The Day I Found Out I Needed Supplemental Oxygen

[gerald]

I found this easy to relate to!!

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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?

pulmonaryfibrosisnews.com/2017/03/21/the-day-i-needed-oxygen/

[jarca]

i can relate also.
I was just "put on 02"wih no real instructions or information how when etc---it was groups like this that taught me so much.
i was told to wear 2LPM when i was sleeping or active---that was in 2010---a lot has changed & i have learned a lot (i've also forgotten a lot).

When i cared for my mother & she was put on 02, I was told to by the home health care people to get an oximeter & to make sure she didn't drop below 90% --- I know people on 02 that don't own an oximeter & i wonder how they do it (my o2 has always jumped around with what activity i am doing & i need to adjust my 02 accordingly)

i wheeled my mother to appointments hauling that big E tank on wheels---it wasn't until i was put on 02 that the company came out & showed me all the different size tanks & what "options" i had.

It seems to me when they put someone on 02, there should be some kind of "lessons" on how to best use it. (and caretakers should be taught how to use & care for the 02 machine ----i didn't even know that i should change my mothers canula & she wore the same one for 5 months!!!!)

good article!

[gerald]

Yes, when I saw that write up it hit home with me!    I am still learning.     Because I could not get a clear explanation of why I needed the oxygen I refused to oxygen tanks and bought the Portable concentrator for convenience.  It was still some time before I broke down and actually used it to any degree.

[ozboy]

 My Journal...Abbreviated Version..

When I was rushed to Emergency 3 days after leaving hospital after a NIV Bi-Pap in July 2016, The weekend Doctors treated me for a possible infection, that was dropping my Oxygen Saturation below 88%.My previous admittance was for Hypoxia....The X-Ray showed a small amount of an unknown abnormality in my lungs which they ignored......

I was left in a 4 bed ward without any further investigation or culture test, as to what this ''New'' infection was. My requests for Oxygen was denied by the ward nurses by ''Selective Quoting'' both my Pulmo n GP in order to defend their use of the Optiflow and with holding my Alprazolam that shut my body down for 4 hours, only to be revived at midnight by the nurse doing the vital stat round....My sats were on 72% and the Opti was immediately removed and from then on, i was allowed oxygen and my anxiety meds. But the damage had been done already...

Then they discovered I had HAP Influenza A and from there I was immediately put into isolation and transfered to another Rehab/Hospital. As I could barely keep my saturation above 85%.....From there I was told about Oxygen Therapy and sent home with all the temporary equipment, Oxygen Concentrator and 4 Portables, to be assessed again a month later by my own Pulmonary Doctor...

On Dec.20th. I was again admitted for NIV Bi-Pap and After 5 Hours they did a third and final ABG, which was a little concern to my treating doctor as Co2 was a bit Higher again to 72mmHg. After consulting the Senior Boss Doctor in the Observation Ward, they released me on condition I was to return immediately if I felt ''Physically Worse''...Also I was told to not worry if Resting Saturation was higher than 94% because of my condition but if using Supplement Oxygen on Activity, it was crucial to stay under 94%..

Jan 3rd. 2017..____Spent almost 2 hours with my Pulmo at Monash....Started with a PFT and surprisingly my Fev.1 has climbed back to 18% after dropping 4% when I had the Influenza Virus last admission..Been put on 6 months 250mg Clairithromycin to avoid infections.

He said they were no longer concentrating on my Fev.1 %%’s.... but my TLC (Total Lung Vol) and RV (Residual Volume) Which he said has improved better than the last 2 PFT's (So no idea till I see it written up as it was too much to take in when was explaining but made sense)... 2 months after my hospital stay, my resting sats are now between 92-94% but it can climb to 98% at times and that is exactly what he witnessed sitting in his office.

....This was not right so he feels my saturation is erratic and we did a 6MWT but with the oximeter taped to my forehead and I had to walk as quick as i could......I did the walk but needed to rest 3 times as i was totally breathless yet saturation read 92%....So do not qualify for State Funding.

