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Post-COVID ILD or IPF?
Hello, everyone! This would be my first post here.
My name is Ian. My father who is almost 68 years old is undergoing screening for ILD.
He had COVID-19 in 2021 and was hospitalized. He received supplemental oxygen, anti-viral medication, and corticosteroids, but was never sent to the ICU. He was discharged with 3L of oxygen and was on oxygen for several months. The initial CT scan showed scarring of both of his lungs. He has persisting cough, breathlessness, and fatigue. After a few months, he was able to function without oxygen.
After about three years after the COVID infection, the cough persists. He became more breathless after exercising. So we seek help from two ILD clinics available in our country. We live in the Philippines in Southeast Asia, so it is difficult to find a hospital similar to Center of Excellence (COE) in the USA.
The first ILD clinic initially dismissed post-COVID fibrosis. They believe that my father already had undiagnosed pre-existing ILD prior to contracting COVID-19 in 2021 and the virus only accelerated the progression of the disease. There is no previous CT scan before COVID-19 to compare. Although a chest X-RAY in 2019 mentions interstitial densities on both of his lungs.
The second ILD clinic initial impression on the HRCT is that it is consistent with a non-IPF diagnosis. The alternative diagnosis to consider according to the radiologist is fibrotic post-COVID ILD (PC-ILD).
The multidisciplinary discussion of both teams are not yet complete. So we are still waiting for further information about his diagnosis.
Currently, my father is not on supplemental oxygen. His oxygen saturation at rest is 96-98%. His PFT result is still in normal range, FVC is 81% and DLCO is 80%. Although, last year his FVC is 86% and DLCO is 91%. But this was done in a different institution.
We are very anxious. Has anyone has similar experience diagnosing IPF after COVID-19?
Thanks for your thoughts!
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18 Replies
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Hi.
My wife has the same condition as per a second opinion Dr.
For what I understand it may be not progressive, but, not guaranteed, we monitoring via pft every 6 months, and her numbers slowly improve, now her fvc is 96% up from 84% last year.
She is having another lft in August and I will post the results. She is not taking antifibrotics but excersize with weights 3 times a week watches what she eats and keep a healthy weight, fortunately she only have the occasional cough and she is never tired, however she shows moderate honeycomb and uip.
Now she had improve her anxiety by taking drops mullein tea.
Alex
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Hi Alex!
Thanks for sharing your wife’s experience. I’m happy to know that she is improving! The PFT results look good. I hope she continues her recovery.
You’ve mentioned that her scans shows UIP pattern (with honeycombing). This is a typical pattern seen in patients with idiopathic pulmonary fibrosis (IPF). Did your doctors mention if this is due to COVID? Was your wife in ICU or mechanically ventilated when she had COVID?
My Dad’s scan mentions reticulation and traction bronchiectasis, peripheral and basal predominant without honeycombing. However, we did see that my Dad’s PFT results shows progression of the disease.
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My diagnosis is IPF. I just went to my new pulmonologist a couple weeks ago and he ordered new PFTs. I haven’t had a P pulmonary function test and 2 1/2 years, so I was anxious to see the results. I have actually had a slight increase in long volume and in my overall FVC. My doctor said that is the result of the amount of exercise I do and the lung exercises specifically that have helped to maintain Lung function and volume. I’m still hovering around the 30% lung function mark but it’s great that I’m not declining.
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His pattern sounds identical to mine. I’m a 66 year old male. Covid in early 2020, missed diagnosis twice and was diagnosed with double pneumonia. Then after CT Scan was diagnosed with advanced pulmonary fibrosis with 31 % remaining lung function. I’ve been on oxygen 24 X 7 since 2021. See my YouTube channel for the things I’ve done to stay active and healthy. Contact me for any questions. I’m retired and spend all my time helping others recover. I don’t need money so it’s all free. Email is [email protected] YouTube: https://youtube.com/@leefogle4383?si=gM4NNZwUu0bAFNXc
youtube.com
Healthy active living with lung disease while aging with grace, strength & wisdom from an Ironman Triathlete. The story of my journey into advanced lung disease and near death in in my book A Matter of Life and Breath: My … Continue reading
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Hi Lee!
Thanks for your response! I actually found your YouTube channel before finding you here. Your determination to stay fit and healthy is truly remarkable and inspiring! I will ask my Dad to watch your videos. I actually suggested to him your acupressure technique to relieve cough.
I’m curious as to what your diagnosis is. Is it post-COVID ILD (PC-ILD) or IPF?
Please continue to inspire other people with PF. Looking forward to learning more from you.
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Thanks again for the reply!
I’m also so happy for the results of your PFT! An increase in FVC and TLC is very remarkable! I hope the same will happen for my Dad. He will undergo pulmonary rehab for 8 weeks. I hope the exercises will help him a lot.
Are you taking anti-fibrotic medications?
Keep up the fine fight!
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Hi Lee
You are my hero. How is the Dr noble protocol doing for you? I only incorporated zinc for my wife, but, diet and exercise, and good rest is keeping her very healthy and asymptotic.
Like you 2 doctors suspected that a post covid fibrosis kicked some small one she had. The question now is about progression, as I pointed in another post, we will know if it improves like last one o remain stable.
