Looking back on the 8 years that followed my IPF diagnosis
The anniversary of a rare disease diagnosis is a time for reflection
The life I once knew and loved drastically changed on April 7, 2016. On that day, I was diagnosed with idiopathic pulmonary fibrosis (IPF), a life-threatening and progressive lung disease for which there is no cure. Earlier this month, I marked my eighth anniversary of having IPF — a day I didn’t know if I’d ever see.
April 7 fell on a Sunday this year, so I didn’t have work to distract me. I never know how I’ll feel every year on my anniversary, but I like to have the option of being distracted, which makes the day a little easier for me. This year, since I wasn’t working, I spent a lot of time reflecting on the emotions of my diagnosis anniversary and thought I’d write about it in case my experience resonates with others.
Denial is a normal part of any difficult human experience. When I was diagnosed with IPF, I was in denial that a “simple lung condition,” as I thought of it, would change anything for me. I knew that it was progressive and the timeline of when things would get worse was unpredictable. But at 28, I had no intention of changing how I lived my life at the time.
Frustration is another emotion I felt shortly after my diagnosis. Most people around me, including those in my immediate family, knew the seriousness of IPF and were on high alert for any signs or symptoms of my disease progressing. This sudden concern by others about how I lived my life frustrated me, although I knew it was with good intentions. Again, in my mind, IPF wasn’t going to change anything for me, so knowing that others were worried felt frustrating.
I’ve come a long way since having these two strong emotions after my diagnosis, because I’ve had no choice but to accept IPF. While I’ve survived eight years with this disease, it has entailed many physical, emotional, and social hardships. I probably also have more medical knowledge than most young adults my age.
Because of IPF, I’ve learned more about the respiratory system than I ever cared to know. I feel equipped to manage medication side effects and schedules, supplemental oxygen, trips to the emergency room, hospitalizations, and routine medical appointments. All of these things have interfered with my life in different ways, such as preventing me from going on vacations or requiring time away from work. Socially, my circle is a lot smaller now, and I’m focused on the quality rather than the quantity of my relationships.
No expiration date
Every year on my diagnosis anniversary, it’s easy to fall into the trap of thinking about what I’ve lost due to IPF. But it’s important to look for positive things, too. For example, without the disease, I wouldn’t have a platform like this column to share my journey. Writing about my experience with IPF has been one of the most therapeutic aspects of living with my disease.
Through the Pulmonary Fibrosis News Forums, I’ve made friends from all over the world who are living with IPF, and I’ve even been able to meet some of them in person. This has helped me understand that IPF is not as rare as previously thought and the world of chronic illness isn’t as lonely as I assumed it would be. I’ve also had many opportunities for advocacy and public speaking.
One of the biggest things I’ve learned in the past eight years is that no one knows their expiration date. I’m living proof of that. When I was diagnosed, I was deeply concerned about IPF’s prognosis, which at the time was three to five years. But that was before the U.S. Food and Drug Administration approved two anti-fibrotic medications. I also know many others who have shown that people can survive with IPF for a long time.
So here’s to another year of living with a life-threatening and progressive lung disease. It’s not always easy, of course. But with one foot in front of the other and a good support system, it’s still possible to live a good life.
How do you mark your PF diagnosis anniversary? I’d love to hear from you 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
Zelick Altman
Coincidentally my anniversary date was just one week before yours. At the time of diagnosis I was also “given” three to five years to live. In speaking with my clergyman, in my case my Rabbi, his comment was similar to yours except he said no one knows how long you will live, except G-d.
In my case I made it until just under six years at which time I was told I had only months to live without a lung transplant. Fortunately I did get the transplant in time and now have “re-set” the clock with a new anniversary date.
Be well and good luck
Sharon Hindman
Thankful to all for letting us know we need updates on survival rates after 3 to 5 years which I think is the news that most of us get when we first diagnosed congratulations on your lung transplant. I hope all is going well for you and you feel stronger each day. I had my first appointment with long transplant and was told I was too sick so I have to try to do some endurance exercises in pulmonary rehab and I go back August 2. Praying I qualify then I pray for all that have this life-changing diagnosis.. I know it is important to keep a positive attitude, but it’s hard sometimes
Jonna Provine
How old were you when you received your transplant?
