Processing a Scary PF Experience at the Grocery Store
Last week I wrote about how difficult it is to face reality as my pulmonary fibrosis progresses. This process has involved letting go of control as I face how little I can do now. The most striking example of my reduced capabilities is a scary experience I had three weeks ago.
As my oxygen needs have increased, I’ve been leaving home less often, usually three to four times a week. I decided to go to the grocery store and get a few things; I like browsing the aisles and choosing various items. My usual routine is to walk slowly with an oximeter on my finger to ensure my oxygen saturation stays above 90 percent. I had my portable liquid oxygen “stroller” with me supplying up to 15 liters per minute (lpm) which has been fine in the past.
I became exhausted and breathless after walking for a few minutes. I sat down on the edge of a refrigerator case until my oxygen levels passed 90 percent again. Then, I walked a little more and experienced a reoccurrence of the fatigue and breathlessness, but worse this time. There was no problem with my portable stroller; the oxygen was coming out at the same rate. However, I needed a lot more oxygen when walking than I had the previous day.
I sat down on a chair outside the nearby pharmacy and did some slow breathing to get my breathing and coughing under control. It was such a scary experience that I considered calling 911. However, I decided to sit for 15 minutes and then walk to my car. I asked a checker to put my food back and I made my way to my car, praying I would get there OK. I did!
Luckily, I didn’t have far to go as my car was in the first available disabled spot. After sitting in my car for another 20 minutes, I slowly drove the half-mile home.
A very frightening experience
This was the most scared I’ve been since being diagnosed with PF. I called my doctor and he fit me in for an appointment the next day. I wasn’t sick, but I now need even more oxygen than I did before — 10 lpm sitting and 22 lpm walking.
I’m blessed to have liquid oxygen; the portable “strollers” deliver 15 lpm. I can put two of them in a cart hooked up with a “Y” connector to help me walk around. The cart also has a pull-down chair I can sit on if I need to rest. I recently bought this trolley and thought it might be helpful to you too.
The cart I use to carry my portable oxygen is hooked up with a “Y” connector to provide higher levels of oxygen. Courtesy of Kim Fredrickson.
It’s been quite an adjustment
I’m not used to my new normal, which has made me step back and face my physical limitations.
I’ve found this recent downturn in my functioning harder to process because it was so unusual. I’ve experienced two other significant declines since my diagnosis four and a half years ago. The first one happened when I wore myself out helping my husband after he had a hip replacement two years ago. The second one happened two months ago when we took a trip to my father’s memorial service.
My scary experience at the grocery store was different. I was doing something that was part of my routine and it was an activity that I was fine with a week before. It didn’t happen because of an oxygen malfunction, and I wasn’t sick. My body suddenly needed significantly more oxygen when walking. I asked my doctor if he knew why it happened. He said, “You have a progressive lung disease that worsens over time.” I was hoping for a better answer than that, but he’s probably correct.
Much more careful
I’m being even more careful than before about doing everyday things. It saddens me to do less and struggle more. I need to protect my lungs and conserve my energy. I’m examining every decision by asking myself, “Is this wise to do?” I strive to keep learning and improving how I care for myself and my ever-changing struggles with PF.
I’d love to hear from you!
Have you had any sudden downturns in your health? How have you handled having to adjust as your PF progresses? Do you have a scary experience with PF you’d like to share?
Please leave a comment below and share with those who could benefit via email or on social media.
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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
MAGGIE GORDON
Hello, Thank you for sharing your story. I too have IPF which is progressing slowly but surely. When I was diagnosed I was on 5.00 and five years later I am now on 8.00. I have a home POC which delivers the oxygen level that I need, 8.00 with a continuous flow. I use the Inogen G3 which the highest 5.00 on pulse. My oxygen saturation will drop to lower than 73 while walking and 90 while sitting. This helps very little but I cannot find a POC that delivers higher than 5.00 pulse. I get out of breath very quickly while walking and my heart is pounding out of my chest.The only option I have right now is pulling an oxygen tank behind me. Although it delivers the oxygen that I need but I am unable to do very much using it, and I'm always afraid that I will run out of oxygen plus having to lug it with me so I have to have someone with me if I got out. I am at my wits end trying to find a POC that will deliver more than 5.
