oxygen, especially when ambulant,. Hopefully you can get an assessment soon. good luck. 😊

[hypercat54]

As I understand it not everyone is suitable for oxygen eg if you retain carbon dioxide then oxygen can make it worse. I also know that oxygen isn't given to help you breathe, though this can be a side effect, but to protect your other organs.

How long do your sats stay under 90? And how often does it happen?

[skischool in reply to hypercat54]

Oxygen is Ok for retainers Bev,i am a retainer,it just needs to be established at what level you start to retain which can easlily be determined by a skilled respiratory nurse samplimg bloods whilst your correct level is determined.That is why people in hospital with respiratory conditions which are not well documented and adjusted are carefully kept at the 88-92 % so as retention is not a problem but your vital organs are protected.

🙃

[hypercat54 in reply to skischool]

I bow to your greater knowledge my friend skis. Love to you and scruffycat. 😘💖💖 xx

[skischool in reply to hypercat54]

Unfortunately it is not greater Bev,i am as thick as two short planks,it is just first hand cos i need the bloody stuff to stay alive.😂XX

[Gladwyn in reply to skischool]

😃 bless your cotton socks Skis as you always make me laugh even when the subject matter really isn’t a laughing matter! xx

[Tykelady in reply to skischool]

Is the test where they mutilate my earlobe the one for CO2 retention? I think I take it all in when they explain things but by the time I'm home I've forgotten. My stats drop and recover quickly and I understand that my oxygen is as much to protect my heart as to help my breathing.

[Patk1]

02 concentrator usually used when you require more 02 and avoids need to keep changing tanks.it should be at the same 02 concentration u had prescribed from a tanking u r struggling,do contact yr specialist/prescriber

[Caspiana]

Hello Timberman,

What a difficult situation for you to be in. Did the hospital say why they are reluctant to put you on oxygen? I have a friend who is VERY end stage emphysema. They will not put him on oxygen as they think it will do more harm than good at this stage. I am a retainer, but I was put on oxygen but only a low LPM of 2. I think it depends on the individual.

[Hidden]

I have COPD. I cannot believe they are NOT telling you to use oxygen if your sats go below 90% regularly? Here in the US they want me to use oxygen if it goes below the 90% on a regular basis because they said my organs will suffer and begin to go bad if I don't.

What about night time when you are sleeping? If it is going below 90% during the day, surely it is doing it at dangerous levels while you sleep?

I had to do an overnight test with a device that tells when and if and how many times my oxygen drops below 90% while I sleep. So I use oxygen at night because it goes down to 82% and 85% a few times while I sleep.

Right now, since September I have been having troubles breathing and getting breathless, even though my oxygen is above 90%. And the doctors are not worried much because the sats are good. I have been having tests over and over and they cannot tell me what is wrong?

I thought maybe it was my thyroid swelling up and pressing on my windpipe. It is looking like that may not be the problem.....I am scared because things such as cancer, can cause breathlessness with good sats. Its called dyspnea, and I don't know how the sats could be good, yet I have so much trouble breathing.

I went into the grocery store to gather a few odds and ends for Thanksgiving and the cashier was yelling over the heads of those in front of me asking if I was okay. Which would have been fine, but then she bent over to whisper to the customer in front of her something about Covid and a nurse telling her something and how she just wanted to warn him.........I was so embarrassed, I left the store without even getting my son's soda pop. People think because I have troubles breathing, I naturally have Covid. .....I pulled over on the road to call and tell the store manager how embarrassed I was by the cashier's actions and words and told her i have been breathless since September and how ignorant the cashier was as there are other things that can make a person breathless like a swollen thyroid or cancer..........

[Timberman]

Many thanks to all for helpful replies. I ended up being taken in to A&E and got excellent treatment. Of course I went straight onto oxygen in the ambulance! And from then on. Things have changed and now I am advised to use the concentrator as I need it but for short periods only. Of course there are risks regarding oxygen - I know that. CO2 build up can be hazardous and excessive reliance is a risk. It seems my problems are complex but resolve to excess fluid generation in the thorax and around the heart, so diuretic etc and review in a week or so. Feeling much better.