Our Pulmonary Fibrosis Journeys Can Differ Drastically
I believe we all have an innate desire to feel connected with one another. It doesn’t matter whether that connection is when we’re empathizing with another patient plagued by the same disease, or when the anguish we experience matches that of a patient who is also a friend.
One of my favorite lines from the movie “Five Feet Apart” is about the importance of physical connection and touch, and that we need it from those we love almost as much as we need air to breathe. But making connections isn’t always easy in the rare disease world.
As a columnist for Pulmonary Fibrosis News, I’ve been privileged to connect with other patients. They have mentioned that my story and struggles of living with idiopathic pulmonary fibrosis (IPF) resonate with them. I care deeply for those who read my columns, even if we’re hundreds or thousands of miles apart. But one thing always surprises me: One person’s journey never seems to be the same as anyone else’s.
Following my diagnosis nearly four years ago, I sought comfort from other patients’ stories. While I connected with others on a variety of topics, inevitably there were discrepancies among our disease trajectories. Some patients had a rapidly progressing form of IPF and others progressed slowly. When a disease manifests so differently in each patient, it can be difficult to find commonality.
The Pulmonary Fibrosis News Forums are wonderful for connecting with other patients. It is nice to bounce ideas off one other about topics such as symptom management, side effects, prognosis, and the latest research. It also allows us to see how different this disease can be among patients.
The following are some of my unique challenges with IPF:
- Extreme temperatures: This is a popular topic on the forums, as some patients are bothered by heat and humidity, and others struggle with the cold. Both extremes bother me. I have a hard time breathing in the humidity. It feels as if I can’t inhale enough air even while using supplemental oxygen. And the extreme cold — which I regularly experience during our Canadian winters — causes pain in my chest and thoracic cavity.
- Secondhand smoke inhalation: I have taken three unexpected ambulance rides after inhaling secondhand smoke. My lungs are intolerant of it and they will burn to the point that I feel I am suffocating. Please let me know if this is something you cannot tolerate since being diagnosed with IPF.
- Climbing stairs: This has become more difficult for me since my recent health setback. I can manage one flight of stairs, but not two. Some patients can handle stairs with their saturations rebounding after a short rest; others can’t manage them at all. I am lucky I can still tolerate stairs, but I have a limit. If I exceed that limit, I can end up breathless and in trouble.
- Internal temperatures: Since my IPF diagnosis, I am always cold. Many patients talk about overheating or sweating, but I am the opposite. I often need multiple layers of clothing or blankets to keep warm, possibly because of chronic below-normal oxygenation.
What experiences have you had as a patient that seem to differ from others with IPF/PF? Please share in the comments below.
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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 Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.
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Comments
Chuck Harrison
Hi Charlene, chuck Harriison here . First off A lot has gone , you will notice by spelling and sequence of writting . Do you remember how. I always wondered how we would leet each other know of ones death ? Well this is my way of letting you know how close I am , I am now bed fired now cannot leave it . But everyday I do try . My wife and daughter Sarah stand me up at my walker and try and move I got up to two steps in the past 5 weeks .? My down fall started from a fall in the bath and down him I went a sliding . Then a infection in my lung , hospitals (2) visits along with pneumonia . And all the while other infections (common cold ) and all the wearing mas k .
Charlene I'm tired my doctor makes. House calls often . I can't eat by self ,I need to be fed , potted I out all shred of dignity , non left . Now as far as facing death I know I'm not far . Your distant friend ship has been here's a kiss for you darling?
Charlene I'm still not going to give up , and to you readers please don't stop the fight
Charlene my hand has just about given out
You still take care , take care of yourself , and I'm sending a certain kind of love to you
Charlene Marshall
Hi my dear friend!
I am so happy to hear from you, but I have to admit: heartbroken based on the content of this note. I'm so sorry that you experience a fall and downward spiral since then. How awful, but your fighting spirit still shines through to me! I know we know our bodies best in terms of what is coming or what we're close to, so I'm not going to say you're wrong but I certainly am sending you my love, friendship and peace as you maybe transition from this existence to the next. I am praying for comfort for you in any capacity you want it - I know dealing with this disease is exhausting in every aspect. Until I can no longer fight myself, I will continue to fight for my friends like you Chuck. My heart aches for you, but I know better breathing is ahead. Sending you all my love... please write when you can, but know that I understand if it is too tough. Thinking of you and thank you for your friendship!!!! With love, Charlene.
