Lag Between Recognition of IPF Symptoms & DiagnosisPosted by charlene-marshall on June 18, 2020 at 10:27 pm
I recently recorded a flash briefing for Pulmonary Fibrosis News that really resonated with me. A U.K. study examined the time between patients’ recognition of idiopathic pulmonary fibrosis (IPF) symptoms and their time-to-diagnosis. Unsurprisingly, the study revealed a lag between when symptoms were first recognized and a diagnosis of this life-threatening lung disease.
While interacting with patients on this forum platform or via e-mail, I regularly hear that the time it takes them to receive an IPF diagnosis is lengthy. For me, it took various medical teams to confirm I had IPF and the process of determining that took 13 months. According to the results of this study, 13 months is not lengthy at all, as some patients (about 50% of those studied in the above article) took about five years to be diagnosed.
What was the process like for you to get diagnosed with IPF/PF?
How long did it take?
MemberJune 23, 2020 at 6:44 pm
Hi Charlene – I was in the Philippines when first diagnosed with ILD (interstitial lung disease) early October 2016 but I was sick for a month before going to the hospital for the x-ray. ILD/IPF are rare here so I did not understand the diagnosis when the doctor said ILD so I asked what is that like walking pneumonia? – Yes. That was that. Took an antibiotic that did not help much. So January 2017 I knew I had a serious lung problem and got a refill on the prescription but no help.
I returned to the USA April 2018 and went to a pulmonologist in early May. She sent me for an MRI which produced the official diagnosis of IPF in June 2018. So I was increasingly symptomatic (slightly) for about 21 months before the MRI results.
Now back in the Philippines since May 2019 and have had a slow progression but I do a lot of different things to help mitigate this disease. I have not used O2 since returning but there are sometimes I it would help at night.
Stay well – Steve
MemberJune 23, 2020 at 11:12 pm
In 2011 my endocrinologist suspected I had pneumonia and sent me to a pulmonologist who, after chest X-rays and breathing tests, determined I indeed had pneumonia and also diagnosed interstitial lung disease which I understood to be scar tissue probably from pneumonia. I was supposed to follow up in a year, but our insurance changed and this doctor was no longer in network. I felt fine. My breathing was good. I cruised through five years feeling normal. I’ve always been high energy. Then about four years ago I started coughing. I have awful allergies from May through December, but I was coughing all year long. One PA suggested I had just gotten into the habit of coughing! My primary care doctor (with the knowledge of my ILD) said my lungs sounded good, couldn’t hear any crackling, and diagnosed me with with allergy onset asthma. I still felt horrible. Then I started getting worse to the point that I didn’t want to go anywhere or do anything because of my coughing – it was embarrassing and exhausting! I made appointments with an allergist and with the pulmonologist. That was in September and November of last year, 2019 and it was a high def CT scan that told the story. I do have allergies nine months out of the year, but was diagnosed with IPF by Thanksgiving. I started OFEV in mid January. Praying it does its job! So, if I had gone back to my pulmonologist sooner, I feel sure it wouldn’t have taken four years. Hindsight!
ModeratorJune 24, 2020 at 9:22 pm
Thanks so much for sharing your story with us, though so sorry to hear of your diagnosis, cough and SOB. It’s awful, isn’t it? I’m working with a project coordinator to really try and highlight a persistent cough as something potentially problematic, helping people realize that and looking into it. Like you say, it’s so easy to overlook a potential problem when you’re feeling well. I hope OFEV works for you as well, and that the side effects are minimal. Thanks for sharing your story, I truly believe it is through experiences like ours that we can help others better understand what is involved in getting an IPF diagnosis and advocating for themselves.
ModeratorJune 24, 2020 at 9:28 pm
It’s so nice to hear from you my friend!
Wow, 21 months of being (mildly) symptomatic? That must have been so tough! I’m glad the Pulmonologist in the US listened and ordered the diagnostic testing to at least give you an answer for the symptoms. I remember being so frustrated with my cough and shortness of breath that year, before I had an answer…. not that I wanted IPF to be it!
