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CAR-T Cell Therapy: Introduce yourself and connect with others
Bone Marrow Transplant (BMT) & CAR-T Cell Therapy | Last Active: Nov 9 9:21am | Replies (224)Comment receiving replies
Hello all,
My name is Krista, and my husband Ryan has had his T-cells harvested, awaiting infusion until pancreatitis/liver function improves. We are approaching the one-year mark since diagnosis, and it seems as though there is always something unexpected around the corner.
We have 2 young kids at home, and a number of friends who will be sharing caregiving duties for Ryan during treatment. We have learned through other hospitalizations that the kids need me more than he does! We also have grandparents and others who will stay with them when I need/want to be with Ryan.
I’m particularly interested in hearing from anyone with children who has done CAR-T, as well as those who have had multiple caregivers. Our plan is to stay at the Gift of Life Transplant House. Can anyone share from experience there?
Replies to "Hello all, My name is Krista, and my husband Ryan has had his T-cells harvested, awaiting..."
@kjmahoney
Hello I am Jerrydrennan
I had a liver transplant 7mths ago. After my transplant I stayed at the GOL house for my recovery . My wife is disabled and not a le to stay at the GOL. My brothers helped alo g with my niece .
Changing caregivers is not hard . Need to get registered and they can take turns. Our daughter took care my wife/mom.
They where able to visit everyday. We had dinner at the GOL house together and enjoyed the game room upstairs. If there is any question that I can help with please ask. Also @jodeej is very helpful I follow her lead with her husband.
Prayers
God Bless
Jerry Drennan
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@kjmahoney
Hi Krista, I am a liver and kidney transplant recipient. My husband and I lived in the GOL ( https://gift-of-life.org/ ) for 11 weeks in the spring of 2009. We were 800 miles from our home, and it became our home-away-from home during that stressful time of our lives. At first the idea of a 'group' house was uncomfortable to me because I treasure my privacy. I soon learned that the GOL provided me the privacy that I desired, and also the companionship and support from patients and caregivers who were undergoing similar journeys. It is convenient to the Mayo Clinic because there is a free shuttle that picks up and drops off at the door! My husband (retired) was my full time caregiver, but I did meet others who had several family members/friends who rotated the responsibility. All guests are required to take a tour of the House and to agree to the terms for staying there.
I highly recommend the Gift of Life House!