Life as a New IPF Patient
Welcome to my column!
As indicated by its title, “Younger than 30: Living with IPF,” I am a 28-year-old female recently diagnosed with idiopathic pulmonary fibrosis and trying to adjust to life with a fatal and debilitating disease as a young adult with much on the go.
One of the biggest, and most challenging things I am currently trying to cope with, and am eager to hear about from others, is how to manage the fact that IPF changes/impacts everything in your life! In fact, it’s changed so much that it’s taken me several weeks to determine what I want to write about first for my column. As I proceed through my day, I catching myself thinking, “that would make a good topic,” or “I need to remember to talk about that in my column.”
So, I thought my column today could be about some of the upcoming topics I hope to write about, and outline them here while elaborating a little bit on each one. Some will be relevant to most people living with IPF. Some are more likely to be relevant just for young adults experiencing IPF, but I am eager to hear from you all — anyone who would like to contribute or send me a message — as we’re all in this together.
Here are just a few of the topics that I am considering writing about:
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When adults feel responsible for you, another adult
This something I’ve been trying to navigate for a few months now, as my relying on others for help is significantly increasing as my lung function is decreasing. I think, despite my being an adult, there are a few people who feel that they are medically responsible for me when we are together, because they know of my condition, what I’ve been through and am going to go through. I try to ensure no one feels responsible for me, because like every other adult, the only person responsible for me is me. It is frustrating when this assumption or fear of being responsible changes or hinders our plans altogether.
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How physical fatigue can impact all social relationships
I am confident that anyone with IPF can relate to this topic! When the simple act of walking, breathing, and talking leaves you physically exhausted, it is easy to want to cancel plans, interfering with social activities and relationships. Unless someone knows how it feels to experience such fatigue, it’s hard to blame them when they don’t understand why you just can’t keep up.
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The nuances of suddenly having to be aware of, and avoid, germs at all costs
This is something very new to me! I work with kids and families, and love my job, and suddenly I’m having to re-schedule or cancel meetings because if kids around, I’m at risk of getting sick. Then there is the discomfort that comes with asking if someone is sick in the home, or moving away from someone coughing in public, constantly using a hand sanitizer, or wearing a mask in places with crowds.
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The pendulum swing: From a great day to a horrible one in a matter of minutes!
Lately it is not unusual for me to wake up in the morning and feel content and happy, after making a conscious reminder to myself that I should be grateful for another day. But then I get a phone call about an abnormal test result, or something happening to someone else I know with IPF, or I start to feel physically unwell. Lately, even someone saying the wrong thing throws me into a fit of emotions — thanks, steroids! I never used to swing from one extreme to the next in a matter of minutes, and the fact that I do now still angers and surprises me.
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Feeling like you’re alone, amid 100+ people who want to help
This is probably the most difficult one to manage and it is two-fold. There are so many people who respond to my concerns (when they ask for them … I try not to voice them aloud often) with “I know,” or “ya I understand,” or “I know how that feels” — and even though they mean well, the response I want to say is “no you do not!” This isn’t a sympathy cry at all, but until you know what it feels like to feel like you’re suffocating just getting up and down off a chair, or walking for a few minutes at a time, you truly can’t know. The other part of this is not wanting to burden people with my issues and feelings, even though they offer to help. Now more than ever, I recognize how busy this stage of life is for people, between kids, managing a house, holding down a job, extra-curricular activities and social demands; this stage of life is hard, and believe me when I say it: you feel like a burden when you want to reach out to someone just to dump all your stuff on them, and you already know what they’re already dealing with. It’s frustrating and it’s tiring to feel like you’re alone, when you’re not, but you kind of are.
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The exhaustion that comes from being your own advocate
Reading the literature, the news sites, the social media blogs, and talking to others living with this disease, just to stay on top of relevant medical information, is so very tiring. Then you receive push back from your doctor (luckily, this rarely happens for me because my doc is amazing …). But, on top of everything else, it’s hard to try and keep up with medical advancements in order to effectively advocate for your needs.
Those are a few things on my mind right now, but there are also lots more! I will update as I go, I suppose. Please let me know some of the challenges you’re trying to navigate, especially if you’re a young adult or newly diagnosed with IPF … perhaps we can draw strength in numbers, or work through these things together. Thanks for reading!
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.
About the Author
Comments
Heidi
Charlene, you are a hero for doing this. My mom has PF and everything you have described is what she is living with. Please continue. You are an inspiration to all of us. Prayers to you.
Gwen
Try taking serrapeptase or trebinase it really helped me breath better!
Geoff Foley
Charlene, many thanks for sharing some of your thoughts following your diagnosis with IPF. I can relate to many of your feelings having been diagnosed with IPF back in 2002. I know that when you have been perfectly healthy your whole life (in my case 55 years) and all of a sudden are told you have a fatal (and at the time of my diagnosis) completely untreatable disease it all seems very surreal.
As you say, such a diagnosis, and more especially the symptoms of the disease, not only turn your own life upside down, but also the lives of your family members. You are necessarily no longer the independent person you once were, often depending on others to help with simple needs. Things that you always took for granted, now sometimes require planning and special effort.
You talked about your endeavors to stay abreast of the latest medical advancements. So long as that helps you to remain optimistic about the future, I think that is a good thing, and remaining upbeat and optimistic is a very important part of dealing with the disease. Back at the time of my own diagnosis there appeared to be relatively little research activity. Today that has changed completely and gives you much reason to be optimistic.
I obviously need to explain why I am still here among the living, now more than 14 years since I was told I likely had 18 months to two years to live. In April of 2005, with scant lung function remaining, and my entire body racked with rheumatoid arthritis, I was blessed with a double lung transplant at the Cleveland Clinic. This "Gift of Life" as thus far given me eleven years more to spend with my wife and three children, and blessed me with precious time to spend with my now three grandchildren. No, I am not the robust individual I once was, I am not doing many of the things I had planned to do in retirement, but I am doing many worthwhile things with my life, appreciating every new day, and hoping that I shall enjoy further years among my loved ones. Oh, and by the way, the immunosuppressant drugs I take to avoid organ rejection have entirely eliminated my rheumatoid arthritis!
My comments are by way of encouraging you to remain optimistic about your future. Living in Ontario, I am sure you have great medical care available to you, and as a young person I am sure you would be an excellent candidate for a lung transplant if that is the path you choose to follow. In the meantime, the available drug treatments for IPF hold promise for retarding the progression of your fibrosis, and offer time for new options to become available. Stay strong, stay optimistic, and accept help when you need it. I wish you the very best as you continue on your journey.
Michelle Kelly
Dear Charlene
Keep positive and accept any help offered. My mother (83) passed away on 1 October 2016 after living with IPF since about 1995. She was diagnosed in 2005. The great hope that you have is all the new research that is being funded and of course you are young enough for a lung transplant. My mother Lorraine from Auckland, New Zealand was very brave and positive to the end.
jorge garreton
I'm an IPF survivor thanks to a succesfull lung trasplant in 2013 after being diagnosed in 2010..before the transplant life can become an absolute misery..the 3erd day after it's a new life..
Tim Bossie
That is great to hear Jorge! We hope you continue to do well for a long time to come. :)
Chris S
Charlene, Thanks for choosing to do this article/series!
I was diagnosed with IPF last week, following 25 years with Rheumatoid Arthritis. I am 63 year old Male, retired in Aurora, Colorado.
I have an early diagnosis, as about 1/2 of the day my oxygen level is above 90. I'm only on my second day of keeping this journal.
I have a heath maintenance organization for health care, which doesn't allow me to see a doctor outside their system. Open enrollment period for the affordable care act begins Nov. 1, so I'm hopeful to get a plan that allows me to get a Doctor at National Jewish Hospital, which is one of US best Pulminary Research and care facilities. I hope this works, so I can get better medical care.
During the recent visit in which I was told the diagnosis, the Doctor spent half of our two hours telling me why I should now become a vegan, and only eat plant products. Have any of the rest of you been given this advise?? As my Doctor shared that he is avegan, I have the feeling he is pushing his own agena?
Tim Bossie
We are sorry for your recent diagnosis, but glad that you got some encouragement from Charlene's article. Good luck with the medical insurance and we hope that you are able to get into some better medical care quickly.