Glad to hear your progression has been slow, even since returning to the Philippines last May. Keep up the great efforts to mitigate symptoms, I’ve been thinking of you and glad to hear from you.
MemberJune 25, 2020 at 1:17 am
Hi Char – I have been remiss in responding but get online here when I can. I seem to get notices better lately – hope that continues. Have you fully recovered from the virus (CCP)? I did not want to remind you of it and I am greatly amazed you worked it through. I know if I get the virus I cannot survive.
The doctor I have followed since the beginning of this disease has some good info from time to time. And I am taking zinc and quercetin because he does and he is exposed to the virus repeatedly. I hope to be allowed outside soon as all over 60 are in lockdown.
Stey well – Steve
MemberJune 25, 2020 at 10:59 am
It took five years for my diagnosis of hypersensitivity pneumonitis and even that was accidental. I had PE five years ago and that took several weeks to diagnose. First I was told my breathlessness was because I was fat. I went home and went on an exercise binge and a week later I couldn’t walk and my lips were blue. Then I was diagnosed with severe asthma and put on prednisolone. Then when it had no effect, my GP finally sent me to the hospital where they discovered multiple clots in both lungs. I was bed bound for two months and only able to sit up for another. A year passed and I was still constantly breathless but nobody could figure out why. Finally I became horribly ill, ended up in hospital bleeding internally and with a terrible chest infection. A scan of my kidneys crossed the bottom of my lungs – lucky for me. In the meantime, I was begging my GP to help me and asked for a lung function test. Then I was diagnosed with COPD, which I knew was wrong – it doesn’t take a genius to look up your values and find that you have a restrictive rather than an obstructive pattern. I ended up in a horrible fight with my GP and refused to leave his office until he reluctantly referred me to the hospital chest clinic several months in advance. A week later the chest clinic rang me and told me I needed an urgent appointment because of what they had seen on the scan. Finally, FINALLY, after five years I was diagnosed with ILD. The first time I went to the GP, when she told me I was fat and all I needed to do was lose 20 lbs and I’d be fine, I told her my dad had died of IPF 30 years before and I was scared because I had all the same symptoms. Why did it take so long to diagnose me? Well, let’s start with the GP’s fat phobia. Like many fat people, the minute I turn up in the GP office, everything that is wrong with me is blamed on my having a fat body. The medical profession really needs to stop it’s “war on obesity,” otherwise known as the “war on fat people.” As it happens, I was thin as a stick for almost my entire life until I broke my ankle 10 years ago, got DVT, and post-thrombotic syndrome. One would also think that a person who has had two DVTs might have PE when they can’t breathe. Anyway, that’s my story. I’m not particularly happy about the length of time it took for a diagnosis, but hey ho, that’s the way it goes.
MemberJune 25, 2020 at 11:05 am
I should also add that I discovered that having ILD is a risk factor for PE, just as having two prior DVTs is. It still irritates me that nobody could connect the dots, just see a fat person sitting in front of them. I’m not alone in this kind of experience and it is infuriating. And no, I’m not going to diet, which is useless and works in less than 5% of people over 5 years. I’ve been yo-yo dieting for years and finally have found peace and a sense of well being in my fat body. I respect my body and I will not abuse myself with food restriction ever again. Yay me!
MemberJune 25, 2020 at 3:53 pm
I had a way different experience than most. I woke up one morning 8 years ago and could hardly walk because of the pain. Each morning I woke thereafter different parts of my body was in pain..finally after about a wee9k of this I figured something else is going on and went to immediate care where they took blood I and chest exhausted and called me the next day that my inflation rate was off the charts and I also had interstitial lung disease. What’s that I say? Pulmonary Fibrosis and rumetoid arthritis. So needless to say sometimes I don’t know if pain and fatigue is from which thing. Being treated for RA with Remacade and predasone ILD now with Ofer..
