[gil]

 

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 celebrating my birthday in Yosemite, instead, I was in bed recovering from pneumonia.   No doubt I will experience other health issues and I ask myself , at what point do i stop medical treatment so as to not  reduce my quality of life? That is, for me it isn’t a question of how long I will live but what will  the treatment do to my quality of  life?

First, I want to opt for quality of life and not quantity of time I have left. So I will opt out of invasive treatments and try to insure my wants are legally defined so I can spend the end of  life as I expressed I wanted.

The two ipf drugs available to me have some nasty side effects, some even fatal. Do I want to slow the progression of my ipf but suffer digestive plumbing issues and other possible negative side effect?  I will take treatment as I did with pneumonia, for short illness/accident or allergies, but no other treatment or surgeries. If I get cancer I certainly won’t do chem treatment nor get surgery for a heart attack or do a drug regiment which reduces my quality of life.

When I was first diagnosed it took a while for it to sink in and once it did I made up my mind to not  let IPF define me.  I can’t do all the stuff I used to do but there are other things that I do which bring me joy. When the day comes that confines me to bed, then I will pray for a quick death and wish for not waking up. In the meantime, I will try to squeeze joy out of each day that I have left.

Terri,

I was diagnosed in 2013 and told the same thing, 3 good years and then 2 of rapid decline. I am still around and until a year or so ago, I was able to do everything I did before the ipf diagnosis.  So don’t focus on date, you may be lucky like me and live years beyond what is expected.

[gil]

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

gil

[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?

[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……”.

 

[gil]

You tend to post interesting information, thank you Mark,

[gil]

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

 

[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.

[gil]

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 pulmonary Fibrosis and does this imply IPF has symptoms not found in “regular” pulmonary fibrosis?

 

[gil]

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

[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 export very little. A friend recently returned from Oaxaca and brought me about a pound of chocolate and I am looking forward to trying it soon.

I’ve noticed a decline in my appreciation of food, I attributed it to the pandemic and i hope that is the cause, IPF is bad enough, i hope it doesn’t ruin my enjoyment of food.

 

[gil]

Dave,

Thank you for link, it looks promising.

 

[gil]

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 cooking, time seems to slow down in a good way and resulting in relaxing my mind and body.  Sometimes, I have to force myself to cook but once I start I can get into it and i find a little serenity.  Of course sometimes i am in a hurry or just for the fun of it, I will go out to eat.  Sometimes I am too tired to cook or go out and will have cereal for dinner.

[gil]

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 research time, I am hoping IPF does not have a genetic predisposition, I have kids and grandkids. My two daughters have different autoimmune disorders and so do two of my grandkids. Almost three years ago I had a biopsy and there weren’t any autoimmune issues so I have many unanswered questions.

I hope the doctors are able to explain why you have IPF at such a young age and identify any underlying issues. But more than that I hope for something that stops the IPF progression without toxic effects. I suspect a DNA-based treatment is doable and will be available sometime in the near future; and I also believe that it will be safer than current drug treatments.

[gil]

Susan,

Thank you for the 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 and autoimmune responses.   I accept what is yet I dread the worsening of my IPF and arthritis, I hope I can be as brave as you all.

[gil]

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 were aggressive and painful.  Today, my medical directive explicitly states no extraordinary methods or aggressive treatments.

I love life. I am grateful for so many things  yet I dread my IPF worsening. A couple of  years ago I let my IPF distress me so much I wanted to give up but then I came to this forum and met people like Charlene Marshall  who inspires me to keep on going and I so I do.  Yet, when I let myself think about it, I still dread what IPF is doing and will do to me.  I won’t give  up and I am open to non aggressive treatment options but I try not thinking too much about how IPF is shaping my future.

 

[gil]

Katie Beardsley,

Good luck and I get what you are saying.

Jason,
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 volunteer and got to meet many people during the end of life cycle.  Most of these brave  people had opted out of aggressive treatments and from the attitude that life is to be preserved at all costs; it isn’t denial so much as acceptance and opting for the best quality of life.  I know that here we aren’t hospice patients but I think it is ok to  have the attitude your mom expresses especially if she has comorbidities which may not be helped with any of the popular IPF drugs.  I think it may make a difference if one has other health issues but in the end, I don’t know, I too may be in denial.

[gil]

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 worse and showing up on more body parts.   Seems a few of you have it too, is arthritis associated with IPF?  As my IPF worsens will my arthritis get worse.  One doctor told my I had “ILfuVd” rheumatoid arthritis, he said it was an autoimmune decease. I didn’t think much of it until I mentioned it to my IPF doctor who said the biopsy they did a few  years ago didn’t not show any evidence of autoimmune issues.  Is it possible for IPF to trigger an autoimmune response like arthritis?

 

[gil]

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 sentence, I am glad it is not.  Any ideas on a good plan in case the Virus gets us?

@wendy-dirks

I like your attitude, “I accepted my mortality long ago and now I’m determined not to die from covid-19 and I don’t think I will. I’m prepared to stay home for the rest of my life if need be, pottering in my garden, writing my blog, playing with my dolls and my cat. I’m definitely staying home until there’s a vaccine. ..”

 

[gil]

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 I am communicating with more people and more often.

 

 

[gil]

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

 

 

 

[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 with the diagnosis, one thought the fibrosis was due to autoimmune issues and the other thought it was IPF and the medication for one does not work for the other.  I did not want risking side effects if the medication would not work for me, I went for the biopsy and the diagnosis is IPF and while one doctor wants me to start with Esbriet my primary pulmonary doctor still believes that some of my symptoms are due to autoimmune issues and wants me to see a couple of other doctors, he thinks my joint issues, dry eyes and mouth, and skin issues that come and go warrant further study.  Other people with IPF have not had an issue getting medication from the VA, so I am very curious which VA facility is denying you drug treatment, it does not sound right unless they suspect autoimmune issues.

 

gil

[gil]

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 contact person in Sacramento California, are you near Sacramento?

gil

[gil]

Thank you Charlene.

I  use Firefox Mozilla.

gil

 

[gil]

Katie,

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