How I’ve overcome adversity on my IPF journey
A columnist shares the main challenges he's faced before and after transplant
Adversity is something rare disease patients face on a regular basis. It can take many forms, but it often involves facing a challenging situation or doing something against all odds.
When I was diagnosed with idiopathic pulmonary fibrosis (IPF) in January 2017, I don’t think I had any idea of the adversity that would be a part of my journey. At 59, I was well established and successful professionally. I had fully expected to continue working for several more years, but the health issues that developed in the nine months following my diagnosis resulted in me going on disability in September of that year.
This was an adverse event, a challenge I hadn’t expected. But I soon learned that not all adversity is created equal, especially for an IPF patient. I faced two primary difficulties during the pre-transplant portion of my journey.
Pre-transplant adversity
I learned I had obstructive sleep apnea shortly after I was diagnosed with IPF. My doctor prescribed a continuous positive airway pressure, or CPAP, machine to alleviate periods of breathing irregularities.
The second challenge was gastroesophageal reflux disease (GERD), which occurs when stomach acid flows into the esophagus toward the mouth. IPF patients have a higher incidence of GERD than the general population. I take Protonix (pantoprazole) twice daily and have an endoscopy every five years to determine if GERD has caused any damage to my esophagus.
I overcame both health issues and continue to manage them today.
Post-transplant adversity
After my bilateral lung transplant in July 2021, my care team worked hard to suppress my immune system to prevent the rejection of my donor’s lungs. Being more vulnerable to illness and infection has been tough.
This was further complicated by the COVID-19 pandemic. To date, I’ve received five vaccine doses. My care team also prescribed Evusheld (tixagevimab and cilgavimab) to help prevent COVID-19. I avoided the virus for more than three years, but it finally caught up to me in April. I believe the vaccines and preventive infusions were key to how mild the illness was for me.
More broadly, any health exacerbation is a form of adversity. Pneumonia was my first major issue post-transplant. More recently, my care team has had to address my narrowing bronchial stem head-on. When balloon dilations failed to provide the necessary rehabilitation, a stent was inserted in the airway. The plan is to have the stent train the airway to stay open.
I continue to manage each of these post-transplant challenges today.
Adversity in the rare disease community
While adversity is common in the rare disease community, so is resilience. I’ve met patients in person and virtually who’ve been very clear that they’re in it to win, to be as successful as possible on their health journey.
Shortly after my diagnosis, I said out loud that I wasn’t interested in playing “why me?” I had to deal with IPF because I had it. I see that same spirit here at Pulmonary Fibrosis News and the other rare disease websites published by BioNews.
As I was doing prep work for this column, I searched for a well-known figure who has faced adversity. Coincidentally, it turns out that today, June 27, is Helen Keller Day. Keller, who was blind and deaf, is a perfect example of overcoming adversity. Sharing these examples is one way I can make every breath count.
What adversities have you faced and how did you overcome them? 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.
About the Author
Comments
Ashish
I could literally feel every bit about it. Salute to you sir . I was diagnosed with PF in 2019 I was 20 yrs old then , when doctor informed me that I have fibrosis take care of yourself and follow every instruction properly but I just assumed to be like every other asthama kinda normal disease, as I never heard about it before I didn't knew about it I just kept being the guy I always was but without my knowledge I don't know my health detoriated alot and then I searched for this term PF and realised how crucial it is . Although now I m locked on to the bed 24x7 with oxygen in a single room for months no hope ... coincidentally I was browsing for some hope regarding issue of mine that is on 27 June and I landed up here and I really felt great reading about the Helen Keller thing of yours. Thanks for making me feel good. Have a great life ahead.
Samuel Kirton
Ashish
Thanks for your note and I am glad you found my column. I am not sure where you are located but I do realize that being diagnosed at 20 years old is unexpected. The PF community faces some form of adversity on a daily basis. Finding the strength to face adversity is a quality Helen Keller exhibited in the way she lived her life. I so hope you will come back to let us know how you are doing.
Sam ...
Ashish
Samuel
I forgot to mention that I am from India and in India PF is very very rare actually apart from the doctors and rare PF patient no one is aware about it. Even my parent didn't understand the issue when I explained to them because for them no such thing ever existed and neither they heard anything about it . Even today they jst think that it's just breathing trouble . If I breathe exercise hard daily regularly , I will improve slow and steady soon 🙂 . Also as PF is rare in India there isn't proper technique technology or any treatment that can help me out. Please help me out if you know a way . It will be helpful if you guide me. I am 24 now already i have lost 3-4 years of young age just by coughing and being breathless, just being at home lying on the bed , with tied to oxygen cylinder sometimes, no picnics no plans no parties . Please let me know if there is any treatment that I can get to get cured or better.
Ashish
And moreover m not fit for jobs I not able to earn and contribute financially to our family.
Which makes me feel more guilty that day by day I am turning into a liability to my family. Although I know they don't feel me as a liability, they do everything with love and care still I feel bad that all my friends are taking care of their mom and dad and earning for the family and I am just giving my parents more trouble and helping out them nothing.
