What Pulmonary Fibrosis Feels Like
As a patient living with idiopathic pulmonary fibrosis (IPF), I can’t count the number of times that close friends and family members have asked me to describe what this disease feels like. While I do my best to share my experience with IPF, I’ve been unsatisfied with the explanations I’ve given them. I have a hard time putting into words the physical challenges of IPF and the panic I experience when I’m breathless.
If you’ve ever felt short of breath from participating in a physical activity you hadn’t trained for, or from a respiratory virus, you can relate to how distressing it is. However, there is one significant difference between this type of breathlessness and that experienced while living with IPF. In the previous example, people know their breathlessness will subside and breathing will return to normal. Unfortunately, those of us living with IPF cannot take comfort in knowing that our breathlessness will be short-lived, and many of us live in a constant state of fear as a result.
In addition to the mental anguish of having IPF, the physical challenges of this disease are not for the faint of heart. IPF requires pain management, especially toward the end of one’s life, as has been discussed recently in the Pulmonary Fibrosis News Forums. However, describing what that pain feels like to someone who has never lived with a lung disease is difficult.
Recently, in honor of Cystic Fibrosis Awareness Month, I watched an advocacy video in which healthy people were asked to participate in an activity that resembled what breathing was like for those living with cystic fibrosis (CF). While I don’t know what it’s like to have CF, I wondered if people would have a similar reaction to a simulation of breathing with lungs filled with fibrotic tissue.
A few days later, a close friend asked me, “What does it feel like (physically) to have IPF?” Since then, I’ve been thinking of a response. Following are some examples I came up with:
- Burning chest: Have you ever tried to participate in a physical activity you hadn’t trained for, leaving your chest and lungs on fire afterward? Unfortunately, this is a familiar feeling for those of us living with IPF. I assume that this burning sensation is due to the fibrosis in our lung tissue that inhibits adequate oxygenation. Unlike with healthy lungs, this feeling doesn’t go away with rest or medication.
- Upper back pain: This pain can be centralized in one area or widespread across the upper back. It’s typically caused by frequent coughing that makes the surrounding muscles, particularly between the shoulder blades, extremely sore. I’ve heard this described as “rib cramping” because sometimes the pain can extend beyond the back area and travel around to the front of the chest cavity.
- Frequent headaches: Unfortunately, I have regular headaches that are likely due to chronic under-oxygenation. When I put on my supplemental oxygen, I often feel better, but headaches are a common symptom of IPF that I can’t avoid.
- Physical discomfort when lying down: Many of us turn to the comfort of our beds when we need to rest. Unfortunately, for those living with IPF, lying flat can be a considerable source of anxiety due to the inability to inhale deeply in this position. Lying on my back causes a bout of coughing that doesn’t subside until I sit up. This situation isn’t optimal for getting a good night’s sleep. My inability to properly inhale causes me both pain and frustration. Additionally, while lying flat on my back, I feel pressure on my chest.
- Exhaustion: Many people experience fatigue during their lifetime. However, I think IPF-related fatigue is a little different — not worse, but different — because our bodies are forced to rest or we risk our fatigue becoming a crisis. The inability to breathe freely and the constant coughing are physically and mentally exhausting. Our bodies can’t use oxygen as freely as healthy bodies can, which means our organs are deprived of what they need. This forces them to work harder, which leads to further fatigue.
How would you describe living 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
Cynthia
Well said, Charlene. I would add the feeling that you're not on top of your game mentally. I guess you'd call it brain fog, but it's often coupled with dizziness. When it's bad I feel I can't bring much to a conversation or a meeting.
Charlene Marshall
Hi Cynthia,
Thanks for reading my columns and getting in touch via the comments. As always, it is great to hear from you! I completely agree re: adding the feeling of being mentally drained, or not on top of your gain. This is something I've really struggled with, especially in the work place. Our beloved Kim also wrote a column on brain fog, and how it is a very real thing for patients with IPF, in addition to the dizziness. Just horrible! Thanks for sharing you experience this too (although I certainly wish you, and no one else did...) but it makes me feel less alone.
Hugs to you.
Charlene.
