In February 2009 Bob Falkenberg’s life changed—first for the worse, then for the better. A visit to the Emory Johns Creek Hospital emergency room to check a high spike in his blood pressure led to an unusually early diagnosis of acute lymphoblastic leukemia, a rapidly progressing blood cancer.
“The prognosis was not good,” says Falkenberg, who had never faced serious illness before. He was referred to Winship Cancer Institute of Emory University, where he learned that, with just weeks to live, he had to immediately start chemotherapy. Falkenberg started an aggressive course of treatment and during the next six months received eight rounds of chemotherapy.
In July of that year, the search for a bone marrow transplant donor began. Many cancer patients cannot find a match for this risky process. Luckily, several unrelated individuals in the donor pool were a good match for Falkenberg. The transplant process involved a high dose of chemotherapy and whole-body radiation to completely kill his marrow, followed by an infusion of donor bone marrow stem cells in October 2009. Falkenberg credits Winship Cancer Institute and Emory University Hospital for his successful outcome.
Now 54, Falkenberg is cancer free and in better shape than before his diagnosis. To show his gratitude and to help other cancer survivors and their caregivers recognize that there can be life after a cancer diagnosis, Falkenberg has organized the Lifeblood Ride, an 1,800-mile bicycle ride from Beverly Farms, Mass., to Key West, Fla. Funds collected through donations to LifeBlood will go to the Winship Cancer Institute.
Joining Falkenberg on his journey are his daughter, Katie, and his longtime friend, Carl Kooyoomjian. The trio will leave from their starting point north of Boston on June 2 and hope to finish the ride in Key West on June 30. They expect to average about 70 miles per day, rain or shine, and will be carrying all of their equipment on their bikes.
“I knew my treatment was going to be difficult, but I was determined not to let it beat me down. I set goals for myself to keep my strength up throughout my treatment,” says Falkenberg. Between chemotherapy treatments, he was able to attend the wedding of his son and daughter in-law, Brian and Elizabeth, in April 2009, and he walked the Peachtree Road Race in July 2009 with his wife, Karen. “I set goals both small and large that I wanted to accomplish even as I was in my chemo treatments,” he says.
A few months after his bone marrow transplant, Falkenberg convinced Kooyoomjian to train for a 100-mile bike ride in Savannah, Ga., in September 2010. The friends successfully completed that ride, and the idea for the fundraising ride surfaced in January 2011.
“We had discussions a long time ago about a bike ride across the country but were never able to work it out. We were skiing together in January and decided if not now, when?” Falkenberg says.
Falkenberg asked his daughter to put together a website and coordinate social media coverage for the ride. Katie Falkenberg jumped at the opportunity to support her father, both as a participant and as the brains behind the technology to blog from the road during the journey. Falkenberg mapped out the day-to-day route that would take them down the East Coast.
“I feel a strong pull toward doing something to help out the cause. Part of my motivation is to get my life back and part is to provide hope to others going through something similar,” says Falkenberg, who also volunteers with Winship’s Peer Partner Program and assists with fundraising efforts for the Friends of Winship volunteer organization. “I want to show that there is indeed life after cancer. It is not about how long you live, it is about living every day. After having cancer there is always a black cloud hanging around, and for some it can be overwhelming.”
Along the ride, the trio will be joined at different points by family, friends and Winship staff, including oncologist Amy Langston, who is Falkenberg’s doctor; Jessica Thomas; and Hannah Collins.
Falkenberg says Lifeblood was conceived as a way to pay forward to help others and hopes it will be an inspiration to those facing similar circumstances.
“Winship and Emory Hospital have an amazing team. It is truly incredible how many people get involved in your treatment. The process was seamless between the many members of my treatment team, from the doctors, PAs, nurses, and techs to every member of the support team,” he says. “I just can’t say enough about the people involved. The nurses were incredible and always took the time to talk about any issue. I was a person, not a case, and the whole group of health care professionals was focused on more than just taking care of the medical problems. I trusted them completely and never had any doubts whatsoever that I was in the best of hands.”
For more information on the Lifeblood Ride, to follow the daily blog, or to make a donation, please visit www.LifeBloodRide.org. Click here for more information about the Winship Cancer Institute.