Sorry Unknowingly shared much of my pain , I guess 😂
Samuel Kirton
Ashish,
Thanks for your reply. Sharing your pain here is safe. Many others who read your words may be feeling the same way. You are not alone and have helped others see they are not alone. Even though you are in India, I would suggest that you look at the patient educational materials offered by the Pulmonary Fibrosis Foundation. Additionally, visit the Forums section of Pulmonary Fibrosis News.
Sam ...
Terri
Thank you for this! Your words inspire me. I was diagnosed with Interstitial Lung Disease in 2021 as a result of an autoimmune disease (Sjogren's). I've been feeling sorry for myself for a bit now, but realize it's my choice to feel this way and that I can do something about it. I'm going to resume pulmonary rehab and have asked my doctor for a referral to palliative care. My ILD is progressive, but I can't get on the transplant list until I've been cancer-free for 5 years. Yes, I overcame the cancer adversity! We just have to keep keeping on. What other choice is there? My best to you.
Samuel Kirton
Terri
Thanks for reading my column and sharing your decision to press forward with life in the face of adversity. Please come back and let me know how you are doing.
Sam ...
Don Graybill
Hi Samuel, You have an interesting column here. Kudos for doing it!
Like others, I too have a story to tell -- diagnosed with IPF in 2011, my breathing is now getting particularly labored. What keeps me going is an eternal perspective and my faith in Jesus Christ. I've found it especially therapeutic to be able to share with others in a tactful, gracious manner the lessons learned and experiences on this IPF journey. I've been doing this for about a year via a series of blog posts entitled "A Journey From Surviving to Thriving -- Living a Fulfilled Life in the Midst of Chaos".. If interested you can tap into that at dongraybill.blogspot.com.
Warm Regards,
Don Graybill
Samuel Kirton
Don,
Thanks for reading my column and for sharing your writing. Your story is a good example that each individual IPF journey is unique. My diagnosis ran from early 2017 until I was transplanted in July 2021. You have a long-run diagnosis, while not unheard of, they are not all that common.
Sam ...
Brooks R Brown
Hello Sam,
I was diagnosed with GERDs because I kept coughing. Thought it was asthma… but no!
I lived in the Virgin Islands from 1961-2018 and no doctors here ever said anything about the scarring of my lungs-aka reason for my cough!. I moved to Aiken SC where in 2021 I was able to see Pulmonary doctors. Then in November 2022 I was given the confirmed diagnosis of scleroderma an interstitial lung disease because they saw the scarring!. Since February 2023 i was put on Oxygen at night and given OFEV 150mg 2 times a day. The side effects as I told my doctors at MUSC are not good. I like seeing horse trot at the race tracks here I just don’t like it when people have them! They took me down to 100 mg and still I’m having issues. So In mid June I stopped taking it. I’m still coughing and use the oxygen at night and take a portable case when I do Pulmonary Rehab Therapy.
But now I’m wondering down the roads what to expect. By the way I’m 72 years old. Thanks kindly Brooks Brown.. appreciate your post as well!!
Samuel Kirton
Hi Brooks,
Thanks for reading my column and for sharing your experience. How did your care team feel about stopping OFEV? One thing you might explore with your care team is a consultation with a nutritionist to find the proper balance of protein to help you and OFEV get along better. MUSC is a Care Center Network location and may have a nutritionist on the team. The progression of these diseases is unique to each of us as is the treatment plan. I do hope you come by again to let me know how you are doing.
Sam ...
Brooks Brown
Thank you Sam,
Btw when I saw your photograph I knew instantly that you were lucky enough to be seated by the ocean! I thought hopefully that was a cruise boat cabin’s balcony!! Good Photo, Anyway.. back to my IPF so once the dosage had been lowered from 150 to 100 and I was shrill having probelems that when my pulmonologist said I should stop.. We”ve not connected since then as to nutrition planes although I did ask what foods were best. However your note on looking into a nutritionist may be the right thing too. I also find that now not being on OFEV I’m not as lethargic or tired as much. Each of us is different I guess. What ais your stance on taking Zinc? i read about that on line from a doctors column from Cedar-Sinai in California? Thanks again Sam!! All my best
Brooksrb.
Samuel Kirton
Hi Brooks,
Thanks for your follow-up note and for keeping up with the column. Working the Ofev issue with your care team is an important step. Regarding the zinc... This is something you need to review with your care team. I have read the material from a presentation in an online forum. I have also heard contradicting information from other doctors during presentations I have attended. Depending on what other medications you may be taking additional Zinc without your care team concurring could have unintended consequences. It is in your best interest to consult your care team. Our writers here are not doctors.
Sam...
Marti Darling
"Adversity is something rare disease patients face on a regular basis." That statement hits the nail on the head. I've been whining to myself (thank God nobody had to hear that.) all day about what it takes to get organized to go do something until you get too tired to do it. I am looking at it from another angle, now. So, it takes a lot of planning to get organized. So, you head out the door to go then remember, "Opps! Just one more thing." So, SO WHAT. I plan to keep my sense of humor when the "So's" show up. I really enjoyed your article on ADVERSITY. It's all about that. Hellen Keller what a great person to look up to.
Samuel Kirton
Marti,
Thanks for reading my column and for your note. Can I suggest another column which you may enjoy on giving yourself grace on this journey. Let me know if you take a look at it.
Sam ...