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» LymeNet Flash » Questions and Discussion » Medical Questions » (Lyme) Transplant patient cherishes new heart, new life

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Author Topic: (Lyme) Transplant patient cherishes new heart, new life
imanurse
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January 01, 2007

Transplant patient cherishes new heart, new life

By SANDRA FREDERICK
Staff Writer

JACKSONVILLE -- With death only hours away, Elizabeth "Jackie" Rouse received a miracle from a 22-year-old Kentucky man half her age, someone she never met.

Being weaned from a dangerous drug that stabilized her blood pressure while shutting down other vital organs, she wouldn't have survived the night if a heart hadn't been found.

"I really thought I was going to die," she said Friday while using a treadmill as part of her cardiac rehabilitation at Mayo Clinic at St. Luke's Hospital in Jacksonville. Her heart was damaged after a bout of Lyme Disease which she contracted in the mid-1990s.
Arriving at Mayo Clinic a few days after Thanksgiving, doctors said only 10 percent of her heart -- a small corner on the top -- was pumping blood to her frail body. She weighed 88 pounds.

But getting a new organ on Nov. 27 was only the beginning of a long road to recovery for the 44-year-old New Smyrna Beach woman.

Each day Rouse takes 45 different pills -- more than 1,350 a month with a price tag of about $6,000. The medicine keeps her immune system from attacking her new heart, counteracts buildup of cholesterol, provides extra calcium to keep her bones strong and helps with other medical issues caused by the transplant. She also has to watch what she eats, wear a mask when in public so she doesn't contract germs, and deal with the soreness in her chest caused by the chicken wire the doctor used to piece her breastbone back together. "I haven't slept a full night yet because it hurts to lay down."

Rouse said all this was explained prior to the surgery and she knew it would be part of her recovery. But what she didn't expect was the guilt that came with her new lease on life.

"The gift given to me by the donor's family is something I will always cherish, and I know the sacrifice that they made to give it to me," she said. "But, what I didn't think about was the guilt I would feel about why I got the heart before someone else who has been waiting a lot longer than me. And will someone else die because I got this heart and not them?"

Annie Moore , spokeswoman for United Network for Organ Sharing, a Richmond,Va.-based clearinghouse that facilitates the matching of organs, said there are many variables that go into the decision. The immediate need, such as in Rouse's case, may move her to the top of a medical list, but there are still other factors that have to also be in place.

"The patient has to match blood type, tissue type, body size as well as geographical location and medical urgency," Moore said Thursday during a telephone interview.

Moore also said the heart has the least amount of survivability -- four to six hours -- outside of the cavity so it creates an immediacy to getting it matched with the right recipient.

Evelyn Glass, spokeswoman for Kentucky Organ Donor Affiliates, where the heart came from, said there is also a little luck in the decision, too.

She stressed there are many things that have to match, the biggest being tissue. "If it doesn't match, there is a high likelihood the body will reject the new organ."

COST OF LIVING


Because Rouse was working as an apartment complex manager with no insurance benefits being offered -- and was not able to afford it on her own -- she said she was at a disadvantage. She was told one Central Florida transplant hospital refused to take her on as a patient because she didn't have the means to pay the $700,000 required for the surgery.

"I live in the richest country in the world where we spend billions of dollars each day on war and here I am in need of a new heart to stay alive, have no insurance and I was refused a chance to live by one hospital," she said angrily. "I almost died. If I had lived in some countries in the world, it wouldn't have been an issue and I would have gotten it with no questions asked."

Susan Allen-Umerley , Operations Administrator for Mayo Clinic, said getting a new organ is a very expensive process, for both the patient and the hospital. She said the hospital stay alone can cost upward of $300,000, not including the physician and support staff fees for the usual nine-hour surgery.

"It's an expensive business," she said Friday.

With that said, the hospital official stressed the clinic's ethical goal is the care of the patients. "We will not turn them away."

Although most people have insurance to cover a large part of the $25,000 organ assessment, which is the first step in the process, as well as the cost of the hospital stay and post-transplant care, there are some patients who are self-pay or have Medicaid assistance.

In Rouse's case, she had applied for federal help three months earlier and was waiting for acceptance into the program.

When she was transferred from Bert Fish Medical Center in New Smyrna Beach to Mayo Clinic in critical condition, the hospital felt she had a good chance of getting approved for Medicaid. Regardless, the clinic would have not turned its back, Allen-Umerley said.

Still the financial part is not the only element that hospital looks at. Allen-Umerley said the patient also has to be able to take care of the organ after the transplant, by having the means to afford the drugs to keep the body from rejecting it as well as the emotional aspect.

"This is not a hip replacement," she said. "Someone is giving the gift of a loved one and we take that very seriously. It is heavy duty and a big deal to get an organ."

Allen-Umerley said the procurement staff at the clinic looks at the whole picture, not only the insurance aspect. "If a person is an alcoholic and he or she needs a liver transplant, then we need to make sure that when he gets the organ, he will not go out and do the same thing to destroy it."

LIFE AFTER TRANSPLANT


For now, Rouse, hovering around a healthier 100-pound milestone, lives in a one-bedroom efficiency apartment about two miles from the clinic. She makes the daily trek to get her cardiac rehab, weekly biopsies and attend support group meetings. In a month or so, she is hoping to return home to a "normal" routine, getting her son, Jeremy, on the school bus, cooking dinner for the family and maybe even returning to work.

She knows she still has months of recovery ahead of her, but, "I am alive and I won't ever take that for granted again. I can stand up and feel the blood rushing to my head. It's been a long time since I could feel that."

Rouse hopes someday soon she can tell the family of the young man, who was taken before his time, that she wholeheartedly appreciates the sacrifice they made. She was told he donated six organs that day, all of which went to patients at Mayo Clinic.

"He was an amazing human being," she said. "And, I have his heart beating in me."

Glass said that often the donor family and the recipients do meet, usually a year or so after the transplant.

"If the recipient wants to write to the donor family, I will pass the letter along," she said. "I find sometimes it helps the recipient if they know a little about the donor, maybe if he played golf or what music he liked. It is also healing for the donor family."

Rouse said she waits for the day she can personally thank them, to tell them she will take care of their son's heart.

"I will always cherish it like it is my own."

sandra.frederick@news-jrnl.com

For more information about donating organs visit www.donatelife.net, or to help Jackie Rouse, visit www.transplantfund.org.


AT A GLANCE:

In 2005, there were 28,113 organ transplants in the United States. Of those, 16,481 were kidneys; 6,443, livers; 541, pancreas; 903, kidney/pancreas; 2,125, hearts; 1,406, lungs; 35, heart/lungs; and 178 intestines.


As of 12/22, there were 94,767 people in the United States waiting for organs.

Average waiting time for a heart is 178 days. In 2005, 4,423 men and 3,170 women donated hearts.

In 2005, more men were waiting for a heart transplant than women. There are 2,857 men and 698 women on the current United Network for Organ Sharing waiting list for heart transplants.

The age group representing 50-64 olds makes up the largest in need with 35-49 in second place.

The kidney was the first organ to be transplanted successfully. By the late 1960s, liver and heart transplants were also under way. It wasn't until the 1980s that lung and intestines were viable transplant organs.

Source: United Network for Organ Sharing

http://www.news-journalonline.com/NewsJournalOnline/News/Local/newEAST02010107.htm

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bettyg
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nurse, great find; very touching; statistics were great adding to the article. [Big Grin]
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