Need Guidance - Need to Vent - oxy needs have changed

[Guest guest]

I'm going to give a readers digest version update on what has been going on with

me, need to vent and need guidance - Hate Sympathy!!! -

Soooooo - Went to Cleveland Clinic for evaluation on transplant. Went pretty

well, then the Cleveland Dr saw something on CT, he said it was probably

nothing, but before we go ahead I need a Pet Scan. OSU did a pet Scan and they

found a tumor in left lung, byopsy shows cancer, transplant is out. OK that is

the way it goes, I at least had 61 interesting years, or what ever it turns out

to be, I know the old bus can hit me thing. Got my options yesterday, tumor too

big for radiation treatments. Butttttt they do have a chemo that works very well

at shrinking this type of cancer, doesn't usually make you sick or you hair fall

out. Ok, as long as it hasn't metastasized to my brain. I haven't heard from

them today so I am a little worried since they had access to the MRI results

yesterday. So that is the cancer thing, but I am wondering how to deal with the

ipf thing. My breathing is worse than ever, I am on 10 liters on my home

concentrator, that keeps me up to 96 at rest. If I get up and move - for

instance - I went to the to the kitchen, maybe 9ft, made me ice tea and went

back to the living room. Sat meter went to 54 - I am gasping as you can imagine

- it took me about 5 minutes to get to 96.

I need more air I know, but I am being told that they do not make concentrators

past 10 liters. My husband called around to make sure, and a man told him if I

am struggling on 10 liters than he, my huband, needs to call the emergency squad

and get me to an ER. I just got out of OSU a couple of weeks ago and the only

thing they did was bruise me every where, blow 3 IV's.....etc. I need a PAP

machine to help me through the hard times and to breath till I actually can't

anymore. Please if someone has any suggestions, other than ER, I am all ears, I

mean eyes. Let me remind you I am 96 at rest at 10 liters.

So there is my story. I absolutely feel sorry for my self....no I don't,

only at first and I am over that. I am looking for some relief for now, that is

all. I am not afraid, just not ready, I have way to much paper work to get

organized.......so please no sympathy just don't need that, just some great

suggestions and my memories of the ocean.....

ellen