Thoughts from an Oxygen User

Every 5,000 Miles or Three Months…
Featured Oxygen Patient Shares Their Thoughts & Experiences

Appointments, tests, hurrying-up to wait, and Doctor’s who are frequently pressed for time. Sound familiar? It can feel as jumbled as taking your car to the shop for what should be a routine oil change.

We tend to find that maybe we didn’t use up all 5,000 miles, but it has been longer than three months, and it is time to take ourselves to the doctor.

Of course, this begins with pushing buttons and being placed on hold until we finally reach a live person who may or may not have the authority to schedule us.

Then there are the tests. Like a car, there are fluids, valves, and pipes that need examination.The difference for us as patients is there is not a road map nor an instruction manual in the glove box.
Thus, we stumble, fumble, and get flummoxed while feeling upside down and inside out.

In a strange way, I feel lucky that I have been a patient my entire life. Lucky because I have a lot of practice and feel I am slowly beginning to master this. Therefore, I thought I would share a few ideas that work for me:

  • I keep a spiral notebook just for my medical information. I write a list of ALL of the medical appointments I need to make. I also have a list of any tests my medical team wants (i.e. blood work, X-rays…) I try to schedule all the pre-work before I am to see the doctors, this way when I make the appointment I make sure to mention the labs will be complete prior to my arrival.
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  • The other thing I keep up-to-date is my med sheet. To digress for a moment, when I put together my medical information for my doctors, it is four pages. I know that sounds crazy, but bear with me as I explain:
     

    Page one is my medication sheet. I list each medication with the dose and the frequency – each one on their own line. Page two is a listing of my diagnosis and my allergies to both food & medicine. Page three lists each Doctor, specialty, and phone number. Don’t forget to include any homecare nurse or other therapist (physical, occupational, or psychological). I list my pharmacy and I include my Oxygen company. The final page lists my spouse, contact information, and that he has both Durable & Medical Power of Attorney as well as the fact that I have a living will.

    This does sound a bit long-winded, but has served me well, when I have had to go to the hospital unexpectedly as my Caregiver doesn’t have to think, he knows where to find the updated med sheet and just hands it over.

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  • The final piece to this maze of going to the doctor or any other activity is always planning ahead in relation to my oxygen. A portable oxygen concentrator really gives us a lot of freedom; however, it is only as freeing as we are charged.

    Just like a car, without gas, we just peter out. This means making sure my batteries are charged and I have an AC/DC chargers with me. I have my oxygen battery charger & electric outlet next to my shoes, and further up the wall the key rack.

    Leaving the house, everything is in one place, the charged batteries, my oxygen tank, my shoes, keys, purse, and my updated med sheet.

 

This is my personal road-map to get me out-the-door and on the road. These tune-ups we need as patients can be tough, but with a few preventive steps, we can try to maintain our time in the shop to be not quite so shabby!

By:
Diane Neal
Just Breathe


To all my fellow oxygenating friends,

Hello! I am excited to join the Oxygen Concentrator Store's family as a featured writer. As someone who has been on continuous oxygen for more than ten years (intermittent before that), I am happy to share tips & tricks that have (or haven’t) worked. Please remember, I am not a Doctor or Nurse or any other medically trained professional. I don’t play one in any theater setting or in real life, so please, always, ask your medical provider first.

With that said, I welcome you to ask questions and share comments. The best way to do so is to post in the comments below. I, along with the AMSR staff, will try our best to answer what we can or seek out answers if we don’t know.

I love living life and I want to share that with each of you and hopefully help you get out and enjoy living life too. Although, we may need oxygen, we are not tethered!

Watch these newsletters for fun tips and even a chance to win some prizes! Don’t forget to get involved with your comments & questions.

Thank you, fellow oxygenating friends.

Just breathe,
Diane

Disclaimer: The author, Diane Neal is not a medical professional and the content of her article is not professional advice. The general information or opinions provided should not be used to diagnose or treat a health problem without consulting a qualified healthcare provider.

18 thoughts on “Thoughts from an Oxygen User”

  • joan

    friends and once, a doctor's nurse have said to me "don't use your oxygen all the time,you will become dependent on it and it will be harder to breathe without it." have you found this to be true?

    Reply
    • Danielle Jason

      Thank you for your comment, Joan. The idea that you will become addicted or dependent on oxygen is not true. You should be using your oxygen therapy exactly as much as you physically need, no more, and definitely no less. It is always best to solely take the advice of your dedicated medical professional such as your personal doctor regarding your health and oxygen therapy.

