Adele Friedman
Forum Replies Created
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IPF does NOT include fibrosis with a known cause, such as an autoimmune disease. I think Covid-induced worsening of fibrosis is just one example of an infection worsening existing PF. It also doesn’t seem right to call Covid-induced PF “I”PF, because it isn’t idiopathic. Covid caused it. However, there could be people who had undiagnosed fibrosis and then got Covid and worsened. I guess the only way to know for sure exactly how much PF Covid caused is if one had HRCT or other imaging shortly before Covid and then soon after
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I don’t have this. Is he checking his temp with a thermometer? (Not just assuming he has one because his forehead is warm or he feels warm with activity.) If he is running a fever, does he have other symptoms of illness? Might be good to talk to his doctor.
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That is the gold standard for clinical trials: randomized, double-blind, meaning neither you nor the people giving/making the drug know who gets what until it’s over. It’s done this way to avoid bias.
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In a recent talk by a respiratory therapist, sponsored by PF Warriors, I believe, he stated in takes at least 45 seconds to get an accurate reading from fingertip pulse oximeters. After I heard that I had a medical appointment and complimented the tech on waiting before taking the reading. If a forehead-sensor pulse oximeter is used, it may be accurate in less time, but that’s not common.
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Just want to mention there are some drugs that may relieve SOME symptoms without heavy side effects. In my case, mycophenolate resolved a lot of inflammation, along with nebulizer and later, Symbicort through an Aerochamber. I don’t have IPF; I have ILD caused by Sjogren’s Syndrome (an autoimmune condition).
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I became very short of breath heading across a parking lot into a store. A couple days later, I was diagnosed with pneumonia in an urgent care clinic. I thought it was weird I had no symptoms other than SOB because I thought pneumonia involved more than just that. A few days later, no better, I went to my primary care doc and got another short course of antibiotics. Came back to primary care and short walk test made them decide I should go to the ED at local hospital. Doctor there diagnosed me with pulmonary fibrosis, based on the lack of resolution of the “pneumonia”, which I’d never had, and xray he took. He told me to call local pulmonology appointment that day. It was Dec. 21, 2021 and the soonest appointment was Feb. 1, 2022. Fortunately, I was able to get into an ILD center two hours away a few days sooner. I continue there, and basic care like PFTs and walk tests at the local pulmonologist.
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ECMO stands for Extra-Corporeal Membrane Oxygenation. Extra-Corporeal means “outside the body”. It oxygenates the blood outside of the body, then returns it. Whereas ventilation puts oxygen into the lungs and relies on oxygen transfering into the blood.
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Inogen has one and I actually received two when I bought my G5.
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First thing that comes to mind is whether you really have “I”PF. Many who have PF, scarring in lungs, actually have a cause for it if sufficient diagnostic testing is done. PFTs and walk tests can vary. It’s the trend over time that matters most. One of the most important, FVC (forced vital capacity) is improved generally by losing weight, if you were overweight. Indeed, the scans do show whether, and how much, fibrosis is progressing. Wonder if you have had extensive bloodwork to see if your PF has a cause, like my Sjogren’s Syndrome, and other autoimmune diseases.
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Thank you, Dr. Strum, good info. And thanks to everyone participating on this thread. Of course, if there are nodules in the lungs that seem suspicious, one may have to have CTs more often.
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Thank you, Dr. Strum. I’m glad I was on track.
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He may be trying to assess how much, if any, your fibrosis progresses in six months. That’s something that could be valid initially, but HRCTs are not routinely done at specific time intervals indefinitely. It is pretty routine to have PFTs and walk tests every six months, maybe more often in some cases. CTs and HRCTs are noninvasive, but involve a fair amount of radiation compared to other “scanning” procedures, so it’s generally wise to do them only when there’s a solid clinical indication. For example, dramatic worsening of condition.
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It’s hard to see what good a biopsy would do at this point. There seems to be ample evidence that you need a lung transplant, if you are eligible and want to do it. Would this surgeon be the one doing the transplant? I rather hope not, because I’m deeply wary of doctors suggesting lung biopsy (or any other risky, invasive diagnostic procedure) without it doing much to change treatment. Biopsies are being done less, with all the other tests available-still some cases where it may be needed, such as determining treatment for lung cancer. I would ask for the reasoning. Second opinion, for sure! Good luck.
