The Day I Found Out I Needed Supplemental Oxygen
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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Comments
Frank Badding
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?
Kim Fredrickson
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.
Jacqueline Snow
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.
Kim Fredrickson
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.
Karen Williamson
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.
Kim Fredrickson
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.
Sherry Siegel
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
Kim Fredrickson
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!
Diana Johnson
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.
Kim Fredrickson
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...
Maureen Lake
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
Kim Fredrickson
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!
Kels Kirkland
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!
Kim Fredrickson
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...
Cheryl Salazar
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.
Kim Fredrickson
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?
Dana
I've recently been diagnosed with PF and was put on oxygen 24/7 about 2 weeks ago. I came across your column while researching ways to cope with adjusting to living on supplemental oxygen. I barely had time to adjust to being diagnosed and now I'm told I'll be wearing a cannula for the rest of my life. The o2 does seem to help my shortness of breath but going out in public is difficult. I find people staring and I feel like I stick out like a sore thumb. I'm not sure how I'll ever get used to the tanks and tubing and constant sounds of the equipment. I know theres no chance of getting off of it but i find myself not fully accepting that im going to need these machines forever. PF is hard enough and the oxygen just adds to it. The only place I feel semi normal is at pulmonary rehab.... because I'm not the only one with oxygen.
Kim Fredrickson
Hi Dana, I totally understand. That is exactly how I felt, having to get used to so much, and feeling so embarrassed out in public. It took me a good 6 months to feel more comfortable. It's a process. Now I don't feel conspicuous in public, but still don't like having to cart oxygen everywhere. Hang in there...I know it is so hard. We're in this together.
Bette Ann Sturrup
I found out that Pulmonary Rehabilitation is where and when you finally find out exactly what your supplemental oxygen requirements are. Mine are so much higher than I knew before but.. with 5 liters continuous flow I can walk as fast as I want and as far as I used to. There is no battery operated portable for that but I was dragging E tanks until I got blessed with finding a liquid oxygen supplier. PF patients need a lot of continuous flow oxygen!
Kim Fredrickson
Hi Bette Ann,
I love how determined you are to stay active! I have liquid oxygen too, and it sure makes a difference. Thanks for sharing :)
U-Kim
Hello Kim
I had diagnosed with Pulmonary fibrosis about 5 years ago and I been using 02 concentrator on and off for last 5 months but I had pneumonia
2 weeks ago we when to ER and stay at ICU for 3 days now I need 02 all the time set for 2 to 3 LMP what is average life expectation,
Thank you
Melinda
This is all great information. I need continuous 8-10 ltrs when walking. Oxygen tanks don’t last long on continuous so I find myself using scooters when going to stores since I can be on 2-3 ltrs continuous when sitting.
I need to find out more about liquid oxygen - is it easy to switch, does insurance cover, does it last longer etc.
B
I'm new to oxygen use as well. Pneumonia in november 2017 and was sent home with oxygen. Prior to that I wondered about my levels and brought a meter home and at times went into the 70's. Daughter commented that my lips turned blue when I coughed, but when you live alone you don't look at those things. January went to pulminologist. My event was even more startling.
Doc- I'm diagnosing you with Interstitial lung disease.
Me- ( looking confused) Can you spell that?
Doc - just google ILD. Now i'm not going to lie to you if it is idiopathic, most don't live 5 years.
I got a second opinion.
I hated carrying around the oxygen, but staying mobile was important. I was so glad when I finally figured out I could take my camel back back pack recently used for hiking and put my small canister in there. I wanted a portable oxygen concentrator but no one helped me figure out how to get one and $2,500 was out of the question.
Here is the clincher. Get up and move, it is important. To move one needs more oxygen. So I'm on the treadmill and doing yoga every day since Sept of last year. A life style change, but I do it with oxygen.
