The #NephJC chat on the #Descartes workgroup statement had a thriving conversation. One of the questions that came up was about allowing one's children to donate. See Prof Rodby's question below (and follow the thread for a variety of answers).
One of the touching responses came from Susan Kjos, who has kindly expanded on her own experience from both perspectives (a potential donor and a subsequent recipient) below:
I am a third generation dialysis person, and second-generation transplant recipient. My dad spoke about a transplant when he began hemodialysis in 1990. My siblings and I offered to be a donor. My dad said 'no', my mom was going to be his donor. They were sure of this fact; long before the donor evaluation process began. My mom donated her kidney to my dad in 1992. My dad died in 2002. My mom is 87 years old and doing well. As a matter of fact, she offered me her remaining kidney.
After I began dialysis, family and friends offered to be my donor and some started donor testing. I told our son 'no' when he offered to be evaluated as a donor. After thinking this over and speaking with my husband, I felt I was disrespecting our son by ignoring his beautiful offer. I knew he would make a good decision about possible donation. I believed this was his choice. I consider that as a mother, my place is to protect my child, no matter his age, not the other way around. So, this was a difficult conclusion. I did remember however, what it felt like for my offer of donation to be turned down so quickly by my dad.
One year after I began dialysis, I received a call for a deceased donor kidney. I said yes and am now 16 months post transplant and doing well. I never had to make the final decision about a live donation. I am still overwhelmed by the generosity of my potential donors. I will admit that considering any live donor was a challenge for me. I worried about their health, happiness and expense of donation process.
So, I have been the daughter of a transplant recipient and donor as well as the parent of a potential donor for my own transplant. My advice to anyone considering a child/parent transplant is there is no right or wrong answer. I know that sounds unoriginal but we all need to do what is best for our family. I suggest you take your time, consider options, rely on your transplant center and allow potential donors to make an informed decision.
Blog post written by Susan Kjos, who describes herself as 'I am a wife, mother, daughter, sister & friend. I have CKD but it does not define me. I was blessed with a kidney transplant. My life is an incredible ride, and I am lucky to be on it.'
