What sneaks!!

For almost 2 years now, we have enjoyed my husband's wonderful health. Yes, my friends, we are closing in fast on Greg's 2 year post-transplant anniversary!! It is amazing what you can learn in those 2 years about healthy, happiness, and what is truly important in life. Even after all this time, we are still learning things we never even thought were possible - like how the hospital transplant clinic is a bunch of sneaks!

Now that I have your attention, I will bring you into our little family and let you know one of the transplant hospital's dirty little secrets. How do I know about it? Well, upon a recent bill, we happened upon this information and the hospital did nothing to cover it up when we argued our bill. First, we hardly ever receive a bill from the hospital because our insurance was paying everything except the copay. As you may remember from an earlier post, our health insurance has changed due to a split in my company and as of September 1st, we are now with United Healthcare. That is why we received this bill, because they needed to know who to charge their little sneaky expenses to and had out of date information.

The bill stated that every Monday, since the 1st of September, we were being charged $68.30 for respiratory services. Interesting since my husband hasn't been to the transplant hospital since July. Upon questioning these charges, the dirty little secret came to light - they were charging us $68.30 every time Greg sent in his spirometry readings through the phone line to the hospital. Per his release post-transplant, he was told to do his spirometry twice a day and send it into the hospital once a week so that he, and the hospital, can monitor his lung functions. He was receiving praise upon his last visit as hardly anyone sends those in anymore. We had thought other patients were getting lazy and Greg was a "good boy" for sticking with the routine. Well, every time he sent one in our insurance was charged $68.30!!! No wonder other people stopped sending them in!!! Let's see: 2 years post transplant x 52 weeks per year = 104 weeks. Now, take that 104 weeks times $68.30 and we have spent $7,103.20 just to send the data to someone's computer at the hospital!!! No one ever told us we would be charged per submission. We thought they would pull up the data should he ever become sick and need it on hand. Needless to say, my husband has decided to no longer submit his spirometry numbers but he will continue to do it twice a day for the rest of his life. If he ever notices a significant change, we can then send it to the hospital... Otherwise, we will hold onto our $68.30 a week thank-you-very-much!!

"US News & World Report" Highlights CF Foundation

Received in our email this morning:
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Dear Friend of the Cystic Fibrosis Foundation,

We are excited to let you know that this month the CF Foundation is featured in another national news publication--U.S. News & World Report. In an article posted online Sept. 17 (and available Sept. 25 on newsstands), the Foundation is described as one of several nonprofits playing an important role in helping to finance early-stage drug research. The article is titled "Bets on Biotech: The nonprofit world steps in to finance for-profit drug ventures."

As traditional investors favor companies that have drugs nearing FDA approval, the need to fund startups is greater than ever, the article says. It notes the CF Foundation has invested more than $161 million overall in drug development, and specifically $42 million for a drug that Vertex Pharmaceuticals has in Phase I clinical trials. (In fact, the Foundation's commitment to Vertex is now in excess of $70 million, provided Vertex continues to meet set milestones.) It also notes the CF Foundation provides special expertise to biotech firms through our network of doctors and patients, and has the ability to help set up and conduct clinical trials.

Click here to view the article on USNews.com. (This link will be active until Oct. 1. If you are unable to view the article, please contact us at info@cff.org for a copy.)

We extend our heartfelt thanks to you for your continued support. Thank you for all you do to help us add tomorrows every day to the lives of those with CF.

Sincerely,
Robert J. Beall, Ph.D.
President and CEO
Cystic Fibrosis Foundation, National Office

First stem cell transplant . . .

First stem cell transplant centre to cure killer diseases

Article: http://www.hindu.com/thehindu/holnus/008200609210322.htm

New Delhi, Sept. 21 (PTI): Killer diseases like leukaemia, stroke, diabetes and crippling spinal cord injuries could soon be treated at the country's first stem cell transplant centre to be launched in Chennai next month.

Patients suffering from haematological and oncological ailments would be treated first using stem cells from various sources -- adult bone marrow, umblical cord blood and peripheral blood.
"Stem Cell therapy is fast emerging asn a revolutionary way to treat various diseases and injuries with wide ranging medical benefits," said Anthony Finch, who joined as Advisor to LifeCell, which is launching the country's first stem cell transplant centre.
Stem cell transplantation has been used for more than 30 years to treat a variety of cancers as also some types of solid tumours where other treatments have failed.

"Bone marrow cells are being used for transplants for the past 30 years. Its only in 1988 that the first cord blood transplant was done," Prasad Mangipudi, Vice President LifeCell told reporters here.

The transplant centre would be operational by next month, Mangipudi said adding that he would like to wait for six months before venturing out on an expansion plan.

LifeCell currently offers umblical cord stem cells banking facilities and has about 4,000 subscribers, Stem Cells are undifferentiated cells that retain the ability to produce an identical copy of themselves when they divide and differentiate into other cell types.

They have the ability to act as a repair system for the body replenishing other cells as long as the host organism is alive.

Getting Rid of the Old

I know you might find this silly but I am actually a little sad to get rid of our old couch. Why? Honestly, this was one of the first pieces of furniture that we purchased together back when we first moved in together. That was 8 years ago and since then, it has seen us through many trying times. Back in 2002, it served as my comfort zone and bed as Greg lay in a hospital very ill and on a ventilator. The cordless phone was always above my head on the cushy arm of the couch so that, should the hospital call in the middle of the night, I can easily grab it on the first ring. Ironically, a couple of times they did call in the middle of the night; first to tell me he was put on the ventilator and second, two weeks later, to tell me he was back on the ventilator after being successfully removed for a few hours. The warm and cozy back of this couch served to replace the feeling of my husband sleeping next to me. I couldn't even imagine sleeping in the bed without him.

