Myths and Facts about Bone Marrow Donation

Every year, more than 10,000 patients in the U.S. are diagnosed with life-threatening diseases such as leukemia or lymphoma, and their best or only hope of a cure is a transplant from an unrelated donor or cord blood unit. The need for transplants is increasing. Medical advances are making transplants a treatment option for more patients of all ages than ever before.

Below is information from Be the Match to clear up some common myths about bone marrow donation. To learn more about joining the Be the Match bone marrow registry, visit their website.

MYTH: Marrow donation is painful.
FACT: General or regional anesthesia is always used for this procedure. Donors feel no needle injections and no pain during the marrow donation process. Afterward, most donors feel some pain in the lower back for a few days or longer.

MYTH: All marrow donations involve surgery.
FACT: There are two ways to donate. The majority of donations do not involve surgery. The patient’s doctor most commonly requests a peripheral blood stem cell (PBSC) donation, which is non-surgical and outpatient. If the patient’s doctor requests marrow, marrow donation is a surgical procedure, usually outpatient.

MYTH: Pieces of bone are removed from the donor.
FACT: Pieces of bone are not removed from the donor. In marrow donation, only the liquid marrow found inside the bones is collected. In a PBSC donation, cells are collected from the bloodstream in a process similar to donating plasma.

MYTH: Donating marrow is dangerous and weakens the donor.
FACT: Though no medical procedure is without risk, there are rarely any long-term effects from donating. Only five percent or less of a donor’s marrow is needed to save a life. After donation, the body replaces the donated marrow within four to six weeks. The National Marrow Donor Program (NMDP), which operates the Be The Match Registry, screens all donors carefully before they donate to ensure they are healthy and the procedure is safe for them. The NMDP also educates donors, answers questions every step of the way, and follows up with donors after donation.

MYTH: Marrow donation involves a lengthy recovery process.
FACT: PBSC donors take the drug filgrastim for five days leading up to donation and may have symptoms such as headache, bone or muscle pain, nausea, insomnia or fatigue during this time. These symptoms nearly always disappear one or two days after donating, and the donor is back to normal. Marrow donors can expect to feel fatigue, some soreness or pressure in their lower back and perhaps some discomfort walking. Marrow donors can expect to be back to work, school and other activities within one to seven days. The average time for all symptoms to disappear is 21 days.

MYTH: Donors have to pay for the donation procedure.
FACT: Donors never pay for donating and are never paid to donate. All medical costs are paid by the patient’s medical insurance or by the patient, sometimes with assistance from the National Marrow Donor Program (NMDP). The NMDP, which operates the Be The Match Registry, reimburses donors for travel costs, and may reimburse other costs on a case-by-case basis. Although a donor never pays to donate, many people do pay the tissue-typing cost when they join the registry.

NFT Patients Who Received Transplants in September

We are so happy for our patients who received lifesaving transplants last month!

• Ramsey Brown (heart) at Shands at the University of Florida
• Victor Delgado (kidney) at Emory Transplant Center
• David Fraser (liver) Shands at the University of Florida
• Dustin Garver (lung) at Duke University Medical Center
• Yvonne Gonzales (stem cell) at Baylor University Medical Center
• Kevin Jackson (liver) at Banner Good Samaritan Medical Center
• Madee Leombruno (kidney) at Allegheny General Hospital
• Lonnie Leonard (liver) at Integris Nazih Zuhdi Transplant Institute
• Melisha Nolen (bone marrow) at Vanderbilt University Medical Center
• George Renz (kidney) at California Pacific Medical Center

Jewish Community Hero of the Year Award

After Jay Feinberg waited four years to find a bone marrow donor match, he made it his life's work to save other people by increasing the representation of Jewish people in the world-wide registry. Today, Gift of Life Bone Marrow Foundation is among the top international registries, with more than 170,000 potential volunteer donors, and is responsible for the facilitation of more than 2,100 bone marrow transplants worldwide.

Jay's vision is simple: A match. Anytime. Anywhere. For anyone.

To read more about Jay and to vote for him as the Jewish Community Hero of the Year, click here.

A Patient's Mission: Recruit Marrow Donors

The following article is from the August 23, 2010 edition of People magazine.


