The emotional stress of illness and recovery affects transplant recipients and caregivers. For parent caregivers, caring for your child can strain your relationship. It can be easy to lose touch with your partner when you need that support and connection the most.
Some people develop a deeper appreciation for each other after transplant. But others may feel frustrated or depressed about changes in their relationship. Sometimes one partner is happy with the relationship but the other partner is unhappy.
Start the conversation
Sometimes it’s hard to find the ‘right’ words to share your feelings with your partner. Still, sharing your feelings honestly and with compassion can help strengthen your relationship. You might talk about:
- The good and the bad with a focus on solutions,
- How you’d like things to be, and
- Your own feelings and actions you can take.
Be mindful to:
- Not interrupt your partner. Let them know you’re listening by saying, “I hear you.”
- Use “I” statements instead of “you.” Statements that start with “you” can put people on the defensive. Instead of “You make me feel …” say “I feel (name the emotion) when (name the behavior) and (state what you need to happen).” For example, “I feel hurt when I’m shouted at. It would be helpful if we could talk about our feelings calmly.”
“It’s important for couples to talk about all the changes they’ve been through, how they feel about them, and how they affect their priorities and plans for the future,” says Diane, MPH, BMT Patient Navigator at Be The Match®.
Some questions that can help you and your partner talk about your relationship are:
- How is your communication? Has it changed?
- Do you feel emotionally close, or distant?
- Do you share the same expectations about recovery?
- Do you share the same goals for the future?
- Have your roles changed? How do you feel about that?
- How do you feel about your sexual intimacy? How might you want it to change?
Your sexual health and intimacy is an important part of your recovery and life after transplant. But many people struggle with this after transplant. Intimacy starts with communication.
If you’re in a relationship, talking about your feelings can help build physical intimacy. Explore ways to be intimate with your partner without having sex:
- Give each other a massage
- Tell each other what you love about the other
If you’re single, you may have worries about dating again. Remember, someone who truly cares about you will accept you for who you are and what you’ve been through. When the time feels right, tell your partner about your transplant experience. Some people are ready to share this right way. Others feel more comfortable waiting until they know someone a little better. There’s no right or wrong way to share your experience.
It may be hard for you and your partner to adjust to changes in relationships and intimacy after transplant. You are not alone. And help is available.
Support groups can be safe places to talk about your relationship with others who understand. A licensed social worker can help you talk about issues and find ways to solve problems.
The Be The Match Patient Support Center offers counseling services. We provide one-on-one support by phone to help you and your loved ones cope with transplant and recovery.
At 19 years old, Shane was making plans for his life, which included starting his second year of college. Then about a week before school started, Shane woke up feeling miserable. What seemed like a bad cold or the flu turned out to be something much more serious. Doctors found Shane’s blood counts were extremely low. He had aplastic anemia.
His doctor immediately admitted him to the hospital. After trying another treatment first, transplant was Shane’s best hope for a cure. He had his transplant just a few months later. His recovery hasn’t been easy, but his transplant journey led him down a new path that he now loves.
Here are Shane’s own words on how he found his new path:
“When I found out I had aplastic anemia it came as quite a surprise. I was a very active person, and I’d felt fine until I woke up one day with a fever and sore throat. Recovery from transplant has definitely had its ups and downs. Six months after my transplant, the steroids caused me to be about 60 pounds heavier than I’d ever been. I had some skin issues that fortunately did not turn out to be GVHD. I was going back to the hospital about once a week for checkups. It was hard to deal with.
“I was used to being social and active, and I was stuck in the house. I couldn’t be in the sunlight and I was uncomfortable in my own skin. We had to be careful with who came to see me because my immune system was still recovering, but it helped to have visits from friends.
“I didn’t always deal with the emotional aspects of recovery very well. Looking back, I should have taken better care of my mental health and reached out to a counselor or someone who could help me.
“Finally in September, I was able to start volunteering at my local community arts center again. It was a saving grace to have some responsibility outside the house. But at the same time, I was dealing with another disappointment. I couldn’t go back to college because of setbacks in my recovery. Thinking about going back was what had kept me going. I took it pretty hard, but the arts center scheduled me for more time and took me on as a volunteer intern, so that helped.
“I also started tutoring adults working on their GED. And I started volunteering at a local crisis center. Over time, the crisis center offered me a paid position. Now 3 years after transplant, I’m doing pretty well. My anxieties aren’t about my transplant anymore but like those of any 23-year-old asking, ‘What am I going to do with my life?’ I don’t feel alone anymore in feeling like, ‘What’s next?’ I love my job at the crisis center, and I’ve discovered that this is the type of work I want to keep doing in my life.
“My life took a different path than I expected, but it’s led to something good and I’m thankful for that.”
While recovery is different for everyone, most people will have one or more setbacks.
Here are 2 strategies others have found helpful to cope with setbacks:
- Meet with a counselor or therapist
- Talk about your recovery with other transplant recipients ─ at your hospital or through Be The Match®
Have questions about recovery and want to talk with someone who’s been there? Our Peer Connect program can help.
We’ll put you in touch with one of our trained volunteers — who are transplant recipients and caregivers — to answer your questions and share their own transplant experiences. The program is available to both transplant recipients and caregivers and we will do our best to find someone that most closely matches your situation (based on age, disease, etc.) Talking with other transplant recipients and caregivers can help answer questions such as:
- How long did it take to recover?
- What is your life like after transplant?
Volunteers are available to talk by phone or email. Request a connection now.
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.
“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: