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Need better diagnostic info
I was diagnosed with IPF 3 months ago. I have been on OFEV for 2 months. I cannot get information from my pulmonologist regarding the degree of damage I have. I had a breathing test and a CT scan initially, plus a bronchoscopy. When I saw a nurse last week, I ask her what my test results were. She said my pulmonary diffusion was 40%. Don’t think that is very good. Don’t know if there is other information that describes the condition of my lungs.
I go back to the pulmonologist in July for followup tests. What measurements should I know about? How do I know the OFEV is doing anything? What should I be asking my pulmonologist? I have explored topics on the internet and haven’t learned much. I really feel ‘in the dark’ regarding this disease and how to determine if I am making progress or if I have further deterioration. My oxygen level ranges from 94-98 most of the time. I am short of breath if I don’t walk slowly. I am much more tired. I am on a wait list for pulmonary rehab and am trying to walk more.
What should my pulmonologist be communicating to me?
Thanks
Bob Henderson
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11 Replies
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Dear Bob, I can so relate to your frustration. I got ver tired hearing “everyone is different” not helpful when you are trying to assess where you are. You are one the right track. Ask lots of questions, research, and mainly, follow how you are feeling. I have had IPF for about 3 yrs, diagnosed under 2 yrs ago. I find Ofev has helped me a lot. Couldn’t tolerate the 150mg, so I am on 100mg. This forum is great for info! Sorry you have the disease. Stay strong, positive, & in prayer!
denise -
Hi Robert, you should know about pulmonary function tests (PFT, FEV), 6-minute walk test, HRCT scans. Keep track of your o2 sats with a pulse oximeter at home. Sounds like you already are doing this. Keep a diary of symptoms, vital signs, changes in fatigue, changes in the length you can walk/stand, etc.
Ask your doctor to explain it as if you are five years old. Sometimes doctors forget that most of us have no idea what they’re talking about, and no context to connect their limited information to to make it make sense to us. They should be more than willing to discuss the condition with you at length so that you understand where you’re at. If they don’t, get a second opinion.
Also, this forum is packed with information on all sorts of topics from diagnosis to pulmonary rehab to lung transplant, so just take your time poking around and reading the posts. You could also check out youtube to see videos explaining PFT numbers, or find pulmonary rehab exercises that you can do at home, or breathing exercises to strengthen your lungs. The information is out there, it just takes some time to weed through it. We’re here to help and support you 🙂
Christie
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You need to take control of your medical situation. Always get copy’s of reports like breathing tests and cat scans. Read the cat scan, a diagnosis can be made from the cat scan. Get a second opinion from a pulmonologist that specializes in PF. This disease sneaks up on you, doing fine for the day, week, month, year and then deterioration and then it can level off. I have been on this road for 5 1/2 years and have usual intestinalis pneumonia, a faster advancing form of PF, Can not take the drugs and not eligible for a transplant but I am still here and living my life. Keep positive
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Hello, I am new to this forum. I was diagnosed with IPF in 2015 but there is some evidence from an older X-ray (not high res CT) that I may have had it in 2009. Is anyone on this forum that has had IPF that long? I’m just wondering how long I’ll live and how does one even make that projection?
thank you
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I was diagnosed in December 2021 but was told that it showed up on an x-ray I had in march 2019 but I was never told about it at that time. My doctor told me I could have had it for even longer. It has progressed to the point that my oxygen goes into the 80’s when I walk so I have to use oxygen 24/7. I am in excellent health otherwise but am 82 years old. Used to lap swim 3 times a week and am very active. I really have no symptoms. I can stilldo house work and yard work with oxygen. .
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My mom had an incidental finding of minor lung scarring from chest Xrays in 2009, but wasn’t symptomatic until ~5 years later, and wasn’t diagnosed until 2019. It wasn’t even discussed when seen on the x-ray.
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Hi Phil,
I was first diagnosed in late 2009. I had been stable until last year.