Anh Reiss was headed to the gym in February 2009 when she got the call that changed her life. Test results held unimaginable news: She had a rare blood disorder and perhaps only six months to live. Her only hope, her doctor told her, was a bone marrow transplant that could restore her ravaged immune system. But Reiss learned to her dismay that she had a far slimmer chance than many Americans of finding a suitable donor.


Although there are more than 8 million potential donors on the national Be the Match Registry, Reiss' search yielded only 15,000 of Vietnamese descent--whose genetic makeup was most similar to her own--and none was a match. The mother of two despaired. "The thought of leaving my family was overwhelming," says Reiss, who is herself an ob-gyn. "I cried a lot."


But rather than give up, Reiss took action. She and husband Josh, 42, a lawyer, began crisscrossing the Midwest and showing up at Vietnamese festivals to break down cultural barriers against becoming a donor. Allaying fears, sharing her story and swabbing cheeks herself, she has helped add as many as 10,000 Vietnamese donors to the registry. "There's no telling how many lives she's saved," says Mary Halet, director of recruitment for Be the Match.


Reiss--who came to this country at age 7 as part of the wave of Vietnamese "boat people" in the 1970s--noticed she was feeling weak on a vacation last year. The lifelong runner was shocked to learn she had myelodysplastic syndrome (MDS), a life-threatening disorder that usually strikes older people. "I've never smoked, I eat right. There's a 'Why me?' component in this." More grim news: None of her five siblings was a match; she'll need an unrelated donor.


Rather than dwelling on her bad luck, Reiss is thrilled she may have been able to help people like Matthew Nguyen, 28, a pharmacy student from San Francisco diagnosed with leukemia in 2007. On dialysis, he finally found a match in early 2009, shortly after one of Reiss' drives, and is in remission. "I owe Anh gratitude," he says, "that I can never repay."


Although Reiss has yet to find her own lifesaving match, she controls her condition through medication--she's back to practicing medicine full time and works out four days a week--and treasures every moment with Josh and children Alexandra, 19, and Aaron, 15. "No one is guaranteed more time, "she says. "Whatever time I have, I'm going to make the most of it."


By: Steve Helling in Houston and Jennifer Wren in New York.

NFT Patients Who Received Transplants in June

Everyone at NFT is so excited for our patients who received lifesaving transplants last month!

• John Bafford (heart) at Medical University of South Carolina


• Mandi Batson (double-lung) at Duke University Medical Center


• Ronald Davis (kidney) at Loma Linda University Medical Center


• Vicki Hancock (bone marrow) at Emory Transplant Center


• Trevis Hockaday (heart) at University of North Carolina Hospital


• Amanda Keys (heart) at Children's Hospital of Michigan

June Patient of the Month: Mandi Batson

Mandi Batson has been fighting for her life since she was 4 years old. She has endured two heart surgeries and was diagnosed with Chronic Myelogenous Leukemia (CML) in 2006. The following year, she received a bone marrow transplant to treat the CML but later contracted Graft vs. Host Disease (GVHD) as a result of the transplant. Bone marrow patients can contract GVHD when the newly transplanted cells attack the recipient's organs. In Mandi's case, the disease attacked and damaged her lungs. Doctors have said a double-lung transplant is critical to her survival.

Throughout every health battle she has faced, Mandi has been a fighter. She is thankful for the dedication of her family, who has been with her every step of the way, and the steadfast support of her church family at Faith Assembly of God. Despite her health challenges, she graduated from high school in the top 10% of her class, is an active member of her church youth group and serves as an ambassador for the Make-A-Wish program. Currently, Mandi is a pre-med college student and hopes to be a doctor to help children overcome their own cancer battles. But she needs your help.

To read more of Mandi's story or to make a donation in her honor, visit her web bio on the NFT website.

Vicki Hancock Needs a Lifesaving Bone Marrow Transplant to Survive

The following excerpt is from the First Coast News website:


ST. MARYS, Ga. -- A Camden County woman needs some heroes to save her life.

Vicki Hancock beat cancer once, but is facing the medical battle once again with little help from her health insurance. Doctors said she'll lose that fight if she doesn't have a bone marrow transplant in the next few months.

"I'm not ready to go. I just turned 55 in April," said Hancock.