Mrs Janice Moore
Well done for your inspirational life - we all appreciate your support, knowledge and I have learnt so much from belonging to this
friendly and understanding group. Thank you Charlene.
Ron Reid
Sometime last month I passed my 7th anniversary with IPF. I think I've passed through denial into acceptance - choosing a burial plot and talking to my family doctor about the MAiD process, plus a lot of reading, helps make denial a thing of the past. Along the way, I decided against lung transplant. My goal now is to celebrate my 75th birthday in August.
Charlene, as a young person with so much life to look forward to, you are in a very different place. I know that you are making every effort to prolong your life, and that you have done much to help others understand and accept this cruel disease. You are an inspiration to many of us, and we hope and pray that your good work is rewarded by a successful transplant and long life.
Steve Dragoo
I rarely think about the anniversary as I approach 8 years but the original discovery date in Oct 2016 does pop up in discussion from time to time. Being back in the USA hasn't changed my outlook much as home is where my wife and I share a roof together.
Trying to be outwardly focused helps keep me looking at others and their physical/mental/spiritual dilemmas (not drama as that can be a trap). Hitting 75 next week has allowed me to discover that life is very inconsistent; thankfully, that knowledge and being closer to the end of my wick has given me insight into the spiritual walk and needs of others - that's an immeasurable gift I can live with...
Joseph T Fecteau
Hi all, I too, at 80, appreciate Charlene’s younger perspectives on life and living with IPF. I was diagnosed with IPF as NSIP, told that it is not IPF but it is idiopathic, so I have been confused for the past 7 years. But effects are similar and I have accepted during that time that I am going to die one day. Every day’s more time I get is a bonus and I have spent it with a positive intention to enjoy what is and continue growing. I have had a good life dealing with whatever turns up, any experience in life is a rewarding experience whether good or bad. I’m very thankful for all my days. Life began again after diagnosis.
Keith Emery
I was first diagnosed in September 2015, when I was 67 years of age. I feel privileged to be prescribed OFEV, a year ago, together with a Portable Oxygen Concentrator ( I have also purchased my own kit, so that I may fly on holidays overseas). Yesterday I met with my Respiratory Consultant and was delighted to learn that since the OFEV prescription, my lung capacity has improved markedly to 91%. I attend two one-hour fitness classes weekly, walk at least a mile every day, and stay active through gardening and DIY (all with the aid of oxygen provided by my portable POC). I too was advised of the three to five-year outlook, but was determined to exceed that, hence my actions to stay fit.
Recently I had a thorough medical checkup of all of my vital organs, bodily functions, blood pressure etc. etc. I was told by my GP Doctor that I was 'as fit as a flea!' after it. However, my wife spoiled my euphoria by reminding me that I have Idiopathic Pulmonary Fibrosis and it will eventually cause my demise. I am determined to continue with my fitness regime and look forward to another nine years of living with IPF! I am now 76 years of age and expect to be 85 years of age! Chin up everyone.
David Ota
Charlene
You reminded me of when I would have big fights with my wife over what was safe for me to do with IPF. Denial ain't just a river, it's part of IPF. Like most things IPF-related, my lungs, my wife, and my life were always there to remind me of the limitations. Not a complaint, just an observation. My 8 year Lung Transplant anniversary is coming up in a few weeks, and like you, I have blown past the 5-6 years mean time to failure on this set of lungs. One thing I try to keep in mind as I live this adventure is: I didn't ask to be born, everyone dies, all the other messy stuff in between is up to me. At this point, my life is as long as anyone else. I may be sprinting to the finish or I may be wandering lost in the woods, I don't know. So the best I can do is have fun, enjoy the ride when I can, hang on when I have to, and remember to smile.
