The Day I Found Out I Needed Supplemental Oxygen

The Day I Found Out I Needed Supplemental Oxygen

Just breathe, passionate help for the PF journey
I still remember the day I found out I needed to use supplemental oxygen.

It was June 2014. I had gone to a follow-up appointment with my pulmonologist after he prescribed a six-week course of prednisone to reduce inflammation in my lungs. My lungs were harmed by the chemotherapy and radiation I received for treatment of breast cancer. I was upbeat, and felt like the prednisone had helped a little, but had no idea of the seriousness of my disease.

I met with the doctor, gave him an update, and made an appointment for another three months. Before I left, he sent me down the hall to do the “six-minute walk” test. This is the test where they have you walk for six minutes while wearing an oximeter on your finger in order to measure how much oxygen is in your blood as you exert yourself.

I failed this test, registering 84% O2 saturation after only three minutes of walking. My first clue there was a problem was when the alarm went off on the oximeter, and two nurses came rushing over to me to catch me in case I fainted. I felt fine, and was wondering what all the hullabaloo was about. The nurse said the doctor wanted to talk with me before I left. I said, “No, I’ve already seen him, and he said I could leave after this test.” She said “No, he needs to see you.”

I sat in his office wondering what was going on.

When he came back in, he said, “You need to use oxygen.” I said, “What? What are you talking about?” He then explained that I needed to use supplemental oxygen whenever I walked anywhere. He didn’t explain what was going on with my lungs, he just handed me a prescription for it and told me the oxygen company would be calling me and bring me what I needed the next day.

I said, “You want me to push a canister around when I’m walking as if I’m an 80-year-old woman (I was 58)?” He said, “Yes.” I said, “I’m not going to do that. You need to come up with a different option.” He looked shocked at my response, and then offered me the option of prescribing a portable oxygen concentrator that I could wear in a bag over my shoulder. I said that I was willing to give that a try.

He then asked me to go to the next building to get a CT scan of my chest. He wanted me to push his little tank of oxygen over there, but I told him, “No thanks, I’m fine walking over there on my own.” As I look back, I am shocked that he didn’t explain what was happening to my lungs that necessitated supplemental oxygen, or offer any acknowledgement of my distress.

Here’s what I wish he’d said to me:

“I’m so sorry to tell you that your lungs have gotten worse since we met. It looks like the prednisone helped a little, but your lungs are still really struggling. They are inflamed and have some scarring in places that air used to go into. Because of this, your lungs cannot take in enough air to send to the rest of your body. In order for your body and brain to stay healthy, you’ll need help getting more oxygen than your lungs can provide. The way we do this is to give you supplemental oxygen to breathe. This way your body gets air both from your lungs, and from this tube we call a ‘nasal cannula.’ You won’t need to use this when you are sitting, just when you are moving around.

“I know this is quite a shock and you are trying to make sense of what I’m telling you. I’m so sorry to deliver this awful news. Do you have any questions about what I’ve said so far?

“There are two main ways for you to use supplemental oxygen when moving around. You can push one of these tanks around and go wherever you want. You can also carry a portable oxygen concentrator in a bag, on your shoulder, or in a backpack. This is a small machine that takes in room air and gets rid of the nitrogen and other gases in the air, concentrates the oxygen to a higher level and sends it back to you to breathe. I can order either one to be delivered to your home tomorrow. Which one would you like?”

What a difference it would have made to get a kind and informative explanation like this!

How about you? How were you told that you needed to use supplemental oxygen? What was that experience like? What did you like about how you were told, and what do you wish had been different?

Next week I’ll be sharing more about supplemental oxygen, and what I’ve learned about the different options out there. Please leave me questions you’d like answered in the comments section below.

Please share this post with anyone you feel could benefit, or on social media. We’re in this together.

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Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.

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16 comments

  1. Frank Badding says:

    Good information is always very helpful in making decisions. Therefore I would like to know if 88% saturation is absolute limit for needed supplement oxygen. Also if it goes down to 88% for a minute or two and almost immediately goes back up into the 90’s is there a problem? And what kind of a problem are we talking about? What kind of damage is caused? Also does insurance cover supplemental oxygen and or the concentration machine that is portable?