Dilsher Gill
I also have an Inogen G3 which became too little Oxygen for me then I bought a Sequal
Eclipse which goes up to 9 pulse and 3 Liters continuous. It weighs about 18 lbs and comes with a stroller. Its battery lasts for a few minutes over an hour. I use both the POC's together to walk around. I use only the pulse option, it seems to give me more Oxygen at 9 than continuous 3 liters. You could also explore liquid Oxygen. I have not done that yet.
carol gerstein
Sequel equinox has pulse 9 and 3 continuous flow. I have it and it works fine
Bob Carlson
Maggie,
Currently I don't think you will find portable oxygen concentrators (POC) available with pulse flow "equivalent continuous flow" capacity above 5 or 6 LPM. If you are considering another unit make sure and get a copy of the manufacturers specifications. Many of the advertisements(and sales people) are deceptive in that it does not include the flow rates (actual and equivalent) at each of the device's settings. For example, your G3 has a maximum continuous flow capacity of approximately (1) LPM. If they have implied(?) that a setting of 5 is equivalent to 5 LPM continuous flow their "conserver ratio" is 5:1. Different manufacturers devices have different "conserver ratios" they can vary from about 2 to 6. It is the manufacturer's attempt to make the most efficient use of the available continuous flow oxygen. "conserver" oxygen regulators (pulse) are also available for use with oxygen tanks.
I suggest you consider the use of liquid oxygen (highly concentrated oxygen) which will permit high flow (up to 15 LPM) along with extended service time. It can however be difficult for home users to obtain liquid oxygen for various reasons. It is commonly used at hospitals and clinics today and used to be commonly used and is still used by some home users today.
Another consideration is the use of a "conserver or pulse" type regulator with oxygen tanks. There are numerous pulse regulators available in the 0-15 equivalent LPM. There are numerous oxygen cylinder sizes available. I have a G3 and oxygen tanks. I use the G3 for longer auto trips because I can charge it in the car. I have numerous cylinder sizes and use a conserving regulator. For trips around town i.e. grocery shopping, eating out etc. I prefer to use cylinders. I select the size cylinder that will last the expected trip duration. I can always carry a spare tank in the car. One thing I do not like about my G3 is that it makes quite a bit of noise.
Bob
frances gilbert
my husband has similar problems with oxygen, fatigue, and desaturation .He seldoms goes to the store anymore and when he does it takes a toll on him.He is on esbrit and seems to be stable according to his lung function tests. mrs gordon we have looked all over for a poc to deliver more than 5 liters we do not think it exists. my husband attends pulmonary rehab twice a week and will be there until we can find a place that he can have 8-15 l to work out. i am a nurse and i watch him closely . our life has changed in the last year and continues. He can be forgetful and i see the man i married 47 years ago fade. he is a fighter and the love of my life.
Ted Fecteau
Kim, I am very sorry to read your story realising you seem to be having to reduce your normal activities sooner than expected. Heartfelt empathy for you. But thank you for your story and for your book. You are helping me to face and accept my own prognosis. I am only 18 months post diagnosis of my pulmonary fibrosis disease (NSIP) but I have learned so much. Your experiences and stories of others, though different but similar to my own, help me answer the question, “are we there yet?” My answer is “no, I have much more life to experience yet”. Thank you for helping me appreciate what I can thankfully still do instead of only focusing on what I no longer can. May you too keep a focus on what you can still do and can still appreciate, enjoying every breath.
Dave Wilkerson
I’m knew at this sight but Iread about3 of the post and I realized my progression has changed I’m starting to require more oxygen.I use to sleep with 1 1/2ltr now I’m up to 3,moving Around 5ltr,I have this ringing n my ears that’s killing me it just won’t go away,24/7 I tell you it’s tough makes you want to through n the towel.I love my family I love life,so I try n stay strong, but I tell u this disease is tough I wouldn’t wish it on a dog.I have days now where it takes me 12hrs in the bed just to get enough strength to get up eat n do some chores don’t like Nursing homes.
Jo Ann Whitfield
Thank you for your information. I love the cart you use for your oxygen .I have ordered one ,it is just what I have been needing. My o2 needs have started changing and I am using O2 tanks now. With the cart I can use a larger tank and not have to worry about running out so soon. Thank you God Bless
Ron Johnson
Kim,
Prayers for you. You have helped so many people, may the Lord bless you with extended, happy times.
Have you been following the discussion regrading laser therapy for IPF? It is a very interesting discussion. I plan to try it soon.
Ron
Rosemary lee
You may need to go to a grocery that has scooters & put your oxygen in the basket, eventually that’s what worked for me.
That was then this is now, now my oxygen demand is >6L at complete rest and goes up to 15L with one step to the bedside commode and transfer one step back to bed.
Last time I was at a grocery was maybe October w my husband used scooter to get my flu & pneumonia shots.
Completely homebound now.
Bless you best wishes.