Brenda Colvin
Hi everyone, I don’t comment very often but I was so encouraged by the testimonies I just read. I had my 4 year mark January 2 nd. I have just started Ofev about 2 months ago. So far so good . I have tolerated it very well. Had a stress test yesterday and go next Tuesday for results. I still do most of my normal activities. I feel blessed everyday I wake up and thank God for the breath he has put in me. This is a journey we are all on with this disease. We can all support each other.
John vanderbilt
Get the drug out ill take in now
Rebecca
I am living with this illness as well. Was diagnosed soon to be 2 years ago on May 6th. It's hard, I go from worry, to sad, fearful, and have had to cut back at work so much. I'm on oxygen and have been ever since. Also, suffering with sleep apnea and asthma to boot. The immune system just plummets. Usually on antibiotics and steroids at least once a month. I guess you could say, although I have accepted it, I'm still not willing to give up. Everyday is a struggle. Yet we must go on. I feel alone a lot. My 12 y/o son lives with me and it makes me depressed knowing I can't do the things other mothers can with their children.
I'm sorry to ramble but don't usually talk about it.
Your post has touched my heart and I wish you didn't have to go through this. Hugs
Kimberley Broom
I'm five years in on having iLD. All my test seems to lean in one way or another so I just have scarring 😂. It has definitely changed my life. I was 46 and it was April 19th when I walked in to the University of Alabama at Birmingham hospital er. Couldn't stop coughing or wheezing. At first they sent me home with diagnosis of bad asthma attack. To only be called a few hours later with and urgent get back to er now, there's fluid around your heart, on the 23rd the floor was pulled out from under me. We know what's wrong. One it's not your heart but your lungs. Then thise words you have a lung disease and it's called ILD and here's a sucker punch there's no cure. My whole world came completely down. My doctors never gave me a expiration date but I did look it up, and felt crushed. But God was with me. Through these five years I've learned a lot about me, cried a lot denied it hated it and so on. But this year I can say i have finally embraced this new me. I too have met some wonderful people. I share mu journey of my diagnosis and all it intells.
Life has definitely dealt us a wick hand, but it is a hand I have to play..
Paul Polidano
Hi Charlene – What a beautiful article, thank you for putting it out there to us, others with IPF.
As for me, I purposely have not noted the exact date I was diagnosed as having IPF – other than it being ‘someday in March 2020’ and the reason for doing this is because I don’t want to let it get to me. I try and lead the same life as I did just over 4 years ago – though I have retired full time since -not due to IPF issues, but because of my age – am now 80.
Thank you again for sharing your article with us.
All the best
Poldan -Melbourne (Down under)
Stewart Shaw
I've just joined pilmonaryfibrosisnews.com today and read the article. Thank you Charlene. My 10th anniversary is just around the corner on 10th June. Unfortunately I'm excluded from taking (on Medicare) pirfenidone or nintedanib because of mild COPD. I fall below the threshold on the FEV1/FVC. Initially the prognosis was poor with the usual 3 year forecast, but here I am almost 10 years down the road although I'm now well into stage 3. What really scares me, for the very first time, is my partners diagnosis last week of Alzheimer's dementia. I know I won't be around to help her. I've now shed silent tears at night which I'd never done on learning of the IPF diagnosis.
Jonna Provine
I’ve had a bad cough for about 4 months. My doctor has prescribed medication, but this past week he sent me for an x-ray. Friday, his nurse called and said I have scarring on my lungs and the doctor wants to see me. I was shocked and surprised. I’m not sure I’ve gotten my head around what this really means. I’ve had a lot of illness and limitations because of severe arthritis for years, but I’ve never let that hold me back.
I will be 77 on November 10th. It’s strange to me all the things I am looking forward to that are beyond the window of expectation. This is all so early ,but I am extremely pragmatic and even more extremely grounded in my strong faith in Jesus Christ. I hope my journey will be long and filled with wonderful new moments that will have a positive impact on my family and community. Thank you for giving me a place to share and to be lifted up.