Sally
Forum Replies Created
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My two cents……..
If your oxygen is “down to 88-92″…do not worry. You only need to worry if it is below 88. I am sure that causes anxiety when you think it’s too low and you can’t breathe.
If it gets below that when you get up and do something, then it’s a cause for some help. At night when I take my CPAP off to use the bathroom, mine goes down to mid 70’s and it’s only about 50 steps each way. However, it goes right back up when I sit/lay down and get connected to my oxygen and CPAP. My Pulmonary says that’s fine if your LPM comes back up in a short time (a minute maybe ?).
As many have mentioned, you need a walk test to determine if you need oxygen full time and at what LPM. I am at 5LPM or more at any exertion, but only 1-2 when I am sitting.
Pulmonary Rehab would be great. They give you oxygen and check your pulse and oxygen levels while you are exercising. You usually have choice of NuStep machines (I bought one for home use and use it every day for an hour), treadmill or bike…in addition to exercises for your entire body (usually sitting). It would be great for you. Medicare or insurance should foot the bill.
Good luck and hope things get better. Sit and relax if your oxygen levels decrease or your pulse gets high. Take some breaths, pulse breathing, calm thoughts…..
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I am 74-1/2 and was diagnosed when I was almost 65. I was stable (no oxygen unless flying) – meaning out of breath on exertion, etc – until almost two years ago. I had an exacerbation (no known cause) and was in the hospital for 10 days on 240 mg of prednisone and 30 LPM of oxygen !! It took a long time to get back to “normal” but I have been on full time oxygen Ince. I was doing well until January when I had another mini exacerbation but now have bounced back pretty well. My oxygen needs are now 5+LPM on exertion – basically just walking around here- and 1-2 if sitting. If I didn’t have another knee in need of replacement, I would probably try walking more but my oxygen tank only goes to 5LPM Pulse, so not really enough. I use a NuStep machine (one machine they usually always have at Pulmonary Rehab) daily for an hour. I go to PT weekly and do all sorts of exercises related to that. I used to travel a LOT, but can no longer fly due to oxygen requirements. Its’ hard when I have grandkids in Alaska and California . I have just started learning watercolor and I knit a lot. I see friends occasionally but have a lot of alone time which is fine with me. I am happy to be here and feeling OK. And, I have never been on OFEV or Esbriet (mainly due to stomach issues/IBS) and my pulmonologist thinks that is just fine. I am in my third clinical trial so hoping someone along the line gets some help from me doing them !!
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I would be concerned about the mass on your liver and whether or not it could be cancerous. Could they do a non-invasive biopsy on that first? I did have a biopsy in 2014 but it was also (as a couple above) to determine if I had NSIP or IPF. I had been diagnosed with NSIP and the prescriptions for that include prednisone at first and then CellCept or aziathioprine next. I had bad reactions to the aziathioprine – hair falling out and laryngitis . I had IPF determined from the biopsies and two pathologist. Now they say just having an HRCT can determine IPF, although it didn’t for me, and I presume others if they aren’t 100% positive from the HRCT. I am also surprised that a cardiothoracic surgeon turned it down. Basically that is what a transplant surgeon is. I would get at least one more opinion – one that would include effects on the liver and heart if done.
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The Sequal Eclipse goes to 3 continuous, but it does go up to 9 pulse – that can help !!
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Sleeping with the upper body elevated helps with a lot of things…….coughing, GERD, apnea, etc. Please do not just put pillows under your head. This makes you head bow into your chest area and compromises your breathing. A wedge helps, preferably under the mattress. Put the pillows under your shoulder/upper back for maximum help. Of course, the best solution is a bed that with which you can control the upper and lower body elevations. I use the lower body elevated when my PH flares and my legs are swollen. My daughter days I sleep like a taco !!
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Be careful that you don’t take too much zinc as it can be harmful in many ways. My doctor said there has been nothing medically conclusive about zinc. He said when it gets out of mice trials and into some clinical trials, we could see some help. But wait til then ! Zinc can be good in moderation.
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Just an FYI….NO Inogen POC’s go up to 6LPM.. They are settings and not LPM. I have and Eclipse and it goes to 9 LPM on pulse and 3 LPM on continuous. It is heavy but works for me now so that I can travel. I am going to attempt Maui in June. I have two extra batteries and it can plug in if needed, so hopefully OK. I am on 4-5 pulse for walking but not that much sitting. I had an exacerbation in September, and before that I used the Inogen 3 with no problem on the plane. I wasn’t on any oxygen other than that. Here is the comparison chart for POCs. Unfortunately, not all companies tell the truth on the phone !!
https://www.pulmonarypaper.org/portable-oxygen-concentrators-comparison-chart-2021/
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I leave things on the floor until I can get to them to vacuum or vacuum/sweep to get them up. All of my visitors know it’s hard for me to bend, and no one cares. I also have a grabber tool for bigger things. I do have cleaners every two weeks for changing beds (just CAN’T do that), vacuuming and cleaning kitchen and baths thoroughly. I live by myself, so it’s not a lot usually but when company/kids come, then it’s a necessity. I can keep kitchen and bathroom sinks, counters , mirrors and windows clean. I use “Branch Basics”……it is cleaner/detergent that all comes from the same source (different dilutions) and it totally fragrance free and chemical free, and it works and lasts forever !! https://branchbasics.com/collections/starter-kits . I make the cleaning people use it also as I can’t stand the smell of cleaning supplies and they aren’t good for us ! I have two air filters.