Social Media Presence

"The List"

One of the most frequently asked questions was always about "The List," people thought that since we had been on the list for 3 years, that our time automatically had to be coming soon. I never quite knew how to explain how the list worked, until I read the following.

Contrary to popular belief, waiting on the list for a transplant is not like taking a number at the deli counter and waiting for your turn to order. In some respects, even the word "list" is misleading; the list is really a giant pool of patients. There is no ranking or patient order until there is a donor, because each donor's blood type, size and genetic characteristics are different. Therefore, when a donor is entered into the national computer system, the patients that match that donor, and therefore the "list," is different each time.  - organtransplants.org

I like how they took the time to explain just how "The List" works, because even as a caregiver it was hard to explain and understand it. I really wish I would have seen this before, as it would have definitely relieved some of the anxiety that I had leading up to the transplant.

Welcome

My husband recently received a kidney transplant after being on the waiting list for 3 years. It changed our lives in an instant. All the preparing we had done prior to transplant didn't seem to matter anymore, because nothing can prepare you for what you are going to feel.

Before his transplant, I spent many hours looking for information on what was going to happen after transplant. To be honest all I found was the textbook answers that are given to you from the transplant centers. I didn't want textbook though, I wanted real world experience from people who had gone through it. I wanted to be able to cry with happy tears and have people around me who understood what I was going through and what a relief it was. I wanted people who had been in my shoes and understood all the emotions I was going through. I wanted honesty on what to really expect. Everything I found seemed scripted.

I want to use this to walk people through the emotions, the ups and downs, the process in real time about what you go through, from the moment you get that phone call till you are home recovering. From the many follow up appointments to the other surgeries needed, and the home health aids that are at your house constantly. I want people to understand the whole experience from someone who is going through it. If you have questions, ask them. I would be happy to answer anything you have questions on! I look forward to walking you through our process, with all of its ups and downs...

Jennifer

                                                (Jennifer, Eli (Age 3), and Craig)