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please we need your help with project breathless

posted in: bruce351c garage, news on December 08, 2011 at 01:53 AM

Lacy my service dog for PULMONARY FIBROSIS DIED OF BADDER CANCER WAITING FOR THIS CAR TO BE COMPLETED SO SHE COULD RIDE WITH DADDY IN HER CAR THE CAR DADDY AND HER WOULD SIT IN AND DREAM OF THE DAY THEY COULD TAKE HER FOR A RIDE, GOD BELSS YOU LASY!

Lacy my service dog for PULMONARY FIBROSIS DIED OF BADDER CANCER WAITING FOR THIS CAR TO BE COMPLETED SO SHE COULD RIDE WITH DADDY IN HER CAR THE CAR DADDY AND HER WOULD SIT IN AND DREAM OF THE DAY THEY COULD TAKE HER FOR A RIDE, GOD BELSS YOU LASY!

THIS is the reason why our life savings is tied up in this build A man dieing of PULMONARY FIBROSIS just wants to make a difference before God takes him from the fear and pain of living with PULMONARY FIBROSIS FOR OVER 8 YEARS . PRAY FOR PEOJECT BREATHLESS TO BE COMPLETED FOR A LITTLE HOPE TO THOSE WITH THIS DISEASE THAT HAVE NO HOPE AT THIS TIME TO LOOK FORWARDE TO.
IN THE NEWS

Daily Herald Front Page Article on Pulmonary Fibrosis
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POSTED BY MATT DERDA ON 12/5/11

Patients try take mystery out of pulmonary fibrosis

By Burt Constable

Told she had a mysterious, incurable disease that kills as many people a year as breast cancer, suburban teenager Lilianna Aguirre reacted the way many people diagnosed with pulmonary fibrosis do.

“I had no idea what it was until I Googled it. I had never heard of it,” says Aguirre, who now is waiting for a lung transplant.

“I just thought I was getting old and getting fat,” admits Jeffery Peters, 67, a former runner from Streamwood who learned that pulmonary fibrosis was the reason a short hike left him out of breath. “When you find out it’s incurable and can kill you fast, it’s scary.”

“Until a family has been given a diagnosis of pulmonary fibrosis, they’ve never heard of it,” says Jennifer Bulandr, director of community affairs for the Pulmonary Fibrosis Foundation, which is hosting an inaugural international summit today through Saturday in Chicago. The summit, with a live webcast at ipfsummit2011.com, is drawing experts from Peru, China, India, Japan, France and Nigeria.

Bulandr, of Barrington Hills, first heard of pulmonary fibrosis in 2002, nine weeks before it killed her father, John A. Lukasik, at age 58. The lack of information and support spurred her to join the movement to educate people about the disease.

Pulmonary fibrosis is a scarring or thickening of the lungs. The disease, which kills 40,000 Americans each year, has no cure or even a standard treatment. In most cases, it is idiopathic, which means that doctors don’t know what causes it.

It damages the lung tissue that transfers oxygen to the bloodstream and other organs, and many patients live only three to five years after diagnosis, according to the National Institutes of Health. Some live more than a decade.

“Anything strenuous is more and more difficult all the time,” says Peters, who used to walk his Streamwood neighborhood with his wife, Michele. Unemployed since the company where he worked closed, Peters takes drugs as part of a research study and uses his prescribed round-the-clock oxygen tank only when he feels the need.

“You find your level and then you drop off. You stay at that level for a while and then you drop off again,” Peters says of his disease.

“When I tell people what my dad has, I get that blank stare: ‘He has what?’” says social worker Courtney Firak, Peters’ stepdaughter, who recently joined the Pulmonary Fibrosis Foundation staff. “That’s sort of a frustrating aspect to it.”

While the breast cancer community has built an impressive support system that encompasses everything from donations at the checkout line to football players wearing pink cleats, pulmonary fibrosis is using its 10th-anniversary dinner Friday at the Field Museum to launch its campaign: “New Decade, New Reach: Together we’ll make a difference in pulmonary fibrosis.”