Source: Winship Cancer Institute at Emory University
Thursday, May 26, 2011
Wednesday, May 25, 2011
NFT is Part of the BBB’s Wise Giving Alliance
We are honored to have met the Better Business Bureau Wise Giving Alliance accreditation standards. According to the BBB, this accreditation shows the National Foundation for Transplants meets their high standards in terms of governance, finances, fundraising practices, website disclosures and donor privacy.
We strive to go above and beyond for our patients who are facing devastating costs related to transplantation. We are thrilled to receive this recognition, as we aim to meet our own high expectations every day.
To access more information about this seal program, and to view reports on additional accredited national charities, go to give.org. To see a list of the charities that also received this honor, click here.
We strive to go above and beyond for our patients who are facing devastating costs related to transplantation. We are thrilled to receive this recognition, as we aim to meet our own high expectations every day.
To access more information about this seal program, and to view reports on additional accredited national charities, go to give.org. To see a list of the charities that also received this honor, click here.
Tuesday, May 24, 2011
Milestone for Mayo Clinic in Arizona
Mayo Clinic in Arizona has performed its 100th heart transplant since the program opened in the fall of 2005 — a significant milestone, given that Mayo Clinic is the only medical center doing adult heart transplants in Maricopa County.
The 100th heart transplant patient, a 46-year-old man from Glendale, Ariz., is recuperating following the 10-hour hour surgery on Wednesday, May 18. The surgery was performed by Francisco Arabia, M.D., cardiothoracic surgeon and surgical director of Mayo's Heart Transplant and Ventricular Assist Device (VAD) program.
Mayo Clinic in Arizona is a leader in mechanical circulatory support devices, including VADs and the total artificial heart. Such devices are implanted into patients with severe heart failure to support the human heart until a transplant can take place — or, in a number of VAD cases, as life-long cardiac support.
A VAD does not replace the native heart, but uses pumps to assist the heart in pumping blood to the body. With the total artificial heart, both the left and right ventricles of the human heart are removed, and the artificial heart works to restore blood flow.
The first heart transplant patient, a then 58-year-old Scottsdale woman, is doing well today following her transplant in October 2005 and is active in volunteer work in the Valley.
Prior to her transplant, that first patient, because of sudden cardiac failure, was placed on a VAD while she waited. Coincidentally, the 100th patient, who also experienced heart failure, required an artificial heart while he awaited transplantation. Both patients were able to be stabilized enough to be transplanted because of high-tech mechanical support devices.
In the case of the 100th transplant patient, technology has advanced to the point where he was able to wait at home until his donor heart became available, connected to a much smaller, backpack version of the total artificial heart that weighs just over 13 pounds. Previously, patients on the artificial heart had to remain hospitalized because the device was powered by a 400-pound driver that prohibited mobility.
Following are statistics about the use of mechanical circulatory support devices at Mayo:
* Forty-one of the 100 heart transplants were patients on a mechanical device.
* Mayo's first heart transplant was a device patient.
* Mayo's 100th transplant was a device patient.
* Twenty-four of the patients were supported by an artificial heart.
* One of Mayo's artificial heart patients made international news when he was the first in the U.S. to be discharged from the hospital on the smaller, portable version of the artificial heart to await transplantation.
In 26 cases, Mayo's unique "transport team," sometimes referred to as its "Swat" team, was able to make emergency runs to referring Valley hospitals to help stabilize patients and transport them to Mayo Clinic for further care. In some cases, a mechanical support device was implanted at the referring hospital because of the severity of their cardiac condition. This transplant system is one of the few in the U.S.
"We are proud of this 100th heart transplant milestone," says Dr. Arabia. "It is especially rewarding that the growth of the program means we can continue to serve patients in the Valley and beyond." Dr. Arabia credits the work of Donor Network of Arizona for its commitment to bringing awareness to the need for organ donation so that more organs can be available to help others in need.
"It is a privilege to be in a position to treat heart failure and help patients resume their healthy and productive lives," Dr. Arabia added.
Source: Mayo Clinic in Arizona website
The 100th heart transplant patient, a 46-year-old man from Glendale, Ariz., is recuperating following the 10-hour hour surgery on Wednesday, May 18. The surgery was performed by Francisco Arabia, M.D., cardiothoracic surgeon and surgical director of Mayo's Heart Transplant and Ventricular Assist Device (VAD) program.
