RE: "... it was difficult to get diagnosed for me because of my young age, was repeatedly told i had asthma and fobbed off with inhalers, funny though my gran diagnosed me just by looking at my fingernails, then i told them to look specifically for signs of fibrosis and they picked it up."
I have noticed that it is more the general practitioners that need education on IPF and PF and COPD in general. It was about two years of piddling around with cough syrups and such with my GP before someone I guess looked at the x-ray or CT correctly. Sounds like a common story amid these pages.
"I am NOT looking at a transplant and am NOT on any oxygen or medications."
Not wanting the transplant is not necessarily the same as not wanting oxygen, in that the O2 at least gives you some ability to help yourself and participate in life until the big wind-down begins. That said, I applaud your choices either way you go.
"My view is quite like yours regarding hanging on even at my young age although my family think I'm selfish, although I have other reasons for refusing treatment which I'll elaborate on if you wish to discuss further"
Yes, elaborate by all means. Sounds like there is something deeper going on with you.
As far as your family considering you as selfish, wow, that's a heck of a thing to endure. Ironically, it sounds like those family members need some guidance or therapy or something. You sound OK.
"...my main symptoms are chest pains ... I just feel so tired and weak all the time."
I am not there yet. This thing is developing slowly on the outside and quickly on the inside. That is, it looks to be progressing fast enough to the doctors even though I am still getting around quite a bit - albeit on O2. Hell, I can wash the dishes even. Also I have been doing some physical/pulmonary therapy which seems to retard the downhill spiral. I can share some of that info if you want.
"My wife is a super hero she does everything for me including emptying my urine bottle, if i didn't have her i dread to think how i would manage....ok enough for now sorry for the long winded reply!"
My wife too is the hero in all of this. The "mama bear" can be a bear at times, but does help me both physically (carrying E-Tanks around and the like) and logistically with dealing with doctors, testing, and data overload. She does rather p*ss off anyone that she thinks is slacking in their responsibilities for my health though. I have to kind of cover for her on the sly once in a while.
But your statement about changing the urine bottle tells me more clearly of your current status. After my biopsy (the big one) I had to stay in bed and pee in a bottle and take a rest after walking ten feet to the bathroom etc. That passed. I am pretty active considering things. I do take a walk and do some exercises with therabands (big rubber bands).
Now, for the nitty-gritty. I'll just start this part and if you are interested and have the energy we can continue. First, I like Sartre and especially Camus (whom I have not really read) who state that the only real question regarding one's existence is whether to commit suicide or not. I think this is true. It seems all other decisions are mitigated by other people and other events. This deserves discussion. As I spend most of my time with my cat and a laptop, I don't get a lot of feedback on that, but the cat is still the best example of existential resolve. Don't you even envy animals? They are not encumbered with the tragedy of a future. That is, a future that ends in death. I'm reading (slowly) a good book on this right now.
Your turn,
es
PS: I'm OK with other's chiming in here if you are. Although the threading of these discussions is a bit limited.