Tackling Post-Transplant Complications
In 2013, thanks to a partnership with the American Society of Blood and Marrow Transplantation, we awarded not one, but two Amy Scholar grants. They went to Ran Reshef, MD, from the University of Pennsylvania, and Everett Meyer, MD, PhD, MS, from Stanford University. Dr. Reshef and Dr. Meyer were competitively selected based on the merits of their research projects and will join an esteemed cohort of 23 Amy Scholars who are key leaders in the field.
Dr. Reshef and Dr. Meyer were welcomed into the Amy Program at a reception hosted during the annual BMT Tandem Meetings, the annual conference of the American Society for Blood and Marrow Transplantation (ASBMT) and the Center for International Blood and Marrow Transplant Research (CIBMTR). Dedicated exclusively to transplantation, the 2013 conference was attended by more than 2,800 researchers and physicians from 49 countries, and received more than 570 top research abstracts. Each year, a committee reviews and selects the best abstracts from the hundreds of submissions. Of the six best research abstracts awarded, four of the six were submitted by current and former Amy Scholars, a testament to the caliber of talent that is developed through this critical program.
We need your help to keep the momentum going! Please give to support the Amy Scholars and their life-saving research.
Three-Year-Old Ben Fought for His Life and Won
It all started in January 2011. Ben, then three-years-old began to experience severe bruising, and a trip to the doctor found that he had low platelet counts. Ben was diagnosed with a disease called congenital amegakaryocytic thrombocytopenia (CAMT), a rare inherited bone marrow failure disease in young children where the bone marrow no longer produces platelets or megakaryocytes, meaning that if the child begins bleeding—his or her blood will not be able to clot. Ben’s parents, Katy and Todd quickly discovered that his best chance at survival would be a marrow transplant. They worked with their transplant physician to find their donor who was listed on the Be The Match Registry®.
The search for a match
After just two months, the search for a matching donor was amazingly successful. “Our doctor found five perfect, unrelated matches through the Be The Match Registry.” In June 2011, Ben received his transplant at Children’s Hospital in St. Louis, Missouri. While the pre-transplant conditioning was described by his mother, Katy as “very grueling, but manageable” the actual transplant was “beautiful, Ben slept through the entire process.”
The first 100 days
The first 100 days after transplant are critical – recipients are at risk for various complications, such as infection, graft-versus-host disease (GVHD)and even graft failure or rejection. Thankfully for Ben, while he experienced some minor infections and a few rashes, he never developed GVHD. The first 100 days were “Difficult and intense because we followed the regulations and doctor’s advice exactly,” said Ben’s mom, Katy, “but we had excellent family support and a good sense of humor and optimism.”
Adjustment to “normal” life
When Ben returned to school, he had some difficulty adjusting to school life and socializing with the other children, “because of what he went through.” But now, Ben is an outgoing, determined and intelligent boy who enjoys school and his new friends.
Today, life is back to normal for Ben and his family. “I love watching my son enjoy his life and get to do all the normal things five-year-olds do,” said Ben’s mom, Katy.
Ben’s donor
And as for Ben’s donor? “We exchange emails and are friends on Facebook. Though we live so far apart, it was amazing to learn his in-laws live only 45 miles away from us!” said Ben’s mom, Katy. Ben’s family hopes to one day meet his donor in person to say “thank you.”
Learn more about the transplant process >
Editor’s Note: A donor and patient may exchange contact information if the patient’s transplant center rules allow, it has been at least one year since transplant, and both donor and patient consent.
Help This Father Register 1,000 African American Marrow Donors
Kevin Weston has perspective. He just wants to see his little girl grow up and to grow old with his wife. But to do that, he needs your help.
Like so many battling blood cancers, this 44-year-old journalist has leukemia and needs a marrow transplant, but doesn’t have a matching donor on the registry. He’s asking the nation to help him register 1,000 new African American marrow donors in the next two months. For Kevin, time is critical.
Patients are more likely to match someone who shares their ancestry and African Americans are under-represented on the registry. By adding more African Americans, patients like Kevin have a better chance at finding a match. Tell your family and friends in the African American community to join at BeTheMatch.org.
Meet Three Patients in Need of a Marrow Match and Learn What You Can Do
Kevin is a journalist and a newlywed from California. Carol is a physician assistant and breast cancer survivor from South Carolina. And Andy (A-Dog) Williams is a young Hip-Hop DJ from Vermont. They don’t know each other, but they understand each other’s fight.
Each knows that somewhere in the world is a person who could save their life. They all have some form of blood cancer that can be treated with a marrow transplant. But none of them have a marrow match in their family and currently there is no matching donor on the Be The Match Registry®. So what’s next for them?
They’re not giving up, and you can help. Please spread the word to your family, friends and co-workers to join the Be The Match Registry today. The more people who join, the better the chances all patients have of receiving a transplant.
