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gil replied to the topic The inevitable…. in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 month ago
GratefulDeb,
You got some good advice, I will comment on your question based on my experience and I am not recommending anything in particular other than not letting IPF define who you are.
No doubt that if I were younger, I would opt for any treatment which slows IPF progression. I recently I turned 76 years old and I had planned on…[Read more]
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gil replied to the topic Disability Pride Month Can be Hard to Celebrate in the forum Join the Discussion: Welcome to all PF/IPF Patients 8 months, 2 weeks ago
Karen, I like your attitude about self and others, and yes life is good when we do the right thing. Thanks for sharing.
gil
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gil replied to the topic Zinc in the Role of Lung Fibrosis in the forum Pulmonary Fibrosis Awareness & Advocacy 9 months, 1 week ago
Thank you for the informative article, I will add a zinc supplement.
Does anyone know if it is better to take it in liquid or pill form?
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gil replied to the topic What Are Your New Years Resolutions? in the forum Join the Discussion: Welcome to all PF/IPF Patients 2 years, 2 months ago
I liked this one from Pete Besio,
“So my resolution will be to continue to find things that inspire me and make me feel positive……”.
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gil replied to the topic COVID-19 and Me in the forum Coronavirus (COVID-19) and Pulmonary Fibrosis 2 years, 3 months ago
You tend to post interesting information, thank you Mark,
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gil replied to the topic Happy New Year & Best Wishes for 2021! in the forum Join the Discussion: Welcome to all PF/IPF Patients 2 years, 3 months ago
Happy New Year Charlene!
1 good thing that happened is I discovered and DNA verified a wonderful woman who is my daughter and I love her deeply in a special way and we are becoming friends and that is the best thing which 2020 brought me.
Best wishes to everyone, may God give you what you need.
gil
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gil replied to the topic Head aches in the forum Join the Discussion: Welcome to all PF/IPF Patients 2 years, 4 months ago
I am not on any medication but since last year I too have been getting headaches. Sometimes severe but most often the headaches go away after an hour or so, sometimes it comes back. I attributed the headaches to allergies and pandemic stress; it would not surprise me if IPF is contributing to my headaches.
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gil replied to the topic The Importance of Our Immune System in the forum Living with Pulmonary Fibrosis: 50+ 2 years, 4 months ago
Mark Kozial,
Thank you for information. I will read it, it is fascinating stuff. I have one doctor telling me I have arthritis resulting from an autoimmune disorder, and my IPF doctors telling me i don’t have any autoimmune issues.
“it is important to note that inflammation is a symptom of pulmonary fibrosis and not IPF”
Isn”t IPF a type of p…[Read more]
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gil replied to the topic Afraid of the unknown in the forum Diagnosis Information and General Questions 2 years, 5 months ago
Hi Jay,
When I found out what IPF was, I too felt pretty bad but today I feel more optimistic and value each day.
“I did the 6 minute test and my OX 5was above 95%. It was primarily 98-99%”
That is pretty good. Mine use to be that high now it is closer to 95%.
Good luck,
gil
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gil replied to the topic Consuming a Healthy Diet with IPF in the forum Healthy Recipe Sharing 2 years, 5 months ago
Karen,
“My biggest problem seems to be that I rarely seem to have a taste for anything. Other than chocolate, that is! HAHA!”
I love chocolate! I make it a point to try chocolate from different parts of the world, quite a bit of variation and it is all good. My favorite chocolate is from Oaxaca, the majority of people there are indigenous and…[Read more]
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gil replied to the topic Good News! PRM-151 Positive Trial results in the forum Clinical Trials 2 years, 5 months ago
Dave,
Thank you for link, it looks promising.
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gil replied to the topic Consuming a Healthy Diet with IPF in the forum Healthy Recipe Sharing 2 years, 5 months ago
Karen,
“I just simply often don’t feel motivated to cook because I have little desire for anything. Not to say I don’t get hungry, but that doesn’t often involve a desire for making and eating a balanced meal. What do you do then?”
I find that cooking helps me reduce stress, perhaps it is that by focusing on each step of preparation and cooki…[Read more]
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gil replied to the topic exercise with problems breathing, heart racing and lower back pain in the forum Living with Pulmonary Fibrosis: 50+ 2 years, 5 months ago
Hi Charlene,
Yes, the arthritis pain is mostly on the extremities but the most painful part is above my ankle.
“There certainly is a relationship between PF and autoimmune conditions. I’d like to understand more about it….”
So would I. I too think that autoimmune conditions may trigger IPF and vice versa. I am going to give this more re…[Read more]
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gil and
Susan Howitt are now friends 2 years, 5 months ago
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gil replied to the topic exercise with problems breathing, heart racing and lower back pain in the forum Living with Pulmonary Fibrosis: 50+ 2 years, 5 months ago
Susan,
Thank you for information, it is so interesting that a lung disease may trigger autoimmune responses. In my case IPF preceded the arthritis so you are probably right. Also, I never had allergies until a couple of years before my IPF diagnosis. I suspect I had IPF before the diagnosis and that the allergies also are consequences of IPF…[Read more]
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gil replied to the topic Family Member Refuses Medications in the forum Esbriet (Pirfenidone) 2 years, 5 months ago
Karen,
Thank you for nice words and not easily dismissing my perspective. I suspect age, having multiple health issues, and the probability of a successful outcome colors our view. I am 73 years old, if I were younger my perspective would likely be different. If I were 30 or so, I’ve no doubt I would go for any promising treatment even if it w…[Read more]
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gil replied to the topic Family Member Refuses Medications in the forum Esbriet (Pirfenidone) 2 years, 6 months ago
<div class=”role-participant bbp-author-role”>Katie Beardsley,</div>
<div></div>
<div class=”role-participant bbp-author-role”>Good luck and I get what you are saying.</div>
<div></div>
<div>Jason,</div>
<div></div>
<div>I am not sure I agree that it is a denial issue. Of course I do understand that in many cases it is. I was a Hospice…[Read more] -
gil replied to the topic exercise with problems breathing, heart racing and lower back pain in the forum Living with Pulmonary Fibrosis: 50+ 2 years, 6 months ago
Wow, you all have an admirable attitude.
I was diagnosed with IPF around 2012 and I still don’t have the severe symptoms described above: you all seem pretty brave and your attitude is simply great, I don’t know that I could maintain such a positive attitude.
I do have arthritis, ankle, hand, fingers and lower back and it seems to be getting w…[Read more]
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gil replied to the topic Mental Health & COVID-19: A Check-In in the forum Coronavirus (COVID-19) and Pulmonary Fibrosis 2 years, 11 months ago
Charlene,
“I don’t think getting COVID-19 as an IPF patient is a death sentence by any means, and I don’t think we should approach it as so (though I am not a physician). It could be bad yes, but I know of a few CF patients who have survived it. Having a plan in place for “what if” is a good idea…”
I had thought getting IPF was a death se…[Read more]
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gil replied to the topic Mental Health & COVID-19: A Check-In in the forum Coronavirus (COVID-19) and Pulmonary Fibrosis 2 years, 11 months ago
Charlene,
I’m okay. My two daughters have me isolated. I am getting cabin fever but I am staying home, I have unfinished business with a daughter and I am going to do all I can to be around for a while. I do grocery shopping on line , it is so convenient I may keep doing it after this virus threat is over. the other positive thing is I find…[Read more]
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