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SOB does not always correlate well with oxygen saturation, although for me, it usually does. Millie, regarding the pool, I don’t swim, more do water aerobics type exercises, sometimes using the noodle for certain things. I once brought a hand towel and my oximeter poolside to check quickly as I worked out. Is it posssible you are climbing up pool steps and walking to where your oximeter is, becoming hypoxic during that process? I hope you will check what O2 sat is in pool.
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You guys: seriously? Exercises to heal scar tissue? I think if this were a thing, we would have heard about it. Also, anyone who’s seriously listened to the talk about zinc knows it does not claim zinc heals scar tissue and that research is very preliminary-not yet in humans.
As for the link, it’s on the website. You will find what I said is true.
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I am wondering if you had a thorough work up before your IPF diagnosis. Sometimes “I” PF is not the true diagnosis, in that sometimes PF has a cause and is not “idiopathic”. Specifically, some autoimmune diseases, like rheumatoid arthritis, and the Sjogren’s Syndrome that I have, can cause pulmonary fibrosis. Certainly both of those conditions can also affect joints and various other body parts.
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Unless it’s something like a hair clip, I try not to trust products in which their data is written in such a way as to need a good proof-reader. I also find good proof-reading is valuable in protecting oneself from online scams of all kinds: errors in spelling, grammar, syntax and punctuation do not speak well for the product advertised. I use Symbicort and trust that if there were anything to inhaling Himalyan salt, one of my doctors would have told me so.
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I can do pool exercise without oxygen. More water aerobics type workout than swimming per se, but go for over a half hour at a time. I am not fully dependent on oxygen, but it helps. Currently doing Noah Greenspan’s PR video program and at about the time the walk exceeded 7 minutes, I decided I needed some oxygen while walking. One thing I’ve learned is that because of my relatively poor diffusing capacity, oxygen isn’t able to transfer into my blood, nor carbon dioxide out, as efficiently. To a great extent, that low-ish DLCO score is the reason just throwing more oxygen at the problem doesn’t always help as much as we might wish.
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Please don’t assume your O2 saturation during sleep is ok. There is an overnight test to see how low you drop, how often you drop below 90 and how long each event lasts. Even if you take a pulse ox reading right away upon waking up, it does not mean you are ok during sleep. A few breaths upon awakening brings the number up. And it may be far better than you were at points during your sleep.
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I have been diagnosed with asthma and have heard nothing about Symbicort being a problem for it. In fact, a quick Google shows it is used for asthma. Ask the doc.
https://www.mysymbicort.com/asthma.html
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I have been diagnosed with asthma and have heard nothing about Symbicort being a problem for it.
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High resolution, or any CT scan does expose one to radiation, so I would ask the doc if one is suggested more often than every six months. I was just told last April’s does not need to be repeated for this year. As for diet and exercise reducing fibrosis, there is no scientific data supporting that. Was there another medication? In my case, mycophenolate reduced ground glass opacities (a marker of inflammation, not scarring) a good deal.
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My understanding is that almost every person with lung disease should get all the Covid boosters, unless there is some contraindication, like severe previous reaction. MRNA does its thing to the immune system and then leaves the body.
It sounds as if you’ve done fairly well so far. Kudos to the doc for ordering a high res CT right away, not just regular CT. What blood work have you had done? That, in combination with HRCT, can pinpoint cause in some cases, including mold damage,, if any.
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I live in the Olympia, WA area and see a local pulmonologist here for PFTs, six minute walk tests and follow up appointments. I also go to the ILD Center at OHSU in Portland, OR, a two hour drive. (Since I am unable to drive at night, this time of year, I keep Google on speed dial for sunrise and sunset times in this northern latitude for setting appointments!)
At OHSU, an ILD specialty center, I see a rheumatologist and pulmonologist and it was the rheumatologist who based on my data, including extensive bloodwork, and HRCT, diagnosed me with Sjogren’s Syndrome which is probably the cause of my PF. It’s tricky diagnoses like these that make going to an ILD center a good idea. At least in the beginning. Local pulmonologists may not have the time and expertise to look for autoimmune diseases as primary causes of ILDs, or other less common scenarios. There is a lot more “I” PF diagnosed outside of specialty centers that really is NOT idiopathic if the right eyes look at the situation. Therapy is often different. I am on mycophenolate to tamp down my immune system, rather than Ofev or Esbriet.
My sole support is the online forums on Facebook, which brought me here and brings me good webinars about lung disease.