Re: Re: Got my appointment at The Jewish Hospital!

[Guest guest]

Bruce- United make syou use their oxygen and charges $150 each way. My )2 provider doesn't loan out the stuff to use away from home. You have to purchase it for $5000 which I don't have. There is only one other provider in my area LINCARE and I will call them and find out if I can rent one from them but I understand that they only last for a couple of h ours and I would nee done that lasted at least 8 hours. And, from what the group says, it will cost me $400-500 for the week which is a lot more then $300! I guess after this trip I won't be going anywhere again.

As to a counselor, I have one but sh ewould never see a change in me and even if she did I would probably not respond to her. I tend to be very untrusting when I get ill. But first lets see what Jewish says. It may be that prednisone isn't necessary since I don't have inflamtion. My pulmo dude said they will probably recommend some kind of chemo. That I don't understand at all.How can Chemotherapy help? Joyce

Re: Got my appointment at The Jewish Hospital!

JoyceI have chosen not to take prednisone for similar reasons to many ofyours. However, I also have a form of disease and combination ofindicators which would say the odds are extremely against prednisonehelping me. If my form of the disease or other factors were different,then my choice might well be.You mention the history of mental illness which I have also and based onthat would strongly advise more than psychiatric medication checks asyou travel this path. My counselor is my life saver. A counselor whoknows you can detect changes before others and can also help you throughthe rough battles ahead, the less than supportive friends, the choicesyou face.As to the flying, I don't know what airline you're flying but last Ilooked there was only one major airline that would not accept a POC andthe vast majority of oxygen suppliers will loan one for a week. That wasa major question I asked before even selecting an oxygen supplier.No hotel provides you insurance against items in the room unless it isdirectly through negligence on their part, which you can prove.Unfortunately, your ability to prove anything is slim in thosesituations. Many have business centers you can use in the evening andavoid lugging a laptop on the trip. Otherwise, a check of your ownhomeowners insurance might provide something, but then there is thedeductible and the fact it isn't your laptop.> > >> > > Telephone tag is over! I have my appointment at Jewish Hospital!> It's> > the week of March 23rd. Actually it is just for 4 days and that is> > perfect! I will be out and gone on the 4th day at 10am! Now things> are> > working out for me! Have plenty of time to make arrangements and get> set> > and am excited! My birthday is the 10th and maybe they will have> some> > great news for me. My pulmodude says they won't be able to tell from> my> > ct scan what is causing my PF because the scan shows overlapping..I> > don't understand what that means. He says they will just tell me to> get> > a Vat. I don't understand why my pulmonologist isn't worried about> that> > since he said during the broncoscopy I bled horribly that he had to> stop> > and not get many samples. He said they had a hard time stopping the> > bleeding...I asked him if he knew why and he said NO HE DIDN"T.Now> > shouldn't that be of some concern when telling me to get a biopsy> that> > you cut into my side and into my lung????? Joyce Rudy AZ IPF 11-08> > >> >>