It was a total shock to find out that Janie was sick. We thought that we had a perfectly healthy baby. Family had started to mention that her abdomen was bigger than it should be and that something was off. Although she never looked sick, she was very tiny and grew at a very slow pace. She was diagnosed at nine-months old. Although she was never sick in a hospital bed while waiting for her tranplant, she started to show signs that her liver was slowly shutting down. Our life was on hold while we waited for the call that would save her life. We received a call on Sept. 11, 2005 that they had a donor available. Once we got to Nebraska they told us that the liver was too big and that they would not do the transplant! It was hard not to give up hope while waiting. All we could do was wait and pray for someone’s generosity to reach out to us.
What was life like while you were waiting for your daughter’s transplant? As a mother to Janie, I thought that once she was placed on the transplant list it would only be a few months. It was so hard to watch her get sicker each day and there was nothing that we could do about it, but wait. I had no idea that it would take so long and it would be so emotionally difficult to get through. Waiting was the worst! We never went out of town to visit family because they were too far away from the airport. Life was on hold for us! We had to rely on each other as a family and have faith that everything would work out the way it was supposed to. We all go through trials in life and come out stronger from them. This was Janie’s trial that had an effect on us all.
Describe what it was like when you got “The Call.” We got our “first” call nine months after they put Janie on the transplant waiting list. We were scared, excited, nervous and happy. We had no idea that there was a possiblity that we would get all the way to the operating room doors and be turned away. We were angry and frustrated after being told that the liver was not a good fit for Janie’s little body. Coming back home was hard for us, but we knew that we had to remain optimistic for Janie. When we got the “real” call on January 31, 2006 we tried not to get too excited this time, knowing that we could possibly be turned away again! We were definitely scared! Scared to be turned away, scared for Janie to go into surgery, scared of the outcome of everything.
Describe your life AFTER transplant. What has regaining your health allowed you to do? Are you back to doing the activities you did before transplant? What has the impact been on your family? Two weeks after Janie had her tranplant, with 25 staples across her stomach, she was jumping on the bed! I was afraid that she would break something loose! I had never seen that much energy come from her before. She was a whole new kid. We came back to Arizona just one month after her transplant, just in time for her second birthday. Janie thrived! Her health improved from the moment that she received the transplant. Although she has had some setbacks in the last six years, she is doing amazingly well! Without the donor family’s decision of saying YES to organ donation, I don’t know where we would be today, and for that, we will forever be indebted to them!
Laura Allen is a 55 year old woman, a wife, a mother of three grown children and a grandmother to two grandchildren that are 3 and 5 years old. Laura received her heart transplant on June 1, 2011 at the University Medical Center (UMC) in Tucson, Arizona.
Will you describe what your life was like before Transplant? I was very weak. I could not even make our bed because I could not make it around to both sides of the bed. My husband, who is a long-distance truck driver, would make the bed before he left on a trip and when he was gone I would just sleep on one side and try not really even mess up the bed and just pull the covers up on my side so it looked made up!
Please describe what waiting for the transplant was like. It was a little bit difficult. I had developed breast cancer and one of the chemotherapy drugs damaged my heart so that is why I needed a transplant. I had a couple modes of transportation. At one time I had a scooter and then I had a walker and was on oxygen. I was so week that I could not even carry my own oxygen tank. The walker was nice; really nice. It held my oxygen and had a seat so I could sit down when I needed to.
What was life like for your family while you were waiting for a transplant? My husband is a long-distance truck driver. When he was on a trip, our daughter who lives with us would take care of me. When he would come home off the road, and if I was in the hospital, he would normally head straight to the hospital. Before he would leave on a trip he would leave things out for me so I could around in the house. He would leave pots out on the counter and leave things where it was easier for me. If he thought I might need a can opener, he would leave a can opener out for me. Maybe leave out a couple cans of soup. Anything that would make my life easier he tried to do before he left and then when he came back it was the same routine. I got spoiled! He even did all the laundry.
