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Supplemental Oxygen Questions
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Hello Marianne, it seems like your doctor is advocating for what you need, which is great. Are you able to share a recording of the presentation, if you have it? It would be great information to learn about and share.
Thank you so much and have a great weekend.
Warm regards,
Neha
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Neha –
Hi – I will have to check with my doctor and see if he will give me permission to share his presentation. I will let you know.
Have a great weekend.
Marianne
P.S. There were 11 people in the Zoom meeting – 4 pulmonary doctors from The Ohio State University and 2 other staff people from pulmonary/critical care department. So 5 people in the meeting were patients. Not sure how many patients usually attend as this is first meeting I have attended. They usually meet quarterly in person for an hour then have lunch together but because of Covid they presently meet by Zoom.
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Hi everyone –
Update from my pulmonary doctor. He said he will do calculations from my PFT to correlate to RVSP and will get back to me if he feels I need to have a right heart cath at this time. I am hoping I can avoid this procedure for now. I am still adjusting to wearing the oxygen when on long walks. Yesterday I walked .95 mile which took me 30 minutes. Today I was only able to walk for 20 minutes. I was really tried after walking 10 minutes but I stayed with it for 20 minutes. I hope as I get adjusted to the oxygen I will be able to walk 45 minutes to an hour at a time. Back in the fall before oxygen therapy I could easily walk for an hour. Not so easy with oxygen. I am still waiting to hear if I will be a POC from the oxygen supply company. Hope everyone had a great weekend.
Marianne
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Hi everyone –
I did an overnight oxygen test. For now, I don’t need to add oxygen at night but doctor told me I was very close to needing it at night. I know my numbers dropped into the 80’s overnight but came back up before 5 minutes. My understanding is if your numbers drop below 89 and stay there for 5 minutes, then supplemental oxygen is needed at night. Beautiful weather here yesterday and went for a long walk outside with oxygen. According to my oximeter my oxygen levels were all over the place from 85 to 95. Not sure if I need more oxygen than doctor prescribed. I am going to order a couple new oximeters today from Amazon.
Also coughing more and my voice is very hoarse – with be acid reflux. Have a hoarse voice about once a week right now.
Hope all is well with everyone.
Marianne
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Hi @marianne,
Thanks so much for this update, and glad to hear your doctor doesn’t feel you need 02 at night yet. I hope that remains for a long time for you 🙂 Kudos to you for going walking in this nice weather, not as easy as one might think it is with supplemental 02. Keep an eye on those saturations while you’re walking and make sure to advocate to your doctor if they are too low. Take good care and stay safe!
Char. -
Charlene –
Thanks for the reply. I notice I am getting more short of breath when not doing much at all. I have a feeling that oxygen at night and perhaps 24/7 is in the not too distant future. I have a grandson who weighs around 27-30 lbs. I get very short of breath if I carry him upstairs to his bedroom. I visited with him and my son today. I tool my oxygen along but did not use it. My oxygen levels dropped to 88 when I wasn’t doing much of anything except playing with my grandson. I did not go on a walk today as visited with my grandson and also stopped .by for a visit with my friend and former boss. We worked together for 34+ years. I had not seen him or his new office since Dec. 2019. We had a nice visit but I was tired when I got home. I find I have more energy in the morning than later in the day. My last walk outside my oxygen levels were all over the place. According to my oximeter I was dropping into the mid 80’s with oxygen. I am ordering a new oximeter to see if my current one is defective. Have a great weekend.
Marianne
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Hi Marianne
My oximeter was checked by the hospital during a recent stay and it was spot on this their electronic one, I do know that my other meter is a few ° out so rely on my AVAX one, my readings are all over the place depending what I am doing or have done, takes a minute or two for my levels to go done and about 5 to 10 minutes to get back up again depending on how low I get, lowest, verified, reading has been 55 !!
I am going to get another Avax meter just in case his one goes.
Take care Sue
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Thanks for sharing this update with us @marianne.
