Do These Symptoms Mean My Disease Is Worsening?
Living with a chronic illness is not for the faint of heart. In addition to the physical and emotional aspects of having a life-threatening lung disease like idiopathic pulmonary fibrosis (IPF), there are also many mental challenges. As patients, we’re often forced to face our fears, especially during acute events like an exacerbation or as our disease worsens.
For the most part, the fears I have about IPF now are different from when I was diagnosed in 2016. Back then, I was fearful of having to use supplemental oxygen, developing a chronic cough, or being short of breath. I have now experienced each of those things, and with time I have learned to navigate them, causing my fears to dissipate. The physical aspects of IPF have become a lot more manageable for me than the mental ones.
One fear that has been fairly consistent throughout my seven-year journey with IPF is that the disease will rapidly progress. Unfortunately, since I’ve begun interacting with fellow patients in the pulmonary fibrosis community, I’ve seen what disease progression looks like. I’ve witnessed how cruel IPF can be and what it does to patients and their caregivers as it worsens.
I have been experiencing unusual symptoms in the past few months and fear it may be because my IPF is worsening. Thankfully, I have a community to rely upon to better understand what symptoms might indicate disease progression.
I’m curious to hear from other patients whether you have experienced the following as your IPF worsened:
Sensitivity to smoke
In recent years, inhaling secondhand smoke has been problematic for me and occasionally even required a trip to the emergency room. While unpleasant, I didn’t always need a breathing treatment to open my airways and relieve the cough it triggered. But now I do.
Since getting COVID-19 for a second time, my lungs no longer tolerate secondhand smoke at all. Each time I’ve accidentally inhaled it, I’ve ended up in the ER on the verge of a respiratory crisis. Not only does it trigger a cough, but I also feel a burning sensation and heaviness deep in my lungs that takes time to subside. I can’t help but wonder if getting COVID-19 a second time increased the sensitivity of my lungs to foreign substances or smells, such as secondhand smoke. I also wonder if this intolerance is just disease progression.
Wheezing with exertion
Most patients with IPF experience dyspnea, or shortness of breath, with physical exertion, myself included. In the past few months, it’s been increasingly obvious when I am exerted because I can hear myself wheezing when I try to catch my breath. This doesn’t come and go, but rather is constant, which leads me to believe it’s not an infection or a virus working its way through my lungs. This symptom is on a list of questions I must speak with my pulmonologist about, and I suspect he may tell me that it means my lungs are worsening.
Fatigue
When patients are chronically underoxygenated, their vital organs don’t get enough oxygen-rich blood, which causes physical fatigue. Until recently, I had strategies to help me combat fatigue, such as wearing my supplemental oxygen when I had important meetings or social events, prioritizing time for power naps, or asking for help with physical tasks to preserve my energy. I have noticed in the last several months that these strategies are becoming a lot less effective, and I am often unable to push through it; I simply must give in to the fatigue. To me, this inability to combat the fatigue is an indicator that my body isn’t as healthy as it once was, even in the early days of living with IPF.
Headaches
The brain is one of those vital organs that doesn’t get enough oxygen-rich blood when a patient with IPF is underoxygenated, which can cause things like brain fog or memory lapses. I would guess that headaches are probably due to the brain not getting enough oxygen. I have been experiencing an increase in headaches lately.
I have been intentional about tracking these headaches, as this symptom can be attributed to many different things. However, my headaches almost always improve, albeit only slightly sometimes, when I put on my supplemental oxygen. This leads me to believe that my lung function is worsening and I need more oxygen as a result.
Have you experienced any of these symptoms? If so, were they indicators of your IPF worsening? Please share in the 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.
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Comments
George Chrismon
How have you learned to control your cough and shortness of breath? Approximately how much do you wear your oxygen during the day. Until the first of the year, I didn't really wear my oxygen that much maybe 2-3 hrs. each day. Always sleep with it. Recently I am having to wear it pretty much around the clock. Was diagnosed eight years ago,. I am 81.
Jean Bordu
Dear Charlene,
Thanks for your insightful postings and sharing your thoughts on IPF. Your insights are very helpful.
As to second hand smoke causing you problem in recent times, it is possible your body has always had an aversion to second hand smoke. Now your body is manifesting its reaction.
