Are These PF Symptoms Annoying to Others?

Charlene Marshall avatar

by Charlene Marshall |

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One of my biggest fears is being a nuisance to others. As much as possible, I try not to rely on anyone and have learned to become stubbornly independent. This is why living with idiopathic pulmonary fibrosis (IPF), a debilitating and life-threatening lung disease, has been so hard on me: My ability to do things on my own has been threatened.

From a young age I considered myself independent and competitive. I always wanted to keep up with my older brothers and do whatever they could, despite our drastic age differences. This often got me into trouble, but it also equipped me with the confidence to move to university at a young age in a city far from home. It also enabled me to feel safe while traveling on my own to new destinations all over the world.

I never felt I had to rely on others through my late teens and early adulthood. One could argue that this was partly because I didn’t want to inconvenience others or be a nuisance.

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For those who aren’t aware, a persistent dry cough is arguably the most common symptom of IPF. I’ve heard it described as a “tickle” in the lungs, an itch that isn’t scratched no matter how much you cough. This particular IPF symptom was difficult to manage during the COVID-19 pandemic, when having a cough was stigmatized because others perceived you as having the virus.

When I was diagnosed with IPF nearly six years ago, my doctors told me about the chronic cough I would develop. For the first few years afterward, I didn’t have the cough and eventually pondered whether my IPF diagnosis was accurate. Unfortunately, I developed the dry cough a few years ago, and it’s rapidly getting worse.

It seems that no matter how hard I try, I can no longer suppress my cough. Last week I tried to do this during a meeting, and I ended up having tears pool in my eyes and trickle down my cheeks. Someone asked me why I was crying, and I told them I wasn’t; I was trying to suppress my cough. Even subconsciously, I was trying to avoid annoying others by holding in this pesky IPF symptom.

On top of the cough, I also worry about the following PF symptoms being bothersome to others.

Throat clearing

Similar to the chronic cough, clearing my throat has become persistent over the years. However, it’s become markedly worse since my second round with COVID-19, making me self-conscious. Despite feeling a physiological need to do it, even I am getting annoyed with the frequency, so I’m sure others are as well.

Since the omicron variant is an upper respiratory infection, I likely have some lingering nasal congestion that is causing me to clear my throat, in addition to my lung disease. Regardless of the reason, this symptom can be a nuisance to others.

Shortness of breath

While most people are understanding when they learn that my lungs are failing as a result of the scar tissue (fibrosis) building up, they often forget that this causes significant shortness of breath during physical activity.

It means that I slow people down if we’re taking a walk together, for example, or I’m forced to stop talking in certain social situations because I need to catch my breath. When others haven’t experienced this, it’s difficult for them to understand what being short of breath feels like, and it can easily be perceived as an annoyance.

Medication management

Two anti-fibrotic medications on the market slow down the progression of fibrosis in the lungs. The one I am on requires me to eat and drink certain things when I take it to avoid gastrointestinal symptoms. I also have to take it on a consistent schedule. As a result, I often feel I’m disrupting others’ plans when I need to stop what we’re doing to eat a meal due to my medication schedule, or find a particular food and drink to take with it so it doesn’t upset my stomach.

What symptoms of PF cause you to feel like you’re a nuisance to others? Please offer your comments below.


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

Carol Dyck avatar

Carol Dyck

Thanks Charlene for the timely formation on your coughing and throat clearing from the effects of IPF. Hearing how others cope with these annoying occurrences is so helpful . I was diagnosed in 2014 with IPF. I do clear my throat a lot, but mine is more from my nasal, but also from IPF as well. I do have a cough, but not a constant tickle and do go for many hours without coughing.

My most disturbing issue with this disease is the extreme gagging and the irruption of mucus which occurs about every 4 to 5 days or less. It’s horrible and I always know when it is going to happen because beforehand I will get a nauseous sensation.

I am on OFEV and managing it very well.

Carol

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Charlene Marshall avatar

Charlene Marshall

Hi Carol,

Thanks for reading my column and for reaching out via the comments. I'm glad this piece resonated with you, though sorry to hear you also deal with these annoying occurrences. I was thinking how others might perceive my constant throat clearing or cough, especially since COVID, and thought others would likely be able to relate to my feelings.
I'm glad you're managing the OFEV well! Thanks for writing and take care.
Charlene.

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Alan Gould avatar

Alan Gould

My family won't and don't understand my meal regimen. It causes me to stress and more stress. My medication causes me stress.All I ask them....consider me when I have to eat. God Bless all IPF sufferers

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Charlene Marshall avatar

Charlene Marshall

Hi Alan,

Thanks for reading my column and connecting via the comments. Sorry to hear your family isn't understanding of your meal time needs, especially as it pertains to your medications. That must be really frustrating for you! Please continue putting your needs first, and putting up the good fight. Take care.
Char.