Mayo Clinic in Arizona is a leader in mechanical circulatory support devices, including VADs and the total artificial heart. Such devices are implanted into patients with severe heart failure to support the human heart until a transplant can take place — or, in a number of VAD cases, as life-long cardiac support.
A VAD does not replace the native heart, but uses pumps to assist the heart in pumping blood to the body. With the total artificial heart, both the left and right ventricles of the human heart are removed, and the artificial heart works to restore blood flow.
The first heart transplant patient, a then 58-year-old Scottsdale woman, is doing well today following her transplant in October 2005 and is active in volunteer work in the Valley.
Prior to her transplant, that first patient, because of sudden cardiac failure, was placed on a VAD while she waited. Coincidentally, the 100th patient, who also experienced heart failure, required an artificial heart while he awaited transplantation. Both patients were able to be stabilized enough to be transplanted because of high-tech mechanical support devices.
In the case of the 100th transplant patient, technology has advanced to the point where he was able to wait at home until his donor heart became available, connected to a much smaller, backpack version of the total artificial heart that weighs just over 13 pounds. Previously, patients on the artificial heart had to remain hospitalized because the device was powered by a 400-pound driver that prohibited mobility.
Following are statistics about the use of mechanical circulatory support devices at Mayo:
* Forty-one of the 100 heart transplants were patients on a mechanical device.
* Mayo's first heart transplant was a device patient.
* Mayo's 100th transplant was a device patient.
* Twenty-four of the patients were supported by an artificial heart.
* One of Mayo's artificial heart patients made international news when he was the first in the U.S. to be discharged from the hospital on the smaller, portable version of the artificial heart to await transplantation.
In 26 cases, Mayo's unique "transport team," sometimes referred to as its "Swat" team, was able to make emergency runs to referring Valley hospitals to help stabilize patients and transport them to Mayo Clinic for further care. In some cases, a mechanical support device was implanted at the referring hospital because of the severity of their cardiac condition. This transplant system is one of the few in the U.S.
"We are proud of this 100th heart transplant milestone," says Dr. Arabia. "It is especially rewarding that the growth of the program means we can continue to serve patients in the Valley and beyond." Dr. Arabia credits the work of Donor Network of Arizona for its commitment to bringing awareness to the need for organ donation so that more organs can be available to help others in need.
"It is a privilege to be in a position to treat heart failure and help patients resume their healthy and productive lives," Dr. Arabia added.
Source: Mayo Clinic in Arizona website
Tuesday, May 17, 2011
May is National Skin Cancer Awareness Month
Astellas' Transplant Experience website offers the following information about the risks of skin cancer:
It's not always easy keeping track of everything you need to consider post-transplant. Did you know, for instance, that skin cancer is the most common type of cancer in transplant recipients? Learning your risk factors for skin cancer early and understanding ways to effectively reduce your risk are important for protecting your long-term health.
What are my risks of developing skin cancer?
The anti-rejection medications vital to the success of your transplant also suppress the natural immune defenses in your skin, putting you at higher risk for skin cancer. Be sure to discuss your risk factors for skin cancer with your transplant team. If you haven't done so already, ask them for assistance in developing a plan for skin cancer prevention, detection, and treatment.
Although your anti-rejection medications can increase your risk for skin cancer, remember that taking them as intended is critical to your health and that of your transplant. If you have concerns about the risks of long-term immunosuppression, talk to your transplant team.
Do not change or stop any of your medications, unless directed to do so by your doctor.
What can I do to help prevent skin cancer?
The good news is that simple lifestyle changes can significantly reduce your risk of developing skin cancer:
Because skin cancer develops slowly over time, these steps are only as effective as your daily commitment to them. And like all other aspects of your transplant health, it's critical that you schedule regular skin evaluations with your doctor—every 12 months, or, if you are at higher risk, every 3-6 months.
What are the signs of skin cancer?
In addition to regular skin evaluations, monthly self-monitoring is highly recommended. Look for the following changes to your skin:
Fortunately, about 95% of transplant-associated cases of skin cancer are forms of non-melanoma, which are usually curable if caught early enough. The other 5% are cases of melanoma, characterized by asymmetry, border irregularity, color variability, diameter, and evolving growth—known as the ABCDEs of melanoma.