Breast Cancer – what was that like and what was transplant is like after cancer? When I had breast cancer I was told I would have to wait five years if I were to get a heart transplant. When I first went to see the doctors at UMC they realized that I was not five years out, but I did not know that I needed to be, at that time. So the doctors said I had to wait until I hit the five-year mark and then I would be considered for a heart transplant at that time. I was pretty disappointed. I knew how sick I was and I just wanted to feel better. So I and my husband said okay, that we would wait, and then we would be back. We waited and when the time came we went back and the ball got rolling and eventually I got the word that okay that this is going to happen. I started going down to Tucson for all the testing. And then it went on from there. I waited 2.5 years for the transplant. That would be a total 7.5 years of waiting between waiting for the five years after the cancer treatment and then 2.5 years waiting for the transplant.
How long after receiving treatment for your breast cancer before you were told you had developed cardiomyopothy? Not long after. I did not even know that I was sick. I had gone to visit my sister, who lived in an upstairs apartment, and I was having a difficult time climbing the stairs. I was breathing hard and panting. My sister asked me if I was really having that much difficulty getting up the stairs and I said, “yes.” And she asked me if was okay and I thought that I was okay. Then I went to visit my other sister who lives in Atlanta and as I went through the airport it seemed to me that people were whizzing by me and I was in slow motion and having a hard time moving. Finally, I got to Atlanta but I could not sleep. I could not lay back and breathe well. I told my sister something was wrong with me. I did not know what it was but knew something was wrong. I made the best of that visit and went to my doctor as soon as I got back. They found I had cardiomyopothy and congestive heart failure due to adriamicine.
What is like being on the waiting list? I just did not know how long it would take. Some people get their transplant real quick, some people have to wait awhile. I wondered how long it was going to take for me. And then one day I just realized it was going to happen when it happens. And I know it’s going to happen because enough people told me it was going to happen. So, just wait. So that’s what I did.
What was it like when you got “The Call?” Oh my goodness, when I got “the call” I did not; you just don’t think it is real. When the phone rang I was actually getting ready for bed. Actually, I was down on my knees saying my prayers when I realized it was a 520 number. I was thinking it was my friend in Tucson letting me know that her granddaughter had had her baby. So when I was finally up and able to get the phone it was Isabel and she said, “well, Laura, are you ready to come down to Tucson.” And I said, “are you serious” and she goes “that’s the first thing they usually say.” So then I said, “oh my God!” and she said “that is usually the second thing.” I said, “is this for real?” She answered, “yes this is for real. Come on down. Take your time – do not be in a real big hurry – be safe getting here.” I was kind of in a daze. I kind of walked around in a circle; I did not know what to say or what to do. I went and got my daughter and I said, “we got to get to Tucson.” And of course, she does not do freeway driving so I drove myself down to Tucson for my heart transplant!
How did you contact your husband or how did he find out? I was driving to Tucson and our daughter got on the cell phone to call my husband because I could not talk to him because I was driving and I did not want to be distracted because I had “business” – “big business.” He was in Texas at the time so he was not actually there for the transplant but made in to the hospital within a couple days.
So how were you doing when he finally arrived at the hospital and saw you for the first time with your new heart? He was amazed. He was just amazed to see me there after this transplant and talking to him. I had all these IV’s and drains but he was really happy to see me and be able to talk to me.
How has your life changed after transplant? I can walk and talk at the same. Before I used to say to people, “don’t talk to me I can’t talk to you why I’m walking. We are going to do one or the other; walk or talk. We can sit down and talk or we can just walk.” Walking was a little bit difficult, distance wise. Not so much walking itself, just covering distance. I just did not go places. Mainly I just stayed around the house because I did not have the energy to do a whole lot. The phone would ring and I would not even be in a hurry to get it. I figured if they were calling and needed me that would call back. It was really a chore to just get to the phone.
Do you have any limitations since receiving your transplant? I am not limited in anything. I think my family wants me limited because they want me take it easy. But I am just ready to do some things. Some charity is going to get a bunch of things from me. Things that I have collected over the years when I could not do anything.
What impact has your regained health had on your family? Although they do not want me to do too much, they are loving it because you know, I cook a little more and they like that! My daughter that lives with us will occasionally leave her laundry in the dryer and I will fold it for her. My other daughter that does not live at home says it must be nice to have someone do your laundry!
How old are your grandchildren and do they know and understand what it means for you to have had a transplant? Marty is 5 and Cash is 3 and yes they understand. They came to visit me when I was still in Tucson, after my transplant, so they were familiar with the mask and gloves. In fact they thought the mask and the gloves were the coolest things. And they were very cautious when I first got home. So, yes, they are aware of what has happened to me and when they see my surgery scar they ask, “Grandma is that where you got your new heart and I always answer yes, sure is.”
