A transplant delivers a cure … and a new path in life

Posted January 9th, 2017 by Be The Match and filed in Patient Stories
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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:

Shane, transplant recipient

Shane, transplant recipient

“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.

3 Responses to “A transplant delivers a cure … and a new path in life”

  1. Sherry Klumpp says:

    Hi,

    It’s been over 5 years since my transplant, and I’m still struggling with setbacks. I developed sclerosing GvHD 3 years ago. I’ve mostly overcome that. However, immunosuppression resulted in a viral respiratory illness. While hospitalized, I was given heparin because of a small embolus in my lungs that came from a central venous line. I bled into my back and right side of my pelvis which left my right leg useless. I am walking again, but not normally… Then in September, I developed lymphedema of my dominant arm and hand. I thought it was possibly due to graft vs host, but the experts say “no”. It’s a difficult and painful condition to manage. I was active, and to some extent still am, active in a support group that led to the transplant. However, I’m the only transplant patient, and the sites i’ve gone to for support are either too gruesome or too Polyanna- everything is going right… I don’t know where to turn to for support.
    Thank you
    Sherry Klumpp

    • Leah Christianson says:

      Hi Sherry,
      Thank you for sharing your story. I am wondering if it would be ok with you if one of our BMT Patient Navigators from our Patient Service Center at Be The Match reached out to you directly.
      Best Wishes,
      Leah

  2. Priscilla says:

    I can relate to Shane’s story of being a young person who is derailed due to illness. Having had cancer twice and a transplant 6 years ago now, I sometimes feel like my entire adult life has been one big cancer recovery story. So I also empathize with Sherry. It’s a very long road of recovery, healing and self-acceptance after a transplant. What amazes me is the body’s inceredible ability to heal. Be patient and kind to yourself Sherry, because you will stabilize and get better but it takes time. Seek out support online, or in your community, it has really helped me a lot. Take care.

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