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… Read more

Karen,  I like your attitude about self and others, and yes life is good when we do the right thing.  Thanks for sharing.

gil

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?

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… 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… 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… 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… 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… 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… 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… 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… 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… 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… 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… 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… Read more

Thank you Charlene.

I  use Firefox Mozilla.

gil

 

Katie,

I wanted to read your stories but I am unable to get passed the “This domain is parked” page.

 

Charlene,

Mindfulness is a tool/way of life  that has helped me deal  with IPF and other unwanted feelings/sensations etc but most of all it has helped me become less judgemental and to stay in the here and now.  I would say the practice has helped me with the Racing Mind syndrome that seems to affect  many of us. I initially didn’t want to… Read more

Charlene,

I only lay flat for a short time and with two or three pillows.  Sometimes when I watch TV and have to lay flat  I will also put a pillow(s) under my knee(s).

I find that tea,  non caffeine, helps reduce coughing, I usually drink a cup before going to bed.  I find that tea from orange blossoms reduces stress and helps me fall… Read more

Charlene,

All of the above.

I am at a point in life where I simply ignore such comments,  people may mean  well or  they may be mean,  regardless I take such comments as stemming from ignorance and  I don’t feel I have to educate them.

 

 

Charlene,

“What brings you happiness versus what doesn’t: I have to admit that I’ve never been good at putting myself first, however, in the last few months I’ve been committed to doing this. If I don’t want to do something, or if it is something that won’t bring me happiness, I choose not to do it. As all with IPF know, life is too short… Read more

Charlene,

I have mostly Avoiders but my sister and niece are supportive and valuable friends.

Joyce,

“We feel stigmatized I guess and it is totally wrong to feel that way. We have lived a good life, done many things for other folks, helped out those who needed it to move easier…Why not use the assists that are available for us now?  Let’s just stuff our pride and our feelings of inadequacy in our pockets and accept the help we are… Read more

Charlene,

While not as much as before IPF, I am still doing volunteer work and  it helps me from slipping into a depressed state mind which is easy to do you if I focus on limitations this illness brings. As long as I can help others I know I am still able to make choices … The biggest threat ipf gives me is becoming so helpless that I… Read more

I had not noticed it until my doctor pointed it out during our last appointment. As of today it hasn’t bothered me.  The shape of my fingernails are changing but I have not experienced pain.

 

 

Charlene,

So good to hear you are doing so well, don’t forget the photos!

gil

 

Charlene, Terry,

Interesting article and subject, Telomere lengthening.  Last week, I saw my primary IPF doctor and he mentioned the telomere and IPF research others are doing as well as his team’s research. I should have paid more attention and I will ask him for more details but he is basically looking at the problem as a cell… Read more

Depending on person asking, I usually explain it in one of two ways:

1.  It means my lungs are damaged and the illness will get worse until my lungs won’t work at all.  Doctors don’t know what cause it nor how to cure it; yet.  Doctors said I had about three good years (meaning very little change) and two years of rapid decline. That was seven… Read more

Kathi,

Thank you for your posting. I have a better understanding of the struggles caretaker experience and this will help me over the long run.   One lesson for me is I will have to be patient with my caretaker and others who assist me.  Currently, I don’t have a caretaker but I do have a couple of people helping me as needed.

Good luck with… Read more

Charlene,

I have a few more months before my lease is up but I am already searching.  Last year I went to Oregon and Northern California, I fell in love with this small town called Crescent City, near the beach and near the forests, in the winter there is quite a bit of rain so I will likely move to the Santa Maria – Santa Barbara area.

I… Read more

This is another reason I ought to move somewhere along the Pacific Coast……

Form Aishia’s link:
<h3>What is Salt Therapy?</h3>
Humans have been using salt for therapeutic uses for thousands of years. Anyone who has spent a day at the ocean knows that salt-filled air has something special about it. Hippocrates, the father of modern… Read more

Af,

I too hope genetic information will lead to better treatment outcomes, and hopefully in my lifetime.  Thanks for the information, I did not know IPF runs in families.

” It’s estimated that about 10% of PF is clearly familial”

Even if this is so, it is likely that environmental factors are what triggers the fibrosis.  We may carry a… Read more

Charlene,

“Have any of you been told that it is likely your IPF/PF diagnosis was due to the work environment/career that you”

I was exposed to Agent Orange, it is a herbicide used in Vietnam.  The Veteran Administration doctor who evaluated me said that it may be possible that my IPF resulted from exposure to Agent Orange but that it… Read more

Terry,

“temperatures were 25 to 30, the humidity was 75% or higher and barometric pressure was at sea level with a clear sky”

Thank you for the information.  The place I am considering has an average temperature of 27, 66% and it is at sea level. Sometimes there is fog, e.g., May, but most of the time it is nice.  So, you have given me… Read more

Charlene,

“DON’T:

Try to protect others by not sharing your struggles. This is an incredibly hard lesson to learn, but one that is important. Your struggles are a product of your disease. Protecting others puts them in a position of failure when it comes to helping you: they cannot help you if they don’t know the reality of your… Read more

Terry,

“Apparently, if a medical condition can be treated by being in an improved climate, the expense or at least part of it, is a tax deduction”

This is something I will look into, thank you for the idea.

What do you think it was about the trip/location that helped you?   Doctor suggested I move to the desert during winter and the coast… Read more

Charlene,

I love the sun and I get plenty of sunlight so I was surprised I too had low vitamin D. The doctor gave me a prescription similar to yours. Do you suspect low vitamin D has something to do with IPF?

 

Charlene,

I live in an agricultural valley and there are many things that trigger allergies and aggravate my IPF.  I discussed with my doctor ideal places to live given one has IPF.   He suggested the desert during winter and coast during summer. Doc said weather that is too hot or too cold aggravates pulmonary issues.  Of the two, he did… Read more

Charlene,

Allergies are better, thank you.  I had a respiratory infection, I don’t know what triggered or caused it, it wasn’t fun.  It almost makes me afraid  going to  indoors places that may be crowed, e.g., church, mall, theaters… Today I went outside and enjoyed a walk and did a little shopping.  If tomorrow is nice, I will go for a… Read more

Ken,

Please tell us more about the stem cell therapy, are you part of a research group?

Charlene,

I haven’t noticed problems with toothpaste, if this changes I’ll let you know.

 

 

Charlene,

I switched to products with more natural ingredients.  I now use a hypoallergenic detergent, “0% fragrances, Dyes, Artificial  Brighteners”  and similar for other stuff.  Sometimes I can’t help myself and I will use bleach and I can notice the difference it has on my skin and allergies. I now try avoiding all heavy chemicals,… Read more

Charlene,

Yes, I felt better and my friend and I had a lovely time, we spent most of the day shopping,  I spent about 20 dollars and she spent over 600 dollars,  maybe it is a gender thing. It takes me a few minutes to choose a pair of shoes, it can take her half a day.