Living Donor Fundraiser Exceeds $10,000!

In follow-up to a post from Marla Blackwell on living kidney donation, we are grateful to report that the 4th annual ‘Night with Nashville’ concert and fundraiser reached a new milestone by raising more than $10,000 on September 8!

Guests partied the night away to country tunes from recording artists Megan Mullins and James Wesley, and lucky bidders walked away with silent auction memorabilia from stars like Jason Aldean, Miranda Lambert, Sara Evans, Justin Moore, Jewel, and Alabama.

These funds will help support the Living Donor Follow-Up Clinic, which provides medical care for up to two years post-donation to people who have given the gift of life through living organ donation. Donations are still being accepted.

Thanks to Marla and Lee Adams for your rockin’ efforts! Can we get a yeehaw, y’all?

Annual Concert “Rocks” for Living Donor Clinic

By Marla Blackwell

Editor’s Note: In 2008, Marla Blackwell donated a kidney to her mother.  During her first visit to UMMC, her social worker put her in touch with Lee Adams, who had donated a kidney the year before.  Adams is also the person who created the UMMC Living Donor Follow-Up Clinic Annual Benefit Concert.  Marla felt compelled to help Lee with the event and has been involved ever since. This year, Marla will assist in hosting the fourth annual Night with Nashville fundraising concert on September 8 in Falling Waters, WV.  Read Marla’s story below:

If I had been told earlier in my life, “Someday you will be donating a kidney,” I wouldn’t have believed it. Though, on June 18, 2008, I did that very thing.  At the age of 34, I donated a kidney to my mother.

But it wasn’t as easy as that.  For all the mothers, you may relate to my mother who made it very clear to all of us, three years before I donated to her, that she would not be taking a kidney from any of her children.

Those three years passed on by. My mother fought every day to stay alive, but her disease eventually took complete control of her body. It was early January of 2008 that I decided to do research on the single incision laparoscopic kidney removal to gather more information about the procedure.  My mother had mentioned she was in touch with the University of Maryland Transplant Center, so I started my research on their Web site and found a previously recorded surgical webcast of a living donor kidney transplant.  It was fascinating and I said to myself,” I can really do this.”

I did a little more homework on the procedure, the recovery and the long-term effects and didn’t feel any reservations about going through with it. It’s worth noting at this point that this story represents my personal experience and my feelings about donating a kidney. It is different for each living organ donor, such as Lee Adams, author of Donor Girl, who illustrates each moment of her experience as a living donor in her inspirational book.

My mother did eventually agree to proceed with the testing, and it turned out I was an excellent match for her. The overall experience with the UMMC Transplant Team was amazing from the moment I went for my initial testing until the day I was released from the hospital. It was during my very first visit to UMMC that I met my social worker, who offered to put me in touch with a woman who had donated a kidney one year ago and understood what I was going through.

That woman is Lee Adams, and every year she conducts the UMMC Living Donor Follow-Up Clinic Benefit.  The benefit raises funds for the UMMC Living Donor Follow-Up Clinic, created by Matthew Cooper, M.D.  Dr. Cooper and the UMMC Transplant Team implemented this program to provide living organ donors the quality medical follow-up care they may need after donating life.

I was compelled to help, and I reached out to Lee to see how I could be involved.  Since then, I have embraced this wonderful cause and it’s been quite a humbling experience to be able to give back and be part of this awesome benefit.  Throughout the past few years, the UMMC Living Donor Follow-Up Clinic has been able to provide follow-up support to many living donors through the generous contributions from others.

The clinic provides various services, including emotional support through the availability of counselors. This is an area of the clinic I am very passionate about and hope to see continue to grow and expand.  The donor makes the decision to donate life and embraces the experience, although the unexpected emotions from others around them, such as family members, may occur weeks or months after donation. To know the clinic is available for this type of support for donors is priceless.  As Lee Adams states, “I was ecstatic to hear that UMMC was opening a living organ donor clinic that would offer follow-up care at six months, one year and two years. The chance to meet with doctors, counselors and nurses who understood a donor’s needs and knew what to expect in our recovery made me feel much more comfortable that my future health was as important as the recipients. And for a donor who volunteers to put their health on the line, that is a very important reassurance.”

