New and undiagnosed

Hi Yvonne, I'm going to ask a question here -
When you get the low O2 sat readings, is it while you are standing or sitting? How is your hand positioned?
The reason I ask is that home Pulse Oximeters are meant to be read while you are seated with your hand resting on the arm of a chair or a tabletop. They are not necessarily accurate on a hand that is not resting, because there may not be a good connection.
I get wildly different O2 readings depending on the finger I use, and it changes as I change position.
Sue

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Hi Sue.
Its after I've been active. (Active right now is slow walking and bathroom trips). I'll take my sats sitting quietly and get between 94 and 96. After I am active i sit again and do another reading. Its then i will see the sats go from 94 down to 90 then 91, 92 etc. Each time sitting up and sitting still.

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Well, that was a scary situation you went through. Like you, I would want to know more about what is going on, and why the crisis happened that landed you in the hospital.
I guess with no history of asthma or other problem, I would want to have the doctors search for a diagnosis - did he express any opinion of what might be going on? Those with a chronic lung disease (I have bronchiectasis & asthma) can get scary low readings whenever they have a virus or any kind of challenge. Then, as we get better the sats get better.

Would it be fair to say you are doing better than when you got home? Are you able to get up and move around, cooking or showering or other daily activities without being short of breath? Do you want to pursue an exact diagnosis, or just wait & see if your doc thinks it's OK (after he sees you?)

Sue

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Good point about home oximeters. I tried using it while walking, but erratic. Do you know of any good oximeters to use while outside walking?
Sitting at home my O2 is fine (95 and above). I had recent stent and did cardio rehab and they took oxygen readings at various levels of exertion on the treadmill. My O2 drops to 88/89 with mild to moderate exertion and my Pulmonolgist is fine with that. My O2 does drop lower with longer moderate exertion and in cardio rehab they had me do "intervals" or 4min lower exertion, 1 min greater exertion. My O2 did improve with exercise and both Pulmonologist and Cardiologist tell me to exercise! Of course, I have lung cancer and possible interstitial disease

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I'm posting this on behalf of my wife. She's diagnosed with RA, and Pulmonary Fibrosis , interstitial lung disease brought on by the RA.
Her Pulmonary condition is steadily worsening for the last several months. Severe fatigue, shortness of breath, lack of energy, prolonged, and chronic coughing. Basically, she has become increasingly inactivate. My primary area of concern is the lung issue, RA being secondary.
She does have a local rheumatologist, pulmonologist, whom she sees periodically. At this point in, time I don't feel she's having her needs met , with any therapies, other than some prescriptions.
Wishing for her to be seen, and evaluated, comprehensively, by a "new and fresh set of eyes, and minds".....I inquired, and requested an appointment, with the Mayo Clinic, Scottsdale, AZ pulmonary team.
Sadly, I was told that no appointments are available, at this time, and there is no waitlist. Only suggestion offered was to keep checking back periodically for appointment openings. I have also made an inquiry at City of Hope Medical Center in California, and waiting for response.
Can anyone offer any suggestions for lung specialists/medical centers/hospitals, (west coast) that offer a "team approach".....but not necessarily a requirement.....just looking for an excellent lung specialist.
We live in California.
Thank you for any impute.

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Hello, I personally have not tried a "wearable" pulse oximeter, but there have been a few small studies of specific devices. But in your circumstances, I would sure be interested in finding one, for my own peace of mind while exercising.

- Here is a highly technical one published recently about wearable finger & wrist pulse oximeters:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8889481/

The takeaway I got after reading it, because others have also asked, is that there are both finger worn and wrist worn devices. As long as you recognize that they have limitations, such as all being off by 1-3%, and potentially needing to go through a calibration for you, these should be helpful. As of 2020, a small study concluded that there was too much variability for smart watches to be considered accurate, but that's a long time in electronics so that may be different.

If I were on a quest for a wearable oximeter, I would ask at cardio rehab if they had a recommendation, or even one I could try. Can you contact them for help?
Sue

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I had some serious undiagnosed lung and breathing issues a couple years ago that (fortunately) turned out to be adult onset asthma (I am much better now). Bit when I was suffering I was about to contact National Jewish Health in Denver. I understand they are the best. Might be worth contacting.

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I'm posting this on behalf of my wife. She's diagnosed with RA, and Pulmonary Fibrosis , interstitial lung disease brought on by the RA.
Her Pulmonary condition is steadily worsening for the last several months. Severe fatigue, shortness of breath, lack of energy, prolonged, and chronic coughing. Basically, she has become increasingly inactivate. My primary area of concern is the lung issue, RA being secondary.
She does have a local rheumatologist, pulmonologist, whom she sees periodically. At this point in, time I don't feel she's having her needs met , with any therapies, other than some prescriptions.
Wishing for her to be seen, and evaluated, comprehensively, by a "new and fresh set of eyes, and minds".....I inquired, and requested an appointment, with the Mayo Clinic, Scottsdale, AZ pulmonary team.
Sadly, I was told that no appointments are available, at this time, and there is no waitlist. Only suggestion offered was to keep checking back periodically for appointment openings. I have also made an inquiry at City of Hope Medical Center in California, and waiting for response.
Can anyone offer any suggestions for lung specialists/medical centers/hospitals, (west coast) that offer a "team approach".....but not necessarily a requirement.....just looking for an excellent lung specialist.
We live in California.
Thank you for any impute.

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@rntichauer, might Mayo Clinic in Rochester, MN be an option for you and your wife?

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