HOW I FEEL ABOUT OXYGEN:
I am getting just as confused with this oxygen level thingy.....When i left hospital with oxygen maintenance on discharge...I was told to keep my saturation between 88 - 93% which was fine if i sat still and did nothing but still had minimum SOB (At Room Air) So i got oximeter paranoid....as i improved so did my saturation and without oxygen i was going up to around 94 - 95% .....For most people this would be great news but as i am a retainer, the higher oxygen meant higher carbon dioxide, that at my stage of the disease is getting very hard to ''blow off'' by PLB so i could once again end up on hospital Bi-Pap like the last one that took 7 hours to balance both gasses.

So now I am told to use Oxygen by my own ''Gut feel'' and  that periods of high saturation will not bring on a Hypoxic Situation, as long as the saturation stays at.. 88% - 94% when at rest and not using it....

I am strong enough to now use the Carry Bag over Shoulder and never use the Trolley.

[joany]

I appreciat the article, gerald.  Since having pneumonia LAST February, everything I thought I knew, is incorrect  I'm usually pretty smart about most things once I put my mind into a learning mode.   I'm still trying to find a doctor who communicates.   Today I'm just smarting after discovering that with an initial appointment accompanied by a non-professional communicator phys., I can't make a new appointment next door to a doctor who took a college course in Public Speaking (same floor rule).  Looks like I'll have to locate a doctor in another town because I desparately need understanding about "where are we going with this - a day at a time". 

"Take 2 pills and call me in 6 months is getting on my nerves."  But it appears that I'm not alone...

[gnott]

I had severe "smoker's cough" outbreaks. Been to a GP a few times and was given a 'rescue inhaler' ( Albuterol ) and told to quick smoking (which I had been working on).

Suggested I might have Chronic Bronchitis. (As that only means I had coughing spells for a couple of months out of a year - so was dead on. Smile)

Later I had a 'silent heart attack' - where one doesn't have any pain or basic symptoms except loss of breath. I had an Angioplasty. When I woke up, an O2 with carrier (M-7) was lying on a chair in my room. No one knew a thing about it except I was to take it home with me. So I started to - in my lap. When the nurse pushing the chair noted my O2 was not hooked up. She put the cannula on, did something and I left breathing air. It ran out when I got home and put it aside. 

The next day, a contract respiratory therapist and a delivery person from my provider showed up with all the equipment (new bottles, regulator, nebulizer, window signs, ...) - I received a quick home inspection; a quick review of all my new toys;  told to keep 'it' on 2 lpm, and within 30 minutes they left.

Everything I know or learned about Oxygen Therapy I learned from Rehab or online. My first rehab was a tad sketchy because they (Doctor/Hospital) had a choice - cardio or pulmonary - I was placed in the former. My first months experience online was rough because I didn't know the language - couldn't tell a sales pitch, opinion, advice, anecdotal, myth, guesses, was fact or fiction (or something in-between). Still not easy. Grin.

[joany]

It's a wonder that so many of us are still alive - must be something in the air.

[gerald]

When I look back to the start, from the  intiial diagnosis, I am amazed how little information I was given.  But I suspect the medical profession did not know very much.   

Joany, It is surprising that we have survived!!!       I still feel that there is so much hidden behind the curtain if we only knew the questions to ask!      I have had to have a lot to do with doctors etc over the past 6 months and I am not sure that they know very much.    If you ask a question, quite often, the answer comes right out of a text book and has long been proven to not be the total answer.

At least with the internet and places like this we can share information and learn from each other!

[sharon]

I was never really told about the use of it either. I was told to use with activity. I keep an eye on my oxymeter when doing little things in the house, just to monitor it myself. Funny how they do not explain things so you can understand when to use it.

[judi]

I had surgery for lung cancer and my lung tore and I went from having mild COPD to severe and needing O2.  I was just told to use 2L for sleep and exercise.  I went for around 4 years without an oxymeter and when I finally got one I discovered I had been desaturating all that time on 2L.  I had some walk tests during that time but my pulmo never suggested I use more.  I have increased it myself.