April 24, 2020 at 10:50 am #24109
The two words: “acute exacerbation (AE)” are some of the most feared among the pulmonary fibrosis (PF) community, as AE’s can lead to a slew of complications for those of us living with this life-threatening lung disease. Despite AE’s being so feared, much remains unknown about the cause, treatment/management and prognosis of those who experience an exacerbation of their disease.
I can say for certain I have had one AE, back in May 2017 when both my lungs collapsed from an RSV and my disease worsened significantly. That decline in PFTs was unfortunately irreversible. Reflecting back on other experiences, particularly in November 2019 when I had a significant setback from pneumonia and influenza A, it could likely be argued this caused an AE as well but it’s never been communicated to me. This is part of the problem with AEs, they seem significantly misunderstood in the medical community around the world, and much of the practices to diagnose and treat AEs seem widely varied. More information can be found here, on the differences in diagnosing and treating acute IPF flares.
The conclusion of the article linked above states, “this strongly calls for research, education, and collaborations between ILD-specialists around the world to find new ways to approach this deadly complication of IPF”. It is my hope that addressing AE’s for IPF patients becomes the focus of future conferences and educational opportunities for physicians, as the differences in managing acute flares, currently pose a risk to IPF patients.
What has your experience been of acute exacerbations of IPF?
Have you ever had one?
If so, how was it managed/treated?
April 26, 2020 at 4:51 pm #24150Kathleen GrecoParticipant
I had first & only one in Oct.of 2020 & was not on oxygen until then,now I am on it 24/7 & don’t see me getting off of it.
It’s a very high dose 8 at excertion & up to 15 for long walks & so on. My mood has been good since I have had this but after that hospital stay in Oct.been very sad. But I will keep praying for all of us. Just recently feeling kinda sick again & my numbers dropping……..I just do not know what to do ..had this for 5-6 yrs now.I wish all of you the very best.
April 28, 2020 at 9:41 am #24160Mike MsesParticipant
I’ve probably had PF since around 2015-2016 and it was not diagnosed correctly. In June 2018 I broke my back twice (bad bones I found out). Doing that time I had very severe pain for months and my O2 fell to 66 the first time they tried to fix my back. I believe that I probably had some exacerbation then because my breathing, etc. got worse after that. Since then I am fairly stable, but surely getting worse slowly. I’ve been on O2 while sleeping and exercising since 2018, not 24/7 yet. I do use O2 going up steps, walking anything more than around the house, and at 3-4 while exercising or walking a lot. I guess so far I am fairing better than some people. I have done the evaluation for a lung transplant at the direction on my doctor. They want to do this early on before you get real bad off because it is taxing. Once on the “list” they will wait until I get worse before moving me up and maybe getting a new lung or two. It may be a while, or something else may get me first. I’m not rushing anything. I do take extra precautions not to be around sick people and do everything possible not to get the flu or pneumonia. Been mostly in the house for almost two months now. I wish all the luck in the world.
- This reply was modified 1 month ago by Charlene Marshall. Reason: tagging
April 28, 2020 at 4:06 pm #24169Dennis RoweParticipant
Kathleen and Mike,
As previously posted, I had a bi-lateral lung transplant in March of 2019. (72 years old)
Prior to the transplant I had 3 exasperations. The first two at home, from where I was transported to the ER. The third one came while in the hospital. My Pulmonologist contacted UCSF, where I’d already been evaluated for possible transplant. They agreed I was in pretty bad shape, and might not make it through another exasperation. I was then transported to UCSF, and very fortunately received near lungs three weeks after admission.
It has been a long recovery, but thank God for all the doctors, nurses, and my family care givers that got me to now!
To all of you suffering from IPF, or something similar; keep the faith and don’t give up!
My very best to you and your care givers!
April 28, 2020 at 5:54 pm #24170
Hello Dennis, thank you for sharing your story. I know first hand how an exacerbation can affect one’s well being. Stay positive in your transplant recovery and best wishes. Mark
April 28, 2020 at 6:08 pm #24171
Hello Kathleen, I’m sorry you are feeling sad about your health condition. I hope your current condition improves. You may have some inflammation right now that is affecting you. This disease has its own manifestation while it’s rampaging through our bodies. Please stay positive. Best wishes, Mark.
May 1, 2020 at 9:14 pm #24198Kathleen GrecoParticipant
Just want to say Hi to everyone and thank you Mark & others ,you have no idea how much you have helped me
just with your kind words. I am a therapist but always had issues asking for help or myself or sharing my pain with others…….so thank you…thank you…I must get back to this group again & take time to write.
May 1, 2020 at 9:18 pm #24214
Hello our dear friend @kathleen-greco ,
So nice to hear from you! @mark-koziol and I say hello, and warmly welcome you to the forums whenever you have time to write to us. A big virtual hello right back to you 🙂
I share that same struggle with you, as a fellow therapist, it just isn’t in our nature to ask for help but it is important that others remind us from time to time to do so. Sending that gentle reminder to you, and know that we’re here when you need us. Stay safe during these strange times and look forward to hearing from you again soon.
May 2, 2020 at 7:05 am #24219
May 8, 2020 at 7:41 pm #24296Sara TannerParticipant
So no symptoms until diagnosed with “pneumonia” not viral/bacterial etc. in Oct. 3019!! COVID-19?? Still don’t know?? Labor Day wk end became breathless ! 02 sat only 81% when standing!! Diagnosis 3-5 yrs life span!! Black & white!! Don’t think so! But recovery was amazing!! Now husband only using 2 ltrs 02 when sleeping!! Just got portable unit. Plans to travel to Grandkids & staying at camper. Don’t take diagnosis as definite. Only needs 2-3 ltrs when really active and/or sleeping ! Be positive & it’s a new diagnosis so each person’a progonis is different ! Not going to give up!!
May 10, 2020 at 10:03 am #24298
Glad to hear your husband is doing better since the original grim diagnosis Sara. That is great to hear and good for him for working so hard! You’re absolutely right — nothing about PF/IPF is black and white! Enjoy camping with the grandkids, and soak up all those memories! Take care, Charlene.
May 12, 2020 at 10:07 am #24315Charles WhittingtonParticipant
My acute exacerbation occurred in June,2018. My doctor immediately put me in the hospital. I did not respond to the standard steroid and antibiotic treatment. I was offered the experimental Duncan Protocol which stopped the exacerbation. It is now in clinical trial. They gave me 1 month to live before the treatment. I went on O2 full time and the slow progression has returned. O2 is 6 liters with any exertion but I can still do most things.
Thank you for these forums. I enjoy reading them and appreciate the positive attitudes even with the poor prognosis we have!
May 13, 2020 at 9:04 pm #24338
Thanks so much for sharing your experience with us, though so sorry you experienced an acute exacerbation. My first one was in May 2017 and it was very scary. Im going to read more about the Duncan Protocol, very interesting and I’m glad to hear it stopped the AE. Also happy to hear its back to slow progression and that you can still do most things, good for you for fighting your way back! I know it isn’t easy 🙂
Take care and thanks so much for writing – glad to hear the forums are helpful to you.
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