My disease is progressive. I have no idea how fast it will progress, and I have gotten mixed messages about the ideopathic. I just won't believe that right now. I went and had to pay 300 out of pocket with my insurance for a 6 minute walk test. I had sharp pains in my chest and the probe fell off twice. When I returned to the doctor I told them the test was not done right. They pushed me off on the pulminoloigst and said congratulations you don't need oxygen anymore. I told him that test was inacurate, I know what I was feeling and it was so painful. I want to keep exercising but fear doing it without the oxygen, and it only takes one bout of allergy crap and I get set back quickly. So, my question- is the 6 minute walk test the only way a doctor can prescribe oxygen in the US? I thought if i went to pulminary rehab maybe they could somehow insist on it while exercising. Need to plan that, but at $75 a visit 2 x a week for 6 weeks, that is a big chunk of change. Still it is on my list of things to do. Lung biopsy in 6 months. Though I feel that most Pulinary Rehab is probably encouraging people to exercise and I'm all ready doing that. I just need to know certain tricks in bad situations, I suppose. So far medical supply and insurance has not taken away the home concentrator or my canisters. I use home concentrator while exercising and sleeping, I take tank with me everywhere incase I need it. I wish I had bitten the bullet and gotten a portable oxygen concentrator and paid the $$$ when I first got out of the hospital. I also want to travel and never ever want to be without access to 02 again. I can't believe getting a prescription with a progressive lung disease is going to be that difficult. I'm glad these last couple of weeks I have been able to go without it while walking and doing daily activities.Though whenever I bend over everything changes. I was unsure how much was recovering from pneumonia and how much was the decline from the ILD. Yesterday I vacuumed my house without having to dodge the oxygen cord. Only people here will know what a huge milestone that is.
Trying to navigate this. It is so strange to be so young, 57 and wonder what your future holds and what you can do. I can't tell you how very limited I was up until just a few weeks ago. Thanking god for movement and every breath.
So, is the 6 minute walk test the only way a doctor can write the prescription? Will Pulmonary Rehab be any help in determining this?
Kim Fredrickson
Hello, Thanks for sharing your story. So sorry You've had such a hard time getting O2 prescribed. I was diagnosed at 57 too and it was quite a shock. Yes, the six minute walk test is the one they use to prescribe oxygen. What happens at home when you walk for 6 minutes with an oximeter on? I would consider doing this and write down your stats at 1, 2, 3, 4, 5, and 6 mins. Take a picture of each one. If you go below 90 you should be able to get O2. Also, I would consider contacting Inogen (portable oxygen concentrator) and see if you can do a payment plan. I bought mine by putting it on a 0% credit card and paid it off over 18 months. I would encourage you to make this happen so you can take advantage of the time you are able to travel. Enjoy every moment!
Harry Reeves
I used to make jokes about getting a warranty when I was born. Well my doctor found it along with my expiration date. It is not funny now My expiration date is within two years or less. When I meet my creator if their actually is one I will point out that water boarding is a crime. I have pulmonary fibrosis. I guess I really can't complain I did make it 82 very good years. I rescue dogs so I want to go where they go I just hope they have netflix. My best wishes to all of you.
Dana Springer
Excellent information!!
Pauline
Thank you for your information. Very helpful
Dawn Woodworth
Hi! My father found out he has pulmonary fibrosis about a year ago. I am sure he was having a hard time breathing for quite a long time though. He just wouldn't say anything about it. He's 76 years old and other than his lungs, he's very healthy. The problem is, he absolutely will NOT use oxygen therapy. So, he sits and pants all day starving his body of oxygen. He's so stubborn. Says the therapy doesn't make it any better. He's driving my Mom nuts, quite frankly. He naps ALL the time and doesn't want to do ANYTHING. I personally think it's pride that keeps him from using the oxygen. He's a big, tough, bull headed Marine! I don't think he's thinking about what the lack of oxygen is doing now and will do to his body over time. He's extremely difficult to talk to on top of it all. He's always right and always knows better. HA!! My Mom and I are just fit to be tied. Do you have any suggestions? Any help you could offer would be very appreciated.