Nope, nope, and NOPE. I felt like i got pushed to an island to figure all out by myself. My social worker gave referrals to transplant centers and they reached out to do transplant evals but i wasn’t on the list for almost the whole first year on dialysis because things were just not communicated to me and i was overwhelmed trying to keep calling all of the people on the transplant team and my dialysis team. I got very little support.
I have to give credit to the medical Director, who visited once a month while I was on dialysis in the center… He encouraged me to go back to be a evaluated to get listed… I had to lose a large amount of weight to qualify… I did all of the legwork research and all that stuff before I got to Dialysis… so there really wasn’t any education in the dialysis center. But I was very communicative about my situation, and appreciated the encouragement.
I had done home dialysis, so for me the doctors had given me the referrals and they would call the coordinators at the transplant center in advance and tell them my situation. During the evaluation stage, I was given plenty of instructions on how to sign up including classes, quiz, and an orientation.
I initially declined my social worker request on getting on the transplant list. After four years of dialysis. I finally signed up; my initial transplant center was in another state 6 hours' drive time. They provided information and checked the list of items that I had to complete. I finally got on the list, only to be suspended for six months shortly after due to a medical procedure.
I continued with them, then my local transplantation center suggested that I sign with them. They had timelines for labs, exams, etc. Along with classes and reading material which educated me on expectations of the center and what to expect. I was fortunate how helpful they were. It made the waiting game, along with the notification calls and false hopes to be bearable for myself, such as arriving at the hospital, receiving final tests only to be turned away since the kidney was not transplantable or due to another issue.
Throughout both dialysis and finally a transplant, a lot of the education, scheduling etc, fell on my shoulders. I'm not three and half years post transplant.
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Nope, nope, and NOPE. I felt like i got pushed to an island to figure all out by myself. My social worker gave referrals to transplant centers and they reached out to do transplant evals but i wasn’t on the list for almost the whole first year on dialysis because things were just not communicated to me and i was overwhelmed trying to keep calling all of the people on the transplant team and my dialysis team. I got very little support.
I have to give credit to the medical Director, who visited once a month while I was on dialysis in the center… He encouraged me to go back to be a evaluated to get listed… I had to lose a large amount of weight to qualify… I did all of the legwork research and all that stuff before I got to Dialysis… so there really wasn’t any education in the dialysis center. But I was very communicative about my situation, and appreciated the encouragement.
I had done home dialysis, so for me the doctors had given me the referrals and they would call the coordinators at the transplant center in advance and tell them my situation. During the evaluation stage, I was given plenty of instructions on how to sign up including classes, quiz, and an orientation.
I initially declined my social worker request on getting on the transplant list. After four years of dialysis. I finally signed up; my initial transplant center was in another state 6 hours' drive time. They provided information and checked the list of items that I had to complete. I finally got on the list, only to be suspended for six months shortly after due to a medical procedure.
I continued with them, then my local transplantation center suggested that I sign with them. They had timelines for labs, exams, etc. Along with classes and reading material which educated me on expectations of the center and what to expect. I was fortunate how helpful they were. It made the waiting game, along with the notification calls and false hopes to be bearable for myself, such as arriving at the hospital, receiving final tests only to be turned away since the kidney was not transplantable or due to another issue.
Throughout both dialysis and finally a transplant, a lot of the education, scheduling etc, fell on my shoulders. I'm not three and half years post transplant.