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 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]

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 do…[Read more]

Charlene,

Good topic snd posts too. Today, I feel lung transplants are not always the best option , at least for me. Similar to Bob, above, I am too old and i dont believe in aggressive therapy for us old folks. I do believe in transplants and other forms of aggressive treatment edpecially if one is young. I wish you the best and i have faith a…[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 asl…[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 to…[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 able…[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 can’t…[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

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 ye…[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 a…[Read more]