Coping with fatigue after transplant

Posted July 7th, 2016 by Be The Match and filed in News
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For the first few weeks after transplant, you may have expected to be tired. After all, you’d been through a lot physically and emotionally. But, if you’re still feeling extremely tired for months, or even years, after your transplant, you should talk to your health care team.

You may have chronic fatigue, and it can be treated.

“Chronic fatigue is more than the usual feeling of tiredness after exercise or not getting a good night’s sleep. It doesn’t simply go away with rest,” says Faye Bullio, ACSW, LISW-S, a blood and marrow transplant (BMT) clinical social worker at Nationwide Children’s Hospital.

Fatigue can be hard to talk about

People living with chronic fatigue after transplant may find it hard to talk about. It’s not a symptom that’s easily seen or diagnosed with a test. But, it can affect many parts of your life, including your emotions.

“Depression and fatigue often go hand in hand. When fatigue isn’t treated, it can increase your risk of feeling a sense of hopelessness. And that can lead to symptoms of depression,” says Christine Lawrence, LISW-S, a BMT social worker from the Cleveland Clinic.

Those feelings of hopelessness and depression can lower your ability or motivation to take care of yourself, says Christine. And that can lead to skipping out on physical and social activities – exactly the sort of activities that can help fight fatigue. That’s why it’s so important to talk about fatigue and treat it, she adds.

Causes of fatigue

A major cause of fatigue is the treatment just before transplant. But that fatigue usually goes away within weeks after transplant.

If you have fatigue months or years after transplant, it could be due to your medicines, poor sleep or both. For example, some medicines that treat graft-versus-host disease (GVHD) can also make it hard to sleep. Other possible causes of fatigue include pain, poor nutrition or anemia (low red blood cells).

“Feeling worried or stressed is also common after a transplant, even months or years later. And feeling worried can be exhausting,” says Faye. After transplant, children can have anxiety and stress, too.

“Children may need more support to cope with how they are feeling,” Faye says. Siblings, too, may need extra support as they adjust to life after their brother or sister’s transplant.

“If you think your child is showing signs of fatigue, be sure to tell your health care team,” Faye says. Changes in the thyroid after transplant can also cause fatigue in children, according to Faye.

Treating fatigue

Some people may not tell their health care team how fatigue is affecting them, says Christine. They may think there’s no treatment or they should be grateful for being alive. But that’s unfortunate, she says, because there may be simple ways to help you have more energy. Your transplant doctor might be able to make changes to your medicines or treat other causes of fatigue.

According to Christine, studies show that cognitive behavior therapy (CBT) can help ease some fatigue. People treated with CBT work with a trained counselor to learn how to re-frame negative thoughts into a more positive outlook.

Other tips to cope with fatigue include:

  • Eat a nutritious diet and do light exercise, like walking, every day. This can improve your mood and sleep
  • Start a journal. Write down when you had the most energy, and then schedule activities for those times
  • Use relaxation techniques, visual imagery, meditation, or spiritual practices to ease anxiety and stress
  • Attend a support group to learn how other people were able to manage fatigue after transplant
  • Talk with a trained professional, like a counselor or therapist, about your thoughts and feelings. If you also have symptoms of depression, treatment for that may also lessen fatigue

Faye recommends similar strategies for treating fatigue in children. Be sure to set realistic, age-appropriate goals and activities.

Finally, both social workers emphasize that caregivers can suffer from fatigue, too. If you’re a caregiver experiencing fatigue, seek treatment if you feel overwhelmed.

Are you a transplant patient who had fatigue after your transplant? If so, please share your insights in the comments below on what helped (and what didn’t help) you fight your fatigue.

16 Responses to “Coping with fatigue after transplant”

  1. Michael says:

    I don’t have fatigue due to a transplant but due to another issue. Without a doubt it has the largest, most negative impact on my life. I not only have to fight the fatigue but I have to fight medical providers who don’t understand my medical condition or the fatigue. My advice is still to make it known and find others who can support you through this. My fatigue is not likely to ever end in this life but I will make it by the support of others. I encourage you to find the support you need.

    • Be The Match says:

      First and foremost, we are so sorry you’ve had to deal with fatigue its negative impacts on your life. Thank you so much for sharing your advice – we agree and think finding a support system is the most important and valuable response!