Peter Davies
Hi Charlene hope your feelin the best you can , have been following you and Kim for quite a while now am in my seventh yr with this. Now am awaiting my time on transplant list very difficult . I'm very sorry for the loss of Kim she drew you into her life it seemed as you do with your writing I have replied a few times from uk but don't seem to get thru frustrating tried all avenues but am not a techy hope I get thru now all the best for you Pete D
Charlene Marshall
Hi Peter,
Thank you very much for reading my columns and getting in touch via the comments. Doing as best I can everyday, although I admit that my heart hurts much more than my lungs this week; Kim's passing has been just devastating for our PF community. I always assumed she would thrive after getting new lungs. Thanks for sharing your thoughts, and writing to me. Sending you the very best for your transplant, and hope you can hang in there until your gift of life comes. I'll be thinking of you and hope to hear a positive update someday soon!
Kind regards,
Charlene.
Jojo
Hi Charlene
I am new to this comment place. Not sure where or how to ask questions, so will do so here. I have had the dry hacking cough for about a year and a half or so thought from a bad cold, but it never went away and had an X-ray just a normal one I kept thinking lung cancer. My Dr advised the radiologist saw a density in my right lung and recommended a CT Thorax scan which I had with an injection by IV. That resulted in him calling me at night a couple days later and advised not cancer but a type of interstitial lung disease called pulmonary fibrosis which he advised was a serious condition, I never heard of this. He said it was in the early mild stage. He was recommending me to a specialist, which he found out could not be done in my area as only one specialist and not taking new patients but they recommended a high resolution C T Scan and full breathing tests which are now booked. I don’t know what difference there is between the ct thorax I had and this type? After reading up on this disease and waiting for these tests which I hope will be more definitive I will ask to travel out of town to Toronto or Ottawa for a specialist appointment as I live in Northwestern On. After having one ct thorax scan isbit possible that they could be wrong or is PF that easy to diagnose, any info will help. Thanks
Charlene Marshall
Hi Jojo,
Thanks so much for reading my columns and for reaching out. I am happy to help answer questions as best I can, although sometimes my knowledge about particular questions falls short. Nonetheless, we're here for you! So sorry to hear about your cough that triggered all the testing which ultimately revealed pulmonary fibrosis (PF). I'd never heard of PF either, and my one piece of advice is to check out only credible websites for information. Dr. Google is not our friend :) I'm glad your HRCT (high-resolution CT scan) is booked and the breathing tests; this will give you a good baseline for your doctors to start treating you from, or to understand where the disease progression is at. I'm not sure the difference between a HRCT and a thorax CT, although I suspect they may be able to see more about what is in the lung vs. just seeing something in the lung. I can't be sure though. Toronto and Ottawa are both excellent centers! They will be able to review your tests and confirm/deny the diagnosis, as PF isn't always easy to detect from what I understand. I don't want to give false hope of course, but the more tests the doctors do the better they will understand if the interstitial lung disease they saw is PF. Please keep us posted- I'll be thinking of you!
Charlene.
Jojo
Hi Charlene
I left a previous post but thought I’d say I am 64 and still working full time but fatigued a lot my first post did not include this info and wonder if a biopsy should be done as well very confused and anxious about all of this. Thanks
Charlene Marshall
Hi Jojo,
Definitely ask your doctor about a biopsy - I didn't have one, and I know a few folks who did but it was a tough procedure to endure. Sometimes diagnosis can be made without them, but sometimes doctors recommend them too. Your anxiety is valid, just be sure to keep track of all of your questions or concerns so you can bring them up when you see the specialist. I find that helps.
Charlene.
Sandra Hackett
Thanks Charlene for sharing I learn a lot from this site about lungs fibrosis from Kim may she Rest in Peace and now you. Charlene I am getting a lot of dizziness and lightheadedness when I stand up. Have a blessed day.
Charlene Marshall
Hi Sandra,
Thanks so much for reading my columns and getting in touch via the comments. So sorry it is this cruel disease that brings us together, but I am thankful for the sharing and learning from one another we're able to have. I too hope Kim is resting peacefully now and no longer struggling to breathe. Regarding your symptoms Sandra, are you on oxygen yet? I would worry that those symptoms are a side effect of your 02 being too low, something really important to talk to your physician about. Hang in there!
Charlene.
