Emotional recovery after a blood stem cell transplant

Whether you or a loved one had a transplant, you’ve been through a lot. It’s normal to sometimes feel down or worried after transplant even if you’ve been upbeat throughout treatment. At the same time, you may find positive meaning and personal growth from your experience.

Emotional highs and lows after transplant are normal. But when feelings of anxiety, worry or feeling down won’t go away or get in the way of everyday activities, it’s time to ask for help.

You can’t just “shake off” anxiety or depression but both are very treatable. Anxiety can be accompanied with feelings of worry, fear or dread. Symptoms of depression may include:

• Feel sad, irritable or an “empty” mood that won’t go away
• Sleeping more or less than usual or not being able to sleep
• Having trouble concentrating, remembering or making decisions
• Not being interested or finding pleasure in activities you used to enjoy, including sex.
• Feelings of guilt, hopelessness or worthlessness
• Thoughts of self-harm or suicide.

If you’ve had any of these symptoms for 2 weeks or longer, it can be a sign you need to ask for help. Speak to a doctor, therapist or counselor and tell them about how you’ve been feeling.

If you have thoughts of hurting yourself or others, get help immediately. Call 988, the national suicide or crisis lifeline, any time—24 hours a day, 7 days a week—to talk with someone who can help. You can also dial 911 or go to your local hospital emergency department (ER).

If you think you’re depressed or have anxiety, or you’re concerned about a loved one, it can sometimes be hard to talk about it. Try these tips to get the conversation started.

With your doctor:

• “I haven’t been feeling like myself lately. I’m concerned that I’m depressed or overly anxious.”
• “What do you recommend so I don’t feel like this all of the time?”
• “My friend told me that she’s worried about me. She wondered if I was depressed.”

With a loved one:

• “You don’t seem like yourself. How are you feeling?”
• “I’m worried I might have depression or anxiety. Do you think talking to a doctor could help?
• “It’s ok to ask for help. Your doctor would want to know about these feelings you are having so she can help you.”
• “I’d like to help you get treatment. Would you like me to be with you when you make an appointment with your doctor?”

Sometimes the anxiety is so intense after going through a very difficult experience that post-traumatic stress disorder, or PTSD, develops.

Some of the symptoms of PTSD include:

• Bad dreams
• Scary thoughts
• Reliving your experience over and over
• Feeling emotionally numb, guilty, depressed or worried
• Feeling easily startled, tense or “on edge”

If any of these symptoms last more than a few weeks, they might be PTSD. Tell your doctor about your symptoms. Many people with PTSD get better with medicines, counseling and/or group therapy.

While there is much to celebrate as you recover from transplant, you may experience feelings of grief and loss over lost opportunities or dreams for your future, changes in your relationship or a loss of identity. Coping with grief and loss is part of your transplant recovery.

The first step in healing is to recognize symptoms of grief, which can include:

• Feeling sad, angry, guilty or irritable
• Sleep a lot or very little
• Crying
• Loss of appetite
• Feeling alone
• Questioning your faith and personal beliefs

To work through your grief, you may find it helpful to:

• Express your grief by talking to someone you trust, journaling or taking the time to cry.
• Identify emotional triggers and make plans to cope with them.
• Work towards accepting your experience and reframing your goals for the future.

Talking to family, friends, your faith community or a professional grief counselor can also help you find ways to cope.

Even if you’re still overcoming depression, anxiety or grief, you may experience personal growth from all you’ve been through. Reflecting on your transplant journey and how it has affected you can help you grow emotionally as you make meaning out of the experience. It may help to:

• Write your thoughts and feelings in a journal. Look for positives or meaningful changes that have happened.
• Talk about your feelings with a counselor, social worker, psychologist or faith leader.
• Talk with others, perhaps at a support group, who have gone through similar experiences.
• Teach others about what you’ve learned through your experience.

As you return to work, you may experience many mixed emotions. Excitement about seeing friends and co-workers. Nervousness about how people will react. Concern about keeping up.

Doctors usually suggest allogeneic transplant recipients wait at least 1 year after transplant to go back to work. That’s because takes 9 to 12 months for your immune system to recover. Before you return to work, there are some things you should do:

• Talk to your Social Security plan administrator about how returning to work may affect your benefits. Learn more at ssa.gov/disability (Opens in a new tab) or call 1 (800) 772-1213.
• Contact your human resources (HR) department and talk to your supervisor, shop steward or union representative.
• Work out clear expectations about your schedule and workload.
• Talk with your employer about what you’re comfortable with sharing with your co-workers about your situation.
• Talk to your HR department about your health insurance benefits.
• Understand the laws, including HIPAA and COBRA, which protect your health insurance benefits if you had health insurance before your leave.

As your strength starts to come back, your sexual desire may go back to normal. Returning to sexual activity is an important part of life after transplant. But many people find their sex life changes after transplant and it may be hard for you and your partner to adjust.

Some sexual problems after transplant may be temporary side effects from treatment. Others may be long-lasting or signs of a more serious complication. Tell your doctor or nurse about any new problems you experience and how you are feeling. They can help make sure it’s not an early sign of a complication like graft-versus-host disease (GVHD) and suggest solutions.

These are some of the more common sexual problems people experience after transplant.

Loss of interest in sexual activity

If you have lost interest in sexual activity, talk to your doctor or nurse. Hormone replacement might be an option for some patients. You might also find it helpful to see a professional sex therapist or counselor.

Vaginal changes

Many women have vaginal dryness, which can cause discomfort or pain during intercourse. Over-the-counter water-based lubricants or vaginal moisturizers can help reduce pain. Prescription medicines, like vaginal estrogen, may also help.

After transplant, some women may have vaginal infections. Symptoms include a creamy-white discharge, or itchiness that gets worse if you scratch. This may be treated with medicines. If you have had sexual contact, your partner may also need treatment.

Be sure to tell your doctor right away if you have any pain with sex, unusual bleeding after sex, vaginal dryness or itching, or burning with urination. These can all be signs of GVHD.

Erectile issues

Many men have difficulty having or keeping an erection during their recovery. Talk to your doctor about options for dealing with erectile dysfunction.

Pain during sex

If sex is painful, tell your doctor or nurse. They can help find out what is causing the pain and recommend the best treatment. But even with treatment, some people still have pain with sex. Talk to your partner about what hurts. Explore other positions or ways of sharing intimacy.

Remember to practice safe sex even if you have been in a long-term, committed relationship. Your immune system is weaker than normal right now, so your risk for infection is higher. You should always use a condom during sex. Condoms help lower your risk of getting a sexually transmitted disease (STD).

Be sure to use condoms and other forms of birth control to prevent pregnancy. It may still be possible for you or your partner to become pregnant without birth control. Preventing a pregnancy is important because the medicines you are taking might hurt an unborn baby.

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.

Some questions that can help you and your partner talk about your relationship are:

• How is our 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?
• Has your role changed? How do you feel about that? How do you feel about your sexual intimacy? How might you want it to change?