Geoff Foley
Chris S, as a former IPF patient and now a double lung recipient of more than 11 years, I am pleased to hear that you are seeking the best possible medical care for your IPF. That is a crucial first step following your diagnosis. National Jewish Hospital sounds like a good plan. I am sure they will offer you a number of possible options, perhaps including lung transplant. I note that you have been a rheumatoid sufferer for many years. I had very severe rheumatoid arthritis in the months prior to transplant, but I should note that it disappeared completely following transplant and has never returned! When you finally get to National Jewish, you might inquire with your doctor there whether your rheumatoid might also be resolved following a transplant (assuming that is a path you would consider).
My very best wishes to you as you begin this journey.
Tim Bossie
Wow Geoff! That is really great to hear that you are doing well and that your arthritis is no longer a factor. We hope that you continue to do well for a long time to come.
Janet S.
I am so curiously why your doctor told you to do vegan. Three months ago I decided on my oWn to be a vegan. It was just my own intuition to do so. Janet
Pat
All these comments are so very encouraging and sincerely appreciate the sharing of stories. My husband (68 yrs) has IPF, diagnosed a little over 5 years ago. We are fortunate to live only 1-1/2 hrs from Toronto General Hospital (TGH) which is world renown for lung transplants. We have just completed a week-long assessment for the team of Doctors to determine if he should or should not be placed on the list. As yet he is not on oxygen and enjoying most of what life has to offer with some limitations that would tax his breathing. As yet, he hasn't even made the decision if he even wants to be placed on the list. He is very unsure of what is involved after a transplant (which as we understand is a two-year process at a minimum) only to gain a few years more of life entirely different than we now know it to be based on the 5 year survival rate. This post may be off base, however, I am currently caught up in all the posts I have read and felt the need to write something. Good luck to everyone with continued success.
Lisa
Hi Charlene! My brother is 24years old with IPF and was diagnosed 2-3 years ago, he has developed pulmonary hypertension as well and is currently on the waiting list for a transplant. His mental health isn't very good and I try to be as supportive as I can but I would appreciate it so much if anyone under 30 with IPF, a survivor of it or anything would try speaking to him about this so he has someone to talk to! Please?
Charlene Marshall
Hi Lisa,
I sent you an email regarding this but I have not heard back from you. I hope your brother is doing alright.
Take care,
Charlene
Lexi Lindsey
Charlene,
I am an 18 year old cancer survivor, I finished chemo about a year ago now. Before my last chemo my doctors took away one of the drugs because my PFTs were considerably dropping, I am now in remission but, was diagnosed with pulmonary fibrosis right after I completed treatment. I couldn't find anything, news or research for people with pulmonary fibrosis in their teens and young adult years until I crossed your blog. I hope that you can help me navigate having a terminal illness with no cure. If anyone has any advice I'd love to hear it.
Lexi
Laura Hauser
Thank you so much for sharing this, you’ve done an amazing job humanizing a very difficult situation. My partner was recently diagnosed with a restrictive lung pattern and PF has not been ruled out. I’ve had a lot of trouble scouring the internet because most of the resources are sterile and dark. I don’t know how to be supportive without letting my fear and anxiety get in the way.
Charlene Marshall
Hi Laura,
Thank you so much for your kind words and for reading my column. One of my personal goals with my columns is to try and show the real human side of living with PF. So many amazing articles and columns are out there that are based on research, but not too many about what it is actually like to live with the disease and navigate each day while struggling to breathe. I so appreciate your comments!
So sorry to hear about your partner's diagnosis as well. I pray that it is not PF but if it is, please know that we are here to support you. Have you seen our Pulmonary Fibrosis News forums? There are some amazing caregivers (and patients) on that site who I am sure would be willing to help / listen if that would be of interest to you? If so, the site is here:http://pulmonaryfibrosisnews.com/forums/ ... I know it isn't necessarily PF, but even lung diseases are difficult to deal with, and I agree so many sites are filled with dark, scary information.
Please feel free to reach out any time.
Kindest regards,
Charlene.