Seen all your videos and follow many of the excersizes.
You are an example that many should listen.
Apparently antifibrotics are not recommended for post covid pulmonary fibrosis, however, there are trials on the go. Our respirologist is on the waiting and see, as he thinks, like another doctor, that it will be a slow progression or stable .
All the best.
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The Noble Protocol is one of so many things I’m doing that I’m actually not sure what’s working and what’s not, but the basics of the protocol have just good common sense health attributes. I feel so good every day, I have such great stamina and just never feel fatigued so I don’t want to stop any of the things I’m doing! Also we know zinc is important for health on many levels and we know NAD+ levels decline with age so improving it is sensible, so I will continue those. I did stop taking resveratrol after a year mainly because of extensive research on its questionable efficacy vs the hype. Also it has been said in some reports to blunt the positive effects of exercise.
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Hi i4n
As far as I coul find out pcpf also shows uip and honeycomb in some case. The imaging overlaps, the is why is so difficult to detect ont to the other.
My wife was never intubated or in a hospital, she had a case that we deal with it at home.
Reading many articles, shows that 44% of people with covid will develop pcpf.but still do not know
A) How to treat it.
B) what the progression is like.
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Hi Alex!
Thanks for the reply! Despite the UIP pattern, it does sound more like PCPF considering the improvement in her PFT. I believe in cases of IPF, the FVC only goes downhill.
I hope she will continue her recovery!
Ian
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I had the original Covid in Feb. 2021 which went into pneumonia. Hospitalized for 3 weeks. My discharge said scaring due to covid pneumonia. At that time I left the hospital on ox 24/7and got down in a few months to 2 only at night. Also walking was an issue as ox would drop down into 60-70’s almost immediately. Used a walker for several months. Also diagnosed with long covid that year as well.
In 2023 I was diagnosed with IPF and mixed connective tissue disease. I do take hydroxychloroquine 200mg 1 tab 2x daily and mycophenolate 500mg tab 2 2xdaily
In 2024 I was told my cholesterol was high and the CT showed Atherosclerosis. taking rosuvastatin 10mg 1 tab daily. My A1C is 5.7
I’ve been in Pulmonary Rehab for 2 1/2 years and do not have any ox during the 45 min while exercising.
Couldn’t finish the PFT in Feb. but think I can now. I’m going to ask to retake it.
I do have other issues from covid effecting my legs etc.
I’m 75 years old hope this helps answer your questions.
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Hi Mary!
Thank you for your reply. I’m so grateful to hear similar experiences after COVID. Do you take anti-fibrotic medications to slow down the progression of the lung scarring?
I’m glad you seem stable and still not on oxygen 24/7 as of this time. I hope you get good results from your next PFT. My Dad had trouble finishing the test as well since he is coughing a lot.
Ian
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Update:
The doctors are convinced that the fibrosis was due to COVID infection, but they are not putting IPF aside. They want to wait for 3-6 months to see if the disease will progress before recommending anti-fibrotic medication. Do you think this is a reasonable approach? I’m afraid of losing more lung function over the course of 3-6 months before starting on OFEV or Esbriet. They also recommend pulmonary rehab while waiting for the next follow up.
Looking forward to your thoughts on this.
Ian
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Hi i4n
Our dr. Says ipf but, has doubts of covid pf. He wants to see some more pft before starting medication ad she is totally asymptotic.
So I think the only way to know for them is evidence of progression, is only about time, dangerous but only option so far.
Alex
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Alex,
I’m glad your wife is stable and asymptomatic. It is quite hard to differentiate IPF and PF due to Covid. They look the same in the CT scan.
So, your wife doesn’t have a final diagnosis yet? You are also waiting for her next tests to determine if the fibrosis is progressing? How long will you have to wait before her next PFT?
Ian
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Hi she will be tested every 6 months with 6mw and see if there is any progression. Either is a very early ipf of pcpf because the fvc fev1 delco and rv all recorded above 8% improvement delco been the most from 56% to the last one in February atv84%. This been very optimistic, still asymptotic, but, honeycomb is there and that is the bad news.
Until several others pft are performing doctors do not have a clear cut answer.
For what I understand imaging is just one part of the equation they Need lft to have a better understanding.
We visited 3 dr all top line hospital in Toronto. All say ipf but because of covid they have another way to look for..
And to add more to it she may have drug induce pulmonary fibrosis as well since she was exposed to nitrofurantoin for 7 years . All that creates a bit of a cloud and they need the lft to establish if there is progression.
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Alex,
I appreciate the reply. It appears that your wife is stable. The improvement on her PFT is truly remarkable and I am happy for both of you. Your doctors are good in closely monitoring her condition. I hope she will remain stable or even make more improvement in her lung function on her next PFT.
All the best!
Ian
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Hi Lee:
I just saw you YouTube followup on class four laser treatment. I live in Cincinnati and would like to try the treatment myself. Can you provide my contact information to your Doctor in South Carolina and ask them to contact me regarding treatment. I would be much appreciated. Or, if you prefer, please let me know how to contact them.
Thank You
Glenn Mitchell — [email protected]
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