Medicaid, Hospitals Thwart Man's Plan to Give Fiancee Kidney (This is Shay)

[okarol]

Medicaid, Hospitals Thwart Man's Plan to Give Fiancee Kidney

Tuesday, April 29, 2008

PANAMA CITY BEACH, Fla.  —  Shannon Pipes was born with one kidney, and it was covered in scar tissue.

For most of her childhood, the kidney functioned, but in the last few years, she has had to undergo dialysis for as long as 11 hours a day, every day.

Pipes, 20, quit her job as a cashier at Winn-Dixie because of her health, but not before meeting and falling in love with one of the store's managers, William Burton. The love was mutual and the timing was perfect.

The couple became engaged two years ago and was planning a May 21 wedding in Las Vegas, but Pipes' health began to deteriorate. She was diagnosed with end stage renal disease and recently was put on the kidney donor list. Before Pipes' family or friends could be scheduled for testing, Burton volunteered to go first. Although the odds were against him being a match, Burton proved to be a candidate.

"It was a no-brainer," Burton said, smiling at Pipes. "I didn't want her to be tied to a machine; I want her to have a normal life."

Burton said he got on the Internet and researched the donation procedure. He will have to be hospitalized for two to six weeks, but he said his employer is behind him and helping Pipes get her life back is worth it.

While receiving a new kidney is a lifesaving surgery, it is a high-risk one for Pipes.

"When I was 4, I went into a hypoglycemic coma, I had my gall bladder out at 11 and I had a thyroid storm when I was 15, which makes your blood pressure shoot up and is life-threatening. I spent 10 days in the hospital and have to take blood thinners," she said.

Shayma Salman, the social worker at DaVita Dialysis Center, Panama City, where Pipes receives help with her home dialysis treatments, tried to schedule the transplant. But Shands Hospital in Gainesville and the Mayo Clinic in Jacksonville refused to operate on Pipes because of her pre-existing health conditions.

Salman said she finally was able to arrange the surgery at the University of Alabama-Birmingham, for May 5. The procedure will cost about $200,000. Medicare will cover the bulk of the cost, but Medicaid has been balking about paying its share of $20,000 because the operation will take place out of the state. Each state has its own Medicaid program.

"I don't understand it," Salman said. "If no hospital in Florida is willing to do the transplant, then Medicaid should cover it. Shannon can't work and has no income. She's dependent on William."

Click here to comment on this story.

Salman said Florida Medicaid and the UAB hospital are sending different messages.

"It's hard to get any answers from anyone," Salman said. "We sent the authorization to Tallahassee, and they said we didn't need pre-authorization. UAB told Shannon that she would have to pay $20,000 out of pocket.

"One of the biggest stressors that people on dialysis have is finances," she said. "How are they going to pay for treatment?" Pipes' financial worries stretch far beyond the surgery. She will have to take very expensive medicine the rest of her life to keep her body from rejecting the new kidney.

"I have to get a job with insurance after the transplant to pay for the medicine, or I'll lose the new kidney," Pipes said.

Despite her illness, Pipes spends her time helping others with kidney disease. She volunteers to speak to people newly diagnosed with end stage renal disease to help them understand what they're up against.

In February, William helped her set up her Web site. The site, kidneyfun.com, includes member forums on kidney disease and dialysis, a chat room, a member arcade of games with 4,000 games and tournaments for members, and a gallery where photos can be shared online. Members have made 33,541 posts since the site's inception.

"There are 350 members. I don't make any money from it," Pipes said. "If they have questions or problems, we can try to help and we try to help new patients."

April is Donate Life Month, and Shayma Salman, social worker at DaVita Dialysis Center, wants people to know how important it is to donate organs and that one doesn't have to be deceased to donate a kidney.

"We have 150 patients here that require dialysis or kidney transplants," Salman said. "We need more people to donate organs. If people don't have family or friends who can donate, it's unfortunate. A lot of people die waiting for a transplant."

http://www.foxnews.com/story/0,2933,353190,00.html

[BigSky]

Medicaid has determined they will now pay for the deductible for the tx.

Shay is suppose to be admitted today and is suppose to have the tx  on May 5 at UAB in Birmingham, Alabama.  Her fiancee, William, will be admitted Sunday to get ready for it.

 

[flip]

She has her laptop in the hospital room and is keeping everyone posted.

[willieandwinnie]

  I'll be praying and thinking about you Shay. William is a hero. 

[okarol]

South Florida Sun-Sentinel.com

Panhandle man gives kidney to fiancee
But Medicaid balks at paying

By Donna Vavala
The News Herald

May 3, 2008

PANAMA CITY BEACH

Shannon Pipes was born with one kidney, and it was covered in scar tissue.

For most of her childhood, the kidney functioned, but in the past few years, she has had to undergo dialysis every day.

Pipes, 20, quit her job as a cashier at Winn-Dixie because of her health, but not before she and store manager William Burton fell in love. The couple became engaged two years ago and were planning a May 21 wedding, but Pipes' health began to deteriorate. She was diagnosed with end-stage renal disease and recently was put on the kidney donor list. Before Pipes' family or friends could be scheduled for testing, Burton volunteered. Although the odds were against him being a match, Burton proved to be a candidate.