MemberJune 25, 2020 at 7:42 pm
My diagnosis was completely incidental and unexpected – in 2009 I had a high res CT scan (I don’t even remember the reason for the scan) and the UIP pattern was so obvious in the scan that I was diagnosed from that. I don’t recall having any symptoms at the time. Looking back at older records, I had a chest Xray from 2003 that mentioned damage from previous bronchitis attacks that pulmonologist thinks may have been early indicator of IPF. Apart from the dry cough that I mostly wasn’t aware of because of being on long term paracetamol/codeine for back/hip pain, I only really started having life limiting symptoms about 18 months ago. The deterioration since has been pretty rapid and inexorable. On oxygen for about 10 months now.
MemberJune 26, 2020 at 5:50 am
Petting my outside cat set off an asthma attack. Went to doctor and got an inhaler. Did not get better. Dr ordered an exray and something was seen. Next got a cat scan and was told I had IPF, go to pulmonary dr.
I did. He confirmed the diagnosis and said come back in two weeks. Scheduled lots of blood tests, pulmonary
tests. I asked where exactly was the scarring? He said we will do a biopsy. Come back in 4 months! Just don’t feel I am getting much information. What are we waiting for? Have read they don’t do biopsy unless they aren’t sure of cause. I am in Limbo, hoping, praying it could be something else. I know I have “something” wrong in my lungs, I can feel it. Feels like pneumonia. No wheezing yet.But, Oxygen levels are in the 90’s and have dipped when I am exercising. I walk and I have no cough. I have an oximeter and practice breathing with a spirometer. Usually 2500 ml volume. My joints do ache in the morning. Doctor just didn’t give me the findings from breath tests. Why not? Says I am highly allergic to bird feathers. Could it be something else? Got rid of my down pillows and comforter. Going to a new doctor next week. I just feel I am sitting on a powder keg waiting!!!! Any suggestions??
MemberJune 26, 2020 at 4:39 pm
Hello Jackie, it’s unfortunate you have had to endure ineptitude with recent physicians. I would suggest having a list of questions to ask your new doctor. Have everything written on paper on what you want to know. You have a right to know what is going on with your health and because you have entrusted your care to this specific doctor they should be able to answer all questions and explain the diagnosis in layman’s terms. Please keep us updated on your visit. Take care, Mark.
MemberJune 26, 2020 at 8:10 pm
@friend – Hi Lisa – did you ever get tested for Lyme disease or similar? – Steve
MemberJune 27, 2020 at 12:54 pm
My diagnosis, like Jill T’s, was sort of accidental too. Although I had talked to my doctor about some shortness of breath on exertion, we felt it was due to all the usual suspects:age, weight and allergies. It did respond somewhat to allergy medications, so I really can’t blame the doctor. However, a few months later I had a strange recurring pain in my right ear/jaw area that traveled into my back and chest. I was sent for an x-ray and when the technician said something about my being there for changes in my emphysema (?!) I knew we were in a whole different field. I was somewhat shocked at that because although I had been a smoker for several years, I had NOT been one for over 28 years. Went back to the doctor and was referred to a pulmonologist who saw me and mentioned he thought it might be ILD, but the hospital was closing his office in town and moving him that very Friday! This meant time for another referral, which took about six weeks before I could see someone (insurance was another issue here) and she concurred about the emphysema but thought we could “wait and see” about the scarring in my lungs since there wasn’t much visible. It was another 14 months before the diagnosis was conclusive. About par for the course, it seems, or maybe a little better than some. I believe part of the issue here is a lot of older patients like myself don’t question their doctors very much. Our own education is lacking, which adds to the problem. I am now on Esbriet and seem to be in a stable place, for which I am grateful. Karen
ModeratorJune 27, 2020 at 8:00 pm
Thanks so much for sharing your experience with us – the journey to diagnosis seems to be a difficult one, and one that seems different for us all. Similarly to you responding to some of the allergy medications, I also responded to some of the inhalers, antibiotics, etc that I got for suspected bronchitis and other acute infections. In hindsight, I don’t know for sure if I improved much with them, or whether it was psychological, but this is why I didn’t suspect anything more concerning initially either. I was about 13 months until my diagnosis. Thanks for sharing, the more we can educate others the better I believe!