Since my donation three years ago, I married my best friend, Brian Blackwell, and we are expecting our first child in January.  The experience of donating has been life changing in every way and I will forever be an advocate for living organ donors.  I look forward to raising funds for the UMMC Living Donor Follow-up Clinic for many years to come.

The UMMC Living Donor Follow-Up Clinic is continuing to make monumental strides in making a difference in living donor’s lives.  I would like to thank the entire UMMC Transplant Team for all their unconditional support and for providing the ultimate follow-up care for living organ donors.

Note: The UMMC Living Donor Follow-Up Clinic was designed to provide basic needs for the donor and any donation-related complication after their surgery. It is required that all living donor programs provide follow-up appointments at six months, one year and two years post-donation. The goal of UMMC’s clinic is to ensure donors’ kidney health remains stable following the donation.  After the 2-year anniversary of their organ donation, the UMMC Living Donor Follow-Up Clinic remains available for donors that have ongoing needs related to their kidney health or need answers to simple questions regarding preventative medicine to ensure their best quality of life.

UMMC Heart-Liver Transplant Patient Promotes Organ Donation Awareness

By William Benamati
UMMC Heart and Liver Transplant Recipient

Editor’s Note: This post features excerpts from William Benamati’s CaringBridge site, which was created to keep his friends and family updated on his struggle with familial amyloidosis disease and his heart-liver transplant that was done at the University of Maryland Medical Center on February 21, 2011.

I am 42 years old and a married father of three. My family and I live in Curwensville Pa. I have been a funeral director since 1990 and am the location manager at Bennett & Houser Funeral Home in Clearfield and Mohney-Yargar Funeral Chapel in DuBois.

Without the generous gift of a heart and liver from an organ donor, I would be facing certain death. I have been speaking to many clubs and civic organizations about my illness and to promote organ donation awareness. As a funeral director, I have seen firsthand how organ donation has helped families cope with the unexpected loss of a loved one — providing them with some sort of good feeling knowing that their loss was not in vain and has allowed someone else to live.

Many people do not know how I ended up needing a transplant. My dad died in November 2007 and shortly after in the spring of 2008, I noticed that my heart would flutter for no reason at all. Around that same time, I was having gastrointestinal problems that caused me to steadily lose a lot of weight. I went from about 220 pounds to 150 over a period of a few months. At this point I saw doctor after doctor but all of my tests were normal! As soon as they found out I was a funeral director, they said it was all work-related stress and I needed to work on my anxiety. But in my heart I knew there was something physically wrong.

In 2009 I had a bout with kidney stones and the night before my fifth kidney stone procedure, my older brother David died unexpectedly at the age of 42 of a massive heart attack. That summer, the gastrointestinal issues continued and new symptoms developed. My feet hurt as if they were on fire, and my legs were weakening. In late October I contracted the flu, spent a week in ICU and was discharged the night before Thanksgiving. A cardiac catheterization showed that I had a wonderful heart, but I felt like I was slowly dying. How true my assessment was.

I was home for about two weeks and ended up hospitalized for 10 days with pneumonia. I was now using a cane to walk, and it was recommended that I see a neurologist.

In January 2010, I met with a neurologist who informed me that I had early-onset Parkinson’s disease. I was accepting, but my wife however was not. She disagreed with that diagnosis wholeheartedly, and researched the illness for days if not weeks. The pain in my legs had become unbearable, my heart was weakening, and I truly felt that I would not see 2011. She argued with the neurologist who finally agreed to conduct a nerve study — and lo and behold, the doctor realized that I had very severe neuropathy in my legs. My nerves were dying, and whatever I had was affecting my blood pressure and my GI tract.

I had a sural nerve biopsy in April and two days before my daughter’s senior prom, I received a death sentence: amyloidosis. A visit to a local hospital in June accompanied by a genetic test sent to the Mayo Clinic in Minnesota revealed I had hereditary “familial” amyloidosis. This disease has been passed through my father’s family, and we now know my father had it. His symptoms were exactly the same as mine.

It was later determined that my heart was failing because the amyloids, which are produced by the liver, were attacking the heart and the nervous system. The local hospital where I had been treated does not perform multiple organ transplants, so they referred me a few blocks south to University of Maryland Medical Center. I was listed for exactly seven months when a donor was found for me. I would have started my eighth month of waiting on the day I was actually transplanted.