Christie Patient
Hey Charlene,
Thanks for this interesting post. Describing physical pain is so hard. My mom described many of the same feelings, but also said that it felt like she had a band around her ribs, almost like corsett. I (without lung disease) have expereinced that sensation, and breathlessness/lightheadedness during anxiety attacks, which makes me about 100 times more sympathetic to what you face. I know the symptoms of IPF tend to cause anxiety, and I imagine they are compounded during attacks. Do you have any tricks to relieve anxiety when you are really struggling? How much does your mental state affect your symptoms? No need to answer here, I know those are big questions.. just food for thought perhaps for a later column. Thinking of you lots as we mourn Kim. I know it's been especially hard on you, and am sending much love your way.
Christie
Charlene Marshall
Hi Christie,
Thanks so much for reading my columns and connecting via the comments. I really appreciate your kind words, and I completely agree - it is so hard to describe physical pain! Sometimes I've used the same description of your Mom, almost like something tight is wrapped around my torso, squeezing my lungs. It definitely is a very scary feeling, and I was trying to describe it to a friend recently but I don't think I was doing a god job. I really appreciate having someone closeby when I am struggling with anxiety or breathlessness; it reduces my panic and increases feelings of comfort. I also really focus on pursed-lip breathing. Did your Mom do this? Great ideas for a later column. So glad you're now writing for us as well Christie, I really appreciate your unique perspective. Thanks for your kind words about Kim, she is missed so much.
Talk to you soon,
Charlene.
Suzanne
The pain could be from the diaphram a large muscle between the chest and the stomach area Might check for Hiatal hernia
PAUL DUKOR
I have had some doctors along the way (including some pulmonary) ask me what it feels like not getting enough oxygen while breathing. I stumbled upon an answer when I was walking with a procedure mask (everyday kind) that got wet in the rain before making it home. It became very difficult to breath through and my sats plummeted. So when a doctor asks me, I have them pull on a wet mask in the exam room for a couple of minutes. It is an aha moment for them.
Charlene Marshall
Hi Paul,
Thanks for getting in touch and reading my columns! Interesting that the doctors have asked you this - kudos to them, in an attempt to try and understand a bit more of what this feels like for their patients. Such a good idea to have the doctors do this with a mask, to give them a little glimpse into our daily experiences. Thank you for doing that and for sharing - a great descriptor for those who may be asked this by their doctors in future. Best wishes to you!
Charlene.
Robert Morrison
Hi Charlene,
You nailed the feeling of having IPF. Add to your comments those from Cynthia and Sandra and you have me almost completely covered. To date however, I have been fortunate that the coughing has not become a factor in my living with IPF. But having experienced an exacerbation I know that this disease can throw things our way at any time. If I had anything to add it would be difficulty with sleeping. I monitor my sats closely so I don’t think it’s a problem with oxygen, but I am not sure if my inability to get a good night’s sleep is a function of IPF or the medications I take for my IPF. Fortunately because it happens to me every night I have learned to live with it and through it. I still don’t like it but I no longer have the same anxiety I had when I first experienced it. And the silver lining is some nights I get a lot accomplished (bill paying, letter writing, etc.) which frees up more time during the day to do the things I most enjoy like reading and music. Anyway, keep writing. Your comments and those from other IPF club members give me a great deal of information and hope. Bless you all.
Robert Morrison
Charlene Marshall
Hi Robert,
Thanks for reading my columns and getting in touch via the comments. Really appreciate hearing from you - although, so sorry you're also dealing with IPF and can relate to what this cruel disease feels like. Glad the coughing isn't a factor for you, but I completely agree how scary this disease can be in its unpredictability and how it throws us curve balls at any point. I agree about the not sleeping - have you connected with your physician about this? I actually had to start a very small dose of a medication to help me with sleeping because it wasn't going very well for me either. I either tend not to fall asleep or wake up in the night, and being mentally tired just contributes to the physical difficulties of this disease. Kudos to you for looking at the silver lining! So glad you find our writing and comments beneficial, the PF community is a special one, I just hope some day we can all celebrate together because of a cure. Best wishes to you Robert.
Kind regards,
Charlene.
William J Mattila
This is different in that I take so many meds for different things that I. Experience. Like my lungs are getting tighter as the disease progresses.
Some days are better than others. And I forget to pace myself for lack of breath. Will check in more too. But O2 levels are dropping as it progresses.