    • Hi Frank! Thanks so much for your comment. I’d be happy to give you an answer based on my own experience, but I’d encourage you to contact your pulmonologist to be sure. I’ve gotten different input from different doctors. My current doc doesn’t want me going below 92% saturation, and my prior doc said to not go below 90%. I personally try to keep at 93% or above. I would think the situation you described – ‘going down to 88% for a minute or two and then almost immediately going back into the 90’s’ is not a problem. This often happens for me if I’m walking or exerting myself.

      The reason we try to keep the O2 level above 92% is that if a patient is living their life at a lower level, the oxygen starts having trouble getting to the entire body and brain, and our organs start to suffer, and eventually will fail. It is a very big deal, because we want to stay as healthy as we can for as long as we can…and keeping our O2 levels above 92% is a huge part of that happening. Most insurance companies will pay for supplemental O2, and the rental of a portable oxygen concentrator. Make sure and check with them directly. You will need a prescription from your doctor, which is not hard to get. Check back next Tuesday for my next blog post, where I’ll cover a lot of this. Thanks so much for being a part of our discussion! Blessings to you.

  2. Jacqueline Snow says:

    I have a portable oxygen concentrator, but it is a pulse. Is there a continuous flow portable. I don’t get enough oxygen when I walk with my portable. Should I contact the supplier for another option? My health care provider has not educated me on the types or availability of the oxygen equipment. I have a dr appointment on 3/30/17, what questions should I ask? Please help me.

    • Hi Jacqueline, Thanks so much for your comment. Great questions! There are a few continuous flow portable oxygen concentrators, although they don’t go up very high. Please check back next Tuesday for my next blog post where I will be covering a lot of this information. I received no information from my physician either, and have had to figure out all this myself. I’m looking forward to giving you and other readers more clarity on this topic.

  3. My portable is a pulse I keep it on the highest setting. Yes, there are times I wish it was a continued flow. I have panick attacks when I get short of breath. My husband doesn’t understand saying to me “You need to calm down” just makes it worse. I don’t think he ever will till it happens to him.

    • Hi Karen, I totally understand…it is so stressful to have to worry all the time if you will have enough oxygen. I never had any idea just how difficult this is until it happened to me. Sending you blessings Karen.

  4. Sherry Siegel says:

    Hi, Kim,
    Thank you for sharing this. I think your “what I wish he’d said” is a fantastic model for any doctor to follow for delivering information! I hope your post will be read by those who need to learn this.
    Very best wishes to you,
    Sherry

    • Thank you so much Sherry. I appreciate your encouragement. I’m working on a book for terminally ill patients and their families, and have a chapter for doctors. They provide so much wonderful help, but sometimes need some help with the empathy part!

  5. Diana Johnson says:

    Doctors are not experts in supplemental oxygen equipment, nor do I want them to be. Oxygen companies and respiratory therapists customize your equipment to your specific needs. To me, the most important information in determining what equipment you need is the flow rate established by your doctor as best for you. For a number of unusual circumstances all coming together at once, my immune system attacked my lungs. My volume was reduced to about 45% and diffusion to 30%. When I first left the hospital I was told to use 3L per minute. With 2L or 3L, there are several choices for pulse and continuous flow portable machines that are not to heavy or unattractive. I have progressed to needing 6L and there is only one portable choice-compressed or frozen oxygen (@5lb. when full), and that’s its top limit.I had a cover made for the tank and bought a little cart with wheels, so its as good as it can be. It does allow me to drive and work out and maintain about 98% saturation. 92 or 93% is not enough for me and I worry about the added stress on my other organs, since 98% to 100% is normal for a human. Apparently oxygen machine companies are not able to make a motor that has a reasonable weight, reasonable battery life, etc.etc. By the way, here’s a plug for Oxygen-View-glasses that are made to feed oxygen to your nostrils rather than a cannula. Works up to 5L, but I am able to use them even now, at 6L.