      Reply
    • Judy

      We are ALL dependent on oxygen, wether we get it via a tub or just breathe natually, so use your oxygen as directed by your Dr.

      Reply
  • Nita

    I need to know if you have any info on what services would be able to help me with a portable oxygen machine. I have no insurance at this time, and need help getting one. Please let me know or if you need more info from me.thank you so much nita

    Reply
    • Danielle Jason

      Thank you for your comment, Nita. I have passed along your information to one of our Oxygen Specialists who will reach out shortly. If you'd like more immediate assistance you can reach out to our oxygen specialists at 877-774-9271, they can discuss our various financing options with you.

      Reply
  • Barbara

    The oxygen and cannulas make my nose dry and a bit sore. Any advice on treatment?

    Reply
    • Danielle Jason

      Thank you for your comment, Barbara. Take a look at our blog on How to Prevent Dry Nose, Throat, and Mouth on Oxygen here: https://www.oxygenconcentratorstore.com/blog/prevent-dry-nose-throat-mouth-oxygen/!

      Reply
      • Marlene

        I just joined. I use the room concentrator on s long 40 ft home and the POV when I leave the house (24 hour oxygen needed. I just received the pic and I also can’t get use to breathing in as it seems like I can’t get air compared to the room one where it is there constantly. I also have to sleep with this propped up. I read the article ref. The patient that her nose gets dry and asked what to do. I can’t get it ref. To your article. Please list it again because I really need to read it. Thank you.

        Reply
        • Danielle Jason

          Thank you for your comment, Marlene. The article you are referencing can be found via the following link: https://www.oxygenconcentratorstore.com/blog/prevent-dry-nose-throat-mouth-oxygen/

          Reply
  • Clarence K Robison
    Clarence K Robison November 2, 2017 at 7:23 am

    I enjoy ballroom dancing. I thought I was going to have to give it up. But with my new portable unit I find I can hang it on my back and the way we go!!!!

    Reply
    • Danielle Jason

      Thank you so much for your comment, Clarence! That is wonderful news and we'd love to hear about about your journey! Please check your personal email address.

      Reply
  • Gary Ingram

    I am person who need a double lung transplant for 9 1/2 years. But rehab, and going to a gym has help me so much .This will make life more enjoyable and gain your freedom back, that you lost. Also check to see if any lung support groups ,that you can join too. But you must do rehab first,to get your body use to and your breathing. One thing to remember POC are great, but ,they do break down,so have a back plan.

    Reply
  • Kathleen Hudson
    Kathleen Hudson November 3, 2017 at 3:15 am

    I have a POC but have problems using it. I am a mouth breather and the oxygen quality alarm keeps going off even though I make a conscious effort to breathe through my nose. Do you have any suggestions or advice on where to go for help?

    Reply
    • Danielle Jason

      Thank you for your comment, Kathleen. Depending on the brand of oxygen concentrator you are using you can sometimes silence this alarm. However, deafening this alarm would cause you to be unaware if you have switched back to mouth breathing and thus you could go a prolonged period without the oxygen therapy you require. We suggest talking with your doctor and discussing your breathing habits with them.

      Reply
  • Twyla Zorba

    Is there any tubing that you can recommend that does not wind up, crimp, and drive one crazy. Or is this something we just have to put up with when using our stationary concentrators. Any suggestions would be appreciated.

    Reply
    • Danielle Jason

      Thank you for your comment, Twyla. May we ask what current brand and style of cannula you are currently using that you do not care for? We may have solutions to help avoid those annoying tangles and crimps.

      Reply
  • JoAnn

    I am wondering if there is a setting for inhaling on POV. I dont have problems with concentrators but with being able to get oxygen when inhaling.to turn oxy on.

    Reply
    • Danielle Jason

      Thank you for your question, JoAnn. Aside from ensuring that your cannula's are properly connected, and placed in your nostrils, you may want to reassess your oxygen needs with your doctor. If you are incapable of triggering your unit's pulse dose delivery system you will want to consider other options of oxygen therapy with your physician. Using a continuous flow delivery system, that is not triggered by inhalation, but is consistently and constantly producing oxygen, may be easier for your abilities and condition. Again, we recommend speaking with your doctor regarding your situation.

      Reply

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