As my IPF has been slow to spread but isn’t going to get any better. Ofev
Seems to really stop the further progress of IPF. I hope this helps people
Understand the hideous part of the denial you go through, like alcoholism is
the denial part is there.
Charlene Marshall
Hi Bill,
So nice to hear from you, thanks for reading my columns and getting in touch via the comments. Sometimes I have a hard time deciphering whether it is the medication side effects or the disease itself causing some of the physical difficulties I experience. It's really tough to have difficult days, isn't it? I'm really glad the disease is progressing slowly, although I wish none of us were dealing with this cruel disease. I hope you continue to do as well as possible on the Ofev. Thanks for writing!
Charlene.
Rich lu
Hi everyone. I’ve been back n forth with my symptoms. I have been scanned and pft’d and everything comes back normal. I do experience the burning in my chest numb fingers and minor lower back pain. Does anyone have voice issues? I feel like my voice is really froggy. Another is I have chest pain when urinating. Really struggling with all of this 39 with four kids.
Charlene Marshall
Hi Rich,
Thanks so much for reading my columns and reaching out via the comments. Although, so sorry to hear of your struggles! It doesn't sound like you've been diagnosed with IPF yet, but suspect a lung condition based on the symptoms? Sometimes this disease can be hard to diagnose unfortunately. Would your doctor offer to do a high-resolution CT Scan? Usually this is what reveals the most about the lungs. I don't have numbness in my fingers (except in the cold months of winter) and my back pain is usually up near my shoulder blades. Definitely worth investigating your symptoms though, I can imagine it to be very distressing with your kids. I don't have the froggy voice, but others have discussed this in the PF forums, if interested, you can join here: http://pulmonaryfibrosisnews.com/forums/ Please keep us posted on how you're doing!
Kind regards,
Charlene.
Anne Philiben
I have argued with my pulmonologist about pain to no avail. He claims there is no possibility of pain. Fortunately a cardiologist thought I might be having pain from the scar tissue from the pulmonary embolus (pulmonary doc disagrees) any way he ordered Isosorbide which I think diminishes the pain.
The other thing with IPF is it isn't hard to breathe like with COPD it is you aren't getting enough oxygen. Before I was diagnosed I would tell people that I had a severe anemia once. I could tell I wasn't getting oxygen. IPF felt the same way. No one listened to me anyway. Now I can really tell the difference and know when to check the pulse ox.
Charlene Marshall
Hi Anne,
Thanks for writing and sharing your thoughts with us on this topic. So sorry to hear that you've had to argue about pain with your pulmonologist - so disheartening to hear him say that there is no possibility of pain when he doesn't live with the disease. Did you find the Isosorbide helped you with pain? I agree with you about knowing when we aren't getting enough oxygen, and how it feels. While the struggle to breath isn't there, the breathlessness sure is and the striving to get more oxygen. Thanks for helping illuminate what it feels like to have IPF, although sorry you're going through this and had to argue with your physician. Breaks my heart!
Charlene.
Linda
Great site to see so many people sharing. Two months ago I was on holiday in Bali, getting breathless walking 200 metres. The plane trip home was horrendous, I coughed all the way, with the cabin crew giving me throat lozenges. On arrival, I could barely walk from the plane. My husband wanted to take me to ER but I said no, I would go to Dr the next day, which I did. ECG, Chest X ray, blood tests. Chest X ray was a shocker, showing an infection and "mild" scarring of the lungs, antibiotics and steroids seemed to work. My sats were (at rest) between 80-82, but no-one seemed concerned about it except me (hypochondriac OCD doesn't help); I kept saying, but when do I know if I need to go to ER, they said "when you feel breathless". Right, I did some activity and felt odd, and took my sats and they were 51. So, I said to my husband take me to ER. He did, I was seen immediately. I spent 8 days in hospital on oxygen and having test after test (hospital room, nurses, specialists, doctors, room attendants all absolutely fantastic). The specialists kept asking what symptoms I had, and I said well, none, except my sats go down on exertion. Anyway, they have diagnosed