Tagged: chronic illness, IPF, oxygen, PF, staging
- This topic has 8 replies, 5 voices, and was last updated 5 years ago by Charlene Marshall.
May 3, 2018 at 9:12 pm #12262Pulmonary Fibrosis News ModeratorParticipant
When a person is diagnosed with PF, they may also go through additional tests so doctors can determine the stage of the disease. Staging of pulmonary fibrosis is important to establish the optimal treatment plan and to offer the patient an accurate prognosis.
Check out some important information on “Understanding the Stages of Pulmonary Fibrosis” here.
What stage were you when you got your diagnosis? Which tests did you have to do to find out?
May 10, 2018 at 1:12 pm #12429Evertt EudyParticipant
I wont get the lung function test until June 19th.Seems its a long time till then. I am on 2 ltrs. Of oxygen at home, if I take it off for very long…say 15 mins. It drops into the 60 ‘s if I am doing much activity . What does that sound like to anyone else ?
May 10, 2018 at 6:45 pm #12430
Thank you so much for joining the PF forums and sharing your experience with us through this thread. Sorry to hear of your struggles with being on oxygen, and the drop in your saturations if you’re off the O2. This is incredibly frustrating, isn’t it? I have a pulmonary follow up on June 19th as well…. I’ll be thinking of you!
It’s hard for us as non-medical professionals to advise on what stage your PF sounds like, based on saturations. It’s also tough, as staging is dependent on many different test results, as well as sometimes doctors even factor i in comparative scans to make the staging determination as well. The function test on the 19th, is this your very first one? If so, this will help doctors determine a baseline for your PF and hopefully establish a treatment method for you, ie. whether or not you’ll start the anti-fibrotic meds. Or, have you started either Esbriet or OFEV already?
Best of luck at your appointment Evertt, I hope it goes well for you!
May 12, 2018 at 2:10 am #12458Joyce DouglasParticipant
Hello again Charlene. When I was diagnosed a year ago the Dr. stated that my IPF was advanced. I haven’t been told if he will be doing another lung function test soon. Will ask him at my next visit. Don’t really know where I am at in the stages.
May 12, 2018 at 7:39 am #12469
Good morning Joyce,
I hope you’re doing alright..
Thanks for sharing your experience with diagnosis and staging. The stages of PF are unfortunately not something I understand a lot about, and need to do more research into this to increase my understanding. When your doctor mentioned that your IPF was advanced, did he/she voice any indicators of why it was? Ie. was having to go on oxygen 24/7 (which I remember was your experience) a reason to stage your IPF as advance, or did he/she mention it had anything to do with the physiological function of your lungs? I’m always so curious to learn more about why some people receive an ‘advanced IPF’ diagnosis, while others don’t. I guess this comes from my lack of understanding of the staging process….
Thinking of you!
May 13, 2018 at 9:39 am #12479Evertt EudyParticipant
Hello Charlene, Yes this will be my 1st lung function test by the pulmonary Dr. I did have a high resolution cat scan of my lungs while I was in the hospital, the Dr. Showed us and pointed out much of the damage to my lungs, I ask if it was bad, he replied YES !…Just how bad, we wont know until the full lung function test is given on June 19th. Again its very frustrating and depressing to only know this much. Thank you for ANY thoughts you may have .
May 14, 2018 at 7:23 am #12489
Thanks for getting in touch and I hope you’re doing well.
Oh, I am glad you hear you did have the HRCT scan as this is usually a fairly conclusive test of identifying and diagnosing IPF/PF. That being said, sorry it was that diagnosis at all. I am living with IPF and it is such a difficult illness to live with!
With this being your first function test on the 19th, you must not be sure right now what your actual lung function is at, even approximately? The HRCT scan would show the physiological damage of the lungs, and then the function test will help understand how your lungs are working as a result of that damage. It’s so hard to estimate what that will be though, as I know some people who work full-time with a lung function of about 30%. When you were in the hospital and received your diagnosis, did they do any type of bedside function test for you? These are not conclusive but sometimes help the doctors get a better idea, although it doesn’t sound like they did this for you? Sometimes they don’t. I really can’t advise on what your lung function may be, as it can even depend on where the fibrosis is in the lungs…. so sorry I can’t help more! Was your function test ordered from your GP? If not, maybe going in to see him/her with your questions, might be able to get you some further answers without such a long wait? June 19th does seem like a long time to wait. I’m sorry to hear this.
Please feel free to connect any time…
May 15, 2018 at 3:23 pm #12515Terry MoriartyParticipant
My understanding is that today the stages are determined primarily by the Forced Volume Capacity (FVC) results from the spirometry test done during pulmonary function test. But these stages have nothing to do with being in “end stage”. I’ve been in “severe” since I was diagnosed in 2007 via a lung biopsy. I have copies of the results of most of my PFTs over the years and been around 48% except when I was living in Southern California and it dropped to 35%. I guess the air in LA is really bad ?.
I found this article very interesting on this topic.
I was diagnosed in 2007, went on oxygen 24/7 in 2012 at 2 lpm, just went up to 6 lpm this January. For me IPF has been an annoyance. I worked bi-coastal, flying back and forth with my POC until I retired in 2014. I have declined some now. I’m on 6 lpm now, which meant I had to go back on tanks when I leave the house. And use a wheelchair. It’s been an adjustment.
The bottom line is each person’s progression seems to be unique. I know that I’ve really beaten the odds living with this for so long. But there are things I wanted to do that I waited for retirement. Now I can’t do those things.
If you have dreams, don’t let this disorder get in your way. Do it now while you still can. Have no regrets.
May 15, 2018 at 6:44 pm #12519
Thanks so much for contributing such a knowledgeable post for Evrett and I. I’ve found this particularly helpful, and am just about to spend some time reading the link you shared as well. I’d like to better understand the overall measurement of our lung function, as mine ranges between 30-38% usually, depending on the day. I’ve never looked fully at my results, just depend on my pulmonologist to share with me. That being said, determining the stage of disease progression does make sense to be measured by FVC.
So sorry to hear about the recent progression up to 6litres of oxygen, but I am amazed that you seem to have done so well between your diagnosis of 2007 to now. I think this gives a lot of us hope!
I try to live by that, “have no regrets” and will remember your story even more now when I think of those words. Thanks again for taking the time to write.
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