Jerry Genesio
Other than the IPF diagnosis Charlene, I'm afraid we have little in common. I'm 81 and was diagnosed just a couple of months ago. I am somewhat more sensitive to cold recently, especially in my extremities, and I'm having occasional bouts of short-windedness, but nothing too serious. I've had a triple-bypass (2009) so cardiovascular disease could very well account for the short-windedness. The idiopathic aspect of IPF makes it very difficult to wrap one's head around it.
I've read that many pulmonologists lean toward a suspicion that IPF might be genetic. My mother received an identical diagnosis in her early 80s and she lived to be 90. I have also been using a nasal spray (ipratropium bromide 0.03%) twice a day, every day, prescribed about seven years ago. Its "common" side effects include chest pain, cough, increased sputum, difficult or labored breathing, wheezing, and "less common", loss of appetite which I am experiencing along with slight weight loss. I'd be very interested to know if others with IPF who read your forum use this spray or one similar to it.
In two weeks, I have an appointment with a pulmonologist who specializes in IPF, specifically for a second opinion. I also hope to ask her about a study begun last year at the MRC London Institute of Medical Sciences focusing on prior research that suggests blocking a protein called interleukin by using therapeutic antibodies can reverse IPF related fibrosis in the lung.
And I want to ask her about an article published on PFNews.com dated Jan 28, 2020, that suggests statins used to lower cholesterol may be a treatment for IPF. I was in one of the original Lipitor studies in the 1990s and learned when the study was over that I was taking 10mg of Lipitor daily for the five years the study lasted. After that study, my dose was increased to 20mg qd, and about five years later it was increased again to 40mg qd which I have continued to this day.
The first pulmonologist I saw recommended that I start taking Esbriet to slow the progression of the IPF but I've read a lot about it and I'm not inclined to start taking it, at least not yet, even though as a disabled veteran I can get it through the VA free of charge. I'm already taking a lot of meds and the side effects associated with Esbriet have really put me off. I'm not eligible for the other IPF med because I also take Xarelto and Plavix.
Thanks for orchestrating this forum. I just found it a week or so ago and the information that you and others have shared has been very helpful. Incidentally, I live in Maine so I can relate to your sensitivity to the cold.
Charlene Marshall
Hi Jerry,
Thanks so much for reading my columns and reaching out via the comments! It is so nice to connect with others, and I am glad we've found this space, along with the forums to correspond. I truly believe we're better when we face this disease together. I'm glad you're not experiencing too many difficult side effects of this cruel disease - I will pray this remains for a long time! Yes, I agree with you, the 'idiopathic' nature of IPF can be so confusing. I spent so much time trying to trace back to WHY I could have gotten the disease, but ultimately it was wasted energy because no one knows.
I think (and hope!) a few people replied to your post on the forum about the nasal spray you use. Thanks for sharing that! Did you have your appointment with the pulmonologist, or is that this week? I am a bit behind on replying to comments or posts but I think you mentioned it is this week. Please circle back to us and let us know what he/she says about the statins (this was a popular discussion topic on the forums) and the MRC study. Goodluck at the appointment, I really hope it goes well. I'll be thinking of you!
Thanks for joining the forums and sharing your thoughts. We couldn't host this platform without others like you!
Charlene.
Rose Sottilo
Hello y'all,
COVID-19 just got real here in San Antonio Texas. A quarantined person was let go from quarantine yesterday before her final test came back and was positive. She went to airport got a hotel and went to the mall one mile from my home. She went shopping and to the food court before she was taken back to quarantine.
Don't count on the CDC to keep it contained.
Marija Dail
Thank you, Charlene, for this letter. My husband has IPF, diagnosed two years ago, IPF somewhat progressed to almost 50% of his lungs. He grew up in India, as you know; extremly poluted country. He is also a sculptor and has used all sorts of material, which may have contributed to the disease. Hopwever, he is verty disciplined and a sport buff, who still p[lays tennis (1 set only and doubles), exercises every day, walks every evening by the sea shore, takes rehab3 times a week and breathing exercises every day. He is also on OFEV,. experimental medication twice a day.