She was diagnosed with breast cancer in 2006 and given a clean bill of health in 2007. But she was hit with another medical blow just a few weeks ago by her doctor.

"If I don't get a bone marrow transplant, he said I have six months or less to live," said Hancock.

It was back to the hospital once again and back to the chemotherapy to provide a temporary fix for Myelodysplastic Syndrome (MDS) or pre-leukemia, brought on by the treatment from the last bout with cancer.

"This has devastated us. This time around has really hurt us because I can't work right now," said Hancock.

To beat this new form of cancer, the family immediately began searching for a bone marrow match. Turns out, Hancock's sister is a perfect match, but there's a problem.

"Unfortunately, my insurance won't cover it," said Hancock.

Hancock said her health insurance will only cover $18,000 of a $500,000 procedure. "My husband and I have paid insurance since we were in our 30s. Unfortunately if I had $2 more, they would have covered the treatment of cancer," said Hancock.

Family members aren't letting finances discourage them.

"We beat breast cancer before. We'll beat this again," said her husband, Jim Hancock.

To read more about the fundraising support to help Vicki, click here.

FAQ About the National Foundation for Transplants

Every once in a while, we like to post a few frequently asked questions about NFT. To find the answers to more FAQ, visit the NFT Web site.

Who is eligible for NFT's services?
NFT provides services to transplant candidates awaiting organ and/or tissue transplants, as well as patients who have already received their transplants. NFT patients must be U.S. citizens or legally documented residents. We assist patients who need help with out-of-pocket transplant expenses and whose transplants take place in the U.S.

What expenses will NFT cover?
NFT can help with transplant costs; hospital bills and deposits; co-pays; doctors' appointments; medications; caregiver expenses; insurance premiums, temporary mortgage assistance following the transplant; travel, food and lodging expenses; and more.

I already had my transplant. Can NFT help me?
Absolutely! While the best time to fundraise is before transplant, NFT can help patients at any stage. It's easier to communicate the need, gather momentum and maintain enthusiasm among volunteers and donors if fundraising activities begin prior to the transplant. However, many campaigns continue to fundraise post-transplant, and others don't begin fundraising until after transplant.

January Transplants for NFT Patients

The following patients received lifesaving transplants in January, and we are so happy for them!

As you may know, transplant patients face a lifetime of follow-up care and medications to keep their new organs healthy. NFT will continue helping these patients raise funds so they can focus on their new lives without worrying about the expenses!

• Kelly Bradley (liver) at Vanderbilt University Medical Center



• Paige Brown (liver) at Vanderbilt University Medical Center



• Nancy Burnett (liver) at Piedmont Hospital



• Patricia Hugghis (heart) at Baptist Memorial Hospital--Memphis



• Kevin Randall (bone marrow) at Duke University Medical Center



• Roy Talley (liver) at Methodist University Transplant Institute



• Loretta Washington (lung) at Cleveland Clinic

December 2009 Transplants

We hope everyone had a wonderful holiday season! We are thrilled to report the following NFT patients received their lifesaving transplants last month.

• Matthew Clark (heart) at Baptist Memorial Hospital-Memphis
• Tom Gombar (bone marrow) at Moffitt Cancer Center
• Diane Harris-Thomas (kidney) at Baylor University Medical Center at Dallas
• James Lawson (bone marrow) at Vanderbilt University Medical Center
• Peg Lewis (stem cell) at Integris Nazih Zuhdi Transplant Institute
• Deborah Lopez (liver) at Duke University Medical Center
• Donald Perreault (lung) at Massachusetts General Hospital
• Mike Rogers (stem cell) at University of California, San Diego
• David Wellman (heart) at Duke University Medical Center

December Patient of the Month: Ilene McBride

Ilene was diagnosed with Hodgkin's Lymphoma in 2007, and has bravely endured aggressive treatments for her cancer. A bone marrow transplant is the only cure for this disease. Thankfully, her mother will serve as her donor as soon as Ilene is well enough to sustain the transplant surgery.

Though Ilene enjoyed a successful legal career, she found it didn't compare to the joys of motherhood. She and her husband, Tom, welcomed their first son in 2003, and Ilene gave up her career to become a full-time mother. Ilene and Tom enjoyed parenthood immensely, and their second son was born in early 2005. Unfortunately, he was born with Osteogenesis Imperfecta (OI), commonly known as brittle bone disease. Within the first two months of his life, he suffered six fractures.