Cherie lilly
I have i.p.f. and 45years old It has totally ruin my whole life. I have had it for 3years and I can't take take either of the meds for ipf.so,they give me prednisone and that gives me so many side effect. Sometimes, I get tired of fighting the pain.and loosening myself so much I can't work and disability is a big joke and nobody really doesn't care. I work most of my life. To died like this animal get more humane treatment then I will that's just sad.
Charlene Marshall
Hi Cherie,
Thanks for reading my columns and contributing your thoughts through the comments. I can certainly relate to how discouraging and frustrating it is to live with IPF so young. I am 30 and this disease has definitely changed my life as well. I am on one of the medications for IPF, but did have to seek out a second opinion to go on it. Have you done this? It might be worth it as it seems to have slowed the progression of my scarring down. You're right, prednisone is definitely not a pleasant medication to be on. It might be worth asking for a second opinion to see if you qualify for Esbriet or OFEV to help manage your disease a bit more.
I hope you find some comfort and support through this journey, none of us can do it alone... wishing you well.
Kind regards,
Charlene.
Shalemarr Goldthorpe
My 28 year old sister was diagnosed 2 years ago, but our small town doctor kept brushing it off saying there was no way she has IPF, she is too young. We currently drive 6 hours every 4 months to see a specialist in Seattle, WA. My heart is broken watching my baby sister go through this. Thank you for your story and I promise to try harder not to coddle her. It’s hard, but I’m trying.
Charlene Marshall
Hi Shalemarr,
Thank you so much for reading my column and for getting in touch via the comments. That said, I'm so sorry your sister was diagnosed with IPF and even moreso that the doctors kept brushing it off due to her being "too young". Sadly, this was also my experience for 4+ months. The doctors thought I had IPF long before they diagnosed me, because they were convinced it was something else. I am glad you've been set up now with a specialist, that is a positive. Your sister sounds very lucky to have you throughout this journey. If I can ever be of support to her (or you), please don't hesitate to reach out. I was 28 when I was diagnosed, now 30.
Prayers to you both!
Charlene.
Paige
Hi Charlene,
Thankyou for being selfless in sharing your story. Im not sure if I am being rude in asking or not, so feel free to tell me off, but could you please tell me how it all started for you? I havent been diagnosed with IPF yet however my doctor talked about it the other day and so now I am in the process of undergoing many tests to see if I do in fact have IPF. I had never heard of it before so I did a bit of research on what it was and am now worried but at the same time dont understand why she has jumped to this conclusion. I am 28 years old and have had a chronic cough since May and am now starting to feel a bit short of breath - it was put down to blockages in my nose but have had surgery to correct that. I am fatigued but also have low vit d and low iron. Asthma and copd have been ruled out through spirometry test though there was a mild restriction noted. So basically my question is did it start off slowly with not many symptoms for you too?
Sorry for the long post. Many thanks for your support!
Charlene Marshall
Hi Paige,
Thanks so much for reading my columns and for reaching out via the comments. I am happy to help, although I am so sorry you're potentially facing a diagnosis of IPF as well. I was 28 when diagnosed, and it was very shocking to say the least. I am happy to share a bit more of my story...
Its hard to say whether my symptoms happened gradually or rapidly, as they were there for about 9 months before the doctors really realized anything was wrong. I was overseas in early 2015 and when I came home I got really sick with a cold/flu and a chronic cough that would just not seem to go away. I thought it was from being in another country and spending 28+ hours on a plane with recycled air. I went to the doctor shortly after I got home and was put on antibiotics. Then from March - October of 2015 I saw several doctors as I would be treated with antibiotics, steroids, puffers, etc. all of which would alleviate my symptoms for a brief period of time but they'd return again. I went back overseas in November 2015 (I was working on my Masters Degree research) and I did a day excursion that required a little bit of physical exertion and I struggled to breathe. In that moment, I knew something was wrong with my lungs because I'd been active my whole life and the activity I was doing should not have caused such severe fatigue and shortness of breath. I flew home a few days later and was seen in the urgent care clinic early December 2015. That is when they discovered my 02 saturations were low and shipped me to the ER. They ran so many tests, but it took the doctors 4 months (until April 2016) to diagnosis me. Turns out, they suspected it was IPF all along but were trying to find another answer because "I was so young".