ModeratorJune 27, 2020 at 8:13 pm
So glad you’re getting more notifications now and pop on when you can! I know I appreciate hearing from you, and other members do as well 🙂
I am almost fully recovered from the virus, just still struggle with fatigue but that is hard to know whether it is IPF or the virus, as fatigue worsens of course with disease progression. I do have my first “post-COVID” PFTs on Monday … wish me luck. Aside from that I still have the weird rash associated with the virus but have recovered well.
I hope you continue to do well and stay safe! I know the lockdown restrictions are so tough, take good care and try to do the things that bring you joy.
ModeratorJune 27, 2020 at 8:23 pm
Wow, thank you so much for sharing your journey to diagnosis with us, but I am so sorry to hear of your experience! Oddly enough, I just had a conversation with a friend who also was “fat shamed” recently at a doctor’s appointment regarding her restrictive airway disease. It was just awful, and I’m sorry you also had a similar experience, especially when something was obviously wrong! Did that original doctor ever find out your final diagnosis of HP or did you cross paths with him/her again? An apology is certainly warranted! Glad you’ve found peace and contentment with you body. I always say, “its the only one we’re going to get”, so I try to treat it right but also enjoy some favourite foods that aren’t always healthy. It’s about balance! 🙂
Thanks for writing and take good care.
MemberJune 28, 2020 at 2:46 am
Hi Charlene – That is really good news about the ccp virus for you (I call it that because of what the leadership has caused – and I watched a 9-part documentary about the roots of the ccp and it is bad). So not to wax political but my observations and other think tank conversations warn us about the ccp. So I do hope a full recovery for you as there are potentially lots of future complications. I just know that if I get the virus, I cannot survive over here. Seems we might be here a long time as the world experiences a flare-up.
Are you using EGCG? It has helped me and seems similar to Wei labs. Since I have no real doctor over here, I feel blessed to have access to the internet for research and this terrific forum here. I am still using Serrapeptase, Nattokinase, B complex and D vitamins (D3 with K2 M7), started EGCG a few weeks ago. I have some zinc and quercetin and azithromycin just in case. These things plus the hot lemon juice and a small amount of raw smashed garlic do help a lot. So no O2, or scripts for the lungs.
I hope your PFT’s exceed your expectations for the better.
Stay well – Steve
ModeratorJune 28, 2020 at 10:09 am
Thanks so much for writing and for sharing your experience with us. So sorry to hear you woke up with pain, and that it became widespread – I am glad the doctor’s were on it so quickly and have a plan in place to help better manage the symptoms. My inflammation rate was also very high recently, so we’re monitoring that closely. I hope the medications help, and that you can tolerate OFEV okay. Stay well and thanks for connecting.
ModeratorJune 28, 2020 at 10:14 am
Thanks so much for writing and sharing your experience with us. Are HRCT’s easier to obtain in Australia? They are one of the harder tests to get here, not really sure why but I remember having to ask for it with a suspected ILD, they didn’t offer it to me. Sounds like the UIP pattern that showed on the scan was quick to reveal IPF. I hope you’re managing okay on 02 Jill, I know it sure can be a pain having to lung a tank or concentrator around. Thanks for writing, and glad you didn’t have too long of a lag between symptom recognition and diagnosis, though I wish none of us had to deal with this cruel disease!
ModeratorJune 28, 2020 at 10:37 am
Thanks so much for writing, and yes I agree, we’re certainly learning a lot more about the virus and its long term impact as people recover. I’m curious to see what my PFTs reveal, and then I have other appointments set up as well. They’re still learning so much about this virus. I hope you can continue to stay well, as much as being in lockdown is a pain, it’s definitely important.
I’m not using EGCG … yet. I’m glad it has helped you, and I am considering taking it based on the project we’re looking to take on here at PF News. I actually had a video call on Friday with Dr. Chapman out of UCSF who is one of the lead researchers on the New England Journal of Medicine (NEJM) study. Glad the other things you’re taking have helped, and that you continue to do your research!
MemberJune 29, 2020 at 1:03 am
Hi Charlene – breaking scientific news is always denied, discredited, or ignored until it isn’t. We have to test and retest for ourselves as medicine, being cautious in discovery, (rightfully so) is too long of a wait for many of us.
All success to you in your coming tests.
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