Really low blood oxygen.

[Inamoment]

I've got pah.

The other evening i went upstairs to bed and was somewhat out of breath as usual. For the first time after walking upstairs i used my oximeter. It was 49. Put my oxygen on and over a few minutes it was back at 90.

The next day i had a bath, not on oxygen and requiring some movement. I was slightly out of breath and my oxygen was 68.

These seem quite low values to me and there seems to be little connection between sob and oxygen level

[Katinka46]

SOB is not related to oxygen SATS. I am very SOB but my SATS are fine. And some patients are on oxygen but their breathlessness is minimal. Without oxygen your SATS are way too low. Do you need to sort this out with your consultant or nurse specialist? I assume you are a patient at one of the PVDUs and will have a phone number for the nurses there.

K

[Inamoment in reply to Katinka46]

I think i just need to be more aware of what is going on. I can't cook on oxygen, but i sit on a stool which helps and never cook anything that takes too long, risotto is about the longest. I really don't want to carry an oxygen bottle bottle or have pipes all over the place just to go upstairs.

Bending is the worst, i don't read the meters any more and the fridge is organised so i don't have to get anything from the back of a shelf. Other than that I'm plugged into oxygen the entire time

[Katinka46 in reply to Inamoment]

I think bending is pretty dire for anyone with PH. Not sure why? You seem to have got things well organised to cope with your problems. Well done.

[Joy123 in reply to Inamoment]

Hi, You can cook on oxygen if you're using electricity so why not change your hob? Also, you do get used to having tubes trailing behind you, I'm sure using oxygen would help you climb the stairs. Joy.

[Maureenpearl]

I have Pulmonary Fibrosis due to the damage caused by lupus. I use ambulatory oxygen and I have to use it for having a shower, bath, dressing and undressing and even to talk.

I live in a bungalow and I have liquid oxygen that I use indoors and I also have it at the side of the bed in a special flask. I have the cylinders that I use for going out and I have bought my own portable concentrator that I use when I go out of the country.

If my oxygen levels drop it makes my muscles burn with pain and I can’t even think straight.

You can damage your heart if your oxygen levels drops too much. Please seek help or just use the oxygen as needed. Get someone to carry a cylinder upstairs and leave it there for when it’s needed.

[Offcut]

I have IPAH and go to a specialist PH centre in my case Sheffield Hallamshire. I would say that stairs are my nemesis also with inclines and the cold just take my breath away. I have been looked after by Sheffield coming up to two years now and I have seen an improvement albeit it is small. I also cannot bend over without losing my breath and having to straighten up. I have been labeled "Complicated" Mainly because I have a lot of other things going on?

I would say that the drop to 49 is very low But from my own case if you recover quickly they do not worry so much about it. As for bath I have not had one for over 30+ years as it stiffens my joints. It has been suggested that the water pressure can make breathing poorer for those with lung/heart conditions. I have a right side paralysed Diaphragm and means I cannot swim due to lack of puff?

Be well

[Inamoment in reply to Offcut]

I did a pr course a year or so back, the bleep test got me down to 71 and i was on oxygen with the flow rate cranked up. The physios just asked me to stand there until it had recovered. The chief physio said if hers went down that much she'd be in a&e, but i seemed ok

[Offcut in reply to Inamoment]

It is my legs that pack up first on the Bleep test they just cramp up. I was told my body is redirecting O2 that's why? We all adapt to these things some days better than others. But I still get "You do not look ill?"

[Comino2]

Would having a stair lift help you get upstairs and let you save your precious puff for when you are up there.If cost would be a problem,depending on your circumstances social services can supply one.xx

[Inamoment in reply to Comino2]

It probably would but another 10m of tube for the downstairs concentrator would work. It would have to stay on all night but it's designed to do that

[Comino2]

Order up a nice long tube from your 02 supplier and give it a go, as you say the large concentrators will be fine left on.Dropping 02 levels are a bit of a mystery in the sense that same exertion on different days result in different levels.Always best to protect yourself with the oxygen xx

[Inamoment in reply to Comino2]

It is. When i had my original oxygen assessment the doctor who was walking with said said he'd never seen oxygen levels go off a cliff like that before. I must be special!