Halloween, Thanksgiving, and Christmas: Oh, the holiday stress
How I've learned to cope with the season while living with pulmonary fibrosis
The pulmonary fibrosis (PF) community is not a stranger to stress. Regardless of your role, whether as a patient, caregiver, or transplant recipient, you’ve likely experienced it. The stress could be white coat syndrome or come from a test, procedure, or the many unknowns associated with living with PF.
Another stressor for many in the PF community is the approach of the holiday season. With Halloween a week away, the holiday advertisements and marketing are already upon us. It’s a little more than four weeks until Thanksgiving here in the United States and just over eight weeks until Christmas. These bring a different kind of stress, though.
Following my diagnosis of idiopathic pulmonary fibrosis in January 2017, the holidays were only a couple of weeks behind us. During those first months of the year, my disease progression was becoming noticeable to my colleagues. I stopped working in September 2017, when I wasn’t able to continue effectively in my chosen profession.
Historically, my wife, Susan, and I had hosted epic celebrations of Halloween, family gatherings for Thanksgiving, and quiet celebrations around Christmas. In 2017, those events seemed to continue as normal.
Susan, who was also my caregiver, reminded me not to overdo it at each event. I did notice then that I was tiring more easily, and I had to pay attention to what my body was telling me.
Traveling for other family holidays, especially after I began using oxygen, required much more planning to ensure the trips were not marred by stress. My checklist included concerns like how many oxygen tanks I’d need. Would I need to arrange for an oxygen concentrator to be delivered to wherever I was going or could I take my home concentrator with me? Did I need a spare for any component, such as the washer used to seal my oxygen tank regulator or even a spare regulator?
When I received my bilateral lung transplant in July 2021, I no longer needed to be concerned about my oxygen requirements. I exchanged that stressor for my need to keep track of where the closest care facility was that had experience managing patients with a solid organ transplant.
Keeping stress at bay
Have you experienced any of these stressors? If you have, you know they can’t be simply willed away. But I’ve found that by recognizing the stress and planning for it, I’ve been able to deal with it. I’d like to share some of the tips I’ve learned on my journey that have helped me with stressful situations, especially around the holidays.
Would I be hosting a gathering or would Susan and I be traveling to an event? Let me start with what I see as the easier of the two. If we were hosting, we’d have everything we needed at home. What I had to do was know my limitations and respect them; when I’d become tired, I needed to make time to rest.
When I had to travel for a holiday, the same rules about listening to my body applied. The first decision was how to travel: plane, train, or automobile. Plane travel wasn’t possible for me from late 2019 until I got my new lungs because of my oxygen requirements pre-transplant. If you can travel by plane, each airline has its own process to authorize the use of an oxygen concentrator during flight.
Travel by train or automobile was possible later, when I could carry oxygen equipment with me. Amtrak, for instance, let me travel with oxygen tanks. By car, I was only limited by the tanks I had on hand and my ability to load my home concentrator into the car.
I developed a system for traveling with oxygen by preparing a “go bag” while packing for a trip. I created a kit with replacement washers, oxygen tubing, cannulas, and a regulator. I got the idea from a session at the 2019 Pulmonary Fibrosis Foundation Summit, which taught participants how to prepare for an evacuation in the event of a disaster. I learned what I needed to build the kit.
In my post-transplant world, I find the PFF Care Center Network locations I’ll be near on any trip. I make a quick reference file on my phone to ensure the address is immediately available.
Begin planning for the holidays now. I hope you’ve found something useful here that will also help you make every breath count.
Do you have tips for dealing with holiday stress? Please share them 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.
About the Author
John Gould
Make a 4 wheel carryon a medical bag with extra O2 stuff, put CPAP stuff in it if you use a CPAP. It doesn't count as carry on and you won't be charged for it, I use socks, underwear etc as packing in it to keep things in it safe during the flight, however if you have zip lock bags of meds that should be in your carry on then put them in there too - they will be much easier to find during flight and layovers then being in your regular carry on. I use zip lock bags tor medications and keep liquid ones in separate baggies as the expand during flight due to the altitude of 6000 they fly at.
Before I was diagnosed with IPF I was waking JP in the middle of the night which was ruining my night's sleep. I took a sleep test and found out I stopped breathing multiple times during the night, so a CPAP wad prescribed and I began using it which helped me sleep through the night. When my breathless began I thought it was a heart issue so before my visit with the cardiologist he had me take a heart echocardiogram. At my first appt with the cardiologist he said your heart is fine, you need to see a lung doctor, a pulmonologist. Before the pulmonologist appt she had be do a high res cat scan with die of my lungs and a PFT At my first medicare doctor pulmonologist appt she said I have PF and 3-5 years to live and it was terminal, I asked what can be done right now for me she said there were 2 drugs out there to slow the scarring progression Ofev (Nintedanib) and Pirfenidone I began my extensive research of PF and those drugs and my out of pocket medicare costs and cost options of those drugs. The monthly costs for those drugs was outrageous and I'd be taking a ton of money away that would be left go my wife after I died. I do called my Medicare supplement broker and she referred me to a Canadian pharmacy that she referred many of her clients to which had prices between $ 1 - 3 a pill. My pulmonologist said OFEV was not covered my Medicare only Pirfenidone was. However my research told me Pirfenidone was only effective for only certain types of PF patients and OFEV was used for all others - it was the normal go to drug (later when I began ti be seen at the VA, my VA Pulmonologist confirmed this). From her referral I Canadian Prescription Drug Store and was amazed st the prices (Costco, Walgreens, Walmart, Safeway were all between 1500 - 2959 a month) from the Canadian drug store they were 120 per month.
I asked my Medicare Pulmonologist for a written prescription then after faxing my prescription to the Canadian drug store, ordered the pills and began using them. You can look at the pill prices with out a prescription on their website, but you need a prescription to place your order.
John Gould
I'm convinced stress causes scarring to progress, I am a CPA and worked 7 days a week this last tax season and my scarring greatly progressed during tax season due to stress. It had the last tax season also. During the summer when there is no stress my scarring and PFTs showed no change.
I'm convinced stress causes cancer and progresses existing cancers.
There is a saying - forgiveness is like drinking poison and eating for the other person to die. When we hold on to unforgiveness (even if they were wrong and you were right) it causes stress and it will show in detrimental things in your body !!!
Learn how to release stress, for me I am a Christian with a real relationship with God and Jesus, I have a devotional time each morning where He and I talk, also I journal in my prayer journal - during this morning daily time my stress dissipates, during my tax season work day it builds up in me again and as soon as I notice it I say in Jesus name be gone and it goes, then begins to build up again - then my relief of stress cycle keeps going.
Unreleased stress will kill us as it progresses scarring, PF scarring is taking enough years from us already.