Grateful for My Cognitive Abilities, Despite Failing Lungs

Charlene Marshall avatar

by Charlene Marshall |

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Many chronic illness patients experience brain fog. Those living with idiopathic pulmonary fibrosis (IPF), a progressive and life-threatening lung condition, are no exception. Due to being chronically under-oxygenated, especially as the disease progresses, many IPF patients find their brain fog prohibitive to important aspects of their life, such as excelling in their careers or managing medications.

I hadn’t been diagnosed with IPF very long when I noticed a friend and fellow patient’s column on brain fog. At that time, I was still in denial that my lungs were plagued by this disease, and wrongfully assumed that if someone was experiencing brain fog, their disease progression must be severe. I simply didn’t realize how frequently this unpleasant side effect occurs.

There is a lot to learn about living with this life-threatening condition, especially when it comes to managing supplemental oxygen, which can be more difficult with brain fog and fatigue. When I first started using supplemental oxygen, I would often forget small but crucial things pertaining to this important medical device, such as packing extra batteries or ensuring the machine is adequately ventilated. I distinctly remember feeling overwhelmed when I started using oxygen, and while I’ve lived with IPF for years now, the brain fog still interferes with my ability to effectively manage my disease at times.

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IPF Didn’t Change My Identity

For those who might not know, IPF progressively hardens a patient’s lungs due to fibrosis development, and breathing becomes impossible, so lung failure is inevitable. This disease has forced me to make a lot of changes to my life that I contested; it’s incredibly difficult to be a young adult who is regularly short of breath and dependent on supplemental oxygen. Despite my lungs failing and the occasional brain fog, I remain grateful for my cognitive abilities.

I was recently invited to be part of a large project with a foundation dedicated to improving the lives of IPF patients. Due to brain fog, I did have concerns about whether I would be able to meet the expectations for this project; however, completing the tasks is still relatively easy for me.

I also recently received a fairly significant promotion at work due in part to my attention to detail and dedication to figuring out effective processes that help our team work more efficiently. In my promotion plan, it was noted that I have identified and closed gaps in our work as well, whether through database changes or process development, both of which are cognition-heavy work. These compliments came as a surprise to me, as I felt as though my efforts at work were no different than my peers. Upon reflection, the compliments mean a great deal to me.

Since my diagnosis, I have occasionally questioned my value as an employee. I never want to be perceived as the “sick” staff member, the cause of extra accommodations, or the staff member whom others have concerns about on a regular basis. Sometimes I worry about having to prove my worth, especially in comparison to my healthy teammates, but I am repeatedly assured this is only a narrative I tell myself and I am valued at my workplace. My employers made that clear following my recent and unexpected promotion.

While IPF is a big part of my life and has taken a lot from me, including many of my physical abilities, it hasn’t taken away everything. While I occasionally struggle with brain fog and forgetfulness, I’m thankful my cognitive abilities remain intact. Specifically, I am grateful for my ability to learn and try new things despite living with this life-threatening lung disease.


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, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.

Comments

Adelaide campbell avatar

Adelaide campbell

Loved your article. Well done! I’m still confused ….. if oxygen is prescribed at 2lpm, should I be using it all the time, or just when my level has dropped? I THINK it’s accepted that I need it for/after exertion, it’s not needed when at rest.
Basically, I’m using it when I need to recover, and that’s all. When the SOB is significant. But when I can simply sit for a while and “catch my breath” should I be using oxygen? By not using it, am I running the risk of affecting my cognitive abilities?
Thank you.

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Charlene Marshall avatar

Charlene Marshall

Hi Adelaide,
Thanks for reading my columns and reaching out via the comments. Glad this article resonated with you! Sorry to hear you're needing to deal with 02, and I wish I could provide you with some answers to your question, however, I'd respectfully like to direct you back to your physician for these questions. My reasoning for this is that there's no real "standard" when it comes to 02 use; everyone is prescribed it based on their need so its really important to know whether or not your doctor wants you to use it at rest and during exertion. They can also explain to you when hypoxia (low 02 levels) can be dangerous. Sorry I can't help more!
Char.

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Brian Patterson avatar

Brian Patterson

Hi Charlene, I am very grateful for the insightful articles you write about IPF and your journey. You never fail to
look on the bright side. Thank you!!

