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Normalcy While Living with Pulmonary Fibrosis
As I am sure many of you can relate, my entire world was flipped upside down when I was diagnosed with idiopathic pulmonary fibrosis (IPF) in April 2016 at 28 years old. It was absurd, abnormal and there was no way I was going to let a 3-5 year prognosis dictate how I chose to live or what goals I was going to strive for. That being said, this attitude did take some time to adopt and initially I needed my time to wallow and be sad for my new reality.
For a few months following my diagnosis, nothing changed. My doctors very clearly told me that because of my age, they weren’t sure how the diagnosis would progress. In their exact words, they told me that “nothing could change for years, or everything could be different in six months”. It was the latter for me, as I was periodically using supplemental oxygen by July 2016. Despite this, I was able to continue doing most of the things that I wanted on a regular basis. For the most part, things continued to be normal, until they weren’t anymore.
The amount of appointments I had began to increase, as did the medication regimen and side effects that go along with it. Symptoms of a lung disease started to appear, such as a hacking dry cough, dyspnea episodes, blue-tinged face or lips, and the constant risk of catching a respiratory disease, requiring the use of a Vogmask everywhere I go. For the most part, I’ve adapted quite well to my new reality and even find opportunities to interject humour into living with IPF.
Recently, a friend highlighted that I had some grey/blue tinges in my face from refusing to wear my supplemental oxygen during a wedding ceremony (I had it with me and I’d put it on after). She was surprised that I did not seem to be alarmed, and she asked me, “is that normal?” I couldn’t help but chuckle out loud because nothing is normal about living with a lung disease at 30 years old! Somedays, I don’t even remember what my ‘normal’ is any more. Can you relate?
- Since your diagnosis of IPF/PF, has your sense of ‘normal’ changed dramatically?
- Do you have any specific tasks/hobbies/interests that you deliberately hang onto despite your lung disease to maintain a sense of normal?
“Through humour, you can soften some of the worst blows that life delivers. And once you find laughter, no matter how painful your situation might be, you can survive it”. – Brandon Villasenor.
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9 Replies
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I do no what to think or feel I’m 48 and got mctd/pulmonary fibrosis I know it’s normal.ro have ‘bad’ days the meds they put me on mycophenolate I can take when IV no infection but soon and I have I need to stop not forgetting the mood swings I get with them great I already have bipolar I’m so mad at the world what right as it to give me a death sentence I can’t even cry im so mad and sad for my 15yr old what about him? I’m trying so hard to be positive and I am most the time ,my lung function as decreased but not sure what to till I see Dr next week but I could tell the difference in myself as I told Dr other month life is so unfair and so cruel
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Normalcy. Gosh I wish. Needing oxygen to stand, to walk, to shop, for chores. No normalcy. Try hard not to get depressed but for my own personality IPF, I cannot be normal anymore. For over 50 years I’ve been involved with motorcycles. Have ridden in most states and many foreign countries. Had to give up my two wheel Harley and now have a Harley trike. I can handle the oxygen on it. I so dread the day I have to give that up too. Can’t hunt or hike with my son anymore. Spend too many days housebound. Sorry for the downer.
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Hi Tom,
Thanks for writing, and no need to apologize – I think it is important for us to feel the gamet of emotions that come from living with this disease. What is nice about these forums is that everyone on here understands (more than most) what you’re going through so feel free to vent. It sure is a cruel disease, isn’t it? Once my social worker challenged me to re-think “normal”, and I liked her approach. She said normal is so overrated, and someone else’s normal doesn’t have to be the same as yours. Now, my “norm” is lugging around my oxygen tank. Do I enjoy it? No, not really but I sure don’t like the idea of the alternative of not having it. Now what is abnormal is when I don’t have my oxygen with me, and people actually comment more on when I don’t have it vs. when I do. Its interesting how that happened…
Will you ever be considered a transplant candidate Tom? Sounds like you’re relatively active or were before IPF which I know benefits transplant candidates.
Hang in there, and feel free to write us anytime!
Take care,
Charlene.
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I did have an afternoon with the transplant surgeon last week. She feels I am not sick enough yet to be listed. As this IPF progresses I’ll be going back to her. At my age-74-I may be getting too old to be eligible. Thank you Charlene for your reply.
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Hi Tom,
Thanks so much for getting back to me, and for sharing a bit more about your IPF experience. It is such an odd position to be in, when it comes to transplant approval, isn’t it? You need to be “sick” enough to warrant going on the list, but not too sick that you can survive the wait. I am glad you’re being monitored by the transplant surgeon already, its so important to be proactive. I’ll keep my fingers crossed that your disease stabilizes, or that the next transplant meeting goes well if you’re hoping to consider this procedure. What are your thoughts on it overall Tom? I get quite overwhelmed thinking about it, and knowing I will be facing it as I am 31.
Take care,
Charlene.
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Gosh you are so very young! No fair for you to have this disease. Feel so sad for you. Me? I’ve had a wonderful life, two sons, two grandchildren, two great grandkids.
I think that the lung Tx makes sense if there is enough quality time left on this earth. For sure it would be the option for you. The medical folks have much more experience now with rejection drugs, with the actual procedure and the recovery. Researchers worldwide are working to find a cure for IPF. Hopefully a cure can be found soon. I will do a Tx as soon as I can get approved. I have always been a fighter. I’ll fight on for a while longer. I did another CT scan today and see my hero…my pulmonologist doc next week again. Will see what the scan shows and seek her advice. Her name is Mary Beth Scholand and she has made my life so much better. She is the top pulmonologist at the U of Utah Hospital. A great hospital, one of country’s top ten for past nine years. Perhaps you have heard of the Huntsman Cancer Institute? It is part of that hospital. Thanks for your thoughts. Are you on a Tx list?
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Hi Tom,
Thanks so much for getting back to me, and I appreciate your kind words. They say it was quite rare that I’ve been diagnosed with IPF so young, but I’m not sure I feel the same as unfortunately now I know a group of young adults living with IPF too. Thanks for sharing a bit more about yourself too, what a blessed life you have with both sons, grandsons and great grandchildren. I bet they bring you so much joy?
I agree with you re: the amount of people dedicated to research in the areas of lung transplantation and IPF. I sure hope I am around to see something a little more ‘certain’ when it comes to managing this disease. A cure would be nice, but even something that stops the progression completely would be welcome too. So glad you’re happy with your care and hospital facility, that is so important and I am glad you’re continuing the conversation about lung transplant. Please keep me posted on that.
I am not listed yet no, I am in the midst of organizing the first set of assessment tests to determine if I qualify yet. Like you, I may not be “sick enough” yet. It is such a delicate balance, isn’t it?
Take care and thanks again for your reply!
Charlene. -
Hello:
I was diagnosed with IPF about 6 months ago and I’m still able to walk a couple of miles every day with out stopping or breathing heavily.I was wondering if someone could tell me how quickly this progresses and if anybody has heard or thought about trying the Wei institute program.
Thank you
Al
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Hello Allan, your activity level is great! Please keep it up. Pulmonary fibrosis is a tricky disease to track. It has a mind of its own. The best scenario would be for you to not digress and remain stable for a long healthy life. From my own experience I was stable and then I had rsv and a subsequent exacerbation; I went from 2 lpm pulse to 6-8 lpm continuous flow in a matter of days. Researchers can not even predict how your pf will manifest itself. There has been discussion on this forum regarding WEI institute. Hopefully some of our members who have experience with them will chime in. Thanks, Mark.
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