I hope you can continue to manage the shortness of breath so you can spend time with your grandson. It is tough to manage, but hang in there and don’t be afraid to use that 02. I was so reluctant to it at first but it really did help me feel better physically: less tired, less short of breath, etc. Take good care and keep in touch!
Char.
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Hey @marianne, oximeters can be pretty finicky, especially if you aren’t sitting still, or are cold. I used to be an MA at a pain clinic and we had a patient that regularly got flagged for pulmonary/cardiac concerns because they were severely underweight and could never get warm. Their O2 readings were perfect once we could warm up their hands but they would read in the high 60s sometimes just because of the poor circulation to the fingers. Just thought I would mention it since it is winter.. I don’t know where you live, but if you’re checking O2 while out in the cold or right after coming in from a walk, that might be a factor in wild readings.
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Susan and Christie –
Thanks for the information on oximeters. I live in Ohio – which is a bit cold in the winter. The walk where I had the issues with the oxygen levels in the low to mid 80’s up to around 95 was on a warmer day around 60 degrees here so it was not the case of cold hands. I am not underweight. I actually need to lose some weight. My oximeter is giving me swinging numbers while inside too. I am going to purchase a new one on Amazon. The Avax looks like it is not available in the US. My oximeter which measures the same as the doctor’s. I was told by a nurse at my pulmonary practice that oximeters can range 2-3 points in either direction. I have a ZacURate oximeter. I totally understand about the temperature. I have gone on walks when temperatures were cooler and not been able to register my oxygen levels at all during the walk. I have a feeling that it is not long before I am on oxygen at night and possibly 24/7. Played with my grandson (15 months old) and oxygen levels dropped to 88. I carried him upstairs to his bedroom to take a nap and I was winded. I do not yet have a POC and did not feel like lugging a tank on wheels up the steps as well as my grandson.
Have a great weekend.
Marianne
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Hi all –
Any suggestions as to what to use to help with a dry nose? I am not yet on oxygen at night. I run a cool mist humidifer at night but still wake up with my nose very dry. Doctor suggest KY Jelly and it seems to help a bit. Have read somewhere that sesame seed oil is recommended. Has any one tried it? Saline mist nose spray? I wear contacts and am wondering if oxygen use is going to dry out my eyes and I will not be able to continue to wear them. I have worn them for many years and mine are a hard Boston lens. Thanks for any suggestions.
Marianne
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Hi @marianne
Good question! A lot of people struggle with this, and I think have chatted about some solutions in the past on here if I remember correctly. Check out this thread, there might be some helpful information here: https://pulmonaryfibrosisnews.com/forums/forums/topic/skin-irritations-caused-oxygen-cannulas/
Otherwise in the top right-hand side of the screen on the PF forums homepage there is a search bar. You could type in something like “oxygen dry nose” and see what comes up. I think there have been some good suggestions if I remember correctly 🙂
Char.
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On oxygen I have a bubbler so until I went on really high out put never had a problem. Much to every ones horror I use a moisteriser (consisting of glycerine, parrafin and vaseline, prescribed by my doctor for my very dry skin caused by the scleroderma) up my nose now, silky smooth and works wonders for me, in the very tiniest of quantities. I know anything greasy is not recommended but I need to breathe and a dried out nose gets so bunged up I resorted to the O2 probes under my tongue one night just to be able to get O2 into me, very scary.
I wpuld never use a spray as they are usually designed to clear a nose and the more you use them the more you need to use them, vicious circle in my humble opinion.
Don’t think O2 will dry out your eyes unless you have an underlying condition that causes dry eyes, like scleroderma.
Take care one and all
PS Yes just found out the Avax oximeter is not available anywhere
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Many thanks for the information about the Inogen G5, particularly Jim and Bill.
The posts on this section seem out of date order by the way.
I now have the G5 delivered by an NHS supplier and am learning how to use it. It should certainly give me mobility.