The McBride family coped well, despite the difficulties of their youngest son's life, and by 2006, they had settled into a comfortable routine. Soon, though, their lives were once again interrupted by unwanted news as Ilene received her diagnosis.

Although Ilene knows she faces a battle, she is determined to take on her sickness in the same way she has handled the rest of her life--with spirit, courage, hope and faith. She looks forward to the day she is cured, so she can continue on her quest of fundraising to help find a cure for her son's OI disorder.

To make a donation in honor of Ilene McBride, or any other NFT patient, please visit the NFT Web site.

Extreme Makeover Helps Bone Marrow Transplant Patient

Recently, ABC’s Extreme Makeover: Home Edition featured bone marrow transplant recipient, Joey Stott, a 34-year-old wife and mother. Even though Joey had health insurance when she was treated for leukemia in 2004, she is still paying off $40,000 in uninsured medical bills from her lifesaving marrow transplant. “I didn’t think about the medical bills while in the hospital and my husband didn’t either, but there was a lot to think about when I got home,” said Joey.

Joey found her donor match through the Be the Match registry, after none of her family members were a match for her bone marrow transplant. She also received help through the Be the Match Patient Assistance Program.

Are you a bone marrow donor? For more information about becoming a bone marrow donor, click here.

Are You a Bone Marrow Donor?

As this CNN article explains, "For minorities, the wait for a bone marrow match can be long." While there are 7 million registered bone marrow donors on the Be The Match Registry, the percentage of minorities who have registered is very small. In fact, Hispanic donors account for only 9% of the millions registered.

While all transplant success rates increase when patients find donors with similar ethnic backgrounds, that component is even more vital to increase the success rate for bone marrow transplants.

For patients like Melissa Delgado, who is of Puerto Rican descent, the wait can be especially long. She has been trying unsuccessfully to find a bone marrow match for six years. It is crucial for minorities to join the bone marrow registry so more lives can be saved.

August Transplant Birthdays

We're so excited for the NFT patients who received lifesaving transplants last month! We wish them the best in their recovery and healing.

• Calvin Anderson (kidney) at St. Luke's Episcopal Hospital
• Gail Breedlove (bone marrow) at University of California San Francisco
• Ralph Coleman (liver) at University of Virginia Health System
• Elvis Gregory (bone marrow) at University of Kansas Medical Center
• Nancy Grinstead (liver) at Duke University Medical Center
• Sandra Johnson (liver) at Duke University Medical Center
• Dominick Just (lung) at Temple University Hospital
• Clark Kimble (liver) at University of Utah Health Care
• Victor Kish (kidney) at Banner Good Samaritan Transplant Center
• Lishan Knowles (kidney) at University of Pittsburgh Medical Center
• David Lamb (liver) at Integris Nazih Zuhdi Transplant Institute
• Angel Smith (lung) at Emory University Hospital
• Shawnice Williams (kidney) at Mayo Clinic in Florida

Patient of the Month: Jaden Dhaliwal

Little 6-year-old Jaden was diagnosed with Chronic Granulomatous Disease (CGD) when he was just 23 months old. After suffering from persistent fevers that would not go away, doctors discovered he had this rare disease, which only affects 25,000 people worldwide. To boost his immunity, Jaden had to take medication every day and shots three times each week.

Doctors knew a bone marrow transplant was the only treatment that could cure young Jaden. In July, Jaden underwent a bone marrow transplant for which his sister Gia was donor. His father also donated platelets as part of the transplantation process.

Jaden is so excited about his transplant, which will allow him to play like the other children his age. Jaden could not visit zoos, go hiking, play outside or take camping trips because of the many things that could make him ill.

Although Jaden and his family and grateful for this opportunity, they know there is still a difficult journey ahead. A bone marrow transplant costs approximately $675,000. And that's only the beginning. Even with health coverage, Jaden's family faces significant medical expenses related to his transplant. The Dhaliwal family lives 3,000 miles away from the transplant center at Duke University Medical Center. They will need significant help with travel, food and lodging, especially because his father was out of work for six weeks after donating platelets for the transplant.