He started on oxygen a couple of months ago, since he wakes up at night in need of air. Over all, we think that he may have had this disease for quite some time (he is in his 70-ies), but it got worse a couple of years ago. Hopwebver, it seems tyhat with all this regiment he is doing, his lungs are holding their own pretty good; he is not getting worse as far as we can see, but he will have another check up in a monyth and we will know better what is the status of his lungs.Thank you for being there!
Charlene Marshall
Hi Marija,
Thanks so much for reading my columns and reaching out via the comments. I always appreciate hearing from others, though certainly wish none of us had to deal with this cruel disease. Sorry to hear your husband is dealing with IPF - may his commitment to physical activity and sports continue for a long time. Kudos to him, I know how hard this is! I hope the OFEV is helping him and he is tolerating it well also. Goodluck with the upcoming check-up/appointment, I'll be rooting for you both and hope his lungs continue to be stable. Feel free to write anytime, we're stronger when we confront this disease together. Thanks for writing and wishing both you and your husband well.
Charlene.
Bert Maidment
How anyone copes with the IPF condition is quite individual and dependent on many factors. I joined a Pulmonary Rehab group at St. Joseph Hospital in Kansas City last year and it has greatly improved my strength and endurance but my IPF unfortunately still progresses. I want to share a video from KMBC News last weekend regarding the Climb for Air sponsored by the American Lung Association. When I heard about this event, I said to myself that I could never do that. I used to run every morning 4-6 miles, run 5K and 10K races and played ice hockey on three adult teams years ago. Since being scourged by IPF I have not been able to do much. I was being defined by my disease and I don't like it. So, as crazy as I am, I decided to attempt the 42 Story climb. My 10 year old grandson and daughter quickly decided to support me and climb with me. One hour and 8 minutes later, I actually made to the top! Normal people make the climb in about 15 minutes. I used my pulseox to pace my climb and rested (a lot!). I am sharing this experience because it is important to not let this disease control of your mind and body (even though it does). Fighting back provides a sense of control. Every challenge no matter how big or small can be met with determination and persistence. In addition, to raising money for lung disease research, I hoped to help others with IPF to cope...BERT
https://www.kmbc.com/article/man-with-lung-disease-tackles-fight-for-air-climb/31179883
Charlene Marshall
Hi Bert,
Thanks so much for reading my columns and reaching out via the comments. I always love hearing from others! I completely agree with you - how we cope with IPF is very individualized, and dependent on many factors. Your story (and the link you provided us) is SO inspiring, thank you for doing that and kudos to you!! I can't imagine how tough that was, but also how rewarding it must have felt to reach the top and feel like you had some control back over IPF. Way to go! Share that link far and wide, I am confident it will inspire many, many others. Thank you for writing to us .... be well!
Charlene.
marija dail
Hi, Charlene! It has been almost a year since I wrote you last; well, my husband is continuing his fight and is still sculpting, actually at this moment he is working on a large sculpture he wants to call "Kiss". Simultaneously he is working on another large sculpture of his mother, called "Waiting".Well, that may tell you that he is still very active. Yes, he still plays tennis, but only doubles and one set. However, his stamina has suffered somewhat lately; he can't climb stairs in one try, but has to rest after 8 steps, he gets short of breath. He used to walk a couple of miles a day, but now it is maybe a mile or a little less; he gets tire easily. years ago and is on OFEV almost 2 years. He tolerates it better when he eats rice and yogurt only, otherwise he gets runs, but manages to enjoy a good meal now and then. He learned to "play his body like a violin"; knows what is best for him in order to preserve his sense of well being. He is very disciplined and exercises a few times a day for stamina, strength and lung elasticity.
We are waiting to hear what will researches come up with- but we can't hold our breath for iy.
Thank you for your writing!
Charlene Marshall
Hi Marjia,
Nice to hear from you, thank you for your update! I'm glad your husband is continuing his fight, and doing well/keeping very active as much as he can. It's nice to hear from patients that, although there is some change in stamina, they're doing relatively well and hopefully it means the disease is progressing slowly. The discipline you share will serve him well no doubt, kudos to him! Take good care and stay safe.
Char.