Living With Pulmonary Fibrosis Means a Life of Contrasts
A psychotherapy conference discussing dichotomies get this columnist thinking
I have always been passionate about professional development and am often the first to express interest in training sessions, conferences, or webinars to enhance my learning in the field of psychotherapy. Professional development stretches my thinking and introduces concepts I may not have thought about.
I recently attended a virtual conference with a variety of presentations aimed at encouraging professionals to consider all aspects of a person’s psychosocial needs when they seek therapy. My favorite session focused on understanding the holistic needs of a client while exploring those psychosocial issues. This allows a clinician to zoom in on a single problem and make it the focus of a particular therapy session.
Another topic discussed the dichotomies in people’s lives, which prompted me to think about the dichotomies in my own life, particularly in the context of chronic illness. Since my idiopathic pulmonary fibrosis (IPF) diagnosis six years ago, sometimes it feels as though I live a life of contrasts.
I have tried to live the best I can with this life-threatening and chronic lung condition. I enjoy traveling despite requiring supplemental oxygen, and like to spend time with family and friends. I try to focus on quality moments over quantity. Yet despite my best efforts, on some days I feel like I’m two completely different people.
I’ve written before about the importance of person-first language for patients living with a chronic illness. This is because I value who I am, apart from IPF, and try to present myself as a vibrant and enthusiastic young adult. However, I sometimes completely succumb to the fact I am an IPF patient and my physical abilities are limited.
As I thought about it after the conference, this is probably the most difficult dichotomy I deal with: trying to be a healthy, young adult versus being a chronic illness patient.
While I don’t identify as being an IPF patient first, it’s impossible to hide the fact that my life drastically differs from my peers. Frequent hospitalizations, pulmonary function tests, supplemental oxygen, and pulmonary rehab all highlight the fact that I have a lung disease. This is when the persona of a chronically ill patient is ever-present.
On the other hand, when I travel and am able to cross things off my bucket list or celebrate my professional accomplishments, this persona contrasts the chronically ill patient — I am a young adult flourishing with everyday tasks.
Following are some of the contrasts I struggle with in my life as an IPF patient:
Proactively vs. reactively caring for my health
Managing a lung disease is hard. It means always being on the lookout for anything that feels abnormal or indicates a problem. Proactively caring for my health can be exhausting. Sometimes I am really good at thinking ahead, while other times I overdo it and end up making decisions about my health reactively. Balancing this dichotomy is challenging.
Embracing opportunities now vs. later
I’ve always struggled with fear of missing out, or FOMO, even when I was younger. Since my IPF diagnosis, I’ve had to walk a fine line between wanting to do everything now or waiting until later. The problem with this dichotomy is that I don’t know if later will be too late.
Energy vs. exhaustion
An IPF patient often feels exhausted beyond simple physical fatigue. There are days when all I can do is get out of bed and move to the couch, where I sleep the rest of the day. On the contrary, there are other days when I feel energized and accomplish a lot. Balancing the contrast of these two realities is difficult, particularly because it’s impossible to predict.
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
Barbara Short
I find dealing with the constant fatigue is some days unbearable. This week, I’ve had 3 really good days and so far 1 bad one. We went to a bar last night that had a bad fried food odor. My coughing got so bad we had to leave. Don’t know if the odor was the reason or not. So today, I’m not very good. There are times when I just need someone dealing with this disease to talk to.
Gordon Sandmire
I find it quite sad that someone your age even needs to formulate a “bucket list”. That should be for us who are much older to do. Hope you fulfill yours.
R Chris LaReau
I was diagnosed in November, 2017. I'm older, 72 next month. I had been a runner to the extent even of half and full marathons. To that I credit having known while my doctor still declared me fit, no, something is not right. I shouldn't be short of breath for having raked leaves. Which lead eventually to a lung biopsy and my IPF diagnosis. Fatigue, unusual fatigue, seems to be a side effect we all know too well. What of what I hear others speak of, "brain fog"? I take Esbriet, full amount, 801mg 3X/day. Is this, brain fog, common for others? It never leaves my alone. However else to put it, I just don't feel as 'sharp' as ever I once was. I'll ask my wife, have I given this, whatever it may be, enough consideration?
Forrest Robertson
This may be a bit long, but here it is. As an IPF patient, mobility is my most important need, and as you may understand, is also my most difficult-to-get need! But without mobility I’m house bound. The point of this post is to explain what I have been doing to maintain mobility.
I was diagnosed with IPF in 2014 and have been progressively needing more oxygen each year. I do fine at 2 l/m when I’m just sitting, but as soon as I get up, my needs go from 2 l/m to 12-15 l/m, depending on what I am doing: dressing, doing household chores, exercising, etc. To provide that much oxygen I have had to go to two 10 l/m concentrators that both feed a “Y” attached to a 32-40 foot, high-flow line to my canula. That arrangement provides 10 to 20 l/m. (Medicare would not pay for the second concentrator so I at first rented a second concentrator at $250/month; later I bought a second concentrator out-of-pocket for $1,500, cheaper in the long run.)
As I said before, mobility is my most important need, so I have had to work out the following procedure for out-of-house mobility.
• For short trips such as going down to eat at the facility where I live, etc., I use an Eclypse-5 POC. (Medicare would not pay for the POC, another $2,500 expense, but worth it.) The Eclipse provides 3 l/m continuous flow, or up to a pulse flow setting of 9. Now don’t confuse a pulse flow setting of 9 with 9 l/m. The pulse flow setting of 9 provides about the same effect as 5-6 l/m of continuous flow. I have found that I can get by at 6 l/m if I slow down and rest as needed. I have three batteries for the Eclipse, and each battery providing about 1 hour of use, a total use time of about 3 hours. Each extra battery costs about $450, another expense (I've found being disabled is expensive!)
I also have used the Elcpise-5 and the three batteries for short, 1-2 hr. flights. But even with 3 batteries I need to keep plugged in wherever I’m sitting in the terminal to insure I will maintain enough battery life for the flight.
• For trips when more strenuous exertion is required I use “E” size oxygen tanks and my Go-Go Sports Scooter, (another $1,500-$2,000 out-of-pocket expense). The scooter can carry up to 3 E tanks, and each tank lasts about 2 hours at a setting at 6 l/m or about half of that (1 hr.) at 12 l/m.
When I’m just sitting, I have found that I only need 2 l/m, so each tank lasts me 3-4 hrs. I carry 2 tanks in a holder I had made (cost about $300 total for parts and labor) that fits into the scooter trailer hitch, plus a third tank in a pushcart between my legs. The pushcart allows me to get out of the scooter and move around. But walking around requires 12-15 l/m, so each tank lasts only 1 hour or less at the higher flow rate. I monitor my oxygen use carefully to make sure I won’t run out before I get home.
• I also volunteer once or twice a week at the Adventist Hospital near where I live. I ride my scooter to the hospital and park it during my 4-hour shift. I remove and use the tanks for my supplemental oxygen while I volunteer, and then after my shift I reattach the tanks and ride home.
Forrest