Pulmonary Fibrosis News Forums › Forums › Healthcare Questions › Diagnosis Information and General Questions › Oxygen Questions
MemberApril 17, 2020 at 2:37 pm
Hello Bill, thank you for providing this info. Very informative for our members who are on Medicare. Thank you again. Mark
MemberApril 17, 2020 at 3:31 pm
48 hours with new right lung
MemberApril 17, 2020 at 3:53 pm
Congratulations, I’m happy for you. You’ll be in my prayers.
MemberApril 17, 2020 at 5:12 pm
Here’s one of the PF Foundation seminars on oxygen therapy. It is wonderful for those of us who are expert on neither oxygen nor what is available from suppliers. https://www.youtube.com/watch?v=QO45P_k5qbQ&list=PLpH8pAi91UL3l4fg5vsBkQMauqUA2FLPZ&index=7&t=0s
Another from PFF from a different slant – best single one I’ve found, starts with basics: https://www.pulmonaryfibrosis.org/life-with-pf/pff-educational-resources/webinars/oxygen-equipment-overview
You may need to allow Flash and cookies for this one to play.
The very best column on the struggle to get liquid oxygen: https://pulmonaryfibrosisnews.com/2017/06/27/pulmonary-fibrosis-patient-shares-tips-getting-liquid-oxygen/
If you are thinking of buying used portable ocs on Ebay or Craig’s list for, say, international travel I’m happy to share my experiences with you. I got some good advice from the manufacturers of these machines.
Just remember this is your life, not a rehearsal. We don’t go around again. Good luck to everyone here and do try to stay cheerful.
MemberApril 17, 2020 at 5:15 pm
Hello Bill Cusack, this is great news. Congrats! Mark
MemberApril 17, 2020 at 5:18 pm
Hello Bill Kelly, thank you again for the links and valuable info. Mark
MemberApril 18, 2020 at 1:17 pm
Hi Bill —
This is excellent news, thank you so much for sharing! Congratulations on your transplant, what a surprise but so happy for you. Best wishes, and I will be thinking of you throughout these next few weeks as you recover. Take care!
MemberApril 21, 2020 at 11:34 am
Great news, hope you have a good recovery. Please share anything you can – I have my new patient call mid May to start the process to see if I can get on the list at Shands in Gainesville FL. I know this thread is about oxygen, and I have been using it as needed on a 2-3 lpm rate. This works fine when I am standing, walking, or in the kitchen, but my sats drop if I walk up the steep driveway to my mailbox. I used some HSA money to buy a portable concentrator that goes up to 3 lpm, but may have to pay to upgrade if I need more. My local oxygen provider is Lincare – haven’t asked them about liquid O2, but sounds like that would be a boon for lasting longer than a tank or the batteries on a POC. Not to mention quieter than the machines!
MemberApril 21, 2020 at 12:25 pm
Bill Kelly, thanks very much for those links!
My most recent problem regarding O2 came over these past couple weeks as the COVID shutdowns went into effect. A scheduled delivery from my provider did not happen, When I called the next day, the fellow on the phone said that the Gov had ordered lock down of all activity other than emergency services. This was not true. The limitation was to essential services.
It took me another three calls over two days to reach a supervisor to voice my complaint. She apologized and explained that they reasoned that since I was ordered to stay shut in and I had my home concentrator, that I would not need tanks. I explained that I was on a lung transplant waiting list requiring regular hospital visits and that I would not be able to make those visits, not make it to the hospital if I got the call for transplant without O2, and that my situation would soon become an emergency if they would not deliver the O2. She again apologized, understood and arranged for delivery of extra tanks beyond what I had requested.
On my next hospital visit, I found that they were far less generous with dispensing O2 there. I had been taught on previous visits that they wanted me to use their tanks while in the hospital and these were always available right inside the entry. That was no longer the case, and I had to follow directions to no less than four different locations before finding someone who could provide me O2 to use while in the building. Frustration was building by then!
That night, on the local TV news there was a piece about how the COVID crisis had depleted hospital supplies of both O2 and of blood, There are so many ripple effects of this in the health care industry that nobody ever anticipated. We all learn.
I have severely curtailed my own use of the O2 in tanks by staying indoors, walking and exercising on my concentrator supply, and using a pendant oximizer to make the tan last longer when I have to go out
MemberApril 21, 2020 at 6:31 pm
Stephen, your O needs sound exactly like mine. Unfortunately there are no portables that give more than 3L/Min. Lincare is a multinational that certainly supplies LOX in some markets because I met a lady in my doctor’s office who was being supplied by them. With portables it’s a simple matter of physics and chemistry. The nitrogen is extracted by a tower or column containing zeolite. To extract more N, thus leaving more O, you need a longer tower so size is a necessary factor.
I used gaseous O for some time putting the smaller (B?) cylinders in a back-pack. They are much lighter (5.8#) than a POC but they don’t last any longer than a battery at 3L/min. I was using 10 a week. I did have a lot of trouble getting LOX and really went to enormous lengths but it was worth it.
My setup is a stationary Philips OC for sleeping or around the house if I need it. I bought a POC on Ebay and use it for air travel (Not right now, of course). I get a reservoir delivery of LOX about every 4 weeks. I fill a portable LOX tank, a Helios 850 Marathon (5.8# when full). Which lasts all day even playing 1-2 hours table tennis with continuous flow. If I’m just sitting or driving I can turn the flow down to D2. D = Demand, 2=2L. Important D is not the same as “pulse” though it works the same way. D really does deliver the equivalent of the number of liters indicated with every inhalation. Complicated eh? You can find all the available portable LOX cylinders on the net. Helios is made by Caire see Caireinc.com
Paul, this shows how dependent we are our suppliers. What a sinking feeling when you can’t to a decision maker.
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