Dr. Erika Feller was my cardiologist and it was through her that we decided to do the heart and liver transplant at the same time. Dr. Rolf Barth did a good portion of the liver transplant and Dr. Bartley Griffith put in the new heart. Everyone worked together; it was seamless. The surgery went very smoothly — I thought it was going to take 12 hours, but they were done in 7-1/2 hours. They kept my wife very well-informed the entire time.

The whole team was wonderful. The doctors and nurses all worked as a team and they all deserve a lot of credit.

After the transplant, I’m feeling pretty good. I’m just happy to be able to get out and go to my son’s ball games. I do plan on returning to work at some point. I just passed the 100-day mark since my transplant, so it’s a good sign things are progressing the way we want them to.

I have many blessings and can’t wait to start my second life. Remember the 3 Fs: Faith, Family, Friends. Without the 3 Fs I would not be here today.

The Ultimate Match Game: Donors and Recipients in Triple Kidney Swap Meet for the First Time

There were plenty of hugs to go around when six patients involved in a triple kidney swap conducted at the University of Maryland Medical Center met for the first time on July 8, 2011. Each recipient originally came to the hospital with an intended donor: a spouse, a sibling and a church friend.

However, when the blood and tissue typing revealed their intended donors were not a match, all three pairs entered UMMC’s Paired Kidney Exchange (PKE) Program, which seeks to create swaps among incompatible pairs. All six patients met for the first time today at UMMC to talk about their experiences since the transplants took place on June 15, 2011.

“It was a great experience to help someone I never met,” said Karen Becker, 54, who entered the PKE program after she found out she was not a match for her husband, John, who had been diagnosed with polycystic kidney disease. By enrolling in the PKE program, Karen was still able to help someone in need — ultimately donating a kidney to Mae Opie, a 73-year-old grandmother from Bel Air who also was living with polycystic kidney disease.

Mae’s original donor was Jesse Epperley, a 28-year-old fellow church member who felt called to donate his kidney after reading about Mae’s need in the church bulletin. When Mae and Jesse didn’t match, he entered the PKE program, and his kidney went to Paul McSorley, a 55-year old from Harford County, who did not match with his fraternal twin, Joy Hindle. Joy ultimately donated her kidney to John Becker, who also suffered from polycystic kidney disease.

All three donors had their kidneys removed through single-incision laparoscopic surgery (SILS) through their belly buttons. The University of Maryland Medical Center was the first hospital in Maryland and only the third hospital in the country to offer this minimally invasive technique for living kidney donors. Donors are often amazed at how easy the surgery can be. “I came out of surgery with nothing but a Band-Aid,” said Hindle. “I couldn’t believe it. It’s amazing; I have no scar.”

See the complete photo gallery here.

UMMC Heart Transplant Recipient Portrayed in New Film

Casey Towers, a young mother of two from Waldorf, Md., received a heart transplant at the University of Maryland Medical Center in 2006 after she was diagnosed with peripartum cardiomyopathy, a rare heart condition related to her pregnancy.  She later learned the identity of her donor — Luke Abbate, a high school athlete who was killed in reckless driving accident.  Four years after her transplant, Casey had the opportunity to meet Luke’s parents,  Steven and Maryanne Abbate.  That’s when they told her that she had become a character in the ‘The 5th Quarter,’ a new film about Luke’s death and the aftermath. Four other patients also received organs from Luke, but Casey was the only one portrayed in the movie.

In this video, Casey talks about her unique experience and how she felt about the care she received at the Medical Center.  In addition, Dr. Erika Feller shares her insights about Casey’s story and talks about the importance of organ donation. Read the full story here.

Donate Life: A Transplant Surgeon’s Powerful and Personal Plea

By Matthew Cooper, M.D.
Director of Kidney Transplantation

Recent world events are a powerful reminder of life’s uncertainty. Even if everything seems fine today, none of us really knows what dramatic changes or tragic circumstances we might face tomorrow. The more than 110,000 Americans waiting for lifesaving organ transplants feel the pain of an uncertain future each and every day.

April is National Donate Life Month, an excellent opportunity to learn more about organ and tissue donation. There are many great resources to answer some of the questions you or a family member may have about living donation as well. The University of Maryland Medical Center Web site has a whole section on living kidney donation, including answers to frequently asked questions. Data is available on the United Network of Organ Sharing’s Web site about the numbers of patients waiting, the time with which they wait for that call, and efforts at a national level to improve the quality and outcomes for organ transplantation.

