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.
“I wanted to be tired from working too hard instead of being tired from treatments.”
The day after I was diagnosed with acute myelogenous leukemia (AML), I talked to my managers and Human Resources department and it was decided I would leave immediately to take time off before the transplant process started. I went on leave in the first week of July and decided to go back as soon as my doctor said it was okay, which was six months post-transplant.
I had the ability to communicate with my company as much or as little as I wanted to throughout the process just to stay connected. When I was ready to return we talked about a starting date that made sense for everyone.
“What will my co-workers think?”
I had concerns about everything from ‘would my memory be the same?’ to ‘would my co-workers recognize me with short hair?’ I worried about being able to work long hours and keep up the same pace as my co-workers. I worried about the time I had missed and how that would affect my career.
I wanted to avoid playing the victim and didn’t want sympathy for what I went through. I was just eager to return but I found that some people were “extra nice” to me. I think the biggest issue for me was internal – getting over my own fears of falling behind and needing to make up for what I had missed.
“Do I have to tell my co-workers about my transplant?”
Any information I shared about my health situation was on my own terms, to whomever I chose to tell. I was able to start at full pace, but everyone was aware of my situation and I knew that if it became too much I would let them know.
“I could have taken things a little slower”
In hindsight, I was overly eager to get back to work because I felt like I was missing out. I realize that I went right back into a fast-paced, high-strung corporate environment and maybe I could have taken things a little slower.
My advice is to take your time. It is an internal battle that you have to keep control of, if you are anything like me! I learned that it is okay to work your way back into it and that you are probably putting more pressure on yourself to get back to normal than your company will expect of you.
Most of all make sure you are ready mentally and physically to endure all that needs to be done in a day’s work. Try to maintain an efficient work/life balance because after what you went through, you deserve to be happy, healthy, and do what you love.
“My employer could no longer accommodate my needs”
I retired from my job before I was diagnosed with acute myelogenous leukemia (AML). After my transplant, I started to consider returning to work. I started a new job with a new employer. I completely disclosed my medical history during my interview. I know that is not required, but I did. My new employer understood that I had many doctor appointments and would have to adjust my schedule to meet my needs.
“I can have a flexible schedule”
I was very much aware of my rights, but my new employer was not as aware. They were willing to explore; it was just all new to them. We agreed to a contracted status of working less than a full week. This allowed me to work and have my life outside work.
However, the longer I worked, the more time I needed to take off for transplant complications. Because there were no part-time employees at my company, it was difficult to keep up a part-time schedule, so I chose to leave this job and retire from my career.
“I listened to my body”
Embrace the possibility that post-transplant may be different from pre-transplant in that you become aware of your own body changes. For me, I could feel I was not as “quick.” I could not multi-task at a level I remembered functioning at prior. Even though I could not work as much as before, I knew I was contributing to the team.
“Working is not my whole life”
My experience has shown me that working is a good thing, but depending where you are in your life, it may or may not be a priority for you. In my case, I am 58 years young. Working too much was not good for me. I didn’t want work to be my whole life, so I chose to leave when my body told me it was time. I wanted to start a different life, one that involved helping others and having more meaning for me.
Understand your rights about going back to work and disclosing health information with these resources: