gil

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……”.

You tend to post interesting information, thank you Mark,

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

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.

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]

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

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]

Dave,

Thank you for link, it looks promising.

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]

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]

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]

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]

 
<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]

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]

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]

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]

Charlene,

I think you are right, prognosis is just a number, I’ll be going on 8 years since the doctor gave me the 3-5 number.

Merry Christmas Charlene, I wish you the best.

gil

William Sherman,

VA is stalling wanting a biopsy despite have two Pulmonologist from different cities saying I have IPF and two different High Resolution Scans, each done in a different facility and different city.

Sorry to hear that about the VA, I go to the Palo Alto VA and have not encountered any issues. I did have two VA doctors disagree…[Read more]

Laura Denne,

I was exposed to Agent Orange but the VA denied my claim. The explanation they gave me was that it is possible that Agent Orange caused my IPF and that it is also possible something else did.   Since then, the Courts have in at least two cases ruled in favor of the veteran, when I return home I will posts links.  I have a good c…[Read more]