PF but don't know what type as yet, more tests and genetic testing early next year. I am on oxygen 18 hours per day + (supplied by government). I have gone and bought everything like a Portable Oxygen Concentrator, a carbon filter air purifier (needed desperately as we in Australia have terrible bush fires at the moment and the smoke is horrendous), masks, and a wrist oximizer thing that records drops in sat levels and heartbeats which is then downloaded to an app. The thing is, people look at me and say "what is wrong with you", and its sort of confronting, I go, "well, its medicine I need for a lung condition" but they want to know the ins and outs; the thing is, I feel absolutely fine. I have no pain, no swelling, very little coughing, and when "resting" feel like a million bucks, sleep well at night (have to use tape on the cannulas because they dislodge during the night) just when I exert, like go to the loo, have a shower and wash my hair, go to the supermarket or prepare a meal, the sats go downhill. I have a treadmill but have not started to use it yet. Sorry to rabbit on so much, but I take comfort that Jerry Lewis was diagnosed with PF in 2001 and passed away in 2017 aged 91, so I take comfort from that and he is my inspiration as I don't fancy falling off the perch any time soon. Thanks for reading. Linda
Charlene Marshall
Hi Linda,
Thank you so much for reading my columns and connecting via the comments. While I wish none of us had to deal with this cruel disease, it can be so helpful to connect with others who have it. I'm so sorry to hear of your experience en route home from Bali - to experience persistent coughing and shortness of breath on a plane must have been so scary! I'm so glad you did go to the doctor, especially when your saturations were 51 as this can severely cause damage to your brain and other organs. I'm guessing the oxygen really helped you? Glad you've got everything you need to help manage the disease - keep that oxygen probe closeby so you can manage your saturations regularly. This disease can be so tough, because it doesn't always include other symptoms. Up until I got pneumonia about 6 weeks ago, I didn't have any symptoms either and only needed oxygen as needed and at nighttime. However, that has changed a bit for me now, though I am slowly trying to work at getting back to my baseline. Glad you're open to sharing your experience Linda, thank you for that. I know many patients with PF (of varying types!) and are doing quite well after 10+ years.... that "3-5 year prognosis" statistic is outdated ;)
Take care and wishing you the best in the upcoming year.
Sincerely,
Charlene.
Mo
I am undergoing tests for lung fibrosis at the moment (After HRCT revealed scarring) but everything has been put on hold because of the Coronavirus. Totally understandable of course but a worrying time all round now. These comments are very helpful as I have had so many of the symptoms mentioned here but could never put them together to form a picture or describe them properly. So thank you.
Charlene Marshall
Hi Mo,
Thanks so much for reading my columns and reaching out via the comments. Really sorry to hear that you're being investigated for a fibrotic lung disease, and even more so that the testing has been halted because of COVID. I can imagine that is very anxiety-provoking and worrisome for you. I'm glad you find the comments helpful, feel free to write us any time. The PF News forums (www.pulmonaryfibrosisnews.com/forums ) are a great platform for support from other patients living with ILDs. Hang in there and take good care.
Charlene.
Lisa
Same situation for me. I had suspected Covid-19 pneumonia (testing was not available, so based on ineffectiveness of all treatments, covid suspected Dx). My SOB is almost constant and awaiting CT scan with contrast to assess for fibrosis but no booking yet due to all the disorganized logistics of care at the hospitals. I feel your same frustration and desire for rapid assessment and answers. Good luck!
Lisa
Charlene Marshall
Hi Lisa,
Thanks so much for reading my columns and reaching out via the comments. So sorry to hear of your suspected COVID case, and yes, I'd certainly agree with you about the disorganized logistics of care at hospitals right now. I hope you can get your CT scan soon and that it reveals good results for you! Take care, Charlene.
Virginia Schultz
HI! I'VE BEEN DIAGNOSED WITH PULMONARY FIBROSIS. I HAVE ONE QUESTION: I HAVE A PAINFUL AREA AT THE BOTTOM OF MY RIBCAGE AND JUST BELOW THAT. HAVE ANY OF YOU DEALT WITH SOMETHING LIKE THAT?