Thousands of patients are currently searching for a marrow match and too many, like Kevin, Carol, and Andy, are African American or multi-racial. Their odds of finding a marrow donor are lower because people who share their heritage are less represented on the Be The Match Registry. Ancestry matters. Join
Know your risk factors for developing heart problems after transplant
Certain types of treatment before your transplant or complications that happen after transplant can sometimes increase your risk of heart problems. So what can you do now? Dr. Saro Armenian explains some of the signs and symptoms you should be looking for, the questions you should be asking your doctor, and what you can do now to improve your heart health.
Q: What effect does my treatment before transplant have on my heart?
The treatment you received before your transplant has just as much of an effect on your heart as the transplant itself. Treatments before your transplant that increase your risk of heart problems include: chemotherapy with a group of drugs called anthracyclines (doxorubicin, daunomycin, idarubicin, epirubicin) or past treatment with radiation involving the chest wall.
It is very important that you know the types of chemotherapy or radiation you received. Most transplant centers can give you a summary of your treatment history. This is a good way for you and your doctor to talk about any long-term effects that your treatment may have on your heart health.
Q: Could my personal or family health history have an impact on my heart health?
As a transplant recipient, risk factors like diabetes, hypertension, and abnormal cholesterol (that shows up after transplant) can also increase your risk of heart disease. These risk factors, combined with transplant-related treatment, can put you at a greater risk for heart issues. You should tell your health care team if there is a family history of cardiovascular disease such as heart attacks, strokes, or heart failure.
Q: What are signs and symptoms of heart problems?
Symptoms of heart problems for transplant recipients are the same as the rest of the population. Symptoms include, but are not limited to: shortness of breath, dizziness, lightheadedness or near-fainting, chest pain, swollen ankles or feet, unexplained cough and wheezing that will not improve with time, periods of heart racing or throbbing, or periods of irregular heartbeat.
Let your healthcare team know any time you have any of these symptoms or if you’re worried about your heart health.
You may not have obvious symptoms, but abnormalities can show up on routine tests, like an echocardiogram (ultrasound of the heart), EKG, or blood tests.
Q: If I have any of the symptoms mentioned, what heart problems could I have?
Blocked or scarred blood vessels of the heart (coronary artery disease), weakening of the heart muscle (cardiomyopathy or heart failure), irregular heart rate or rhythms (arrhythmias), problems with the valves within the heart (valvular problems), or scarring of the sac around the heart (pericardial disease), are all things to watch for. These health conditions are often life threatening and are one of the leading causes of death in long-term survivors of transplant.
Also, GVHD medications such as cyclosporinesteroids, and other groups of medications increase the likelihood for premature heart disease.
Q: What tests should I have to find out if I have any issues?
A good starting point is making sure your doctor has a detailed history of your health, including symptoms, family history and medications you’ve taken. Also, you’ll want to get a physical exam that checks blood pressure, heart rate, and your heart and lungs. Lastly, some doctors may want to do follow-up tests such as x-rays, echocardiograms or an EKG.
Editor’s note: Post-transplant guidelines from Be The Match® provide screening and preventative steps for transplant recipients. For your heart, the guidelines recommend:
- Checking for heart and blood vessel risk factors, such as high cholesterol, high blood pressure, obesity, history of smoking
- Discussing a “heart healthy” lifestyle (regular exercise, healthy weight, no smoking, dietary counseling)
- Receiving early treatment of risk factors such as diabetes, high blood pressure and high cholesterol
- Find out if you need to take antibiotics before a dental procedure to prevent a bacterial infection.
Q: Are young transplant recipients also at risk for heart issues?
Yes. Because transplant recipients are at a higher risk of developing heart disease than the general population, it can also occur at a much younger age. The process of developing heart issues can increase because you had pre-transplant treatment and may have other risk factors.
The good news is that younger patients who take charge of their health can really reduce their risk with lifestyle changes and medication.
Q: How can I keep my heart healthy as a transplant recipient?
You can cut down your risk of heart problems by not smoking (or quitting if you currently smoke), maintaining a healthy body weight, limiting fat in your diet to no more than 30% of calories, and exercising regularly for at least 30 minutes on most days of the week.
If you have heart risk factors such as hypertension, diabetes, or abnormal cholesterol, make sure your primary care doctor keeps an eye on your blood pressure, blood sugars and cholesterol levels.
Q: What are ways I can be proactive about my heart health?
It’s a good idea to maintain regular contact with your healthcare team, so that you can have routine screening for early heart disease. By finding any issues early, you can minimize the risk of life threatening heart problems.