Can you help Jaden and his family with these soaring medical expenses? To make a donation to NFT in Jaden Dhaliwal’s honor, click here.

NFT Patients Who Received Transplants in June

It is always so wonderful to hear that one of our patients has received a lifesaving transplant! We wish a healthy recovery to all of the NFT patients who received transplants last month.

• Alexandra DiDomizio (bone marrow) at Rush University Medical Center
  
• Chad Freckleton (liver) at University of Utah, Salt Lake City


• Bobby Pollard (bone marrow) at Virginia Commonwealth University Medical Center
  
• Jeremy Powell (double lung) at University of Pittsburgh Medical Center
  
• Tracy Smith (bone marrow) at Moffitt Cancer Center

To learn more about the National Foundation for Transplants and how we can help you or a loved one fundraise for transplant-related expenses, please visit our Web site or e-mail us at info@transplants.org.

NFT Bone Marrow Transplant Patient Finds a Friend Through Unlikely Connection

NFT patient, Melissa Delgado, was diagnosed with leukemia in 2003. For six years, she has been unsuccessful in finding a bone marrow donor match. While there is a national shortage of organ and tissue donors, the need for bone marrow donors of Hispanic descent is particularly crucial. The success rate for bone marrow transplants greatly increases when tissue is matched between members of the same ethnic background.


Sunday, May 17 at 7 p.m., a fundraiser, including a cocktail-style dinner, dancing and a raffle, will be held in honor of Melissa at Galapagos Art Space in Brooklyn, NY. The entire evening has been planned in Melissa’s honor by someone who was a complete stranger just a couple months ago.

***

When Maria DeFrancesco volunteered to help at a healthcare convention, she had no idea her efforts would save lives.

On the final day of the convention, a bone marrow drive was held. Maria, 32, recalls thinking, “No big deal. I’ll add my name to the bone marrow registry,” but she gave it very little thought after that. Three weeks later, she received a call telling her she was a preliminary match for a 14-year-old boy who suffered from acute myelogenous leukemia (AML). Further testing proved she was a perfect match, and in February her bone marrow was harvested to save the life of this young boy.

Because of her newfound connection with bone marrow transplants, Maria wanted to do even more to help. She began researching local organizations and found the National Foundation for Transplants. After contacting NFT, Maria learned about Melissa Delgado. The two women met and quickly became friends.

“After talking to Melissa, it was easy to see she is such a strong girl who is determined to get through anything. I want to help her by spreading awareness and shedding light on bone marrow donation,” explains Maria.

A bone marrow transplant costs approximately $675,000, and that is only the beginning. Even with health insurance, Melissa is facing significant expenses related to her transplant. Searching for donors also is an expensive process.

The Icla da Silva Foundation will host a bone marrow drive during the fundraiser so guests will have the opportunity to register as bone marrow donors at no cost. A representative from The Bone Marrow Foundation also will be present to answer any questions about marrow donation.

Local businesses participating in the fundraiser include Del Frisco’s Steakhouse, Frankies 457 Spuntino, Jalopy Music Theater and Oggi Hair Salon.

Visit Melissa Delgado’s Web page on the NFT Web site to learn more about her fight against leukemia.

Bone Marrow Transplant Patient Remains Optimistic

May Patient of the Month:

Tannia Munoz

At just 24 years old, Tannia requires the use of ankle braces and a cane so she can walk. She hopes that one day she'll be able to walk again with the grace of other women her age.

During her first semester of law school at Rutgers University, Tannia began having trouble walking. At first, doctors believed her problem was the result of a knee injury. But five months later, in February 2008, she was diagnosed with Chronic Inflammatory Demyelinating Polyneuropathy. CIDP is an autoimmune/neurological illness that attacks the peripheral nerves. There is no known cause of this rare disease.

Tannia's declining health leaves her so physically weak that she is unable to work or finish school. Her daily symptoms include weakness in the hands and legs, hand tremors, muscle twitching and pain, numbness, tingling and excessive fatigue. Doctors have tried treating her condition with a variety of medications, but none offer the chance for a meaningful recovery. Tannia's doctors say a bone marrow transplant is her only hope for a second chance at life.