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Kathleen Ryan avatar

Kathleen Ryan

Charlene, this is so spot on! I know the constant cough is annoying to everyone. I constantly feel the need to apologize because of it. The inability to keep up with others is a constant battle. My son is so wonderful with this aspect, he goes walking with me and recognizes when I need to sit, but no much with everyone else. My high school friend came to visit last fall, and I took her site seeing . She was literally so far ahead of me I couldn't see her. Then panic sat in when I realized I have no one if I should fall. I don't want others to stop what they're doing because of my illness, and it's so difficult to find a middle point where everyone has a good and relaxing time, I stay in more and more now, and that's not a good answer either, Thank you for bringing up this topic.

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Pauline Korol avatar

Pauline Korol

I am very fortunate in having a very understanding family. My sister passed away from IPF related issues, so they are aware of what the disease entails. I also suffer side effects from the medication so I am often not able to go out and have to stay close to home. Staying positive and exercising is helping. I can relate to Carol Dyck as I have the same issues as her. My sympathies Carol.

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Charlene Marshall avatar

Charlene Marshall

Thanks for writing Pauline, and sharing a bit about your experience - sorry you're dealing with the disease too, but having the knowledge of it definitely helps in the management of IPF. Take care and thanks for reading.
Char.

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Charlene Marshall avatar

Charlene Marshall

Hi Kathleen,

Thanks so much for reading my column and for your kind words via the comments. Sorry to hear you can relate to this experience, but its hard for us to avoid feeling like an annoyance to others, isn't it? I also feel the constant need to apologize. Sorry to hear about your experience with your friend, it's very distressing when we feel as though we might be alone if something were to happen with our lungs. I appreciate your comments, and wish I had a better answer for you, but do know you aren't alone.
Take care,
Char.

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Karen Bowen avatar

Karen Bowen

WOW! I am so happy to hear of you successful management of your IPF! I am new to this - I was diagnosed just late December with IPF after a horrible bout with covid pneumonia. My CT showed as light ground glass opacity in October and when I got hit with the covid pneumonia, it advanced so fast the by late December my lungs were scared & I was diagnosed with IPF. Coughing - to the point I will gag - and the continuous shortness of breath are my worst enemies. I've been on 4 liters of oxygen since December & wish like heck I could ween off. Dr. informs me it's just time, a l-o-n-g time to recover.

Pls share with me what you do to make this more tolerable. I am {was} very independent, love to travel. Now I can't get near my gas stove (oh, did I say I like to cook?) I can't clean without my damn numbers plummeting into the high 70's & it takes me an entire day to recoup from a shower..... Tell me this is going to get better and not that I just have to get used to it! Guess snorkeling is out of the question, aye?

Thanks kindly!! Karen

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Charlene Marshall avatar

Charlene Marshall

Hi Karen,

Thanks for reading my columns and reaching out via the comments! COVID is terrible, and I am so sorry to hear of your experience with COVID pneumonia and subsequently IPF, that totally sucks. I wish people would take it more seriously! It does take a lot time to recover for sure, and with some pulmonary rehabilitation, you may be able to lessen your 02 dependency. Not sure if your doctor has ever mentioned a pulmonary rehab program to you? It's worth asking him/her if they haven't.

I can't say it gets easier, but you do learn to manage it in ways that makes this a little better. Once your 02 dependency reduces (hopefully!) you'll be able to do a bit more or adjust to your "new normal"... easy? Absolutely not, but possible, yes. I have still traveled with oxygen, flown and everything... its a little more work, but certainly possible and when I am at home on my 02 concentrator (not my tank) I keep a 30ft cord and can still cook, just be careful not to trip on the cord. If you're interested, consider joining the PF News forums: https://pulmonaryfibrosisnews.com/forums/ ... its a place filled with wonderful folks who can help support you through this, they're all living with IPF/PF too. Lots of really good information on that site too! Oh, I also snorkelled in Hawaii in 2019 (diagnosed in 2016)!
Take care,
Char.

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Ravi kumar avatar

Ravi kumar

Hallo,

My question is for Charlene. My mother was diagnosed with IPF 2 years back. She is currently on OFEV.
I hate to see her suffer because of this disease.
Do you have any experience with herbal medicine? Like Wei Institute ....or MALVA-H ...
Have you tried any of these treatments or do you know someone who has tried these?
Please let me know.
Thanks

Reply
Charlene Marshall avatar

Charlene Marshall

Hi Ravi,
Thanks for writing, though really sorry to hear your Mother is dealing with this cruel lung disease. Personally, I don't have any experience with herbal remedies such as Wei. I've not tried them due to financial barriers, and I really do believe in the science behind western medicine, but I know lots of people who have tried a more herbal approach. I can't share who exactly (without also breaking confidentiality) but if you check out our forums and search Wei, you'll get lots of information: https://pulmonaryfibrosisnews.com/forums/

Char.

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