Keeping your relationship strong when your spouse is your caregiver
Wendy and Clark have a lot to celebrate these days – 25 years of marriage and Wendy’s upcoming 4th “new” birthday.Clark was Wendy’s primary caregiver as she battled ALL and MDS, and during her double cord transplant in the summer of 2009. As husband and wife, they are now back to enjoying hiking, spending time with friends and going to church.
Whether you are a patient or a caregiver, you know that going through the journey of a life-saving transplant affects your relationship with the other person, for better or worse.
Wendy and Clark say they are best friends and love spending time together. How did they manage the patient/caregiver dynamic as a married couple? How did they make it through years of chemotherapy and a transplant to arrive at a relationship that is stronger than ever?
The patient: Wendy’s perspective
The hardest part about balancing the roles of patient and spouse was realizing how much my role as a wife changed. Before transplant, I felt equal to my husband in every way and now I did not. I felt weak, less than. My husband absolutely did not make me feel that way – it was all me. However, when you can’t do the same things you used to do and need to be taken care of, it affects how you feel about yourself and the most important relationships in your life, like being a spouse.
I think the patient/caregiver dynamic will always be part of our lives to some extent, but it lessens more and more as time goes on. Clark will always be more protective over me and my health because of my diagnosis and transplant, but I’ve been able to manage all aspects of my health care by myself for three years now and it is no longer a daily issue. Clark would tell me over and over again my only job was to recover and get better. In that sense, he made it very easy for me. He wasn’t expecting me to play the same role I had before I was diagnosed. However, there are times when, as a patient, you don’t want to be in that role – you want some sense of normalcy. You just want to be a husband or wife. That is why communication is very important. You need to let your spouse know, in a loving way, of course, that you don’t want to feel like a patient all the time. At some point you want to start taking on the spouse role to feel normal and productive, and as a distraction from being a patient.
The biggest issue for me is understanding how to deal with my emotions. It is better than what it was early on, but he still has to help me out in that area on occasion (as well as seeing a counselor, occasionally). It’s important that we both feel like we can communicate freely. We each talk about our fears, frustrations, disappointments, anxieties, grieving. Each person can then appreciate what the other is going through. Many times, we are both feeling the same way. Then we can help each other and not feel so alone. In the process we became closer.
Another part of communication that few people are willing to talk about is sex. Things change after diagnosis and transplant. Talk to your doctor or a certified sex therapist (we found one who was excellent) if there are any issues in that area for either partner. That can strengthen a marriage greatly and enhance communication, self-worth and happiness.
There are a few strategies or ideas that have helped us keep our relationship strong. For example, we make time to do things that don’t revolve around anything medical; take a walk, watch a movie, play a game or go out with friends. As equally important for us is prayer and worship time together. Slowly introduce tasks that the patient can do to contribute to the daily running of the household (paying bills, fixing dinner, doing laundry) so that the patient feels productive and needed. Consider asking friends and family to help with daily chores (grocery shopping, cleaning, medical appointments) so that there is more time for relationship time. Talk to each other frankly about needs and expectations. Get outside help if you need it – from a counselor or pastor.
I believe a relationship can’t help but change after an experience like this. For us, thankfully, it deepened and strengthened our relationship. We know what each is made of now. But it does change the dynamic. We view life differently now. We have experienced life changing drastically from one moment to the next – never to be the same. That changes a person and a relationship. We make and think of plans differently; there is always a caveat. But it also makes us appreciate each other and every moment we have together and every special occasion, even more. We try not to take anything for granted and be very grateful.
The most special part was seeing my husband take on roles that he really hadn’t before, and that just deepened my love for him. For a while, he had to do everything, and he did it all without complaining. He demonstrated his love and commitment to me by doing all the mundane (and extraordinary) things on a daily basis. He was living out the vows he had professed to me 20 years earlier – in sickness and health, good times and bad.
“The line between caregiver and spouse would blur frequently. I would be flushing her picc line one minute and the next minute discussing what to get our dads for Father’s Day.”
-Clark, caregiver
The caregiver: Clark’s perspective
The line between caregiver and spouse would blur frequently. I would go from being a caregiver to being a spouse back to a caregiver in the same hour. It all depended on what needed to be done. I would be flushing her picc line one minute and the next minute discussing what to get our dads for Father’s Day. It is hard to distinguish why you are doing or saying a particular thing. Am I making dinner and doing the dishes as a spouse or a caregiver?
It was a little different for me because Wendy was diagnosed with ALL and two years before her transplant she went through HCVAD (a type of chemotherapy regimen) for eight months. The chemo was eight rounds, which required hospitalizations for 5-10 days. The caregiving role after the transplant was not that different from the caregiving role during HCVAD. Of course, I had no idea what was ahead of me as a caregiver. I was totally unprepared.