Despite her struggles, Tannia remains optimistic. She is currently on a medical leave of absence from law school, but hopes to return after her health is restored. She looks forward to the lifesaving transplant that will allow her to enjoy time with her friends and family. She needs your help.

A bone marrow transplant costs more than $300,000. And that's only the beginning. Even with health insurance, Tannia faces significant medical expenses. She will need costly follow-up care and medications, which are as critical to her survival as the transplant itself.

Visit our Web site to make a donation to NFT in honor of Tannia Munoz or to help other patients like her.

Grant for Bone Marrow Transplant Patients

If you are a cancer patient who needs a bone marrow transplant, you certainly understand how challenging it can be to search for a matching marrow donor for that lifesaving transplant. It can be even more difficult when your insurance company will pay for the transplant, but refuses to pay for the donor search!

The National Foundation for Transplants not only helps alleviate the financial burdens of transplant patients through fundraising, but also provides grant opportunities for transplant candidates and recipients.

Through a generous partnership with The Linda Tallen and David Paul Kane Foundation for Cancer Research and Education, NFT offers a special grant for cancer patients who need a bone marrow transplant but whose insurance does not cover their donor search.

The grant allows cancer patients greater opportunities to find a bone marrow donor, awarding up to $3,000 for their donor search costs, as well as up to $3,000 for fees related to a marrow donor drive in the patient’s community. A brochure that educates the public about cancer and bone marrow transplants, as well as how to become a marrow donor, is distributed as part of the donor drive.

If you feel that NFT could be helpful to you through our fundraising services or this grant opportunity, please feel free to contact Connie at cgonitzke@transplants.org for more information.

FAQ about Organ and Tissue Donation

Q. Why are organ and tissue donations needed?
A. Each year the number of people waiting for transplants increases dramatically. Today more than 100,000 people are currently awaiting a transplant in the U.S. Those in need include babies, teenagers, young adults and those looking ahead to their retirement. Additionally, thousands of patients are currently awaiting bone marrow transplants.

Q. Do donor cards distributed by transplant-related organizations have the same validity as my driver's license?
A. If a completed organ donor card or statement is signed in front of witnesses and included with your driver's license, both are legal documents and show your intent to become an organ donor. They are equally valid. As of 2006, the Uniform Anatomical Gift Act (UAGA) states that a signature on a driver's license or a donor registry is a legally binding document. Therefore if you intend to be an organ donor, that request cannot be changed by a family member after you have passed away.

Q. Will my family be charged for donating my organs?
A. The donor family is never charged for costs associated with organ donation. Once your family has given consent for donation, all costs are handled by the procurement organization.

Q. Can I be paid for donating organs?
A. No. Organ donation is a gift. The National Organ Transplant Act of 1984 prohibits the buying and selling of human organs.

Q. Who will receive my donated organs?
A. Potential recipients are identified using the United Network for Sharing (UNOS) national computer system. The computer generates a list of patients ranked according to strict medical criteria, urgency of need and time. Donor and recipient identity is confidential, although some basic information may be shared.

Q. May I have a proper funeral after donating organs?
A. Yes. The removal of organs and tissue does not interfere with customary burial arrangements. Organ removal is carried out as a regular surgical procedure. The donor's body is treated with the utmost respect, and an open casket funeral is possible. Funeral arrangements remain the responsibility of the donor family.

Q. If I decide to become an organ donor, will that affect the level of my medical care?
A. Absolutely not. Organ recovery takes place only after every effort has been made to save the patient's life. The patient must be declared "brain dead" before the organs can be procured. An entirely different team of medical professionals is brought in to procure organs after brain death. The first priority of all medical professionals is the well-being of their patients, regardless of whether or not they wish to donate their organs.

Q. What organs and tissues can be donated?
A. Kidneys, hearts, livers, lungs, pancreases and intestines can be donated, as well as eyes, skin, heart valves, bone marrow and bone. In certain circumstances, a kidney, bone marrow or a portion of the lung or liver may be received from a living donor, generally from a close family member.

Q. Does my religion support organ and tissue donation?
A. Organ and tissue donation is consistent with the beliefs of all major religions. Many faiths openly encourage it, seeing this as a final act of giving and as an expression of hope on the part of the donor. If you have any questions, please discuss them further with your minister, priest or rabbi.