Organizations such as the National Kidney Foundation have initiatives like “End the Wait!” and provide readers with basic yet substantial things that can be done on a personal level to help make a difference to someone in need. Importantly, register as an organ donor on the National Kidney Foundation Web site or sign up for your state’s donor registry in conjunction with the Department of Motor Vehicles. Share your wishes with your family and talk about your decision to inspire others.

As a transplant surgeon I have the privilege of seeing day by day the life-changing (literally giving life to another human being) opportunities via organ donation. A recent example was the inspiring case of 26-year-old Drew Sollenberger, who came to us wanting to donate a kidney to the person of greatest need. This person turned out to be a 2-year-old boy with life threatening kidney disease, who now has a second chance at life.

I regularly share with anyone who will listen that I know I have the best job in the world. We have an incredible team made of truly wonderful individuals invested in transplantation here at the University of Maryland. A group of hundreds is necessary to make certain we protect this valuable resource in an organ for transplantation. But we cannot do this job we love without you. It only takes one … one decision to last for another’s lifetime.

Life is like a relay race. When my run is complete, I hope to pass the baton to someone who is waiting to receive the gift of life to advance on their own journey. I cannot be sure that they will win or even finish the race, but without someone to pass the baton, I know that they will continue to wait or may even die prematurely.

While you can’t control the future, you can choose to pass on the Gift of Life to make a lifetime of tomorrows possible by registering as an organ and tissue donor and considering living donation.

April is Donate Life Month!

Other Posts by Dr. Cooper

A “Transplant Miracle”

Twenty-six-year-old Drew Sollenberger wanted to donate a kidney.

Two-year-old Ethan Hatton needed a new kidney to live.

Their separate stories became one thanks to the University of Maryland Medical Center, whose doctors removed one of Drew’s kidneys and inserted it in Ethan on January 19, 2011.

Watch the videos below to learn the whole story and to see the first meeting between donor and recipient. You will be glad you did.

The (Non-Directed) Donor: “Giving a little child another chance at life seemed like a no brainer.”

The Recipient: “How do you get an adult kidney into a two-year-old?”

The Meeting: “He’s almost part of the family now, because he gave Ethan the one gift he needed — a new kidney.”

Becoming A Non-Directed Kidney Donor

This four-minute video features living kidney donor Drew Sollenberger discussing why he felt it was important for him to become a non-directed donor. A non-directed donor is an individual who expresses a desire to donate one of his or her kidneys, but who does not have a recipient to receive the organ.

Dr. Matthew Cooper, director of kidney transplantation and clinical research in the Division of Transplantation at the University of Maryland Medical Center, also appears in the video to discuss the process of becoming a non-directed donor, including the benefits available to donors as a result of a new, minimally invasive surgical technique now being employed to remove the kidney from the donor.

Drew’s kidney was donated to a young child who was struggling to survive before the kidney became available.

Related Information:

Father Gives Son the Gift (Kidney) of Life

On October 28, 2009, Carlos Chambers received a life-saving kidney transplant that put an end to his need for continuous dialysis treatments and gave him back the strength and energy he had before being diagnosed with kidney failure just a few years ago. What made this life-saving gift even more special to Carlos was that his new kidney was donated by his father, Thomas Dunkins, III.

In this ten-minute video, Carlos and his father discuss the joy they felt after learning that Thomas would be a perfect donor for Carlos. They also talk about why they chose to come to the Medical Center, what it was like for them to go through the transplant process together, including their experience attending the Transplant Education Series offered by the Medical Center, and why they often return to UMMC to help other patients and donors in the transplant program. Watch the video to learn more about their incredible story.

Rare, Lifesaving Heart/Liver Transplant Saves Young Man’s Life

David Krech, a 28-year-old man from Thomasville, Georgia, underwent a rare, lifesaving heart/liver transplant on October 15, 2010 at the University of Maryland Medical Center. The 13-hour operation followed a five-month journey, which began in early May when Krech’s physician, Dr. Raul Santos, contacted the University of Maryland Medical Center’s heart transplant program to make arrangements for Krech to be immediately transported to the Medical Center. Watch the video to learn more about this remarkable story.