I suggest as time goes by and our disease progresses, we need to determine what additional measures we need to take to avoid experiencing exacerbation.
The measures that worked for us a year ago, need to be reassessed to address the reality of our current condition.
Best wishes,
Jean Bordu
Carmel Benjamin
I am 90 years old and live in Melbourne Australia. I was diagnosed with IPF in 1921 and am pleased to receive your news publication. Thank you.
Brenda Robertson
I have been diagnosed for 3 years. I am on 02 at 7 liters. Before IPF, I never had headaches. Now, every day and the brain fog is so disruptive, forgetting what I’m saying or what I was doing. Definitely feel the IPF is getting worse!
Darlene Cochran
I find that determining what is a symptom of worsening IPF and something else is not easy! So, I keep a log, not neat and tidy, of comments by date when I feel something off. I also note if anything different is happening at the same time. As the symptom eases or grows I can track it a bit and find an answer or if not take it to the Dr. to review. I have become selfish in myself protective mode. I am 82 and i avoid at all costs things that I know trigger symptoms or discomfort for my lungs. No one can manage what happens to you except you, so I take that as job #1. Family and friends understand and as to the rest of the world, well they can live their lives and I must choose mine. As to symptoms, I use cough drops, a mild allergy medication daily and when needed an inhaler/nebulizer. I have learned to not take large bites or sips of anything, smaller is easier and does not trigger the choke/cough sensation. I am cautious with items that contain vinegar, citrus juice, spices and other foods or drinks that can make my throat and bronchial area sensitive. I do not use heavily scented anything as they trigger a reaction in my nose, throat and larynx. So, no pine scented sprays etc. I just learn as I go, it annoys my breathing mechanism then once is enough and it is on the do not use/buy/try list. Learning and accepting change now is a way of life but if I pay attention then the quality is much better. I used to just let it be and coped with the consequences, now I am proactive in avoiding and limiting those things that I know create a problem for me. It is best to prevent when you can and if you explain to those you are with, they will get on board. Treat yourself as though you are a bit fragile, because with IPF we are :) !
charlene beck
i am a part of a copay assistance program as I couldnt afford Ofev w out this helping program. what happens when the "money" runs out for the amount allotted for my RX.. can you help. Chyna B age 63 dx 2 yrs ago and on meds. please help
Steve Dragoo
@Charlene-Marshall
Hi Charlene,
First, you are not alone.
After my deadly exacerbation almost 2 years ago, I had a hypersensitivity to any fake (chemical) smells and the faintest hint of an outdoor fire in the distance. The chemical sensitivity has lessened but not the smoke.
Wheezing is rare.
Not much fatigue yet but I do wear out faster and can't walk as far as I could even a few months ago.
I do get minor headaches especially when I take NAC almost daily. When I am tired I can get a headache but laying in bed with a computer tray table gives me better recovery than even sitting in a comfortable chair.
The supplement routine I do daily has helped mitigate my symptoms many times.
Stay well...
Steve
Gloria Vogel
Bless you, I think you meant you were diagnosed with IPF in 2021, not 1921! I agree with you, I have learned much from this website and am glad it's available to those likecus who suffer from this nasty disease. Good luck to you down there in Australia!
John Kevin Murphy
I have been reading Charlene's words from 2019 when i came back to France ,i am on oxegen 18 hours a day but some days i only do 8 or 10 i check my blood oxegen and it's adout 95, and my pulmonologist stoped Esbriet tabs must be 3 mouths ago .I did not think i would get to this stage.I wish it was posible to translate the pages to French then i could give them to the pulmo. My history reads 7 years befor got bladder cancer had B C G treatment worked second time yes i said i am a winner then i had heart atack 4 stents went in it's ok winner encore,IPF next but it looks like it's better than it was, i now take zinc actifs this found on the pages on this blog i think thats what it is called, i'm 75 so i am not savoir with moden words . There going to find a quere in not so long.I live in a city on the outskirts don't go near smokers and fumes ,good luck to you all Kevin.
Jill Wilson
Hi, I'm a Canadian 68 year old woman, diagnosed in 2020 after a bout of pneumonia (1st time in my life) with IPF. I experience shortness of breath when exerting myself but more often that that I just feel tired and run out of energy to do something. I'm looking for a place to talk to others about the changes that occur as the disease progresses.