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Charlene Marshall avatar

Charlene Marshall

Thank you so much for your kind words, Brian! It's such a privilege to be able to write for the IPF community. Take good care, and thanks for reading.
Char.

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Paul avatar

Paul

I have a similar concern that Adelaide mentions. What is too much oxygen?

I was diagnosed with severe emphysema in July 2020 and placed on 4 liters of oxygen at night. But only at night and no oxygen during the day. Since then I have also been diagnosed with fibrosis, but not as IPF, since there are supposedly 200 different types of fibrosis. They’re not sure what mine is, only that it has a left lot of scarring in my lungs.

I was having a CT scan every 6 months and my pulmonologist became concerned about a 10mm nodule in my upper right lobe. He ordered a needle biopsy and during the procedure my lung collapsed. After 4 days recovering in the hospital I was released, but I was having a tough time getting back to my energy level before the procedure.

I tried walking a mile everyday to help in my recovery, but after about a month I developed pneumonia and spent another 5 days in the hospital. After I was out of the hospital I’ve never been the same since. I’ve been forced to use oxygen 24/7 and I’ve not been able to do any physical activity, except for helping in the kitchen with dinners or washing the dishes. I use to be able to sit and watch TV and to be able to maintain my ox labels at 95 or better without any supplemental ox, but that is slowly changing. The levels are now down to 92 or so, without any ox. I always thought I as supposed to be at 95 or higher, so that kind of worried me.

I had Zephyr valves installed in my upper left lobe in January, but then had to have them removed in February, as I struggled to maintain my ox levels at 88 without turning up my daytime ox concentrator to 4L or better.

A month after the Zephyr valves were removed I saw a new pulmonologist who now wanted me to maintain my ox levels between 88 to 92. He didn’t want me to try and maintain over 95 any longer, as he felt too much oxygen would cause me to keep too much carbon dioxide in my system, which would be bad for my brain function.

I’ve since dropped down my daily concentrator to 2 Liters and even with that, my ox levels go up to 98 or better. When I see they are at that level. I remove my cannula and just breathe without any ox. I can always maintain my ox level between 88 to 92, but the moment I get up to walk around my ox drops to 85 or below and I need my ox cannula again.

Maybe I’ll feel better staying on the lower levels of ox, as when I’m on the higher levels I do feel a little “brain fog”. Are there other readers of this blog who feel some “brain fog” on too much oxygen.? Are other readers also on ox levels of 88 to 92 and feel that it’s right for them? I know when I drop down below 85 or so I’m going to get weak and dizzy, but if I maintain a level of 90 or so, I feel fine. What about other readers? Thanks for sharing.

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Charlene Marshall avatar

Charlene Marshall

Hi Paul,

Thanks for reading my column and reaching out via the comments. Sounds like you're having a tough time with this cruel disease, I'm so sorry you're dealing with lung problems.

While I'd normally encourage you to circle back to your physician, as only he/she can prescribe oxygen based on your current need; I also understand the benefit of connecting with others who might have similar experiences. Its more likely you'll get replies or can read about similar patient experiences if you post on our PF forums site: https://pulmonaryfibrosisnews.com/forums/ hopefully someone has some insights to share with you.
Take care,
Char.

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Steve Dragoo avatar

Steve Dragoo

Charlene - I can identify with the short-term memory issues. They are happening to me more lately but I changed my hours to match USA business hours and thought that is the problem. Because I am in sales, it is crucial I am alert and quick on my feet and for the past 2 weeks - even though adjusting to being up all night - I haven't done the job I want to for my clients. Makes me want to stop but I just push harder and take a couple of fast breaks in prayer - problem solved, for now...

Stay well,
Steve

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Charlene Marshall avatar

Charlene Marshall

Hello my friend!
Always lovely (and inspiring!) to hear from you -- keep that attitude and commitment going; I have no doubt it is serving you well. Thanks for sharing what works for you and I hope the short-term memory issues resolve for you soon.
Much love,
Char.

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Earl Robinson avatar

Earl Robinson

Adelaida,
As a patient, not a doctor, my understanding is that with IPF you can cause more problems with other organs with too little O2, but like so many of the answers we are given, it all depends on your situation. I would try to keep your O2 level above 88%. If it drops use the parsed lib breathing with deep inhales and slow exhales to get back to where you should be. All the best! Earl

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