Is life after transplant what you thought it would be?

Posted May 6th, 2014 by admin and filed in News, Patient Stories

“I had lots of emotional and physical ups and downs—but it was a relief to know that others felt the same.”  –Transplant recipient

If you’ve ever felt alone or like nobody understands what you’ve been through or have experienced changes in your roles, relationships, or physical abilities after transplant, you’re not alone. Both patients and caregivers often go through emotional and physical ups and downs that may impact quality of life (overall well being). Whether you’re experiencing the good or the not-so-good after transplant, have you thought about talking with someone who’s been through it? Ed knows firsthand how much it can help.

Ed’s story

edEd had his ups and downs after having a transplant in 2011 for Acute myelogenous leukemia (AML).“Going through transplant and recovery can be tough,” he said. While doctors prepared him for what to expect, “It would have been helpful for me to talk with someone who had been through transplant, to learn more about it, to better prepare myself, to ask questions like “has this ever happened to you? What did you do?”

“It can be difficult to absorb and fully comprehend all the information you’re getting from your doctors,” Ed added, “Talking to someone who’s been through it is less stressful. It’s a conversation with plenty of opportunities to ask additional questions and get clarification.”

Today, Ed is a Peer Connect volunteer—someone transplant recipients and caregivers can turn to for advice or as a shoulder to lean on. “Talking with someone who has been through it can be really helpful. I think it’s important for patients and caregivers to know it’s alright to be afraid, scared and apprehensive about their situation, and that the emotions they are feeling are normal.”

The Peer Connect Program can put you in touch with trained volunteers—who are transplant recipients and caregivers—who are there to listen, answer your questions and share their own transplant experiences. “The program didn’t exist at the time I had my transplant, and I really wish it had,” said Ed.

Ed’s wife and caregiver Kate is also involved in the Peer Connect Program. “Because Ed and I lived near our transplant center, we were discharged to home just two weeks after the transplant, and made daily trips to the clinic,” Kate said, “Because there was no Peer Connect Program, we didn’t have the opportunity to talk to any other patients or caregivers until Ed was feeling well enough to attend some support groups.”

Ed and Kate found it helpful to hear what other patients and caregivers were experiencing, and what was normal. They also learned that they weren’t alone—and it was different than hearing it from a doctor.

Get practical advice and emotional support

Transplant patients and caregivers use the Peer Connect Program to find out how others have dealt with post-transplant issues like fatigue (tiredness), not feeling well, poor appetite, food not tasting good, and other side effects. They can also get encouragement and emotional support to help cope with quality of life changes. And while your medical team will always be your first source of information, talking to a peer can support you in other ways.

“Depending on individual situations after transplant, people may have continuing transplant-related issues and complications,” said Ed. “This can be hard emotionally. People want to know what it’s like, what recovery is like, what helped you and your family. Having gone through it myself, I can fully empathize.”

Peer volunteers benefit, too

marty“We were about a year after transplant when the Peer Connect Program began, and we were among the first to volunteer,” said Kate. “We really wanted to be able to offer that kind of support to others. If you’ll excuse the cliché, we feel honored to be able to walk along side other patients during their transplant journey.”

Fellow Peer Connect volunteer and transplant recipient Marty agrees. “I volunteered for the program because I like helping others. I understand the need to speak with someone who has gone through the experience. I feel a unique satisfaction in being able to do something that few people can do. It’s like throwing a life preserver to someone in open water. ”

Today, Ed describes his life as pretty much back to normal. “I’m able do most of the things I did before I was sick, and my medical issues now tend to be those of an active 70-year-old male. I think sharing my experience with others who are in an emotionally stressful situation can positively benefit them.”

Interested in Peer Connect?

Want to talk with someone who’s been there? Or are you interested in becoming a peer volunteer?

Learn more or email patientinfo@nmdp.org

7 Responses to “Is life after transplant what you thought it would be?”

  1. Lisa says:

    It’s been three and a half years since my transplant and I still have some complications. Just wondering when it will all go back to normal. For me it’s been 2 steps forward, 1 step back the whole time.

