How Pulmonary Fibrosis Complicates Simple Appointments and Everyday Tasks
The progression of pulmonary fibrosis is making once simple tasks difficult for columnist Charlene Marshall
By definition, a progressive illness is one that worsens over time. When I was diagnosed in 2016 with idiopathic pulmonary fibrosis (IPF), a life-threatening and progressive lung disease, I was told by a pulmonologist that simple tasks would become difficult as the fibrosis in my lungs worsened.
Before IPF, I rarely got sick, so I had no experience with how knowledgeable a specialized lung doctor was about these types of illnesses. He also didn’t know me and my energetic personality, so I wasn’t concerned when he gave me that warning six years ago. In hindsight, it was wrong not to take him seriously from the beginning.
Shortly after my diagnosis, I started taking medications to manage IPF, including some that suppressed my immune system. This meant it was easier for me to catch viruses or have infections, but I didn’t bother taking extra precautions. Once I had the side effects of Ofev (nintedanib), an anti-fibrotic therapy, under control, I resumed normalcy in my life.
But due to not taking my disease seriously, I fell ill in the spring of 2017, and my experience in the intensive care unit whipped me into shape. I suddenly became proactive in whatever I needed to do to protect my lungs from getting that sick again.
Over the years, I’ve noticed that things have become increasingly difficult for me due to the progression of pulmonary fibrosis, but I tend to find workarounds. I’m starting to slow down, or rather, this disease is forcing me to slow down. It’s hard to accept this as a young adult, and the workaround options are becoming fewer as my IPF worsens.
For people with advanced IPF, many simple tasks get progressively harder. If someone had asked me before what types of things are difficult for lung disease patients, I doubt I would have guessed correctly. The difficulties extend to simple tasks and nearly every aspect of our lives. Patients reach a point where it becomes impossible to forget that we have this debilitating disease.
Last week, my schedule was full of appointments. Whether because of summer vacation schedules or just bad timing, everyone suddenly seemed available for the appointments I needed. During the sessions, the progressive nature of IPF was more evident than ever, as I had difficulty getting through most of them, despite the minimal effort they required.
Following are some of the simple appointments that have become complicated due to the progression of pulmonary fibrosis:
Dental appointments
Going to the dentist never used to make me anxious. I didn’t mind it, and probably much to the dismay of the staff, I found ways to continue talking with my mouth open while they cleaned my teeth. But I no longer like trips to the dentist, and my appointment last week was extremely difficult and caused great anxiety.
Lying flat in the chair with my head tilted back and mouth open caused some of the worst shortness of breath I’ve ever experienced. It seemed hard for others to understand why I felt this way, because shortness of breath often is associated with cardiac exercise, yet all I was doing was lying down. This experience was exhausting and frustrating for both the dental hygienist and me, although she remained professional and compassionate throughout my appointment.
Nail appointments
While this appointment isn’t crucial to my health, I enjoy the simple pleasure of having my nails manicured once in a while. For the first time, the strong smell of acetone in the salon caused me to repeatedly cough and clear my throat. Despite having a mask on and ensuring others I didn’t have COVID-19, it seemed that some of those present didn’t appreciate the frequency of my IPF cough.
Groceries
Despite my disease worsening, I still try to do grocery shopping independently. I enjoy it, and as long as I don’t rush, I can manage it on my own. Unfortunately, when I’m packing my groceries after paying for them, people behind me in line tend to rush me, which is upsetting and causes me to be short of breath. I never would have thought that the simple task of bagging groceries would leave me exhausted and struggling to breathe.
I’m curious to learn what simple tasks the progression of pulmonary fibrosis has made difficult for you. Please share your experiences 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
Janna Lynn
Feeling quite distressed as I try to negotiate aged care system in Australia which is complicated - 72yrs old - diagnosed 2012. I use home deliveries for groceries however the nausea with OFEV is making it harder to prepare food & complete daily tasks as I also have Fibromyalgia. All the exhaustion causes a scrambled feeling quite often and I can’t imagine how scary it would be for those who are younger just thinking about all this. I think often about all those I read of here and hope you’re travelling as ok as possible. Love from Perth Australia.
Karen Rachal
I still cook dinner and do the laundry. It is getting more difficult. Yesterday I had to accompany my husband to his colonoscopy. It wiped me out. I took a 2 hour nap today and still feel like it wasn’t enough.
Christine McCann
I find lifting and carrying things (even if they are not heavy) causes difficulty breathing, also hot showers. So I get help to my car from the box boys, try not to hold my breath or carry much very far, and much to my dismay take lukewarm showers. Because of the breathlessness I also find it very difficult to exercise enough.
jerry reynolds
If you can limit the time exercising might help. I like to go upstairs and down often during the day. Just going up and down once helps our systems. Proud of you for your determination.
Randall Thornton
My main problem is bending over. Since I have lost 1 lung already, the diaphragm which normally controls 2 lungs only has one now. This makes the diaphragm kind of wrap around the one lung that is left and squeezes it so it is hard to breath. I loose my eye sight and have to set down for awhile to get everything going correctly again. The temp outside and in are another problem. Once it hits 78, I am done outside, I cannot breath. Same inside once the temp is 80. I have to turn the ac on or I feel like I'm going to pass out. That is the main problem along with a bad heart.
