U.S. Food and Drug Administration Approves Cayston(R) (Aztreonam for Inhalation Solution) for the Improvement of Respiratory Symptoms in Cystic Fibrosis Patients with Pseudomonas Aeruginosa

http://www.gilead.com/pr_1393831

For all my buddies who couldn’t qualify for the study or the ‘compassionate care’ program, it’s your time now!!!

(now for the fight for insurance coverage… fun fun!)

A few months ago I sent back the oxygen bottles that Apria Healthcare sent me.  They were just too big to lug around on my back when I am outside the house.  I am mentally not ready to start dragging around a huge bottle on a cart, and would like to put that off as long as I don’t need oxygen 24/7.  After too many times of becoming promptly exhausted after short walks I decided to bug Apria for smaller bottles.  Heck, even this morning I had to stop and catch my breath just walking to the coffee pot at work (yea, it’s a bad breathing day).  I hate dealing with Apria, since they always seem to screw up my order, send a delivery guy who leaves the stink of cigarette smoke in my house, stand there and argue with me that what was ordered is not really what I want (when I KNOW what I NEED), such a pain in the ass.

I don’t usually call out company names when I complain, but this time I have had enough.  Yesterday I spoke with someone on the phone. We set up a delivery for some very small tanks (with a nice little backpack) that I could use during exercise, they won’t last long, but that is all I need. That evening the delivery guy tried to give me tanks that stood as tall as my hips! Dude! How on this green earth do you expect me to carry those?!!  Then he argued with me for probably 10 minutes that I am supposed to get these huge tanks and that I need a respiratory therapist to make a $65 visit to check my oxygen levels.  He laughed at me when I asked him if he wanted me to go get my pulseoxymeter to prove that I don’t need 24/7 oxygen. I am still so pissed at him. I don’t need an RT to check, it’s on the prescription, that I need it, just look stupid guy.  I just need oxygen, something that will last 30 minutes or so.

Today I have spoken with two people at Apria trying to get the correct sized oxygen bottles. Turns out they do not carry anything smaller than what I returned months ago.  They suggest I get a portible liquid oxygen system, which probably costs several thousand dollars.  It is a schnazzy little system, BUT, do I really need something so expensive?! Geez! Good news is that my insurance is raising their lifetime limit for duriable medical equipment at the first of the year (which I maxed out when I was 16), so hopefully I won’t have too much out of pocket if this is my only option.  It just seems rediculous that they MAKE smaller oxygen bottles, but since my oxygen company doesn’t want to carry them I may be more $$$ out of pocket.  Unbelievable.

I want to exercise, I want to improve my lung function… why doesn’t my oxygen company want to help me improve my life?!!  Thanks a bunch Apria!!

Stuck mucus is the perfect breeding ground for bacteria. When bacteria takes over it causes an infection, similar to pneumonia, we call it a CF exacerbation (exacerbation means “to increase the severity, bitterness, or violence of (disease, ill feeling, etc.); aggravate”). For me it means 3 weeks of IV antibiotics to tame the evil bacteria. Continuously I have an infection since I can never clear out enough of the mucus that hangs out in my lungs despite taking hours a day doing breathing treatments which include inhaling medications, inhaling super-salty-saline, and doing physical therapy with my Vest, or having a family member or friend literally beat on my body. So my treatments vary to the degree my infection is on any given day. Infections cause permanent damage to the lungs, bronchiectasis, pneumothorax (collapsed lung), and some other really horrible things.

Any cold-virus I get, even allergies or any other irritant like cigarette smoke can cause enough excess mucus for an infection to kick into high gear. Less than a month ago I completed a “tune-up” which is what we cystics call it when we have to put most of our “regular” lives on hold and focus on maintaining our bodies. A tune-up consists of two to three weeks of IV antibiotics (sometimes in the hospital, sometimes at home), an oral antibiotic may be thrown in for an extra measure (all causing some wonderful side affects!), three to four physical respiratory treatments a day that last about an hour each, upping the number and doses of inhaled medications, among other stuff… all of this to help clean out the crud.

Over the past couple of years I have realized that my current method of airway clearance is not working for me. Having been fairly compliant with my care recently, I still had a steep decline in lung function caused by an infection taking over. I desperately need to find something that will help me get this thick sticky infected crud out of my little lungs. It has been less than a month since my last tune-up and I am already starting to feel overwhelmed with lung crud again. My “real” life is no where ready for another tune-up, I owe my work my first born (which will be difficult since I’m not having children) because of all of the “vacation” time they are letting me borrow, bills to pay, house to clean… I am not ready for another interruption.

For maybe 14-15 years I have been using “The ThAIRapy Vest” by Advanced Respiratory (company purchased by Hill/Rom in 2003). My machine is old, but still functions. The actual vest that I wear blows up with air and pulsates/vibrates my lungs by varying the air pressure within the vest, squeezing my chest. This Vest caused a financial pain in the patoot because when I first received the machine, it was supposed to be for a free 30 day trial. Unfortunately the company immediately charged my insurance, maxing out my lifetime maximum of durable medical equipment coverage. So even though I didn’t like the machine and it didn’t really help me, I was stuck with it. Without any insurance coverage left, I couldn’t get a different type of device.

Now that I am all grown up, I have my own horrible insurance coverage (that was my dad’s insurance that was maxed out, which is now my secondary since I am legally handicapped, but it still doesn’t cover much and has NO DME coverage left). I have a new lifetime max of $10k for durable medical equipment (DME) with my current policy. Now, my insulin pump and CGMS (IF, (big IF), the insurance agrees to pay their portion) will be going against the DME coverage. Leaving me not much coverage left to buy a new airway clearance device, which I need since the Vest is proving not to work for me and I am not getting any healthier. These devices cost between $10,000 and $16,000.

Recently I have tried out two different pieces of equipment, one costs $12k and the other I am still trying to find a price, but it is upwards of $10k. I really like both decives, and both have been effective forms of treatment for me, but there is no way I could ever afford both even with insurance. I am going to write up a review of my opinions of each piece for others, as I have promised over on the CF message board, in short time. I am trying to decide if another fight with my insurance company will be worth it. The stress that fighting causes me is something that really affects my health anyway, so I am trying to balance in my head if I can handle it.

I asked my case manager at the insurance company about getting a new Smart Vest and she said “we almost never approve those”. I know I will be in for another hard battle if I decide to go for it.

Oh yea, I forgot to mention I tried to get an upgrade to my current vest system, and insurance denied it. I think the newer machine would work better for me, but I haven’t tried it yet. That would have only cost $6,000.

I wanted to get you up to speed with my newest struggle before I posted my reviews of the airway clearing equipment. I will be posting my reviews of a Intrapulmonary Percussive Ventilator (IPV), The Frequencer and The Smart Vest very soon for your reading pleasure! The Frequencer is quite an interesting little device! Can’t wait to tell you about it!

Oh, while creating links in this post I came across the article on CF on Wikipedia. I think it is very honest and true to what CF is. Take a peek at it if you haven’t already. Cystic Fibrosis on Wikipedia. For some of you it may read like the worst case scenario of side affects you may read on the side of a medicine bottle. But in all honesty and actuality, every person with CF most likely will deal with all that is listed on the page at some point in their lives.