What’s “normal” after BMT?

Posted March 8th, 2019 by Be The Match and filed in News
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You may have heard the phrase, “Tell your doctor if you notice anything new or unusual after transplant.” Well, what do you do if everything feels new or unusual? For many people, it’s hard to know what could be a problem and what’s part of the “new normal.” Here are 5 tips to help you adjust to life after BMT:

Brenna, MPH, RN, ONN-CG, BMT Patient Navigator

1. Tell your doctor about new symptoms

According to Brenna O’Brien, MPH, RN, ONN-CG, BMT Patient Navigator in our Patient Support Center, “It’s better to be on the safe side and share any new symptoms with your doctor, even if everything feels new and unusual.” She adds, “If your doctor says your symptoms are part of your “new normal,” they can offer you ways to manage them that maybe you didn’t think of before.”

It’s been 3 years since Gary’s second transplant, and he’s adjusted to his life after transplant over time. But in those days and weeks shortly after transplant, “normal” was unclear and always changing, especially when he had new symptoms. “Whenever I went in for a checkup, if there was anything my transplant team didn’t like, they put me in the hospital,” says Gary. “At the time it was overwhelming, but I appreciate it now because it kept me alive.”

To make it easier to keep track of your symptoms, Brenna recommends writing them down. “Remember, it’s your job to report any changes. Keeping a log of how you’re feeling can help you do that.”

2. Find ways to adapt

Gary’s recovery wasn’t always smooth. He was hospitalized 13 times after his second transplant. He had a variety of complications, including graft-versus-host disease (GVHD), pneumonia and the flu. He realized his life after transplant didn’t look like his life before transplant.

So, Gary adapted his routine to fit his current abilities. “I have neuropathy, which led to falls and stumbles. Realizing I didn’t have the balance, coordination or energy to walk, I got an exercise bike and started using it every day,” he says. “That was my substitute.”

He also has found other ways to still do things he enjoys. “I really used to enjoy going to sporting events, but I’m uncomfortable with the big crowds and stairs,” he says. “Honestly, going to those events aren’t even worth the hassle when I can watch sports comfortably at home, and I can even see more of the game.” His family has adapted, too. They have family celebrations at home instead of going out. And, they know that he may need to take naps more often.

Gary’s advice is to “focus on the things you can do, not on the things you can no longer do.” This mindset may help you adapt to where you are today. And, he adds, “set some reasonable short-term goals to focus on.” Seeing your progress can boost your spirit as you look towards the future.

3. Reconnect with your body

Your body has been through a lot, and reconnecting may be a step towards adjusting to the changes in your body after transplant. For some people, it can be hard to trust their body again. Gary, however, says he’s in awe of his body’s strength. “I’m amazed that my body is strong enough to fight through 13 hospitalizations,” he reflects. And compared to life before transplant, “I listen to my body a lot more,” he adds.

Brenna says that acknowledging the changes and losses you’ve experienced can help you reconnect with your body and understand its limitations and its resilience, too. “It’s a process. Your relationship with your body can change for better or for worse after transplant. Take stock of the changes, then focus on all of the things you’ve overcome,” she says.

4. Keep expectations real

Gary says, “Everyone is going to recover at their own pace.” Base your expectations on where you are now with your recovery, and what you can do.

It’s not uncommon for other people, such as your caregiver, to have expectations for your recovery after transplant. Brenna acknowledges that this can be frustrating. “It’s understandable,” she says, “that your caregiver may struggle as you adapt to your new normal.”

Their expectations for you may be well-intentioned. It’s hard for them to see you go through so much. Work together to create reasonable expectations for your recovery. Brenna adds, “You’re on the same team, and you want the same things. Start by agreeing on that and go from there.”

5. Take control where you can

When you’re adapting to the changes in your body after transplant, think about the things you can control. Brenna suggests that a follow-up or survivorship care plan can help you gain more control. “It’s important for your health, but it can also reduce anxiety of the unknown as you move forward. It can be helpful physically and mentally.”

Gary took control of his mindset. He made a point to focus on one day at a time. “Don’t get too far ahead of yourself,” he says. “Live day-to-day while working on getting mentally, physically and spiritually stronger. While you’re doing that, hope that things will get better. Hope for more strength. There’s always hope.”

Support and resources for you

The Be The Match Patient Support Center offers free support and resources to help you find and adapt to your new normal after transplant.

5 Responses to “What’s “normal” after BMT?”

  1. John Petit says:

    Thank you Gary ! That is best advice I have had so far , I am 2 1/2 years post transplant and going well but get frustrated with setbacks and expecting too much out of myself . Too hear your attitude about your situation is very inspiring ! Thank you 🙏

  2. Wendy Gorrell says:

    Really, really good advice and tips from Gary. Thanks!

  3. Anne Lemke says:

    Excellent advice! I’m 4.5 yrs post transplant and the roller-coaster ride can be very frustrating. Keep on keeping on, Gary.

  4. Patty Sofranac says:

    Gary,
    I’m 7 years post transplant this May. I enjoyed reading your journal here and can definitely relate to all… thank you for the reminders of how incredible strong we are! Mindset is key as well as physical therapy daily! Life changing journey for sure, and that after 7 years most even the closest of family and friends forget what we’ve been through! It’s good to read your post and feel the connection…

    Keep being you! And enjoy today!

    Patty from California

  5. Wally says:

    Gary,
    Keep going! Do not give up!

    I am 5 years post SCT. 2-25-14.

    I was hospitalized 4 times in the first 16 months after
    my allogenic transplant from a matched unrelated donor.
    2 pneumonia’s, 1 infection and 1 virus.

    I have neuropathy in my feet, lost most of my sense
    of smell.

    I also lost Chronic Myeloid Leukemia, and that’s the best news
    of all!

    I thank God every day for my good health and
    strength.
    I am 67 years old, and after 10 years of CML,
    I wasn’t sure if I would be here.

    My new normal is a gift. I don’t focus on the negatives.

    Wally

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