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Using oxygen

Last night I received a delivery of a concentrator and portable oxygen tanks. This is because when I went to my new Pulmonologist my 02 Saturation level was at 86%. I worked for 10 years in a DME company, but I was never on this side of a cannula!

 I wasn't a smoker, but I think everyone will see me and assume I ruined my own life with reckless living. In actuality, what happened was I got the flu and bronchitis last winter, which left me with constricted airways and asthma. I am ineligible for flu shots because of a neurological condition. 

I realize this  oxygen will help prevent damage to other organs, but this is depressing and embarrassing.

 

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  • K8sMom2002

    Gloria, I remember all too well how "on-the-spot" my mom felt when she started having to use oxygen. She felt that all eyes were on her and that she needed to explain the concentrator and the oxygen. Like you, she felt anxious and depressed and embarrassed at first. And she was aggravated and frustrated that her lungs weren't doing the job.

    I'm reminded of advice that either Ann Landers or Dear Abby used to give about answering personal, nosy questions: "And why do you need to know?" they would advise.

    If people ask you about why you're on oxygen, if you feel like it, you can tell them. If you don't, you can simply say, "I'm on oxygen because of the advice of my doctor." 

    WE know and YOU know and your friends and family know that you didn't choose this. for putting your health first and following your doctor's advice, even though it was a tough decision!

    Fingers crossed that your doctor goes to bat for you with your insurance company, and you get the smallest, most convenient and inconspicuous concentrator that will give you lots of freedom to roam. 

  • Gloria

    I hold out hope that after all my tests come back, they will be able to find something to open the constriction in my bronchials. Maybe that is just denial…

  • Kathy P

    Hugs….I had not thought about the potential stigma of getting the O2.

    I've had 3 different people in my life who wound up on O2:

     - My paternal grandfather – wound up with lung cancer after years of smoking. But had not smoked in probably 15 years before he got cancer.

     - My maternal grandfather – had emphysema, but not from smoking. To my knowledge, he never smoked. He was an upholsterer and was constantly breathing in tiny fiber particles and I'm sure nasty chemicals used in the fabric sizing.

     - My uncle's wife – she had some disease that atrophied her lungs. I was never really clear on what it was, but she was never a smoker either (to my knowledge)

    People will always find some way to judge. You need to do what you need to do for your health. It can be easy to image that everyone is judging you – even if they are not. My hope for you is that you feel so good with the extra O2 that you just won't care what others think! It's OK to grieve this – it's a loss and you need to take the time to wrap your head around it.

  • Kathy P
    Gloria posted:

    I hold out hope that after all my tests come back, they will be able to find something to open the constriction in my bronchials. Maybe that is just denial…

    I'd call that hope….not denial at this point. This might all be temporary.

  • K8sMom2002

    Nope, it's hope, and hope is good. I think it's a sanity saving measure to go into any new situation by saying, "As far as I know, it's for NOW, not forEVER." Hopefully your doctors CAN find something that will improve things. You're certainly asking all the right questions and doing all the right things.

    And you never know what can happen around the bend … there is research every day, and new meds developed every day. 

    Like Kathy P pointed out, this is a change for you that can and will cause grieving. It's is okay to grieve. We are here to listen and to offer hugs and support. 

  • Gloria

    I will be 63 in February. I always looked many years younger than my age. Now I think I will look like an old person. 

  • K8sMom2002

    No, I'll bet you look like a young person who happens to have oxygen. My mom felt the EXACT SAME WAY (and she looked far younger than her age as well.)

    But you know the funny thing? For those of us who were around her all the time, the oxygen became almost invisible and we often forgot about it. In fact, SHE had to remind us!

    How often will you need to use it? Did your doctor recommend you use it just at night or during certain activities?

  • Kathy P

    I know it's not the same, but my mom struggled with needing a cane. It took a while for her to get over her pride and use the cane! But now, she wouldn't go anywhere w/ out it! The she got "upgraded" to a walker…well, it was back to square one! She was willing to use it in the house, but not outside. We were visiting and I asked if she wanted to come on excursion with us. I recommended that we take the walker with us – she also has a wheelchair, but that was going to be even less convenient. After a day with walker, she realized that it really was more stable and she felt more secure with it. Now, her walker is all tricked out with glides and a tray!

    She's 80, but still doesn't want to "look like an old person!" She always looked younger than her actual age – and thankfully, I inherited that too

    You are going to find a way to rock that O2 tank and make it look cool!

  • Gloria

    They told me to use it as needed. What that is, I'm not really sure. But after learning that my sat was low after mild exertion, I got to thinking…probably when I am coughing and barking it is my bodies' way of trying to clear constricted airways and allowing better oxygen flow.  I did order a pulse oximeter, so when it arrives I will be able to quantify low saturation.

    I think that one good thing about the oxygen is that when I encounter a trigger like perfume at work, all I will have to do is turn on the 02. Problem solved! With that help I should be able to make it through my last one year three months. Now I still need to find some kind of flu and pneumonia immunization that I can use. Hope I can get that sorted out, because with Transverse Myelitis, I have just always been told no can do.

  • Gloria

    The bag is already black, all I need is some skull and flower appliqués!

    I used to need a cane when I had parasthesia from Transverse Myelitis. I found a cool one that was carved with a snake wrapped around it. Funny story: one day as I came around a corner with my cane, a woman was coming from the other direction with her little dog. The dog saw my cane, yipped and jumped about a foot in the air! LOL!

  • K8sMom2002

    Gloria, has the oxygen helped? I'm hoping that it will be like it was with my mom — she had no idea she'd felt that bad for that long, and it really did give her more energy and a new lease on life.

  • Gloria

    Thanks for asking, K8SMOM. After the initial shock to the ego of using 02, I am happy to have it. 