For helpful pictures and additional descriptions of the types of skin cancer, visit the Healthy Body section of TransplantExperience.com.
Skin cancer can be serious, but by learning the signs of skin cancer now, you can seek the early evaluation and treatment key to avoiding long-term complications. Learn more at www.at-risc.org.
It's not always easy keeping track of everything you need to consider post-transplant. Did you know, for instance, that skin cancer is the most common type of cancer in transplant recipients? Learning your risk factors for skin cancer early and understanding ways to effectively reduce your risk are important for protecting your long-term health.
What are my risks of developing skin cancer?
The anti-rejection medications vital to the success of your transplant also suppress the natural immune defenses in your skin, putting you at higher risk for skin cancer. Be sure to discuss your risk factors for skin cancer with your transplant team. If you haven't done so already, ask them for assistance in developing a plan for skin cancer prevention, detection, and treatment.
Although your anti-rejection medications can increase your risk for skin cancer, remember that taking them as intended is critical to your health and that of your transplant. If you have concerns about the risks of long-term immunosuppression, talk to your transplant team.
Do not change or stop any of your medications, unless directed to do so by your doctor.
What can I do to help prevent skin cancer?
The good news is that simple lifestyle changes can significantly reduce your risk of developing skin cancer:
- Wear a waterproof, broad-spectrum (UVA and UVB) sunscreen with an SPF of at least 30 every day, even when it's cloudy or rainy out. Consider making this part of your daily routine, maybe by applying it immediately after brushing your teeth each morning
- Make sure sunscreen is applied liberally to all parts of your body, especially areas of high sun exposure, such as the back of your neck, tops of your ears, and back of your hands.
- Wear tightly-woven, protective clothing, such as long sleeves, pants, and hats.
- Limit your exposure by avoiding outside activity between 10 AM and 4 PM, when sunlight is most intense
Because skin cancer develops slowly over time, these steps are only as effective as your daily commitment to them. And like all other aspects of your transplant health, it's critical that you schedule regular skin evaluations with your doctor—every 12 months, or, if you are at higher risk, every 3-6 months.
What are the signs of skin cancer?
In addition to regular skin evaluations, monthly self-monitoring is highly recommended. Look for the following changes to your skin:
- New, changing, or scaly growth
- Pink patches or spots
- Bleeding spots
- Changing moles
Fortunately, about 95% of transplant-associated cases of skin cancer are forms of non-melanoma, which are usually curable if caught early enough. The other 5% are cases of melanoma, characterized by asymmetry, border irregularity, color variability, diameter, and evolving growth—known as the ABCDEs of melanoma.
For helpful pictures and additional descriptions of the types of skin cancer, visit the Healthy Body section of TransplantExperience.com.
Skin cancer can be serious, but by learning the signs of skin cancer now, you can seek the early evaluation and treatment key to avoiding long-term complications. Learn more at www.at-risc.org.
Friday, May 13, 2011
May Patient of the Month: Janet McCrary
At 16, Janet McCrary was diagnosed with juvenile diabetes, and the illness quickly took over her life. She began using an insulin pump and seemed to have her diabetes under control when she went away for college, but she became very ill and lapsed into a diabetic coma. Since then, she's developed several different conditions, including renal failure and gastroparesis, a condition that reduces her stomach's ability to digest food. Her kidneys have stopped working, and she now requires dialysis treatments to manage her diabetes. Doctors say a kidney/pancreas transplant is her only hope for a second chance at life.
Bill Hahn received a kidney/pancreas transplant in 2009 and became involved with Donate Life America and the National Kidney Foundation to spread the word about organ donation. Bill recently met Janet and featured an interview with her in the video below. To read more about Janet or to make a donation in her honor, visit her web bio on the NFT site.
Bill Hahn received a kidney/pancreas transplant in 2009 and became involved with Donate Life America and the National Kidney Foundation to spread the word about organ donation. Bill recently met Janet and featured an interview with her in the video below. To read more about Janet or to make a donation in her honor, visit her web bio on the NFT site.
Tuesday, May 10, 2011
Mom Gives Her Child Life--A Second Time
The following article is from the UAB News website:
This year, Mother’s Day has extra special meaning for Jennifer McCombs and her 15-year-old son, Chase Waters. Jennifer has given Chase life again — this time in the form of a life-saving kidney transplant.