Make sure the doctor does a high-resolution CT scan of your lungs (HRCT) this is the primary way IPF is diagnosed from what I understand. I did not opt for a biopsy due to the risks. Did your doctor listen to your lungs and describe hearing a "crackle" (like velcro sound)? This is a very common indicator of IPF as well, so she may have some suspicions just from a physical exam of your lungs. I also have very low vit d. and iron, and on supplements for both. Glad the spirometry was alright and ruled out Asthma and COPD. My guess is that your doctor has seen or heard indicators of scarring in your lungs. Could you ask him or her about this? Not sure if any of this helps? Feel free to reach out any time!
Thinking of you.
Charlene.
Qaisar Sultan
Hi Charlene Hey I am just wondering I have all the tests done the specialist says I have a rare form of IPF and I am scheduled for a biopsy in a couple of weeks (which in all honesty not looking forward to) my breathing isn’t great can’t go up a flight of stairs without getting breathless the same when walking a few yards, I have lost so much weight in the last few months along with losing appetite and always feeling tired eating. You say you didn’t have the biopsy just wondering what made you opt out what alternate options you took in terms of medicine. I know everyone’s different but good to know different peoples experiences
Charlene Marshall
Hi Qaisar,
Thanks for reading my columns and for getting in touch via the comments. Sorry to hear of your IPF diagnosis, I remember how scary that time was for me and I hope you have lots of support through it all. Really good question re: the biopsy! We've been talking about this a lot in our PF News forums actually (http://pulmonaryfibrosisnews.com/forums/) as some people it is recommended to and some it isn't. I was the latter, and in hindsight, after hearing of others' experience, I am thankful. I think it depends on the treating physician who diagnoses you and what their preference is. I had a high-resolution CT (HRCT) scan done but no one ever mentioned a biopsy to me. Can you ask your doctor for more clarification on why he wants the biopsy and if it is necessary? Just a thought I had :)
Charlene.
Kim
Thanks for sharing your journey Charlene. My 33 year old daughter has just been diagnosed. Waiting to see the Respiratory specialist at end of August. Still in a state of shock.
Charlene Marshall
Hi Kim,
Thanks for reading my columns and reaching out via the comments, though I am very sorry for you and your daughter to hear of her diagnosis. So tough - this cruel disease doesn't seem to spare anyone, regardless of age. Be gentle with yourselves during this tough time, I remember all the emotions coming in waves after I was diagnosed. If I can be of any help to you or your daughter, please don't ever hesitate to reach out via email: [email protected]. There are some unique, very specific issues those of us living with this disease as a young adult face, and very few can relate... it helps to connect with those who can. Hang in there, and know you are in my thoughts and prayers, as is your daughter.
Sincerely,
Charlene.
Ron L
Hello everyone. I'm new to IPF but, suspect I have had it for some time. I am a retired Firefighter/Paramedic (currently 63) and noticed I was short of breath on the job as far back as 2010. I smoked many many years ago, but quit over 21 years ago. It wasn't until a bout of Bronchitis/Pneumonia in Dec of 2019, that I became increasingly short of breath, congested. It never went away. That's when I started to press my Dr to pursue the cause. I have been through so many tests, I can't begin to tell you the number. I also have a Hiatal Hernia and ran the circle on it's evaluation as well. Finally, I was sent to a Pulmonologist who performed a Cat Scan and referred me to Washington University School of Medicine in St Louis. After more blood tests and a Cat Scan. Here I am... The Wash U physician called it IPF and has yet to get back with me. She still has yet to confer with her colleagues regarding all the tests. I'm waiting on that result now. As it stands , I've been going on with life. I still get short of breath on exertion. Mainly cutting grass , etc. I just stop and catch my breath when needed. I'm not on Oxygen and seem to recover fairly quickly. I have good days and bad days. My energy level wains sometimes but I try to gut it out when I have too. Even as an X Paramedic, I didn't know about IPF. I'm learning... In reading some of your responses in this blog , I can sure relate to the mental aspects of this. I've been going through the same realizations. Good Luck and Thanks for listening...