    Tonight I will have a nocturnal saturation test.

    I went to the allergist yesterday. Wrote about that on my other post. But the allergist thinks that I may have lung damage from my autoimmune disease. She wants to do some kind of imaging after I have used the 02 for a while and achieved some healing. She did say that my lungs sound good, though.

    Thankfully, the cats have not molested the tubing, as I was afraid they would!

  • K8sMom2002

    Oooh, tubing for kitties is often an irresistible temptation!

    I'm glad your doctor had good things to say about your lungs — and I'm crossing fingers, toes and eyelashes that the imaging will show big improvement! How long does she want to wait?

  • Gloria

    Not sure. I have so many appointments and tests that I was just glad I did not have to schedule another one. I think I am in good hands with my new Pulmo. The Allergist confirmed yhat the is a very good and thorough doctor.

  • K8sMom2002

    Oh, yay, Gloria! Getting the right doctor makes ALL the difference in the world, and one who will work well with the rest of your medical team is the cherry on the top!

  • Jen

    Love that you have the bag w skulls and flowers!  Glad to hear you feel happy to have the oxygen.  I think it will make a big difference for you in the long run.

    Funny about the kitties messing with the tubing.  I guess I won't let my son near your house because he loves to chew on things like that.

    As for people assuming, well, we all know what happens when you assume…  Btdt, though, with all kinds of things.  When I tell people dh had lung cancer, they ask if he smoked.  When I tell people ds has autism, they ask if I had done xyz when I was pregnant with him.   I have gotten better at brushing it off, but it is upsetting at first.

  • Gloria

    Thank you, Kathy. The more I know the better I can learn to face these challenges!

  • Gloria

    I.did a nocturnal oximetry test last night. I have the PFT nests week and will get the results of both tests on October 18.

  • K8sMom2002

    Gloria, fingers crossed you get good clear answers that will help you and your doctors create a good working plan!

    Just curious — did you use your supplemental oxygen with the test? Or without?

  • Gloria

    I used no supplemental oxygen with the test last night. When I woke up this morning, the meter was off. Maybe I rolled over on it or one of my cats stepped on it during the night. We'll see if they got enough data.

  • Gloria

    I just got to try out my theory for beating a perfume assault! Someone walked in reeking of cheap perfume. I got out my oxygen and turned it on. Even when she was in close proximity, I was fine! Wonderful!

    With oxygen, I am indomitable!

  • K8sMom2002

    That is AWESOME!!!! I am so very happy for you!

    Is there any way to convince your insurance company to help you get a lightweight portable concentrator? That way, you'll be free to roam the country.

  • Gloria

    I seriously doubt that my insurance would ever cover a portable concentrator. But I did get the small tanks and they are very portable. At this point, I feel like I should just wait and see how things work out with all my upcoming appointments and tests. I am glad that they are finally trying to analyze my situation instead of just trying to get me to take extremely strong corticosteroids.  

    Of course, I would rather have a portable concentrator, but for now I am happy to wait and see what happens. Should the need become apparent that this would be in my best interest, I am more than capable of being very outspoken in getting what I require.

  • K8sMom2002

    Good to know that what they will easily cover is working well for you … I can understand the wait-and-see approach. 

  • Gloria

    Actually, they tried to deliver the big tanks on wheels, but I told them no, I need the small tanks. They almost didn't go for it, but I did get them to acquiesce by telling them that I would make sure that my Pulmo would submit an RX for them, which he subsequently did. 

  • Gloria

    They are 12 inches tall and have a circumference of 10 inches. The regulator has intermittent flow that only delivers upon inhalation (Bansai Velocity). As far as how long they will last, I'm not really sure yet. I am sure, however, that as more people are coming in, they will go more quickly. I am keeping two extra tanks in my truck (in a thermal bag). I have already found that if I kick it up to 3 LPM  during a heavy perfume assault, I feel better. I will discuss this with my Pulmo when I see him on 10-14.

  • K8sMom2002

    Good! And definitely check with your insurance about that concentrator before then, so that you can ask your doctor about writing any sort of letters or helping you file appeals for a portable concentrator. It made SUCH a difference for my mom. She was no longer worried about running out of oxygen. 

  • Gloria

    This morning I took my new oximeter with me when I had my bike ride. When I first started, my sat went to 86, then it went up to 97. I checked it after I rode up a long slight hill and it was 84! Oh no!

  • Jen

    Glad to hear the oxygen is working so well for you.  As for your bike ride today, how were you feeling after?  I know you said that usually exercise seems to help.  

  • Jen

    Well, you do exert yourself more, even if it's a slight incline.  Still, I'd put it on the question list for the dr.

  • Kathy P

    Wow, I think those numbers are very telling – and a little concerning that you don't "feel" anything when your sats drop.

    I know the last time I went biking, I tackled a slight hill (not a lot of elevation, but fairly long) and was hurting pretty bad at the top. I didn't think much of it since I hadn't ridden in a while. But I was not able to recover like I usually do. Normally, I can stop at the top, rest a bit, then carry on like nothing happened. I was flared for several days!

  • K8sMom2002

    Gloria, glad you documented this and you'll share it with your doctor. I think that's going to help you convince your insurance company to pay for a small and portable concentrator so you can continue to bike and exercise. Physical exercise like you're doing is SO important in helping to keep you strong and well, and it's really concerning that your O2 sat dropped like that and you didn't feel it! 

  • Gloria

    I know, huh? I have been hiking in high elevations prior to having this problem, and I definately felt it, but I feel nothing with exertion during my bike rides.

  • K8sMom2002

    Fingers crossed that you can get some good answers from your doctors, and that your insurance company will work with you!