Bob Osborne
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Thank you for the information on dry nose due to high oxygen concentrator. My husband also suffers with this & it makes breathing even more complex. He even gets frequent nose bleeds. He does use a nasal spray similar to Flonase & saline water spray. Will try some of the other suggestions in this forum.
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I get nose bleeds all the time, not gushers but nose bleeds each time I blow my nose. I am on asprin protect agains blood clots so also get random unexplained bruises, predisolone causes these too.
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Hi everyone –
Update on oxygen levels. I have been using supplemental oxygen 2L when exercising and on long walks. Pretty sure I am going to have to start using it more as I am dropping my oxygen levels when taking a short walk, plus running short errands – like to the grocery, etc. I am still having issues with my oxygen supply company not providing what my pulmonary doctor ordered. I called and email my doctor this week to hopefully get the oxygen I need. When the oxygen supplier delivered my oxygen on March 10 they gave me one skinny gas cylinder tank and it is almost empty. From talking to people in my area on oxygen, the companies that supply supplemental oxygen don’t go out of their way to provide good service. One person waited 9 months for a POC . It seems like all these companies try to decide what they think the patient needs instead of what the doctor orders for the patient. It is very frustrating. But others I have talked to locally have gone through the same process. Some of the local supplier do not provide oxygen to Medicare patients. Is anyone else that is in he US, having problems getting the oxygen as prescribed? I live in Ohio.
Marianne
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Some – not all- O suppliers give you what they think they can get away with. You can find every Medicare supplier in your area by going to the Medicare site. Then call them and ask them if they supply what you are looking for. I suspect the base problem is Medicare not allowing an economic fee. It’s worse since they went to competitive bidding. They can bid as lo as they like and then refuse to supply it apparently.
The tech who handles O prescriptions at my pulmonologist knew all the suppliers and sent my latest Rx to what he thought was the best and it’s really worked out.BTW if you call Medicare they will tell you how to negotiate their website but honestly it’s not hard.
Best wishes
Bill
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@warlock
Bill Kelly 0
Thanks, I did not know this fact. I researched and it looks like there are only 2 companies in my area that charge the Medicare approved amount and accept assignment for oxygen costs). One of them is on the list which my pulmonologist gave me . I will check with them.
Marianne
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@marianne Has Charlene told you about the PF Association? They do work in the US to help get people the oxygen prescribed by their doctors. Sadly, it sounds like the problem you are experiencing with delivery might not be so uncommon. I think they have a great mission, but I suspect the organization might have been hit pretty hard by covid layoffs because I have reached out several times this year and not heard back. It might be worth giving it a try, though, as a patient your needs are more urgent than mine! https://www.pfassociation.org/
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Great suggestion @christie-patient.
@marianne, more information on the Pulmonary Fibrosis Association can be found in this post here: https://pulmonaryfibrosisnews.com/forums/forums/topic/pulmonary-fibrosis-association-providing-02-to-patients-in-need/ in addition to the website Christie provided 🙂
Pulmonary Fibrosis Association: Providing 02 To Patients In Need
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Christie and Char –
Thanks for the information. I did not realize that Pulmonary Fibrosis Association helped with oxygen. That is great to know. My problem isn’t insurance coverage as I have Medicare plus a Supplemental Policy. The problem is that the oxygen company does not want to supply what the doctor prescribed. It is just frustrating as the oxygen supplier seems to want to decide what the patient needs instead of filling the order as written by the doctor. It will eventually all get worked out. I have talked to a few people in the US who have had the same issue with the oxygen supply companies. It doesn’t help that some of the local oxygen supply companies do not accept Medicare patients. OK, that is my rant for the day. Hope everyone has an excellent day. Weather is beautiful again here in Ohio.
Marianne
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Amazingly, Medicare can be helpful. Give them a try. Have the details of your “supplier” ready. They once telephoned a reluctant supplier for me with me on the line.