Have you placed any restrictions on yourself in regard to immunosuppression that you do now that you did not do before? No I am just trial and error. If I can do it, I am doing it. Sometimes I say to myself, I probably shouldn’t be doing this but I’m just going to go ahead and see if I can get it done.
In regard to illness, I am always wondering, when I am next to someone, I am wondering if they got their flu shot yet, and which flu shot did they get. I pretty much try to keep my distance from people other than who I am seeing.
Have you done any traveling since your transplant? We drove across country to Iowa. My daughter and my son and I and I did all the driving – basically. And we had a great time.
Have you had any contact with your donor family? No I have not had any contact with the donor family. I would love to send them a message. They are always welcome to send me a message.
Would you like to share anything we have not asked you or something you would like to share with the community at large? I would just like to say that I have always been a woman of faith and I always knew this transplant would happen because I kept telling people, “when” I get my heart – I just knew it would happen. It was always “when” it happens, “when” it happens, “when” it happens. I just feel the focus is on me but it is more about the power of God and the donor family giving me a second chance life and a better quality of life.
Were you involved with support services before transplant? Yes. Someone had told me about the New life Society (NLS) and I kept saying I was going to go, I was going to go, but I just kept lying on the couch. One day I got up, looked at the newsletter from NLS that somehow kept finding its way in the mail to my house, and finally said I am going to go to one of those meetings. One day I just got up and went. I went to the meeting at Grunow and it was the best thing I could have ever done. The people were all so nice. Everybody just welcomed me. I did not feel like I was alone even though I came by myself. I just did not feel alone. I went home and told my husband about it and told him he had to go to one these meeting with me and meet these people. They are so encouraging and it is like one big family. And he said he was going to go when his schedule permitted it. He was able to make one of the meetings and then he went to one of the Coco’s dinner and he loved it.
Did the meetings provide anything that was helpful to your husband? Oh yes. There were people there that would tell him certain things about what to expect and things he could do. He was very grateful for the information.
A life long resident of Arizona, Zoe grew up in rural Gilbert. She graduated from Highland High School in Gilbert and then continued on to pursue a Bachelor of Music Performance at Denver University in Colorado.
Returning to Phoenix in 2001 she began bookkeeping for the family business, MSC Distributing. Zoe’s great grandfather Herbert L Stevenson settled in Phoenix in 1903 and established Motor Supply Company, a warehousing company that provided auto parts for the newly manufactured Model T. The Stevensons ran this business for over a hundred years, selling the auto parts division in the 1980s and focusing on oil. Zoe was the forth generation to run the company in 2014. After starting out in bookkeeping and everyday management, she was promoted to president of a $12 million a year company that distributed Pennzoil, Shell products all over the state of Arizona. Zoe’s fiscal responsibly to the family carried the company through the recession. No job was too small or too great for her as she always was willing to conquer any obstacle. The company was sold in 2016, and she was the primary negotiator.
When Zoe started as office manager at New Life Society in 2017, she was brand new to the transplant community, however she brought a caring and inclusive attitude. Always striving to improve the organization, she is keen to lead it into a future of helping more people to survive and negotiate the complicated world of organ transplantation. In February of 2018, the board displayed great confidence in her ability and promoted her to Executive Director.
Zoe loves life and helps everyone she touches to improve theirs. Never taking no for an answer, she is analytical and methodical when working to solve problems. She has an appetite for learning and self improvement.
In her leisure time, Zoe enjoys horseback riding, spending quality time with her wife and her family, playing the piano and working around the house.
Robert Scanlan is the grateful recipient of three organ transplants: a liver in 1998 and another liver plus a kidney in 2008. He is the author of the highly acclaimed true memoir Tigers Under My Bed: Life Lessons Tamed During Three Organ Transplants.
Prior to transplant, Robert founded with Nobel Laureate Dr. Milton Friedman the nations’ first non-bank to fund Small Business Administration loans. This innovation has become a multi-billion dollar industry. Robert later formed another lending company to personally fund over 200 small businesses.