Jan Zacharias
I was first diagnosed in January of this year with IPF, although I had been coughing for five years previous. At first it was just an annoying cough, then came the extreme fatigue and coughing fits in which I cough so hard I choke and become breathless. But I'm 70! I can't imagine experiencing this as a young person! We moved recently and when I have an appointment with my pulmonologist, an hour away, it's a seven-hour day (my sweet husband driving) and I am sucked dry. If I vacuum, I do a room, then rest, then do another. I'm lucky to be able to take a walk every day and I make myself do it. Any trip out of the house is typically "one stop" because I tire too much otherwise. The woman cutting my hair recently said, "This must be an outing for you" and I thought, "Oh my gosh, she's right." I am to start ofed soon and I dread the side effects, as I already have GERD. Friends with PF, I understand your struggle and many of you struggle much more than I. Sometimes I wonder if there will BE any better days ahead.
Lionel Howland
Two things that might help with the grocery shopping:
Try to pick times when there are fewer shoppers. You won't feel so rushed.
Use the handicap electric carts that most stores provide. They make shopping less tiring and the other shoppers are alerted that you have a problem and tend to be more patient.
I'm 78 years old, in my seventh year of diagnosis. It took a bit of self convincing to start using those carts. I've always been independent and I had to overcome my self imposed stigma of using one of those carts.
Good luck, Hank
Sree
Hi Charlene,
Very sorry to read your story. How close are you to lung transplant?
Sree
Mike Hopkins
I am 72 years old and was diagnosed in 2019. At the time I was also diagnosed with Small Lymphocytic Lymphoma.
Even though the cancer was non life threating it was decided that I should have two rounds of chemo. After had the chemo I became dependent of oxygen 24/7. I will not go into the slide of the past three years but it is very difficult for me to do anything. But I have learned to adapt and refuse to allow my illness to keep me down. What might take a normal person 5 minutes to do a simple task for me it might be 20 minutes. I just have to take many stops to sit and catch my breath and allow my oxygen levels to get back to normal. I could go on but the important thing to take from this is stay active and do what you can.
David Strawser
I to get stressed out doing normal things such as going to the store and doctor's appointments, so I order my groceries and schedule the pickup to coincide with other trips, I was just diagnosed in March but have had issues since 2016. am 71 years old and on Esbriet, my condition seems different from others my capacity is at 47% at last test my O/2 level averages 94%, but can drop quickly, I keep supplemental oxygen on hand just for these occasions. I hate steps the most. Going to the doctors is dreadful as most parking even handicapped is inconvenient due to the walking but I try to continue to do as much as I can.
Keep fighting
Dave
HARLETTA CARTHEL
while we cant change our conditions, I do appreciate others telling me things that work better for them. I do not buy groceries at Walmart unless it is an online order they deliver to my car. I will not waste my energy checking out groceries on my own, packing them up and taking them to the car. If I shop in person I go to a grocery that checks you out and carries your groceries to the car.
A stick vacuum works better for me - light weight and I stand in one position and vacuum in a fan shape and then move ahead and repeat.
The dental assistant usually works with me on teeth cleaning so I do not have to lie flat and head down, but hair washing at the salon is difficult.
Any tips to help in any way, would be greatly appreciated!
Glenn Fredericks
Charlene, your post about simple tasks is an important one. In my case, having been very active for decades, my family and friends all are supportive and understand that I can’t paddle my board very far, walk as far or fast, etc. But other than my wonderful wife, they really don’t understand (I know I didn’t) how the oxygen deprivation affects routine everyday functioning. If I have a modest project in the house, it drags me down if I have to go to the garage 3 times for some tool or materials, something that was inconsequential before. We’re used to normal hustling around as being nothing, but now it’s an effort. I do find, however, that a more active day does help, and I do better starting with a walk or my exercises, then moving forward.
Betty Schreiner
I have IPF which was diagnosed 1 1/2 years ago. I appreciate reading about some of your struggles. I truly can relate and appreciate not feeling alone.
Linda Sandy
I have grown accustomed to having IPF since 2917. Like many of you it’s been very gradual but at 74 I feel like 94. I no longer drive depend on my wonderful husband to take me to appointments, do grocery shopping, vacuuming. We manage meals between the two of us and he does all the loading the dishwasher after. I was an avid gardener for years but my husband manages a few flowers and vegetables for.our enjoyment. Recently going up and down stairs daily was my exercise but it’s been reduced to once a week, needing to stop and rest on that journey. I do well to get any little chores gone in the morning as by noon I’m exhausted. Showering is a huge chore now and deems a nap afterwards. All the shopping I do is online. My greatest enjoyment is my family and visiting with friends. With oxygen 24/7 and my cane or walker I still am determined to do what ever I can without help, which is hard for me since I used to be one doing for everyone else.
Diane Wagner
I was diagnosed IPF November 2017. At first being on oxygen 24/7 was a nightmare but I adjusted. Got my Inogen and off I went everywhere. Now I cannot use the Inogen and to go out use e-tanks. I use to walk my dog three time a day but now I am down to two as at 10 my oxygen drops to the 80's. I can no longer do much in my house and to go out with the e-tanks is difficult so I go out as little as possible. Lately I have started having severe panic attacks and should force myself to out but it is so hard. I live alone with my dog and hope I can continue. Unless you are living this life no one can even begin to understand it.
Good luck to all of you.
Eunice St John
Right, everything is harder with IPF and I need to stop during a short walk of about 15 yards to catch breath. My gas exchange is about 32 %. I don't bring a tank with me outside the house, but keep a tank in one room for exercising, like chair yoga or standing Qi Gong. I do go up and down stairs a lot, and I walk in the pool. I'm 86. I still drive, and it's fun, because I don't need good breathing to drive! Blessings to all who must adjust to shortness of breath. Mentally I am not used to it after almost one year...I will be making more adjustments I know!