"It was a no-brainer," Burton said, smiling at Pipes. "I didn't want her to be tied to a machine; I want her to have a normal life."

Burton will have to be hospitalized for two to six weeks, but he said his employer is behind him and helping Pipes get her life back is worth it.

Receiving a new kidney is a lifesaving surgery, but it is a high-risk one for Pipes.

"When I was 4, I went into a hypoglycemic coma, I had my gall bladder out at 11 and I had a thyroid storm when I was 15, which makes your blood pressure shoot up and is life-threatening. I spent 10 days in the hospital and have to take blood thinners," she said.

Shayma Salman, the social worker at DaVita Dialysis Center, Panama City, where Pipes receives help with her home dialysis treatments, tried to schedule the transplant. But Shands Hospital in Gainesville and the Mayo Clinic in Jacksonville refused to operate on Pipes because of her health conditions.

Salman said she finally was able to arrange the surgery at the University of Alabama-Birmingham on Monday. The procedure will cost about $200,000. Medicare will cover most of the cost, but Medicaid has been balking about paying its share of $20,000 because the operation will take place out of the state.

"I don't understand it," Salman said. "If no hospital in Florida is willing to do the transplant, then Medicaid should cover it. Shannon can't work and has no income. She's dependent on William."

http://www.sun-sentinel.com/features/health/sfl-flfkidney0503sbmay03,0,1177687.story

[okarol]

UPDATE

Couple recovering after man gives fiancee a kidney

July 20, 2008 06:25:00 AM
By Donna Vavala
News Herald Writer

PANAMA CITY — On May 5, William Burton gave his fiancée, Shannon Pipes, the greatest gift she ever received: one of his kidneys.

Then came the recovery.

The couple was to be married May 21, but Pipes' health began to deteriorate. She was born with one scarred kidney that functioned until about three years ago, when she was diagnosed with end-stage renal disease. She endured to up to 11 hours of daily dialysis and was put on the list for a kidney donation.

Pipes, 20, was getting desperate and decided to ask her family members to be tested to see if they would be a candidate for donation. But Burton immediately stepped up and offered one of his kidneys; he was a perfect match.

The transplant cost $168,000. Most was paid by Medicare and the remainder by Medicaid, she said.

"I was never in the hospital before," Burton said. "I was a little nervous. My blood pressure was up, but they decided to go ahead."

Burton's kidney was removed laparoscopically through an incision near his belly button, but his kidney was larger than doctors expected, so he has a larger-than-usual scar. Down the hall, Pipes was getting an 8-inch diagonal incision from the left side of her stomach down to her groin.

Burton's operation lasted about four hours, and Pipes' was about five. They both vividly recalled the pain.

"The pain was awful," Burton said. "The first day, I had a morphine drip. After that, they gave me pain pills. The hardest thing was walking for the first time. After that first time, the pain got less and less."

After three days in the hospital, Burton was moved to an apartment adjacent to the hospital, where he recuperated for a week before he could drive home.

Pipes also suffered considerable pain trying to walk at first.

"I had 20 pounds of fluid in my legs, so I could hardly move," she said. "My stomach was very swollen, too. I had to use a walker at first."

 She was in intensive care for 24 hours and in the hospital for 17 days, then moved to the apartment for a week. She was released May 30. Pipes still sees her local nephrologist every other week for lab work and travels to the Birmingham hospital about every six weeks for more tests.

"I take 23 pills a day," Pipes said, adding that most of them are to keep her body from rejecting the new kidney. "But the kidney works like it's always been my kidney."

Pipes no longer has to live her life tied to a dialysis machine.

"I can go to bed anytime I want to, and I can shower faster because I don't have a tube (for dialysis) anymore," Pipes said. "My energy level went up, food tastes better and my complexion has changed," as she no longer is pale.

Pipes said her next goal is to find a job with insurance, so she can pay for her medication.

"I might go back to" Gulf Coast Community College, she said, "but it's kind of hard with all my doctor appointments." Pipes said she would like to train to become a nutritionist for people on dialysis.

Burton is a department manager at the Winn-Dixie store on State 79 and Back Beach Road, where he is working 12-hour days until the season ends.

"My short-term disability covered my salary the whole time I was out. My work was very supportive," Burton said. "All my medical expenses were paid through Shannon's Medicare."

Despite the pain and missed work, Burton still wants people to consider being a donor.

"I encourage anyone's who's able to donate a kidney," Burton said. "Shannon's life expectancy has gone up many years."

During the time after the transplant and before Burton returned to work, the couple said they spent a lot of quality time together.

"We didn't argue; we just got along perfect," he said. "We're closer now than we ever were."

For more information on kidney donation, go to www.kidney.org or call (800) 927-9659.

http://www.newsherald.com/news/fiancee_66891___article.html/gives_kidney.html

[angela515]

She is doing great... I talk to her everyday.

[glitter]

Nice to know some people kept in touch- I go to her site occasionally- I see livecam there sometimes too. I wish her the best.