Peggy Thurston
I was diagnosed with fibrosis in my lungs in 2021. I am 86 and don't know what I have to look forward to. Some days I need my oxygen and other days I don't.
Elle Martins
Well my story is the following the docto-stop, I have no energy the clubbing in my fingers has gotten worse. I vomit constantly bs of GRED.r who is also a Pulmonologist never mentioned not had any consideration that I already had scarring on my left lung. Because, I am extremely cautious with people, I decided it was time to ask the Radiologist for a copy of the results of my CT Scan which was done on 12/12/2020. Literally and verbally, I was told on 01/19/2021 that I had pulmonary fibrosis and to "not freak out." What did hs and she because it's one doctor and then I had an A.R.N Well sadly for me I have worsened I would say way too much. I recently fell again because I had lost oxygen in my brain and tore my meniscus and in two other areas of my knee. I have fractured my nose. I have an excruciating exacerbation. I cough non stop for hours causing unbearable pain in my lungs. At times my lungs feel hot then it feels frozen, don't know what that is. I cannot get oxygen because I don't have Medicare. I used to be able to go for a drive not anymore. All those symptoms you have mentioned, I have them plus more. Yes, headaches also.
William Mattila
Am now on oxy2 50/50. Hard to keep concertor running in car. My doctor has moved twice in a yr. His staff sucks at service. Just a few roadblocks. Even oxygen technician is bossy and won’t listen , see at this point I need to find new pulmonary doctor. Any suggestions at how to find a good one.?WmMattila
Arjun D Tuteja
I am 85 years old and was diagnosed with IPF over a year ago. My main problem so far is persistent cough, which gets worse as I speak. I am not taking OFEV or Esbriet because of side effects. From Internet, I have come across Wei Institute, which claim that with Chinese Herbal based concoctions, they can cure this condition.
Does anybody have any positive/negative/no effect experiences?
Thanks
Regina Bolyard
I was dx’d with IPF in December of 2019. But I have had symptoms of coughing off and on for about 18 years. I began noticing sensitivity to fragrance and cleaning chemicals 15 years ago, and a high sensitivity to smoke more recently. Two months after my lung biopsy, a fire in my building triggered inflammation in my lungs. I lost 10% of my lung function (permanently) and was on prednisone for a while to alleviate the reaction to the smoke. Since then my airways have become increasingly reactive to smoke.
Cannabis is legal in my home state (USA), and my neighbors often partake inside the apartment building. I can’t see the smoke, but I can smell it. The burning sensation this insidious second hand smoke causes is very painful, and the inflammation doesn’t abate without steroids. (In this situation, Benzonatate is outstanding in relieving cough and pain, for me anyway). I am getting more sensitive to all smoke. Cigarette and wood smoke are also triggering. Each significant exposure to smoke has been followed by a decline in lung function. The most recent was a 14% loss. Notes by my pulmonologist after that checkup mentioned “asthmatic features” with IPF (which simply means reactive airways). I now use a steroid inhaler regularly. Until recently, I was also on mycophenolate to reduce dependence on prednisone. I washed out of that in hopes of getting into a clinical trial.
Reactivity to smoke has made camping complicated. Brain fog has become a daily issue. I often can’t recall words I don’t use every day. I feel tired very early in the day. I like to travel, and I used to drive 12-16 hours with only brief stops every couple of hours. Now I need to stop overnight on long trips because I know I’m not as alert as it is safe to be.
Even if I didn’t have test results to quantify my decline in lung function, I feel it. I don’t know if this is characteristic of disease progression, but it certainly seems that way.
Will Willis
I too experience brain fog and forgetfulness. Assuming it's just part of being 73, but I would never admit being as mindless as someone in a higher place usually is. Sorry, I won't go there.
Anyway my diagnosis was spring of 2018 and I'm still able to do light work outside but my Dr has strongly advised against any gardening or digging. Pretty hard not to when your a farmer. Guess there's lots of fungus and microbes that can bring on an exacerbated event! And so I've learned to make adjustments, live with the consequences and take better care. So now I use a mask or respirator to do chores but I will say "between the hearing aids, the sunscreen, the mask, the canula, the portable O2 machine, hat and sunglasses, man its a lot of luggage!
But life IS still Grand.😊