Bill
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Hi @marianne,
Thank you for the update, but so sorry you’re dealing with some difficulties by the oxygen company. Unfortunately, I’ve heard of this where I live too and sometimes it needs to be a very stern conversation about who has the credentials to prescribe 02, which inevitably ends with: not the oxygen supplier. Hopefully things are settling down there now and you’ve been able to get the 02 you need. Weather is beautiful here too, I’m so happy it is finally spring 🙂
Take care,
Char
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I have been on Oxygen 24-7 for several months now. While I am at rest my level is 85-98 but if I get up to do anything it drops between 78-85 while on oxygen. I am considering getting a Mobility scooter to help me get around the house from room to room. Anyone have experience with the scooters? Than you Sam G
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Hi Sam
I am in the same position as you, at rest I am up to 92 but the minute I move I drop to 75/69 at my lowest, I up my O2 intake sometimes up to 13 to be able to shower, sadly only twice a week as it takes so much out of me, I have stools scattered around the house (live on my own but my daughter comes in twice a day) to be able to rest on whilst my O2 gets back to at least 90. I walk as much as I can even if it is only 10/15 steps at a time, I feel I just have to keep my big muscles oxygenated otherwise I will be bed bound. I have to use a wheelchair when my daughter takes me shopping, can’t even propel it myself, she has to push me. I am on 5lts at rest and up to 13 when I move,on O2 24/7 for 18 months or so now.
Sorry no info on scooters my doors wouldn’t allow one any way. Best of luck
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Hi all –
Most recent news concerning getting a POC from oxygen supplier. I got a telephone call on Monday 4-26-21 from oxygen supply company that they agreed with my pulmonary doctor that I “qualified” for a POC. It would take 3-4 days to get one to me. They will call back when they have a unit available. So hopefully I will have a unit sometime this week.
Hope everyone is having a good day.
Marianne
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Hi @marianne
Thank you for the update on your POC. Unbelievable that the oxygen supply company had to “agree” with the Pulmonary doctor that you would qualify for a POC – very frustrating. Fingers crossed you’ve received it and the adjustment to the device is going well. I use my POC most often, so if you have any questions, please don’t hesitate to reach out.
Char. -
Hi Char and everyone –
Update. I was getting so frustrated as oxygen supply company was not returning my calls I just stopped by their office yesterday to get some answers. The POC has been ordered but has not yet arrived. It doesn’t appear that it has been shipped yet. I talked to a supervisor and voiced my opinion that they needed to return customers phone calls. Since I was basically out of oxygen they gave me a 6 pack of small tanks of oxygen. They gave me a shoulder pouch to carry 1 canister over my shoulder. So at least I now have some oxygen. They first informed me that since I was not on oxygen 24/7 I did not qualify for a POC. When they checked their records, they said I did qualify. I am guessing my doctor wrote the prescription so I would qualify for the POC. Apparently, in the US it is taking awhile to get the POCs to the oxygen supply companies. They informed me that is not an item then keep in stock because it is too expensive. Hope everyone has a great weekend.
Marianne
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Hi @marianne,
That is so brutal, I’m so sorry you’re having these struggles with the oxygen company and POCs. Unfortunately, I’ve heard of this happening often for patients and it’s not fair. POCs are expensive here too, I ended up just buying one out of pocket because I was so irritated dealing with insurance coverage, prescriptions, etc. I hope the 02 supply they gave you until one comes in will help sustain you. I know it’s exhausting but you’re being an incredible advocate for yourself, keep up the amazing work and let us know if we can help, even if its a “shoulder” to vent on. Thinking of you!
Char.
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Hi Marianne
I think that is awful that the O2 suppliers can decide if you do or don’t qualify even after a doctors note. I had a POC long before I was on 24h O2, I now have 2 Pocs as my O2 needs are high and each POC goes up to 17 ltspm, the O2 company suggested I had 2 !!! so as not to be caught out by any longer than 2 hour visits. I suppose I am luckier because the O2 company is state run. Hope you get your POC soon
All the best Sue
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