    • Ted Avelallemant says:

      Hi Lisa. I can tell you with certainty that the moment you accept that your life may not ever get back to a pre-transplant “normal” and that you live every day in the “new normal”, wherever that may be, the better your life will be overall.

  2. Karen Etterle says:

    I’m almost 4 years out and ive learned there is a new normal to life,
    Yes ups and downs, but I do when I can. This week I went with a friend on a day trip to the outlet mall 3 hours away, We only went to a few stores but she knew that would be me. We had fun, but the next day I was really tired , stayed in the recliner all day.

  3. Brian says:

    I am a very positive person, but I know many people reply with different stories, yet we only hear of the happy ones usually.
    Parents give highly commendable comments because their child made it, but if you ask truthfully they forget the tough times in the procedure. As Ed said in this article, medical staff gave yo be mire up front with patients. I went in not knowing much at 57, but thankfully I had the greatest nurses and staff. Nurses were great when something went off the track a little and drs. Were good after the fact. People need more follow up with social workers(staff who know about transplants).
    I personally do not like the fact that patients get out early, with counts still low. In hospital very strict re washing masking etc, yet now they let you go into public as you gave to wait in drs waiting rooms, wear gloves as touching more handles, drs clothing as they gave been dealing with everything in hospital so what are they carrying.
    I am truly thankful for my donor, whom I have met, and we correspond all the time. Which your company knows as I have informed them
    I also informed you that if not mistaken it was 25 th anniversary since Transplant April 29 in US with donor from Canada.
    Public needs to know thus so they can see if us not something new. Sure it us still a hard process but people should know about progress.
    I could go on but no yes as this will be deep sixed (thrown away).
    No permission given to re-use this in any way!! In no way do I want my name out there but the truth has to be told.

  4. admin says:

    Thank you for taking time to comment and tell us about your experience. You are all proof that the transplant experience can be different for everyone.

    We hope that you’ll continue to connect with and get support from other recipients throughout your recovery. You may find it helpful to:

    Follow our Be The Match Patients Connect Facebook page to share tips with other patients and caregivers recovering from transplant at http://www.Facebook.com/BeTheMatchPatient

    Talk with other recipients and learn how they coped with a long recovery through our Peer Connect program: http://bethematch.org/For-Patients-and-Families/Support-and-resources/One-on-one-patient-support/Talk-with-a-peer/

    Join a support group at your local hospital or transplant center to get face to face support from other patients and caregivers.

  5. Traci says:

    My diagnosis was in 2010. My transplant from an unrelated donor was in 2011. Graft Versus Host Disease set in right away. I had no idea this was going to be such a horrible journey. Here it is, 3 years later, I am in remission but still fighting. No one understands. They think I should be well now. The side effects from the transplant have been awful. GVHD hit me hard. You don’t hear much publicly about GVHD. I read blogs of other survivors and belong to different internet clubs. When I hear of great successes, it gives me hope. No one can tell you ahead of time what it is going to be like because everyone is different. I don’t blame anyone. I just wish I had known how bad it was going to get.

  6. Joanne Newman says:

    Hi

    I’m about 1 1/2 years out from a full autologous and a mini-allogeneic SCT for Follicular AND DLBCL. I was symptomless until 6 months out when we started to remove the immunosuppressants. cGVHD set in slowly in my mouth and eyes (dryness mostly). The eyes became an issue as we approached springtime and pollen…and on a trip where there was pollution in the air. Still trying to resolve that to a livable degree. The mouth isn’t as bad but the saliva is limited, making it hard to eat and swallow. But these limitations are small compared to the issues that might have been.

    I have not been in contact with my donor and would love to thank him for his wonderful gift to me. I’ll keep trying to reach out and hopefully he will allow me to send him a virtual hug from myself and all my extended family and friends…you ARE precious in my eyes!!!

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