“Chase was born with something called posterior urethra valve, and there was a blockage we learned about when I was pregnant that damaged his kidneys in utero,” says McCombs, 42, of Hoover. “Chase’s doctors told us that he would need a kidney transplant one day; we just didn’t know at the time when that day would be.”
One day came about a year ago when it became evident medication no longer could keep Chase's kidneys working; he needed a transplant. Jennifer was ecstatic when tests showed her kidney was a match for Chase.
“For 14 years I hoped and prayed I would be the one to give him a kidney,” McCombs says. “I just really wanted to be the one to do it.”
Chase has had few limitations during the past years. He is an accomplished catcher for his high-school freshman baseball team and has even been scouted by some pro teams. He wanted to play until time for his transplant, but his baseball career was put on hold after the first game this spring. His condition deteriorated to the point he was too exhausted to play.
“This year it’s been hard to practice, because the next day I wasn’t able to get out of bed because I was so fatigued,” Chase says.
UAB transplant surgeons Steve Bynon and Michael Hanaway performed Chase’s transplant April 21. Jennifer’s left kidney was removed laproscopically and transplanted into Chase. The procedure, which took most of the day, was a success. Jennifer was discharged the next day and Chase about a week later.
Chase is recovering, and Jennifer is celebrating this Mother’s Day knowing her son has a new lease on life. She’s also looking forward to his eventual return to the baseball diamond.
“I cannot wait to see him go out there and play and feel good,” she says. “I’ve watched him play and feel bad, and that’s been hard, but I cannot wait to get out there and scream for him.”
And Chase — he is grateful for the sacrifice his mother made for him.
“It amazes me that she would give up one of her organs so that I can live and live a better life, and it makes me happy that I have a mom like that,” he says.
This year, Mother’s Day has extra special meaning for Jennifer McCombs and her 15-year-old son, Chase Waters. Jennifer has given Chase life again — this time in the form of a life-saving kidney transplant.
“Chase was born with something called posterior urethra valve, and there was a blockage we learned about when I was pregnant that damaged his kidneys in utero,” says McCombs, 42, of Hoover. “Chase’s doctors told us that he would need a kidney transplant one day; we just didn’t know at the time when that day would be.”
One day came about a year ago when it became evident medication no longer could keep Chase's kidneys working; he needed a transplant. Jennifer was ecstatic when tests showed her kidney was a match for Chase.
“For 14 years I hoped and prayed I would be the one to give him a kidney,” McCombs says. “I just really wanted to be the one to do it.”
Chase has had few limitations during the past years. He is an accomplished catcher for his high-school freshman baseball team and has even been scouted by some pro teams. He wanted to play until time for his transplant, but his baseball career was put on hold after the first game this spring. His condition deteriorated to the point he was too exhausted to play.
“This year it’s been hard to practice, because the next day I wasn’t able to get out of bed because I was so fatigued,” Chase says.
UAB transplant surgeons Steve Bynon and Michael Hanaway performed Chase’s transplant April 21. Jennifer’s left kidney was removed laproscopically and transplanted into Chase. The procedure, which took most of the day, was a success. Jennifer was discharged the next day and Chase about a week later.
Chase is recovering, and Jennifer is celebrating this Mother’s Day knowing her son has a new lease on life. She’s also looking forward to his eventual return to the baseball diamond.
“I cannot wait to see him go out there and play and feel good,” she says. “I’ve watched him play and feel bad, and that’s been hard, but I cannot wait to get out there and scream for him.”
And Chase — he is grateful for the sacrifice his mother made for him.
“It amazes me that she would give up one of her organs so that I can live and live a better life, and it makes me happy that I have a mom like that,” he says.
Monday, May 9, 2011
April Transplant Birthdays
We are thrilled for the patients who received lifesaving transplants last month, and we wish them the best in their recoveries! NFT will continue assisting these patients as they fundraise for the vital medications and follow-up care they'll need for the rest of their lives.
- Randy Fraga (heart) at Scott & White Hospital & Clinic
- Arnold Graves (heart) at Newark Beth Israel Medical Center
- Cindy Joyes (lung) at Jackson Memorial Hospital
- Dean Young (heart) at Seton Medical Center
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