We arrived at our meeting downtown yesterday. They said, “CONGRATULATIONS.” Then they handed us a folder that was filled with some of the most scary information we have read so far.
First things first. The CONGRATULATIONS part. The document stated:
- You have met all the criteria required to be placed on the kidney transplant list.
- After this class you will be placed on the transplant list in 1-2 weeks.
- We can begin to work up donors (one at a time). Woo Hoo!!!
- A letter will be sent to you and your physicians informing of your activation status.
- Please remember we need to be able to contact you at all times.
Now the scary part. Wow. Whew. Okay. Lots and I mean LOTS of meds after the transplant. 30-50 pills a day. Not forever — but for quite a while. Then he might get down to like 10-20 a day for the life of the new kidney. Also, we learned that the timing of the meds is super important. Some of them must be taken EXACTLY 12 hours apart. “Set an alarm on your phone” exact. If you are off by five minutes – your body will start attacking your brand new kidney for those 5 minutes. Very bad scene.
Next up… The drugs you MUST take so your body doesn’t attack your new kidney. We are quickly learning that everything wonderful also has a not so wonderful part. Although the drugs keep your body from attacking — they have numerous and quite awful downsides. While they were going over all of the very scary, awful stuff – all I could think about was when we were sitting in our hospital class while we were pregnant with Abby. They wanted to prepare us for all of the what ifs. We got to see all of the scary tools. We got to learn many possible scenarios. The day we delivered Abby we faced a couple of those scenarios. And I was calm. When they told us what was going on — I remembered our class. When they pulled out the special tools — I remembered our class. It was scary learning about it. But it was so helpful when the time came. We knew what we could expect. We weren’t terrified of the unknown. We did our best to roll with the punches. I’m praying that is what our folder was filled with. All of the what ifs. We know what can happen. We know what the transplant team will do to help us. We know how we will be monitored.
We learned about the different types of deceased donors. We learned about the new UNOS rules. We learned about the call that will someday come to tell us we have a potential kidney. I’m praying we don’t have to wait for that call. I’m praying to find a living donor out there. And that takes me to the last thing we learned about…
Most everyone has two kidneys. We have learned that some people have three. Who knew?? Anyway, most of us have two. If we are healthy, we only need one. That’s it. Forever. Most people can live with one kidney – with no problems – for the rest of their very long lives. We have chosen Presbyterian St. Luke’s to be our transplant hospital. Kathryn O’Dea, RN, 720-754-2164 is the Living Donor Coordinator at PSL. If you would like to know if you are a possible match for Jamey, call Kathryn.
Jamey is type O blood. Yes, the universal donor. It is true that he can give blood to anyone. Unfortunately, he can only receive a kidney from another type O person. If you are type O and want to call Kathryn it is 100% anonymous to us. The only information we will be given is that someone has called Kathryn on our behalf. The first thing she will do is a telephone health screen. If the donor has health insurance and is healthy enough to donate, she will request a blood type compatibility test. If the donor is compatible and willing to proceed, she will schedule the medical testing needed for the donor evaluation.
The living donor evaluation is very thorough. They want to make sure that the donor is a perfect picture of health. They won’t take a kidney from someone that might possibly need it in the future. A potential donor will have to go through most of the same tests Jamey went through to be on the transplant list. Some tests might include an EKG and chest x-ray as well as lab and diagnostic tests specific to the donor’s kidney function and anatomy. There will also be cancer screening tests. Donors will be scheduled to meet with the Nephrology Physician’s Assistant and donor social worker for additional medical and psychosocial evaluation. And finally, the last step is getting approval to donate. The donor must be approved by the Transplant Selection Committee in order to donate to us.
I know I mentioned insurance above. You must have insurance — but you won’t be paying for anything. PSL pays for your testing. If you become our donor OUR insurance takes over for the testing and procedure. We legally cannot pay anyone for a kidney. But we understand that our insurance takes care of your medical expenses. Oh! One more thing! The donor procedure is laparoscopic. How crazy is that?!?!
We encourage you to call. Even if you just want to know more. If you think this might be something you could possibly do – please call Kathryn O’Dea, RN, 720-754-2164.