“I tell my mom that this disease just kind of grabs you when it wants to,” says Aguirre, now 22 and living in Northlake with her mom and family. She has faced adversity before. A victim of another lung ailment as a toddler, Aguirre suffered a brain hemorrhage when she was pregnant and delivered a stillborn daughter in 2008.

While many people her age are consumed with holiday shopping deals and gift lists, the only list that matters to Aguirre is the transplant list of patients waiting to receive new lungs.

“On that list, I’m No. 34 nationally and I’m No. 1 in Illinois,” says Aguirre, who will attend the IPF Summit unless she gets a call from doctors that they found donor lungs. “I started crying when my doctor told me (about the need for a lung transplant), but now I’m really, really ready for it. I’m not afraid to die. I’m not scared at all.”

The more research and attention given the disease, the better, says Bulandr, who notes that the support helps patients go on with their lives.

“They go on cruises. They go on vacation. We have one who goes swimming with her oxygen. We have another who goes roller skating. Another rides her bicycle everywhere,” Bulandr says. “But we don’t have that happy story, such as a 30-year-old with two small children who beat her breast cancer and is going to live a long and happy life now.”

Publicity — even from the deaths of personalities such as Evel Knievel, Robert Goulet, Lura Lynn Ryan and the fathers of U.S. Sen. Mark Kirk and State Sen. John Cullerton — can be used to educate the public. Patients use whatever breath they have to speak out about the disease.

“I’ll do whatever I can,” Aguirre says, “to spread the word.”

Copyright © 2011 Paddock Publications, Inc. All rights reserved.

View the original article at dailyherald.com *Note: you are required to have a membership to read the article in its entirety.
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Comments

Mustang_vs_mustang_small
351 Cleveland Garage
December 08, 2011 at 09:43 AM

Bruce, sorry to hear about Lacy, had to put my beagle “FLASH” down a few months ago, hard decision for us but he was suffering and I couldn’t keep him alive for me. I know where you are coming from While I feel sorry for people with cancer I feel the cancer movement has pushed all other life threatening diseases to the back room closet, even MS which killed my sister in less than 5 yrs, the eye disease I have that is taking my sight slowly no one I know has ever heard of it because it’s rare but effects thousands, 10 years of depression and close to losing my family brought me to my senses that I must deal with it and move on but it’s frustrating to see people with nothing wrong with them whinning they can’t get ahead, they need to try surviving on a limited budget while raising a family like I did. Keep your head high and hopefully someone will step up to finish Breathless … Jim

Breathless_just_breathless_2_small
bruce351c Garage
December 09, 2011 at 10:13 PM

JIM I KNOW WHAT YOUR TALKING ABOUT. MY DAUGHTERS HUSBANDS DAD WENT UP DEER HUNTING LIKE IN THE PAST HE JUST BOUGHT A HARLEY AN NEW TRUCK AND WHILE UP NORTH HE KILLED HIM SELF. MY GRANDSONS ARE SOOOOO SAD EVEN AS TIME HAS PASSED AND NOT TO MENTION MY OLDEST GRANSON IS NAMED AFTER HIM AND I LIVE WITH THIS DISEASE EVERYDAY AND PRAY TO BE THE GRANDPA MY GRANDPA WAS FOR ME BUT WITH THIS DISEASE AND THE MADS I AM ON I CAN NOT BE AROUND THE GRAND KIDS WHEN EVEN ONE OF THEM ARE SICK AND THIS REALLY SADENS ME ALMOST TO DEATH WITH THE DEPRESSION THE BEING ALONE WHEN I WAS GOING TO SEE MY GRAND KIDS AND THEN AT THE LAST MOMENT ONE OF THEM IS SICK,THANKS JIM FOR SHARING IT HELP ME NOT TO FEEL SO ALONE. GOD BLESS YOU MAN

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