While he managed investment portfolios for wealthy individuals, Robert’s liver failed without warning. He received a transplant in two weeks, and returned home six months later having lost everything. He spent years creating a new successful career, and a new personal life. Ten years later the new liver failed, and Robert received another liver and a kidney. He has received numerous accolades and awards from One Legacy in Los Angeles, from Donor Network of Arizona in Phoenix, and from United Blood Services in Phoenix.
Robert is a professional inspirational speaker. He has addressed thousands, often in participation with Donate Life, The American Kidney Association, The National Liver Foundation, United Blood Services, and Prime Care Hospice to deliver their message to the general public and professional groups. Currently he lectures to social worker classes in post graduate studies at the University of Southern California. His book is reference material for students at USC, and is used at UCLA’s Ronald Reagan Medical Center for education of patients and caregivers.
Judy Maltz has been talking reimbursement since 1986 when she began her career in the home infusion therapy business…what she calls “the original specialty pharmacy”. After 10 years Judy left the provider environment to work for Healthcare Delivery Systems, a small but growing division of McKesson, which today is McKesson Specialty Solutions. Offering reimbursement consulting to manufacturers, conducting Provider Education, designing and managing Patient Assistance Programs and Reimbursement Hotlines across multiple therapeutic areas established Judy’s depth of knowledge in policy, coverage and reimbursement of pharmaceuticals.
As Reimbursement Program Manager for United BioSource Corporation (UBC), Judy fine-tuned her skills by developing payer advocacy strategies, providing payer coding and policy analysis, creating provider education modules and reimbursement programs for biotech and pharmaceutical companies including Sanofi Pasteur, Bayer, Novartis, and Gilead Sciences.
It was during these last 8 years at UBC when Judy worked as the reimbursement ambassador for Novartis Pharmaceuticals’ Transplant franchise that she found her true passion. In serving the transplant community, Judy always takes a patient-centric approach, working to resolve immediate reimbursement issues while continuing to clear the path to secure future medication coverage. This takes solid collaboration and consistent communication with patients, families, providers and payers. Her trademark is bringing insight and clarity to the most complex of payer issues through education, support, patience and perseverance.
Judy has presented at over 100 Transplant Centers across the country and is a speaker at transplant patient support groups.
Currently working as an Associate Director at Xcenda, LLC, a consulting company, Judy is also an active volunteer with her local chapters of the American Liver Foundation, the American Kidney Foundation and was appointed a board member of Transplant Community Alliance in 2016.
Gregory Welsh, a 50 year old father of one daughter, has experienced the lifesaving benefits of donation first hand. After a fatal car accident in 1996, Gregory made the decision to donate his wife’s eyes, tissues and organs. Fifteen years later his generosity came full circle when on May 18, 2011, four months after suffering a heart attack that made him reliant on an artificial heart, Gregory received a heart transplant. He has since become an advocate and voice for donation. He is currently employed by Gervasio, & Assoc., Inc, an engineering consulting firm. Past experiences include business ownership and technological expertise in the computer field. Besides working full time, organ donation awareness has become a full time passion. Gregory brings personal experiences and dedication to the mission of the New Life Board.
Dan was born in Tucson, Arizona. His family believed in organ donation and Dan registered as an organ donor while a teenager with the approval of his parents. Little did Dan know that organ donation would directly affect his life in the future.
Dan completed his studies in the Phoenix area. He began his career in the aerospace industry with Sperry Flight Systems in 1981. While working there he met the love of his life Anna who was employed at Honeywell. Eventually Sperry merged with Honeywell, and Dan and Anna became life-mates as well.
In 2001 Anna became very sick. Changing doctors in search of answers, it was determined that Anna had liver failure caused by Hepatitis C. In November 2002 she received a liver transplant at Mayo Phoenix.
After recovery from her surgery with Dan at her side, Anna and Dan became involved in the transplant community with the idea of helping others. They volunteered time and effort with the Donor Network, the Liver Foundation, the Kidney Foundation and Transplant Team Arizona. Anna participated in the Transplant Games of America. and eventually she and Dan immersed themselves in the Transplant Team program. Dan became a board member and then President of the Board.
In 2017 Dan was a leader in the merger of Transplant Team Arizona with the New Life Society, where he now adds strength as a board member.