When Greg came home 9 weeks after that episode, it became a living area by day and a bed by night for him. His home ventilator and tons of medical machines were all propped up beside the couch and that is where he lived for another 6 months - on that couch. It was a far cry from the hospital beds or being cooped up in the small bedroom by himself. It served as a central point of living in our tiny apartment and Greg wouldn't miss out on anything happening around there.

After he got off the ventilator, it served as a place we could once again snuggle. No machines lay between us and my head could once again be rested on his chest to listen to the crackling of his very sick lungs. Quite honestly, I didn't care about the noise they made for at that moment, he was alive and we were holding each other warmly on our oversized couch.

Then in December 2004, it was once again the place where I was able to lay my head upon his chest but, this time there was no crackling. It was the sound of clean, new, and quite healthy lungs that I heard. As I looked up into his eyes, for the first time his cheeks were rosy. There was life and life was good.

Alas, now it is time for us to part with our beloved couch. It takes up to much space in our house and, given that I am allergic to dust mites and he has new lungs, a fabric couch is not the healthiest thing for us to have. So, it is with a heavy heart that we sell our couch but we have a new couch from which to create more memories... With tons of life to live and life to be had.

New Blog Design

If you haven't noticed already, we have a new blog design. I wanted something that would portray my true feelings and the person I am deep down inside. Yeah, I know - I usually don't even hug people or get too touchy so how can I go for a design that is touchy-feely? Well, it is because this is the true me. Unfortunately, my raising wasn't the best and there were a number of people that hurt me. Given that, I have become a little more reserved in person and lack the ability to get too emotional with others - especially other women. Needless to say, I am a very laid back woman who would much rather get lost at the beach then on the Internet. My feet planted firmly on the white sand beaches, walking hand-in-hand with the love of my life, while our two chocolate Labs run in and out of the ocean tide. That is truly where my heart lay.

"Forbes" Highlights CF Foundation Research

Received today in our inbox:
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Dear Friend of the Cystic Fibrosis Foundation,

We wanted to let you know about an article on cystic fibrosis research that appears in the Sept. 18 issue of Forbes. The piece (link below) highlights two CF research initiatives that reflect not only the work of our two partners, Inspire Pharmaceuticals and Vertex Pharmaceuticals, but also the sound investments of the Cystic Fibrosis Foundation. The content of this piece offers further evidence that our efforts are paying off!

The article highlights research done at the University of North Carolina at Chapel Hill that has resulted in the development of denufosol--a promising drug moving through our robust drug "pipeline." In fact, denufosol has just entered Phase 3 clinical trials and will be available to patients willing to participate in the study being conducted at CF care centers throughout the country. This work has been supported by the Foundation for more than 15 years.

The piece also mentions that, because of our investment in high-throughput screening technology at Vertex, scientists have discovered a compound (known as VX-770) that appears to help correct one part of the CFTR protein that causes CF cells to be defective. VX-770 also is a "member" of our growing pipeline of potential therapies and just recently began a Phase 1 clinical trial. We will continue to support Vertex as they work to develop other highly specialized drugs for CF. Our overall commitment to Vertex may exceed $70 million.

To read the Forbes article, click here. Or, you can pick up a copy at your local newsstand. (Note: free registration is required to access the article on Forbes.com.)

It is because of your dedication to our mission that these types of success stories exist. Thank you for all that you do to help us add tomorrows every day to the lives of those with CF.

Sincerely,

Robert J. Beall, Ph.D.
President and CEO
Cystic Fibrosis Foundation, National Office

Article: Transplant gives parents, child hope

By ANDREW SKERRITT
Published September 10, 2006

When I met Elizabeth "Elly" Hulett, she was a handful - more than I expected.

She jumped around the living room with her grandmother Sandra Hulett and danced on a counter top. Mrs. Hulett held Elly's hands like a dance partner, beaming the way only adoring grandmothers do.

The 3-year-old is two months removed from a bone marrow transplant to combat the life threatening . . . Read More >

We were sold!

Last night my coworkers and I received word that our division in the company has been sold. Everyone started to wonder what this meant for their casual attire at the office or whether or not we would still get free sodas. Me, on the other hand, my first thoughts went right to our medical insurance.

Yes, our medical insurance was changing and instead of Empire Blue Cross, we were now going to be using United Healthcare. Usually I have time to plan and get things in order before we make changes to our insurance, but with this announcement was the date that everything would take effect - today! Yep, we were given less than a 12-hour notice that our medical insurance, mail order prescription carrier, and flexible spending accounts would be changing. Immediately I got on the phone and asked where the new cards were. It seems they are being printed so now we have pieces of paper that state we do, in fact, have coverage - just in case something should happen to us in the meantime. They also explained how our debit card for our healthcare flexible spending account was suspended for at least a month and we would have to pay for everything first and submit paperwork for reimbursement. And lastly, since we are changing mail order pharmacies, all of Greg's current prescriptions for transplant medication will be nullified - meaning we have to get brand new prescriptions for all 13 of his medications from the transplant clinic!

As long as I continue to get money to pay our bills and we have medical coverage for Greg, then I am happy. Those are the two most important things... The rest is just fluff!