Pulmonary Fibrosis Support Group

unfortunately, there are no cures as you have no doubt found out by now. And sadly, this disease is said to be one of the worst ways to die. But then there are few good ways to die, so one must realize that death is inevitable. And when death of a loved one occurs, it brings with it a certain amount of grief and sorrow.

I wish I could offer something other than what seems to be words without comfort. Unfortunately, I haven't found them yet and so am unable to offer them to others. I have recently been diagnosed with PF. I was not given as good a prognosis as what your dad has already experienced.

On the upside, if he is only now getting short of breath when stair climbing, it sounds as though he may still have a number of years left. Spend them making memories. Spend them learning about him so that he will continue to live on after he has gone. I regret not doing this with my mother at the end of her life, and am trying not to do it with my kids as I near mine.

You might also check into getting involved with support groups in your area. You might also investigate clinical trials for experimental treatments. I am in the process of being accepted into one. The medicine that I am hoping for is in it's third phase and has shown some positive results for early stages of PF. There are several ongoing trials across the US.

Good Luck....

I truly appreciate you responding to my post. I believe you said everything very well. I have been constantly reading about IPF online. It does vary greatly from person to person. It is a progressive, horrible disease. I'm so sorry you are suffering from it. I wish you lots of luck with the experimental treatments.

I plan on doing my very best to spend as much time as possible with him, unfortunately he has a very controlling wife (not my mom). I try to live every day as if it will end tomorrow.

I have found this website extremely helpful through a difficult time in the past, that is why I have turned to it now. If you don't mind me asking, how are you feeling right now? Are you on oxygen?

Try you very best to enjoy every minute with your family. How many grandchildren do you have? My dad has 6, ranging from 5mths-8yrs.

Thanks again for responding! My dad is definitely willing to do what he can to prolong his yeaars. So taking part in clinical trials and a lung transplant if/when he needs it.

Keep me posted, positive thoughts with the experimental medicine!

Kristin

if you can and he is willing, tape your conversations with him. and if he does, ask him questions that you never asked before. this will be your chance to get to know the man behind the mask of being your dad; the teenager he was; the young parent he became.

while the gift of time is the greatest gift a parent can receive, little tokens always amuse me. my favorite is nuts, or a candy bar. it isn't the type or quantity or quality.....it is the notion that my daughter or son stopped to do something like that. for example...my daughter at xmas time gave me a stainless steel dipping bowl. very inexpensive, but something i would use cooking....i loved it and when i look at it, it reminds me of her....hopefully the little things like that that i have given will do the same.....once she wrote a journal and gave it to me for fathers day.....some ideas....

it is difficult to overcome an unwilling or defensive spouse that is not your mom, but bear with. she is also experiencing a loss. try to let her know how you feel and that you are sorry for her loss as well.

Thank you! I am planning on making a photo book for him.

As for my step-mom, she has been a nasty women since he met her, this isn't new. I'm hoping she will get a little nicer now that my Dad is sick. Keep me posted on how you are doing. Is it ok if I ask you questions as things come up?

Kristin

ask all you want.....i only wish i had known someone to ask months ago when first facing this.....so ask away, i may be a little slow in responding but i will respond....

keep in mind that as bad as IPF is....it is just our way out of this world. everyone has their own path to the end....while some may not be as gentle or kind as others, it is part of our journey. accpeting it and learning to deal with it allows us the opportunity to do other things before we leave this life....

Thank you! You have a great attitude :)

I agree ... you do have a great attitude! I wish you all the best in the battle you are facing.

I'm from Australia. My Dad was only diagnosed 1 month ago with PF and last week he was rushed to hospital he turned blue in the lounge room. He has been in for 1 week, we are taking it day by day. He is on antibiotics, gas, oxygen, optimum levels, the lot. They are not sure whether he got pneumonia or whether it's a combination of the PF and chest infection so are treating everything at once. He's been in 1 week now. He seems in high spirits and started tube eating. He is trying to laugh and talk but very weak. He's a fighter. Because of all the oxygen, he is dehydrated and likes having cold face washers and towels draped wiped across his body - sometimes a few hours at a time. You might like to try this. We also have these sponges on sticks, like water lollipops that he sucks on to get a little bit of moisture. Just don't saturate the sponge as it could cause fluid on the lungs. I hope this helps. It helps just to write it. "

I was dx'd 4 years ago....I have been stable now for the last year. I had a couple chest infections last year that put me on oxygen. 1 lpm....not too bad.
I'm trying to make as many memories with my kids as possible....we all went to Jamaica this year.....I want them to have good memories even after I became I'll.
Being on oxygen has really helped.....it takes a lot of stress off of your other organs too. I worry about pulmonary hypertension.

Enjoy whatever time you have.....no one knows what their expiry date is.....enjoy and appreciate every moment of your life!

Beth

my only worry right now is that my pulmonlogist has told my employer that i can return to work without restrictions or limitations. his feeling is that while i have IPF, it is not a disabling disease and that until i need a lung transplant i am capable of working. my job was heavy mechanics....requiring me to lift 100+ lbs on a regular basis. lots of stair climbing, walking, ladders, exposure to chemical, fumes. part of my tasks included welding....and according to him, none of this would cause me problems or additional stress......yet he is suggesting i use O2 for nighttime.....go figure.....i worry because i may have to try to return to work....i'm 59.....oh and BTW....SS declared me disabled......based on my pulmonologists diagnosis.......talk about messed up!