Cesar Alvarez joined the board of directors in June 2019. “My Passion comes from my own experience of undergoing a liver transplant, and being a volunteer is my way of paying back my Gift of Life.”
Cesar’s passion for volunteering is strong. He has been a speaker for Donor Network of Arizona since 2012. He is a caring person and is always interested in hearing stories from other recipients and donor families.
Cesar was born and raised in Southern California. He graduated with BA Degree from Brooks Institute School of Photography in Santa Barbara, California and degree in Commercial/ Fashion photography/Business. He then graduated with Masters Degree from USC (University of Southern California) School of Cinematics, Film Production and Director of Photography.
In Los Angeles, Cesar worked as a Still Photographer for Silverman Productions. He then became a Los Angeles County Firefighter for 26 years. He retired after an on-duty injury in 2006 resulted in several surgeries, hospitalizations and lots of anti-inflammatory drugs and pain medications. After retiring, Alvarez and his wife moved to Peoria, Ariz. Not long after the move, he started feeling fatigued and weak. A liver specialist in Glendale, Ariz., diagnosed him with NASH (nonalcoholic steatohepatitis) and told him he would need a liver transplant. Cesar received his transplant on Oct. 19, 2010. “I remember waking up in ICU. Once I was able to open my eyes everything in the room seemed brighter and clearer … I was alive, and I knew I had been given a second chance, and it felt so good.”
Today, Cesar works as a freelance photographer. His current passions are saving lives with organ donation, Jesus Christ, flying, shooting and die cast collecting.
Andrew Bombeck – Andy is a kidney recipient of 11 years after receiving a live donated kidney from his wife Shari on April 11, 2003. He is a retired elementary school teacher after 30 years and now spends his time writing, playing tennis, playing guitar, and promoting organ donation by working with the New Life Society’s Schools Program and volunteering with Donor Network of Arizona. He was on the board at the Arizona Kidney Foundation Board for 8 years and currently serves as a board member and has competed with Transplant Team Arizona in the Transplant Games since 2008. Andy lovingly admits he’s in a losing battle trying to keep up with his 8-year old son, Michael.
Will you describe what your life was like before Transplant? Over the years prior to my kidney transplant in 2003, my energy level was slowly declining. I was teaching elementary school at the time. Most teachers will agree that patience is the one thing that makes a good teacher. Because my health was declining, the two years leading up to my transplant in 2003 were difficult. I have to admit it made it very challenging to be the kind of teacher I had been, as my patience declined as well. I continued to do most things I had done prior transplant, but it was harder because my energy level was so low.
Please describe what waiting for the transplant was like. Prior to my transplant, I was dating Shari who told me that if she was a match she would donate one of her kidneys to me. At the time, I was on transplant waiting list at Good Samaritan Hospital. After Shari was tested and confirmed to be a match, as you can imagine, I was more than ecstatic!
Will you share some of your dreams and fears while waiting for a transplant? My greatest fear before my operation was not surviving the operation. Many people do not know it, but my mother had kidney failure and was also listed for a kidney transplant. In 1996, after waiting many years on a transplant list in Phoenix, my mother finally got “The Call” and received a cadaver kidney. Five days after her transplant she tragically and unexpectantly passed away. It was because of that, that I feared the actual operation more than I probably should have.
One day, I made a pact with God and promised that if I survived the operation I would attend church every Sunday; and I have kept that promise. One year after my transplant, in 2004, Shari and I got married and continue to remain “connected” in more ways than the “obvious” one.
How has your life changed after transplant? My life dramatically changed on April 11, 2003, when I woke up in the recovery room at John Hopkins following my transplant. I instantly felt I had regained all the energy that had been gradually declining over the years, prior to my transplant. Like many recipients, I realized then more than ever, just how precious each and every day is and try hard to take advantage of that. The first “big” thing that Shari and I decided to do in 2006 was adopt a six-month old boy from Guatemala named Michael. I always wanted kids but because I married late I never thought that would be possible. Today I “pretend” to have the energy needed to keep up with a teenager, which prior to my transplant, would have been truly impossible. Three years ago I retired from teaching and spend a lot of time playing tennis, writing and promoting organ donation. I am a volunteer with the National Kidney Foundation of Arizona, Donor Network of Arizona, Transplant Team Arizona and Transplant Community Alliance.