Kindly,
Marilyn
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Responding to Phi–Your didn’t mention whether or not if your on O2 and if so how mucht. There is no way to tell how long you will live with this disease at your point with PF. Obviously the worse your symptoms the shorter you life expectancy. Make the best of today! My history consists of an x-ray in 5/13 showing “parenchymal scaring.” As symptoms and testing progressed a pulmonologist gave a diagnosis of fibrosis of the lung in 2/17. A lung biopsy in 6/19/17 showed IPF of the UIP type. I was started on Oxygen in 8/18 after a sleep O2 level check. At first I rarely used O2 other than sleep. Then the level would be based on my level of activity-I’ve always been an active person in good health. Unfortunately I have progressed through portable Oxygen concentrators to E tanks as I need 8-10 lpm for any kind of activity; I often need to stop and take several breaths before pressing on. I still use the large concentrator at home that goes to the 10lpm continuous level. I don’t use it at the 10 level unless I’m doing something physical and even then I tire rapidly and need a little rest. In the last 6 month I have taken my last airplane flight and played my last round of golf. DON’t put things you want to do off! Meds wise I started on Ofev in 7/17 and switched to Esbriet a few months later due to side effects. I still have some side effects with Esbriet but have continued on the full dose to this date.
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Hello All,
I agree, there has to be a more consistent diagnostic clinical tree. I was a lifetime adult smoker and when I switched primary MD’s in 2017 he suggested CT-scans to detect lung cancer; negative results and subsequent annual scans all negative. I moved in 2020 and my new PCP suggested continuing scans and that scan was negative but showed “ground glass”. Immediate referral to a pulmonologist for High Definition scan that showed ground glass as well. All pulmonary function tests, 6 minute walk, and O2 were all normal, however you have ground glass so you must have IPF. Never mind that you had a 50 year career working with resins and ketones. “Start on Ofev 150 immediately and hope you live beyond three years.” Subsequent annual function tests were always normal. I did not appreciate my pulmonologist’s casual observation attitude and sought a second opinion. That second opinion after an intensive clinical evaluation and High Def CT scan resulted in an opinion that you DO NOT HAVE IPF! Ground glass, yes, but to a minimal degree, no more than the original scan from 2017 showed.
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Same as Bill, Told I had IPF 3 years ago been on Ofev for 2.5 years started at 150 but couldn’t tolerate and was switched to 100. Sought out second opinion with the help of my Lung Doctor to a transplant hospital, ran more test and they told me they weren’t sure it was IPF but might be autoimmune disease. I also showed ground glass, but have not shown progression in the lung scarring.
Went off Ofev for the time being and have started on another drug called Cell Cept to fight autoimmune disease. It is frustrating but we can not give up hope.
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Hi, Robert. My husband was diagnosed out of the blue last year and yes, there’s so much to learn as you go. I have found most of my information from PFWarriors.com and they’re corresponding Facebook Group. They hold regular Zoom webinars with doctors and they recently had one explaining how to read a PFT report (may be on the website to view). Free to join BTW. What I have learned is…they will use PFT and 6 minute walk test to monitor progression. Be sure to ask about Acute Exacerbations which I intend to do at his appt this month. We’ve seen his pulmonologist several times and she’s never mentioned this. An AE is a sudden decline in lung function and no one know what causes it but typically some type of infection. If you have a large decline in lung function they’ll redo a CT scan but they don’t use them to monitor progression (at least not at UF Health in Gainesville). The other HUGEly misunderstood item is Portable Oxygen Concentrators. My husband has recently been prescribed O2 for exercise and I learned the settings on the unit are NOT liters per minute of oxygen being given. Be sure to look at the specifications of each unit to determine it offers enough lpm for your needs. Unbelievably, I just informed another doctor about this and she was completely shocked..even disagreed with me at first until she googled it while on the phone. She said she had patients on a setting of 2 thinking they were getting 2 lpm and needed to get with her patients. Even the O2 company that brought in the machines set the POC on a setting of 2 and told me that’s what he needed for 2lpm. Turns out on its highest setting of 5, the unit only provides a maximum of 1.05 lpm. I hope some of this helps, still in the learning stages ourselves. That PF Warriors site and FB group though would be my biggest suggestion for education.
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