Stefani

[Guest guest]

FIGHT, FIGHT, FIGHT! Joyce Dalton (former member) used to say that it seemed like at times the insurance companies and the doctors were trying to kill her. She was kidding of course (sort of) but the circumstances you talked about, insurance companies and O2 suppliers overbilling and misbilling, doctors ignoring requests, hospital staff not doing the right procedures to move you out of the hospital soonest all illustrate the need for us to be pro-active on our own behalf.

Being headstrong can only benefit you. Keep fighting. Question everything that seems wrong to you. Trust your instincts!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Saturday, September 19, 2009 9:36:06 AMSubject: Re: Here we go again.... now I have UIP

Dyane -I own a 5 L concentrator, bought for me by a previous insurance. I have an Ifill, 3 tanks and a stand for the D size tank. From what your unsurance company is getting billed, I am the one getting ROYALLY screwed. The bills for the insurance company are in excess of $600 dollars and that is for 15 days in the month of July ($21.00 a day PLUS for oxygen supplies) and the cost of the IFILL rental. I am going to start screaming to everyone!! By the way, I do not get an itemized bill. The itemized bill goes to the insurance company, I get a copy from them telling me what they will pay for and what my share is. I get a single line bill from the oxygen supplier saying this is what I owe after the insurance company is billed. What a racket. I am going to ask the oxygen supplier for a full explanation of what they are billing for. Maybe I am missing something. I have a CPAP, but I thought that was purchased. It is such a pain when you have two

different insurers (we switched from Aetna to Blue Cross/Blue Shield). Aetna preferred purchasing supplies as opposed to renting. That is how I got the 5L concentrator and nebulizer (that I no longer use, but is nice to have as my husband has major allergies). My regular GP had me using the nebulizer with a saline solution for my lungs.I also did a check on the pathologist that my pulmo dude sent my biopsy slides to, a Tom Colby with the Mayo. He is in sdale, just like Bruce said. This really pisses me off because BEFORE I had the biopsy, I provided my pulmo dude with the name, address, phone number and email address of Dr. Fernandez, the doctor I saw while at National Jewish and requested the slides be sent there. I gave the same information to the hospital. AND MY WISHES WERE NOT EVEN TAKEN INTO CONSIDERATION. Another SCREAMING point. I had contacted Dr. Fernandez and he told me he would be glad to work with my pulmonologist here in

Salt Lake City. This pulmo-dude is my third. This one was the only one I could find that my insurance would cover. I have been trying to work with the system and every time I do, I end up getting fucked (sorry for that) over.My thoracic surgeon says I am a little headstrong (YOU AIN'T SEEN NOTHING YET). He claims that is why I was out in 5 days (I would have been out sooner, but one of the staff removed the clamp on the drainage bag and the didn't have an accurate measure on my 24 hour drain which was an important part of the "yeah, she is ready to have her drain tube removed and she can be released" Process.As to how I am feeling... I have been stable for 3 years (without any doctors assist), according to Dr. Fernandez at National Jewish. I brought all of the initial information to Denver in June. They compared everything to the tests they ran while I was there for a week. Dr. Fernandez thought I would do well for 10 plus years saying

no one really knew much about PF, but from his findings, it looked like I was doing reasonably well (except for the fact I really needed oxygen). I have not had a big drop in my daily functioning, I just take my time and don't do anything that hurts or over-exerts me. I love having an oximeter to check my instincts and I do use oxygen when I drop to 88. My CPAP keeps me around 92 at night, but I can bleen in an additional 2L dose of oxygen if the air quality is bad or I am feeling stressed or uncommonly fatigued at bedtime (it happens once in awhile). It has taken me 3 years to bring my routine blood tests all back to a relatively normal state (I am thinking it is the prednisone that threw my liver numbers really out of whack). They are still not to their pre-prednisone levels, but are a lot less out of normal range.Sorry, I getting "blousy" and rant a lot when I get worked up by these idiots out there. I have a lot of work to do this

weekend as I build my case(s) with the oxygen supplier, insurance company and my pulmo dude. Going to get my facts, work out my pitch (so it doesn't sound like I am telling them to go to hell) and prepare for Monday.Thanks for all of your support ....StefaniILD 2/2006, NSIP (cellular) 6/2009, UIP 9/2009, Diabetes II 2/2006, Sleep Apnea 4/2009My > >> > What a roller coaster. Originally in 2006, I had a pulmonologist tell> me I had ILD, but it wasn't COPD or Sarcoidosis (what does that

leave?).> That was all he told me. Then I had Best Doctors in Boston tell me I> really needed more testing. I found our group and went to National> Jewish where I was told I "probably" had cellular NSIP. Only a biopsy> would prove what I had. The local pathologist hit every possible> Pulmonary Fibrosis buzz word in his review of my slides you can imagine.> Honeycombing, NSIP like with indications of UIP or IPF. So my> pulmonologist said he would send it to Denver for a reading there. He> changed his mind and sent it to the Mayo Clinic and the pathologist> there, Tom Colby. Now I am told I have UIP and the prognosis is 3> years. Someone forgot to tell me... I have already outlived that> prognosis. Does that mean I am on borrowed time now? Bruce, do you> have any insight? My pulmonologist went on to say that none of the> clinical trials that he was aware of offered

any drugs that he had any> confidence in. He went on to tell me that prednisone was not an option.> Go figure. I am now back at square one AGAIN. If I go in for another> biopsy, can I get another reading? LOL What a racket. And, insurance> doesn't pay squat on oxygen equipment. I am getting a little less than> 50% of it paid for. At $600.00 a month, I am going to go broke in a> hurry. I guess it would be less expensive to just buy the equipment and> leave it at that.> >> > Stefani> > ILD 2/2006, NSIP (cellular) 6/2009, UIP 9/2009, Diabetes II 2/2006,> Sleep Apnea 4/2009> >>