Situation update

[Psyborg]

I just wanted to put this in a single spot so I wasn't posting multiple threads

Rtx is done. Now my insurance is saying there was no pre-approval. I hope that works out...64k between the two treatments would pretty much bankrupt me lol. I think its just insurance company games though.

My doctors secretary has me to the point that I won't call unless ihave something unbelievably serious come up. I will be talking about this at my next appt. At least I got a number for the nurse practitioner at my second infusion.

The pulmonologists have me on cpap now. It does help the sleep, but I feel more congested during the day now, not sur if my left lung is just getting more opened up than it has for a while or what. Now I have to find out if insurance will cover that when I don't have apnea.

[pberggren1]

Bob, you have to get the secretary thing resolved. You have to be able to call or contact your doc all the time without worrying about things like that.

And then the insurance to worry about as well? GEE WHIZ!!!!

[Sangye]

Have you mentioned the increased congestion to your pulmy? Maybe your nose is getting dried out or something.

I hope you can resolve the issues with the receptionist and your insurance. What a pain.

[Psyborg]

Oops I meant chest congestion. I feel like Im coughing up more gunk since using cpap.

Overall the rtx must be doing good because between stress about the doctor and massively increased stress at work I'm still rolling along lol. I am in a perpetual state of headache though.

[Sangye]

Oh, well maybe that means the increased oxygen is helping mobilize some of the trapped mucus. I bet your doc will know.

Are you having tension headaches or some other type?

[vdub]

I have had a cpap for about 3 years now. I got it during the dx stage when no one knew what I had. It does help, but I don't love it. I do use it every night and take it with me on vacation (holiday). My cpap has a humidifier on it and I do like that.

One of the very best things that happened to me was a surgery on my nose to open up the sinus channels. I was somewhat apprenhensive when it was first suggested, but every day, I get the benefits from it and it is great!

I hope you get that insurance thing straightened out, Bob. That's got to be a pain. I have been real lucking in that regard -- my insurance is pretty decent.

[Psyborg]

I'm thinking that is the case on the mucus Sangye, at least that sounds probable

As far as the headaches, the Nurse Practitioner thought it was probably folic acid depletion, so they switched me from Folic Acid daily to Leucovorin weekly (which I'm assuming must be more potent). They headache is right dead center between my eyes. Different than the sinus headaches that I've experienced before.

The hardest thing about the CPAP is getting used to something being on my face at night. I'm still taking it off at about 4:00 am on occasion

I'm hoping the insurance thing won't be a big issue...I'm hoping the hospital just didn't provide all the info they should have.

[Rini]

ok so i have gray snot that was bad like bloody noses all the time , pulling beef jerky out of my nose nasty...diagnsed & on drugs it got lighter VERY slowly but im at the point that i can smell again. I feel like Sulfameth helps but im not shur what it is really supposed 2 be doing...at what point should i be really consurned about my nose? are there red flags ...aside from the granuloma snot stuff that is like puddy on the back of my thought? i mean this is seriously nasty but it has been getting lighter (as in the amount of congestion)

[Psyborg]

I don't have sinus involvment at this time so I'm going to defer on that question, but I think that many of the folks on the forum use a Neti Pot to help with the sinus congestion issues.

[pberggren1]

If you have blood or thickening mucus and more mucus in nose then that is when I start to get concerned.