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The Vest...I have a question for my readers

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In school when we went over airway clearance we learned about the vest. I didn't think much about it until I started talking to all of you, my new friends, living with Cystic Fibrosis. Now I know that the vest has cut mortality rates in half, I also know that it costs over $15,000. Now I have some questions. Do you have one? Is it easy to get and get covered by insurance, medicaid, or whatever you use? Do you know of kids with cf in families that cannot afford one? Is the company that makes it receptive to this and willing to help you get one, even if you can't afford it? I don't mean to pry but I have plans and ideas and the answers to these questions will help me. Please leave a comment or if you'd rather it remain private please email me at marcus.williford(at)gmail(dot)com. Thank you.

Oh, before I go I wanted to tell you guys about a new blog I found. Her name is Salty (I'm sure thats not her real name) and she seems to be living with CF and diabetes. Her blog is Salty and Sweet. She's a hottie too(sorry,I just had to throw that in there. I am a guy after all). Here is what she says in the "about me" section

"Other Cystic Fibrosis warriors must be out there. I believe we must band together, share with each other, and fight these horrendous diseases together. Knowledge is power. The more we know the stronger, and healthier, we each will be.

I have dedicated many hours of my life reaching out to help my doctors find a cure and new treatments for Cystic Fibrosis. Now I want reach out and connect with others who have CF, those who have CFRD, friends, family and anyone else who knows what it is like to live with health issues, and those wonderful people who support them."

Let's get to know her too.

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Jessie said...
February 21, 2009 at 8:13 PM  

We have a vest, hillron called every couple of weeks for about 2 months and got our hours of use. if we were not using it as directed then the insurance would not pay for it and the vest would go back. We used our vest so the insurance approved it. It was worth every penny I would have paid 15,000 myself for it.

Carolyn said...
February 21, 2009 at 9:03 PM  

Hello, We had a Hillrom first when my kids were 5 and 2. At the time our insurance would only give us one! They didn't "buy" it for us but leased it for us. Dr Warwick is the inventor of the vest but no longer asso with hillrom. He is the top cf Dr in the US and is in Minneasota. He came up with the new version called the Incourage respitech vest. It is the new and improved vest. When we moved to Austin we took our boys to see Dr Warwick and he helped us a lot with both of them! I feel like he saved Branson's life! After that we pushed our insurance (we had new insurance at the time because Paul had a new job in Austin) and it took us 6 months but they got us 2 machines. The incourage system vest runs about 11,000. per vest and our insurance bought both vests for us instead of "renting." We feel very blessed because I know a lady that has 5 kids wcf and only 1 vest. In my opinion, if you have cf you should automatically get a vest! Period! But that's not the way it works and it is a shame! I know many that don't have a vest at all. We are very lucky! We love our incourge vest!! About a million times better than the Hillrom!!

Carolyn said...
February 21, 2009 at 9:08 PM  

opps...when I say vest, I mean the machine. We have 2 machines and I know people that only have 1 machine but more than 1 child wcf. You have to take turns on the machine if you only have 1 and it takes 30 minutes each or more. Also after we changed insurance we had to give back the Hillrom. They would of let us keep "renting" it or buy it at a discount but not much of a discount. If I remember right they would of charged us about 400.00 a month to "lease" it and around 14,000.00 to buy.

CFlover said...
February 21, 2009 at 9:50 PM  


Insurance paid for M's vest.
It was easy to get and the company worked well with us.

Hope this helped =)

Cara said...
February 22, 2009 at 1:52 AM  

Hey Marcus! I have a Hillrom vest too and I love it. My husband is in the Navy, so they fully paid for mine. Hillrom does call to get monthly hour readings and I've come across a few pretty nasty people who work there, but I really can't complain at all.

Marcus said...
February 22, 2009 at 3:13 AM  

Thank you all for helping me with your stories about the vest. I was thinking of starting some non-profit organization to get a vest for all of the kids with cf who can't afford one.

Julie said...
February 22, 2009 at 8:45 AM  

Seamus uses the InCourage machine and we love it. Our insurance covered it all but I know some are not so lucky. It really changes everything because I think it does a much better job than I could ever do manually.

In Europe, I think it's rare to use a vest. I read a story written by an Irish CFer who came to the US and couldn't believe how much better the treatment is here. The average lifespan for CFers in Ireland is only 21 and it's a very common disease there.

mjdav said...
February 24, 2009 at 11:44 PM  

Thank you for your interest and compassion for CF'ers! You are going to be one great respiratory therapist! Maybe you could find your way to Peoria, IL when you graduate!

Ashley's Grandma

saltyandsweet said...
March 2, 2009 at 11:44 AM  

Hi Marcus,

*blush* thank you. :)


CFMama said...
June 13, 2009 at 10:34 AM  

My son Nathan has CF and is 9.5 months old. I have been fundraising and saving for the Vest since he was diagnosed at 1 month old. He has NJ's family insurance but Plan D which only covers diabetes related durable medical equipment. =(

Nathan's Fight

Eri said...
June 15, 2009 at 1:03 PM  

My son has the Incourage system by Respirtech. Our insurance covered 80% of it and Respirtech is allowing us to pay the balance in monthly installments. They don't send a reader out to our house but we are very consistent with our use. $2500 isn't so bad, compared to the $15,000+ without insurance.

junctionbulldog said...
September 9, 2009 at 4:03 PM  

My family has a Vest machine and looking to sell it. My grandfather used it before he died. It was not used much and is like new. Paid $15k but would entertain a reasonable offer for it. Call 401-473-1814 or send an email to Tim at junctionbulldog@aol.com

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