      Best wishes,

      Be The Match

  2. Patti Reali says:

    I continue to have fatigue and shortness of breath 3 years after transplant due to very high ferritin levels, close to 5200. I had more than a year’s worth of bi-weekly or even weekly blood transfusions before my transplant and as a result, built up a lot of iron/ferritin in my blood. Doing twice monthly phlebotomy now. Hoping this will help over the long term

  3. Colin Heffner says:

    The most fatigue I’ve suffered and almost 3 years after transplant is battling the medical business over bills. I’m middle class and have commercial health insurance and I’m so sick of hearing that I don’t qualify for any help. At my 2 year mark I fired Adventist Health Systems for I felt they weren’t concerned about me anymore. If I could do it all over again….I wouldn’t.

    • Bob says:

      The alternative wasn’t much of an option was it?
      I think chemo brain sometimes affects our ability to think clearly. We have all faced much adversity through this process. It’s up to us to find the positives and wake up each morning thankful to still be here.
      Woke up on the right side of the dirt today. Not such a bad one!

  4. Anne Lemke says:

    My fatigue seems to come from activities that are not joyful for me. If I am driving a boat with a grand child on Lake George, I can go all day. If I’m cleaning the house, not so much!

  5. Dianne Karsten says:

    My husband had a tandem cell transplant 10 years ago and fatigue is a daily battle. There is the falling asleep at a moments notice type of fatigue and the physical my feet are so heavy to lift kind of fatigue. Some is related to pain meds to deal with his neuropathy. Some is related to low testosterone-trying to deal with that did not work .Injections ,Creams , pills it all caused him to behave like he was in a rage. Then erratic polycythemia set in and that was the end of testosterone treatments .
    We have done the diet thing , improved sleep options, he now has episodic insomnia , etc. Chemotherapy has just changed his body systems .Dr.s’ take reports and nod and offer suggestions of things we have already tried but I no longer believe that the Dr.s’ truly understand what happens to a cancer patient and some I do not believe think fatigue is a real problem.

    • Colin Heffner says:

      For me I felt my issues were not something they cared about any more. I’d address my issues with my “TEAM” LOL and they would just ignore me. Sadly even Be The Match ignores us also. Notice I got no reply with my comments above. I question everyone’s integrity in the medical business now including Be The Match.

      • Be The Match says:

        We are so sorry you feel this way Colin, and apologize for the delay in responding to the comments on this post. Dealing with bills and battling the medical business can be such a frustrating process and we’re sorry that you’ve felt like your providers aren’t concerned about you. Please feel free to reach out to our patient services coordinators at 1 (888) 999-6743 or if you have any questions about finance or would like information about additional support. Again, apologies for the delay in responding to your comment and we’re sending our best wishes your way.


        Be The Match

    • Be The Match says:

      We are so sorry to hear about your husband’s situation, Dianne. Fatigue is truly a real problem and can be a daily battle that a transplant patient must fight, on top of recovering from the process itself. It’s also frustrating when you feel that doctors are not giving the issue the respect and care that it deserves, so we’re sorry that you’ve felt this during your husband’s recovery. We’re sending our thoughts and well-wishes during this time, and hope that we can be a helpful resource for support and information.

      Best wishes,

      Be The Match

  6. Amy says:

    I am 6 years post transplant. Fatigue is a very real thing for me. Transplant is like dealing with a death, people are around you in the beginning and then desert you because you “appear” okay. Fatigue equals depression, isolation, and alienation. Your future definitely is impacted from your past.

    • Bob says:

      No one else knows what’s it’s like to go through a stem cell transplant and the whole process combined. It’s tough! My doctor’s advice when finishing the initial “induction” period was to not deviate from the program. To stay on course regardless of all of the obstacles, trying alternative methods or just giving up. Two people I met while in the hospital were those returning after taking 6 months or so “off.” Both didn’t make it.
      When you talk about people abandoning you, it’s up to us to stay strong regardless of others. They will only give so much sympathy until their spent.
      We have to be our own cheerleaders and never give up or even expect others to “carry the load.”

  7. Patricia says:

    Immediately after transplant my lifestyle changed. Once a morning person (doing yardwork at 6am) not getting out of bed before 10am became the norm. In a state of malaise ALL day I finally feel a little alive around 4pm. But too late to begin an important project. But I’m not a night person and don’t enjoy going out late. Did my donor? Was my donor a night person? NOW daytime fatigue has become extreme. I’m constantly too tired to do anything. Today again I’ve chosen to skip an event I planned to go to. (Even laid out clothes thinking that would help.) It’s 10 years since kidney transplant Retired at surgery. Oh,doctors can’t deal with what they haven’t been taught to deal with.

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