VIRGINIA
Charlene Marshall
Hi Virginia,
Thanks so much for reading my columns and reaching out via the comments. However, so sorry to hear you're dealing with pain in your ribs! Unfortunately, I'm not in a position to offer any type of medical advice as I do not have a medical license, however, I can share my personal experience with you regarding similar pain that I've had to your description. Usually when I have acute (sudden onset) pain under my ribs, or even in my back, it is indicative of an infection for me like pneumonia or viral/bacterial. If your pain came on suddenly, I'd recommend calling your physician (or his/her assistant/nurse) to see what they recommend. If it is a gradual onset, could it be an injury or due to coughing? I know sometimes I get pain from my persistent coughing.... does any of this sound familiar? Sorry you're dealing with this. Please keep me posted on how you're doing.
Charlene.
Virginia Schultz
I WROTE YESTERDAY AND DON'T SEE MY MESSAGE HERE TODAY. DID I DO SOMETHING WRONG?
Charlene Marshall
Hi Virginia,
I just replied, let me know if you receive it :)
I have lots of messages coming in so sometimes it takes me a bit of time to get back to everyone but you submitted your question successfully.
Cheers,
Charlene.
Virginia Schultz
Hi Lisa!
I was diagnosed with pulmonary fibrosis about two years ago. I am short of breath, have upper back pain that's quite severe, and I have a tender area along the bottom of my ribs. It extends to under my ribs and is tender to the touch. Have you experienced that? I have not been able to see my doctor for quite some time.
Joyce Simpson
Hi Charlene, I went to the doc about 5 weeks ago because of breathlessness which was getting worse (I thought it was because I put a bit of weight on and felt unfit doing simple tasks but I'm still working as a support worker and age 62) . He examined me and took bloods. I got an xray at the end of that week. The doc phoned me a week later with results saying I had scarring on both my lungs but didnt detect cancer. He asked if I heard of fibrosis but I had no clue.My doc asked about my history to see if i have been in contact with asbestos. I have now been for a ct scan and awaiting the results from that hopefully this week. This is frightening me and I'm not sleeping properly. I am on 2 different meds for high blood pressure and blood thinning tablets and also lansoprozle for a hiatus hernia. I hope I haven't bothered you too much with my problems but now need to know more about lung fibrosis. thanks for reading. Joyce
Charlene Marshall
Hi Joyce,
Thanks so much for reading my columns and reaching out via the comments. So sorry to hear you're going through the agonizing wait of getting test results. Have you heard anything about the CT scan yet? My one piece of advice is stay off "Dr. Google". It's really scary when you search fibrotic lung diseases/IPF online, so its really important to use credible sites for information. People don't ever apologize for writing, we are here for you and know that you can reach out anytime. It's comforting to have others who truly "get it" when it comes to this disease. Joining the PF forums: http://pulmonaryfibrosisnews.com/forums/ is a great place to get support as well. Take care and keep in touch!
Char.
S
My father is in the final stage of ipf. the disease being incurable, it is EXTREMELY DIFFICULT to watch him waste away. its bringing a lot of tears to my family. it started with a continuous dry cough and shortness of breath few years back and now he is completely bed ridden with extreme shortness of breath and so much suffering. he is on oxygen 24/7 requiring about 8-10 litres per minute at rest! We are considering palliative care to provide him maximum comfort possible and reduce his awareness of what is happening to him probably by keeping him sedated at almost all times.
Does anyone know about palliative care?
also, i would like to add, apparently all idiopathic illnesses are emotion driven. someone i know who is into healing sciences told me so. i do not know how far this is true. when any negative emotions (anger, hatred, rage, jealousy, grief, fear, guilt, any kind of stress, etc) are harbored for months/years together, they can manifest into serious deadly illnesses. in the mind body complex, what you think and feel manifests in flesh. IPF is most likely due to extreme guilt, berating yourself over something you may have said or done in the past. we all have trillion cells in our body. when we think such things, we are sort of conveying the same message to all our cells. and then our own body turns against us and behaves abnormally. instead of healing, protecting and keeping the body healthy, it begins to destroy the body thinking ...ohh its bad, it has done something terrible, etc.
Charlene Marshall
Hi S,
Thank you for reading my columns and reaching out via the comments, though I am very sorry to hear about your father. It's so difficult to watch our loved ones suffer, and arguably, IPF is one of the cruelest diseases out there because breathing should never be hard work. Your family considering palliative care for him to maximize his comfort is one of the bravest and loving things you could do for him, albeit likely the hardest too. Lots of information can be found on the forums about palliative care: http://pulmonaryfibrosisnews.com/forums/
Interesting comment about linking IPF to emotions. Personally, I don't believe that but I know others can differ in their belief. I was diagnosed at 28 so I didn't have much of a life to experience those negative emotions before I got sick. It does help to have positive thinking and hope though! Take care and thanks for writing.
Char.
Robert K
Hi all. Your stories and words are so incredible helpful to the world. We need to hear from more patients in order to understand signs in illness in general and what the onset path is. I was hoping I could get some insight.
In March of last year 2020, I got a dry cough that wouldn't go away, in April I had rapid onset of chest burning, pressure, and breathing problems. After a severe two weeks, I had a good day and chalked it up to a virus (maybe even Covid) and that I was over it just like any illness I have had in the past. But the breathing issues, cough, chest burning and chest pressure came back, then went, and have come and gone since. But usually I don't go a day without symptoms. Mornings are usually best for me. Back in 2020, I was given inhalers, and GERD medicine and am still taking those, but they don't resolve the issues and I don't feel what I thought I new as reflux (unless it is silent). I never had reflux problem prior. But, I was diagnosed with GERD in Oct 2020 via endoscopy, but again, meds don't work and the breathing problem is the main and most uncomfortable and painful symptom and I don't really feel heartburn and don't see an direct relationship to when I eat in the sense that I can eat like a bird (which I have been) and still have the same problems. GI docs have dismissed GERD as the cause of the breathing issue, but haven't offered any other direction, other then must not be anything then. A regular CT in May, 2020 didn't show fibrosis, but they were looking for cancer. But I am concerned after more than a year where I cycle between feeling manageable to being in great distress that I know something is not right and unfortunately it matches to a tee many of the IPF symptoms. I also worry about my past exposure occupationally. I was a sculptor, ceramics and wood shop person, who also smoked. That was a little over 15 years ago, but still worry about its influence. Since my original CT and Pulmonary test came back ok, the pulmonologist has just disappeared and feels like nothing is wrong. I have never had anxiety issues, and have been an athlete and an active, happy single dad, who is a primary care taker to my 10 year old daughter. I am on here to get some insight. Is it reasonable that maybe early stage IPF wouldn't show on a regular CT and my pulmonary tests are okay> Studies I read indicate that is possible early on. But I am wondering why all my doctors are just saying nothing wrong here. Any advice on particular tests that I should push for? DoI just have to wait until it gets worse and show up on an 02 to get recognition that there is a problem IPF or something else? I just wanted to get patient insights on any challenges there were to get a diagnosis. I had really low 0xygen last year, down to 80, but I have stabilized. And when I get checked at the doctor, I often can be in a good wave symptom wise. Not looking for a diagnosis here, just maybe some insight on the difficulties and length of time it might take to get a diagnosis. I know the early you can treat, the better the outcome.
Charlene Marshall
Hi Robert,
Thanks for reading my columns and reaching out via the comments. I'm sorry to hear you're dealing with these symptoms; this disease can be so hard to diagnose and the symptoms really mimic so many other illnesses. I'm glad you're continuing to seek out your own information, as patients advocating for themselves is really important, in my experience anyways. This would be an excellent question to ask others in our PF forums:http://pulmonaryfibrosisnews.com/forums/ ... it is a platform filled with amazing patients, caregivers and even some physicians who might be able to share their thoughts with you. Getting a diagnosis of IPF can be very hard, though there are some amazing organizations out there working to change that! Have you been seen at one of the Pulmonary Fibrosis Foundation's Centers of Excellence? You can find them on their website, and I always encourage folks to get in there if they can as they are specialists in fibrotic lung diseases. As for the GERD, I do know many patients have both GERD and IPF.... you can read more about previous conversations regarding this on the forums. We'd love to hear from you and hope we can offer some insight there.
Charlene.
Ellen Pride
I recently started treatment with Ofev. The doctor warned me that one of the side effects of this med is severe diarrhea and that I should eat a protein meal with the pill. The first month I had no side effects. The second month I started with no appetite, diarrhea,extreme fatigue, and shortness of breath. I am on oxygen 24/7 2. Is anyone else on this drug and are you having side effects. My dosage was 100 mg. Twice a day. We stopped the drug for a week and started back with just 100 mg. Once a day. The shortness of breath really concerns me. Anyone else on this med and your side effects!