help with finding an oximeter

[field]

hi everyone,

I need some help.

I suffer with breathlessness with lupus and would really appreciate some help.

I am trying to find an oximeter without a pulse rate sound indication that I can use during the day and at night during sleep, to measure my oxygen saturation level. does anyone know where I can get one without the annoying audible pulse tone sound?

[Fennella02]

Hi. I researched this one a couple of years ago as I was/am suffering from Central Sleep Apnoea. I also have Small Airways Disease and Diaphragmatci/resp muscle weakness which makes lying flat very hard at times. In short, the type that you or I would need are very expensive and hard to use properly. There are companies that hire the equipment for a few days/a week or so and then interpret the data so that you can present it to your Doctor but you're looking at a couple of hundred pounds just for this. My advice would be to try to access a sleep study via a Respiratory dept in a hospital - are you in the UK because the NHS certainly can offer this and has offered to me. Hope this helps. Clare x

[field in reply to Fennella02]

thanks for your reply.

like you I cannot sleep lying flat I have to sleep with 5-6 pillows at night. I was hoping to get a device I could use at my leisure to do regular monitoring at home.

[Fennella02 in reply to field]

Yes, that's what I hoped for too. Can I suggest that you post this same question on the British Lung Foundation site on HU - someone there is sure to have a better answer for you. I shall watch the replies with interest! X

[field]

Thanks for taking time to reply, i will try that.

[Fennella02 in reply to field]

I've just been reading one of your earlier posts and we are very similar. The difference is that mine is my right lung that is hyper-sensitive & chronically painful. It is the one that gets hit every time by flares and infections even though the pleuritic episodes could be either side. I have had some problems with aspiration when both asleep and awake - I wonder if you have had an endoscopy to check on any silent reflux? Reflux is implicated in many many people's respiratory problems. It does feel really rubbish when your lungs won't do what you need them to. My resp strength is so poor that my peak flow ranges from just 100 - 250 at best. I have both restrictive and obstructive (caused by the inflammatory small airways stuff). Perhaps some more full lung function tests are indicated with regular follow-up? My Consultant can't help me enormously apart from an inhaler but has advised that I must hike up my pred during flares that attack my chest and keep antibiotics at home for rapid resolution of infections. I have been offered a nebuliser but I don't feel ready to sit hooked up to one 4 times each day. I'm sure I'll know when that time comes. Have you tried Omeprazole or similar and noticed any improvement?

[field]

thanks for that.

I do have chronic pain, discomfort and a feeling of restriction around my left lung. I usually get breathless on exertion and cannot walk at normal pace without becoming breathlessness. I have to walk at a slower pace when I am out and cannot walk distances. things have got worse in past few weeks because I have been trying to get over an infection.

My rheumy says its lupus inflammation and damage, but it is constant and nothing takes it away not even when I am on steroids. I have tried Inhalers but they do not help, not only that I cannot tolerate the inhalers anyway they make me ill. I am concerned that the damage is getting worse so I will see my gp this week.

can I ask how long have you had this problem and how long did it take to get a diagnosis?

thanks for your help

[Fennella02 in reply to field]

I would say since 2012. Before that, my lungs were problem free. I've always pushed myself harder than is sensible but I was as fit as a fiddle. First was not being able to breath when flat accompanied by sporadic appear which fixed my rheumy. I had a farcical private first apot with my resp consultant who made sweeping judgements on my 'poor diet' (veggie), low bodyweight (poor appetite) and 'deconditioning', pardon?. It has taken until this year for these statements to disappear from my letters & they have influenced everyone I see. Diagnosis was fairly quick and has continued to evolve. My pfts reveal weakness, small airways stuff, air trapping but reasonable spirometry and 2 ct scans revealed supporting shadows on both lungs. My rheumy defers to my resp doc whilst resp doc wants lupus under better control as the only effective management! He also reminds me that he has many patients in much worse shape than me . . I'm very blase about my health but I know that it's my lungs that are going to be my biggest problem over time.

I am pretty assertive now with my doctor and go to lengths to show him how much I struggle but whilst my O2 sats & spirometry remain ok, I don't think he's going to worry too much.

For info - small airways inflammation has to be pretty advanced before pfts can detect it but functionally it affects us hugely. You are right to persist - make lots of fuss lots of times. It's the only way x

[field in reply to Fennella02]

Thank you soooo much I really appreciate all your advise.

[Maureenpearl in reply to field]

I was diagnosed in 2007 with Pulmonary Fibrosis (damaged lungs). I was always breathless and had to give up work (ill health pension).

I actually asked in 2013 if I could be given oxygen. I was sent to see a Pulmonary consultation who then arranged for me to be tested for ambulatory oxygen. My oxygen level would drop if I lift my arms up or even bend down.

After the six minutes walking test without oxygen and six minutes with oxygen I was told I need to use oxygen at 4litres per minutes. After getting the oxygen delivered I went walking but discovered I was still getting breathless and if I talk too much, laugh or move too quickly so I was tested again and found I needed 6 litres per minutes.

I haven't let this stop me from being social and I go on cruises from Southampton.

Hope you will get an answer soon and remember you are in control not lupus.

God bless 🙏💐

[field in reply to Maureenpearl]

I am the same i get breathless when i walk i have to stop frequently to catch my breath on some days it takes a while for my breathing to settle after just walking a few yards. I cannot hurry, carry anything other than a light handbag. When i talk it feels like my lung is running out of oxygen and often have to stop talking because lung is tied.

I am going to ask for some tests.

Thanks very much for your reply.

[BlueHorizonMedicals]

Hi field

My wife has various respiratory issues, and we use a battery operated pulse oximeter we found on Amazon. Cost about £20.

Mind you, we use this whilst waiting for ambulances, and not for overnight monitoring so I don't know how effective a solution this would be for you.

Good luck in your search!

Paul. ☺

[field]

thank you for your reply.

I am looking for either a finger or wrist one without the audible pulse tone sound. Does your one have the pulse tone sound?

[baba in reply to field]

You can turn off sound on most oximeters I think

[field in reply to baba]

I have looked at the manual of the one i have and there is no indication that the sound can be turned off.

thanks for your help.

[PMRpro in reply to field]

Try contacting the manufacturers - manuals are known for their being incomplete. And they may also be able to point you in the direction of one that can be used without sound...

[field in reply to PMRpro]

Ok thanks i will try that.