July 5, 2018 at 7:25 pm #13318Pulmonary Fibrosis News ModeratorParticipant
The Pulmonary Fibrosis Foundation (PFF) has launched its Oxygen Information Line to provide information and resources to patients and caregivers using supplemental oxygen.
The Oxygen Information Line, (844) -825-5733, is available Monday-Friday, 9 a.m.-5 p.m. CST and provides reliable advice about which oxygen delivery system to use, how to manage flow settings, and how to ensure safety.
Click here to learn more about this helpful new resource: Pulmonary Fibrosis Foundation Launches Help Line for Oxygen Equipment
Is this a service you think you will use? What other resources do you think should be made availablet to people with IPF and their caregivers?
August 27, 2018 at 10:10 am #14129AnonymousInactive
We are brand new to the use of supplemental oxygen and find the small finger oximeter is not that reliable of a read and varies 5 points from hand to hand — we are wondering if that is normal?
So we just ordered the Masimo Mighty Sat oximeter for $300— can you provide me with guidance on which readings with what numbers on the oximeter should generate use of supplemental oxygen, and send me any other tips about using oxygen for exercise
thank you so very much
August 27, 2018 at 2:01 pm #14138Charlene MarshallKeymaster
Thanks so much for getting in touch with us, and welcome to the PF forums.
I am always cautious to provide support on supplemental oxygen as I am not a nurse, doctor , specialist etc. at all when it comes to oxygen use and can only share information based on my personal experience. I am also on oxygen, not 24/7 yet but am using it a lot especially in these past few humid months.
My first question is where you obtained the oximeter you’re unhappy with? Sometimes store bought ones are not the best, I agree, and there shouldn’t be a variation of -/+ 5 points within a few seconds of each reading, as far as I understand. It should be pretty consistent, especially if you aren’t letting much time lapse between each reading, even if it is a different finger. Some oxygen providers will give this to patients, and I find them much more reliable, and likely the one you ordered online will be as well. In order to really see oxygen trends, I’d keep a small notebook with you and track the readings each time you check. This will allow you to notice times of the day / activities that might really cause a fluctuation in your oxygen levels.
Your oxygen provider would be the best person to outline what your oxygen needs should be based on the numbers on the oximeter reading, because they will have the script from your pulmonologist which outlines your unique oxygen needs. Have you met with the oxygen provider yet? Generally speaking, your oxygen saturations shouldn’t fall under 89 based on what I understand, because that compromises oxygen to your other organs, putting them at risk. However, I know some people have been told differently. In terms of oxygen use and exercise, this really needs to be directed from your doctor as it is very unsafe to exercise without proper oxygen levels…it can put too much stress on your heart. Is there an opportunity to call your oxygen provider with these questions, just to be completely sure?
I’m happy to help as much as I can, however, I only have my personal experience to go on which will differ in terms of my oxygen needs from yours. I look forward to chatting more via the forums 🙂
August 27, 2018 at 11:27 pm #14145AnonymousInactive
Thanks Charlene — you are amazing and so incredibly supportive to everyone ….
I am looking to hire a respiratory therapist privately, for 1 or 2 sessions just to answer all our question as my husband would like to exercise, but will need monitoring to make sure he stays in the correct levels for oxygen and perfusion. You are correct re 89 being the magic number. In altitude and in a plane he dips to 79 — but in his case, he does not become short of breathe, so that’s why a dependable Oximeter is so important to us. ….however he does get a terrible persistent dry cough and definitely heat and humidity intolerant.
Our oxygen provider, Apria, was not very helpful at all — they are very busy, seem very stressed, but you have given me the encouragement to return to them and seek more info as we start to exercise
Its a rigorous time in our life as my husband and I both still work full time, and also help caregive for our granddaughters, ages 9 and 3……but they are such a blessing, and we need to constantly make our gratitude list and enjoy the present best to our ability. My father was an amazing role model, and I always remember him saying – with a twinkle in his eye — DO YOU KNOW WHY THEY SAY LIVE IN THE PRESENT???? BECAUSE THE PRESENT IS OUR DAILY GIFT.
Thank you again Charlene……also on what topic would I ask if anyone else is in the Kaiser system so I can compare information with them re getting on transplant list, and cost of anti-fibrosis meds — such as Esbriet
August 28, 2018 at 6:35 pm #14160Charlene MarshallKeymaster
Thanks so much for your kind words, I’m so grateful for them and happy you’ve joined our PF forums!
I think hiring an RT privately, even for an initial assessment is an excellent idea. Its always best to get an assessment done to establish a baseline and then work on a safe exercise regimen to build strength and stamina from there. Great idea! I thought I’d heard that 89 was the magic number, not only is it dangerous for your lungs but your other organs suffer as well from being under-oxygenated with sats lower than than. Where do you think you might start the search for a private RT? Could this be something your pulmonology team helps you with?
I’m so glad he doesn’t typically experience shortness of breath following a dip in oxygen. I hope he doesn’t get any of the other unpleasant side effects either, like headache, light-headedness or dizziness. If you’ve been on a plane recently, I’m so glad to hear he is still able to travel as well!
Do let me know how your oxygen provider responds to your inquiries. It is very important that they are attentive, our oxygen level is critical to our bodies needs.
You both are so wonderful to help care for your granddaughters and I am sure it means a lot to them to have such a special relationship with their grandparents. Lucky girls 🙂
There are a few different forums that talk specifically about Esbriet costs, dosing, side effects etc. The most popular one is this forum, take a peak and let me know if its helpful: https://pulmonaryfibrosisnews.com/forums/forums/topic/starting-esbriet/ , in terms of other forums you’re interested in obtaining specific information about, you can always use the search tool. It is on the top right hand side of the screen with the little magnifying glass, and can help select keywords and only pull up forums of interest. So for the Kaiser question, you could type in Kaiser and see what pops up. There are a few patients from there on here I believe, it sounds familiar to me!
Hope this information helps, and feel free to reach out anytime.
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