For me the hardest part of our dynamic was knowing when to be a caregiver and when to be a spouse. There were times when my wife needed one over the other. Today, I would say my role as a caregiver decreases every day. From 2007-2009 I was an active caregiver, but now it is more passive. But I think it will always be part of our relationship. When you are a caregiver for someone you have committed your life to it is hard to erase that thought pattern. Although as time goes on it becomes less and less of a thought pattern.
Communication is an excellent way to maintain a healthy relationship. Making time for each other is also very important. We walk every day together and talk about what is going on in each other’s life. Even though we now have a new normal we still have a normal life, we do the things we did before the transplant.
If I could say anything to other couples in this situation, I would tell them that I know it is hard but do not let the disease or transplant define who you are or who you are married to. This is just another bump in the road of life. I know it is a big bump but you can make it. There is a light at the end of the tunnel and it is not a train. Life will get back to a new normal and the roles of caregiver and patient will fade with time.
This experience has caused us to deepen our relationship and love for each other and there is a sense of satisfaction knowing that we went through hell together and ended up closer than before.
Who is your caregiver? And in what ways did your relationship change? Share your story
“To Me, It Was a ‘No Brainer’,” College Football Player Stays True to His Commitment to Be The Match
Matt is an extraordinary 22-year-old man. He went from starting offensive lineman on his college’s football team to life-saving marrow donor. It all started as a request from Coach Joe – volunteer at a drive hosted by his football team, and join the Be The Match Registry® to help save lives. Matt decided he could make the commitment and he joined the registry in the spring of 2009, the end of his freshman year of college.
Ready to Donate from the Start
From the beginning, Matt was passionate about the cause. “Watching the videos about Be The Match® really opened my eyes. After joining the registry I began to give blood on a regular basis,” said Matt. Two years later, in the spring of 2011, Matt received the call he never thought would come. “I was told that I was a potential match along with three other people for someone in need of a transplant.” Matt went on to complete further testing to see if he was the best match for that patient. When Matt was told that he was the best match for a 42-year-old man with a form of lymphoma, he was shocked but excited to move forward with donation. “I was so excited; I wanted to donate right away. I said ‘let’s go’ but I was told it would take some time,” said Matt.
The Competitive Spirit between Brothers
Matt was told that the donation method requested by the patient’s doctor was a peripheral blood stem cell (PBSC) donation. He was prepared for the possible side effects, but did not experience any reactions until halfway through the third day. “I had a massive headache and felt achy,” said Matt. “I told my coach and ended up sitting out of two football practices.” Even with the headache, Matt described the days leading up to donation as “not too bad.” As for the donation? Matt took his competitive spirit with him for the collection. “Within four hours, the apheresis center had extracted enough for two donations because my count was so high,” said Matt. “It was the highest count they had ever seen, until my brother.” This past fall, Matt’s younger brother John also donated PBSC to a patient in need. Nineteen-year-old John, who is also an offensive lineman on the University of Rhode Island football team, registered in the spring of 2012. “My parents thought John always wanted to follow in my footsteps,” said Matt. “Now he really is!”
Matt and John both received an outpouring of support from their friends, family and teammates, especially from people touched by cancer. “They thanked me for what I did. It was a reaction I wasn’t prepared for,” said Matt. “They were all so proud, but to me it was a no brainer.”
Meeting Matt’s Recipient and Their Football Connection
A year after Matt donated PBSC, the Orlando Cancer Treatment Center flew him down to Florida to meet Ken, his recipient. Ken, coincidentally a huge college football fan himself, is in full remission. After his graduation this past December, Matt traveled to Florida a second time to attend a college bowl game with Ken.
Matt plans to continue his education with a master’s degree in exercise science or strength and conditioning—while staying involved with Be The Match putting on registration drives. In the past three years of the football team’s annual drive program, the school has produced four donors—Matt, his brother John, his assistant coach and another college athlete.
Two Months After Joining the Registry, Lexy Donated to Save a Life
In 2010, Lexy, a college sophomore, joined the registry at a Yale University drive. Two months later she was called to donate for a 64-year-old man diagnosed with acute myeloid leukemia. “I donated three days before Christmas, and it was the best gift I’ve ever given – the gift of life,” said Lexy. “Now I am very involved with organizing drives on campus each year. After four years of drives, we’ve added more than 3,000 people to the registry with over 14 matches to date.”
“Thousands of people are looking for a match,” said Lexy. “I joined the registry and when I received the call from Be The Match saying I was a match, it was the most amazing feeling. Now I tell other students that they, too, could be the cure.”
Our New Face on Capitol Hill
This year, Be The Match® brought a new Legislative Director on board. Chad M. Ramsey joined the staff in January and has been working to expand our advocacy program while advancing our legislative agenda. Based in Washington, D.C., Ramsey brings 15 years of experience managing state and federal legislative campaigns to Be The Match. Ramsey holds an MPA from Syracuse University and, outside of the office, he is a flag football weekend warrior and occasional rock band musician.
