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Monica Loftin replied to the topic How to relax with severe breathlessness? in the forum Join the Discussion: Welcome to all PF/IPF Patients 22 hours, 18 minutes ago
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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Monica Loftin replied to the topic How to relax with severe breathlessness? in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 week, 4 days ago
Let us know the outcome of the visit of the respiratory nurse tomorrow. All the best. Monica
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Monica Loftin replied to the topic How to relax with severe breathlessness? in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 week, 4 days ago
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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Monica Loftin replied to the topic Improved spirometry values in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 month ago
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…[Read more] -
Monica Loftin posted a new activity comment 1 month ago
Thank you.
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Monica Loftin replied to the topic Improved spirometry values in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 month ago
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…[Read more]
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Monica Loftin replied to the topic Improved spirometry values in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 month ago
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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Monica Loftin posted an update 1 month ago
@keno Suspected you eere of Swedish ancestry 🙂
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Monica Loftin posted an update 1 month ago
@keno So good to hear! Do you take Ofev/Esbriet?
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Monica Loftin replied to the topic Improved spirometry values in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 month ago
<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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Monica Loftin replied to the topic Improved spirometry values in the forum Join the Discussion: Welcome to all PF/IPF Patients 2 months ago
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” -
Monica Loftin replied to the topic Improved spirometry values in the forum Join the Discussion: Welcome to all PF/IPF Patients 2 months ago
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 o…[Read more]
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Monica Loftin posted an update 2 months ago
@stephanie
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…[Read more] -
Monica Loftin replied to the topic Improved spirometry values in the forum Join the Discussion: Welcome to all PF/IPF Patients 2 months ago
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…[Read more]
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Monica Loftin posted an update 2 months, 1 week ago
@cliffmj
Hi Mike,
Thank you for your reply. I see what you mean, but at least improved values are better than deteriorated values…
Take care
Monica -
Monica Loftin started the topic Improved spirometry values in the forum Join the Discussion: Welcome to all PF/IPF Patients 2 months, 1 week ago
Hello all – was diagnosed with IPF in the summer of 2022 after I all of a sudden could not do anything without getting out of breath. It lasted for a couple of weeks. (There were signs of fibrosis on an Xray as early as 2919). I had a spirometry in september 2022 and a CT scan that showed characteristcs of idiopathic pulmonary fibrosis. I saw a…[Read more]
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Monica Loftin joined the group
Research and Development 2 months, 3 weeks ago
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Monica Loftin replied to the topic The inevitable…. in the forum Join the Discussion: Welcome to all PF/IPF Patients 3 months, 1 week ago
I think we should be able to ralk about everything that is related to IPF. So please go ahead.
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Monica Loftin posted a new activity comment 3 months, 2 weeks ago
Hi Brian and thank you for your descriptive reply. Sorry to hear you have such serious problems with your oesophagus. About IPF and GERD, I read that approx. 90 percent of IPF patients also have GERD. I also read that medical science is divided as to what causes what. In any case, untreated GERD probably affects IPF negatively. I guess I will just…[Read more]
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Monica Loftin posted an update 3 months, 2 weeks ago
@brian-sowter Hi Brian, I find your postings very useful and thank you for taking the time to share your experiences.
I have recently been diagnosed and am still waiting for a final spirometry before the doctor will decide about ipf medication. But right now I am mostly concerned about the effect GERD may have on my IPF.
I don’t have heartburn…[Read more]-
Hi Monica
I have a serious problem with my oesophagus which happened long ago and my reflux is probably as bad as it could possibly be. I manage it by eating small meals (except on special occasions!) trying not to eat 3 hours before bedtime (nearly impossible), sleeping on my left side with a pillow under my shoulders. I take 40mg per day of…[Read more]-
Hi Brian and thank you for your descriptive reply. Sorry to hear you have such serious problems with your oesophagus. About IPF and GERD, I read that approx. 90 percent of IPF patients also have GERD. I also read that medical science is divided as to what causes what. In any case, untreated GERD probably affects IPF negatively. I guess I will just…[Read more]
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