    • Hi Diana, Thanks so much for sharing your knowledge and expertise about oxygen use, as well as your own experience. Thanks too for the heads up about the glasses. I think I’ll check into those! Many blessings to you…

  6. Maureen Lake says:

    When my doctor advised me O2 was needed she was compassionate & her explanation was thorough. I was still shocked, started to cry. I did get O2 & am doing well

    • Hi Maureen…thanks so much for sharing your positive experience. I’m so glad your doctor was compassionate and clear. So glad you’re doing well with the help of O2. Thanks for your comment!

  7. Kels Kirkland says:

    Hi my name is Kels Kirkland. I was born with chronic Asthma I was intubated at 2 year’s old, I had a big influence in my young life my grandfather however he passed away of Asthma at 52 I was 7 years old and it rocked my world. From then I never thought I would out live him. My life continued on till 22 years old spending 7 months out of the year in and out of the hospital till I was so sick I went to a science hospital alone at 23 for any help the name if it is called National Jewish in Colorado they helped me out pretty well. Moving forward…I wanted to live out my dream and open a sailing business in Hawaii. I was happy I still was fighting my lungs but my zest for life was huge. One mourning I just woke up lifted my head to get the phone and I passed out. At 37 I need 4 liters of 02 around the clock. The dry mouth and high steroids ruined my bones and chipped all my teeth. I can’t write how mad I am at the sh–t doctor! Since 37 with o2 my life has STOPPED. I am now on the list for transplant and I am so sorry I am not being positive writing this. Nobody has asked me how I got on O2 till now. And I am mad as hell at 43. On New Years eve 2016 about 4 hours before we rang in the new year I was intubated for 7 days and got out of Scripps Hospital at the end of Feb 2017 I guess God had other plans for me! Those of you who need a great Hospital Scripps is great!

    • Hi Kels,
      Thanks so much for sharing about what you are going through. What an ordeal you’ve been through with your lungs since age 2. I can’t even imagine what you’ve been through, and I’m so sad for all you’ve endured. In the midst of this you still somehow keep fighting…amazing! I appreciate your honesty, and there is no need to be positive about the way your life has been so negatively impacted by lung disease. What a way to start the new year…ugh! I think God does still want you around! You are a brave one. Keep enjoying the parts of life you can and allow yourself to grieve the parts of life lost. We’re in this together…

  8. Cheryl Salazar says:

    After my biopsy I went home from the hospital on 2 liters of oxygen. I’m now on oxygen anytime I have physical exertion I’ve managed to go to the gym with a tank so that is constant flow because my portable only goes up to 5 and with physical exertion at the gym it’s not enough when I sleep at night I have an Invacare homefill II machine when I was first diagnosed my pulmonologist looked at both my husband and myself and told as to go home and be kind to each other. When I asked him how long I would be on the oxygen and how much to use he said he really didn’t know and that I should have just as much as I felt I needed ….but probably for life. when I asked if I could return to work he said absolutely not. When I asked if there was any treatment or medication or therapy available for me he said no I’d have to wait I was devastated I went home and told my two teenagers the sad news went to bed and cried for days. Since my diagnosis in December of 2015 I have become my biggest advocate I don’t take no for an answer I question when I need to I gather as much information as I can possibly and then I rally around all victims of pulmonary fibrosis and interstitial lung disease. I have joined two support groups and I’m on a patient Advisory Board. I have started my own blog.I try and think positively and live in the moment it’s not always easy there are days it’s very challenging but what choice do we have I don’t like the alternative so I’m moving forward I’d like to thank you for your information posted here very helpful.

    • Hi Cheryl, Thanks so much for sharing your story. It is such a shock to get this diagnosis and then see so little options for treatment. I LOVE that you are your biggest advocate! I’m the same way 🙂 I love that you are so active in helping others through this disease. I enjoy this as well. It gives me joy to come alongside others who are struggling too. I’d love to read your blog too. Could you share it here?

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