Monica Loftin
Forum Replies Created
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This happens to me too and I also wonder why. I would also say my ipf is in a mild stage. It also happens it starts in the high 90s, goes down to eve the 70s and quickly goes up to its usual between 93 and 95. It is very difficult to understand.
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Hi Sue,
Here is some info in a pdf file from the UK National Health Service about an OPEP device.
<span class=”wHYlTd GS5rRd QXonBd”>https://www.uhcw.nhs.uk/download/clientfiles/files/Patient%20Information%20Leaflets/Medicine/Respiratory/Aerobika%20mucus%20clearance%20device.pdf</span>
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Two regular CT scans clearly showed the progression of fibrosis. With an HRCT, I was finally diagnosed with IPF.
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Hi Kim. Thank you for sharing your experience with Haritaki. I will order some powder (not capsules) and wonder how many grams there are in each of the capsules you take.
Best wishes Monica (in Sweden)
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Let us know the outcome of the visit of the respiratory nurse tomorrow. All the best. Monica
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Hi Gavin,
Sorry to hear about all of this. I have IPF and live in Sweden. I don’t have any major issues yet, but feel bad not getting to speak to the pulmonologist and do feel alone with this. Just want to tell you I read your message and am sorry I don’t have any advice for you. Hang in there. Monica (in Sweden)
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Thank you Don for yours and everybody else’s generous input. However, being 80 years old, I don’t feel like taking a risk on Ofev/Esbriet or a biopsy with potentially overwhelming side effects but instead aim to focus on keeping as fit as circumstances allow and taking suppplements I believe in.
Something that surprises me, though, is that I have not seen any postings in this forum about medical cannabis, especially as it seems to be easy to get in touch online with a medical marijuana physician in most states and get a medical marijuana card for about 50 dollars, which presumably gives you the right to buy the drug at the pharmacy. How much the medical marijuana costs in the pharmacy, I don’t know. You can check your state at veriheal.com. Another site that may be of interest in this context is https://accurateclinic.com/accurate-education-fda-approved-prescription-cannabis-based-medications/
Monica -
<h4 class=”user-nicename hover-tip click-tip” title=”” data-toggle=”tooltip” data-container=”body” data-title=”Active 3 days, 16 hours ago” data-placement=”bottom” data-original-title=””>@keno</h4>
<p style=”text-align: left;”>Hi Ken,</p>
Yes, what you say about everyday functions makes sense.Fare well
Monica
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I think we should be able to ralk about everything that is related to IPF. So please go ahead.
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Good idea!
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Thank you Adele for your input. I think I may have cracked th code of the uer interface of the forum. Had a lot of problems replying but it turned out it was quite straight forward… I did not loose weight between the two spirometry tests I was referring to; my BMI was about 26,7 at both tests, and yes I did have extensive blood tests, at least I think I did. The blood was analyzed for 21 different things and all values were within reference values.
Monica
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Thank you Ken. So good to hear good news about IPF. I don’t understand the user interface of this forum and wonder how I have managed to reply to postings. Thought you might be of Swedish ancestry with your name :-). I have written many replies that seem to disappear somewhere. Forgive me if I repeat myself now.
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@cliffmj
Hi Mike,
I have great problems in understanding the interface of this forum. This is what I thought I published earlier but it seems it was only published on my personal page. I don’t ignore comments directed to me.“Thank you for your reply. I see what you mean, but at least improved values are better than deteriorated values…
Take care
Monica” -
Hi Stephanie and thank you so much for taking the time to write about your experience. I am very happy for you and it also makes me feel better about my own situation. About following doctor’s orders, there are none. I have only seen a pulmonologist once and at that time she spoke only of upcoming examinations as I had not yet had the obligatory HRCT and 6-minute walking test. When the results of these examinations and an additional spirometry were at hand, I got a letter saying I would be called to have another HRCT and a spirometry in 9 months. Nothing else… so I feel pretty much left to myself. The Swedish healthcare system is going downhill… So I do a lot of research on the internet and started several dietary supplements back in December. I am 80 years old and live alone in a cottage in the Swedish countryside and don’t move enough, especially not in the winter… I guess that is where I could improve. Thanks again.
MonicaPS I don’t really understand where my answers appear. This comment appeared on a page where all my pistings were gathered🤔
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Thank you Meredith for your answer. I live in Sweden and I am subjected to the public health system here. I don’t know anything about a medical “team”, but my pulmonologist wrote me a letter after my last set of examinations on March 1 (HRCT, 6-min walking test and spirometry) saying that my values had improved and that I would be called to another CT scan and spirometry test in 9 months (which I think is a long time..). Glad to have found this forum. Here is where I find useful information and tips on how to help yourself! (One good thing about the Swedish medical system is that you can see everything in your medical records online.) All the best
Monica
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Hi Ron, Hope you are still doing well. Very interesting to read about your treating your reflux with prazol drug and getting such good results all over. Also I have reflux and believe it is bad for my IPF. I will buy some omeprazol but saw on the carton that it says it is for temporary treatment of reflux. How do you take them? It seems like it would be better to take 1 a day indefinitely so the sour reflux does not happen at all. Thank you for sharing your experience.