Annabelle: I have systemic lupus. I was diagnosed when I was 23. Lupus is an autoimmune disorder where your body's immune system attacks your own body and for me it was my kidneys. So it was lupus nephritis and just over time my kidneys started to fail.
I was tired all the time, fatigued. I felt nauseated. I had no appetite and I started to have edema and just bloat in my legs, my ankles, my face to the point where my quality of life was awful. I looked terrible. I couldn't even look at myself in the mirror because I wasn't me anymore. I mean, on the outside I'm here. I'm working. I have my child, my family, my husband, but inside I just felt terrible.
Dr. Schaffer: It can be caused by many different things. It can be caused by lupus, as with Annabelle, but the more common causes are some of the more common conditions that people suffer from, like high blood pressure, or hypertension, diabetes. Those are currently far and away the two most common medical conditions that lead to someone eventually developing kidney disease.
There are other things that people can be born with, like polycystic kidney disease and some other less common conditions. But it's a wide variety of health problems that eventually can target the kidneys and cause this same end result of the failing organ.
Robert: As Annabelle mentioned earlier, her appearance had changed so people were asking what was going on and obviously immediate family knew what was happening so we just announced to our friends and family that were at [a delayed 50th birthday party for her] what she was going through and that she was on dialysis at that point. We told them she was going to need a kidney. A couple of close friends of ours came up and said, "We'd love to see if we can help," and that's when I told them, "Well I'm secretly going through a process so hold off. We may need you, but hold off."
Later when I heard I was a match, it was quite exciting.
Dr. Schaffer: Almost 115,000 people were waiting for an organ transplant in the United States. The vast majority of them are waiting for a kidney, over 100,000 waiting for a kidney right now.
On any given year, we will see approximately 15,000 to 16,000 donor kidneys come from deceased donors and about 5,000 to 6,000 kidneys are recovered from living donors.
Dr. Schaffer: A living donation for the person waiting is really a fantastic option because it allows them to essentially step out of line from that long list of people waiting for a deceased donor kidney and move forward much more quickly with getting transplanted.
Across the country the waiting time for a kidney for someone who's on the waitlist can vary anywhere from about three years in some parts of the country to as much as 12 years in other parts of the country. A living donation really takes that waiting time out of the equation. It doesn't mean that they can't also continue to wait for a deceased donor kidney. We give someone every option that's possible. A living donation allows them to get transplanted sooner as in Annabelle's case, really after only a brief time on dialysis, and in some cases even before they need to start dialysis. In doing so, it allows them to be much healthier when they get the transplant, and it allows us to plan everything ahead of time instead of those middle-of-the-night phone calls. It's all scheduled in advance. And if somebody's feeling under-the-weather, you just reschedule it for another day, but you don't miss out on that opportunity.
Dr. Schaffer: Living donors go through an elaborate screening process up front, as well as a testing process that gets more and more advanced as it moves along. The very beginning steps are just making sure someone doesn't have major health issues, like diabetes that can cause kidney problems. If they meet that initial screening process, we gradually walk them through an escalated process after that.
Dr. Schaffer: You don't, actually. I tell donors when they come in to visit with me that most people have this vision that if I go through the tests there are going to be 10 check boxes and if I tick all the boxes I'm good to go. And obviously no one is that way.
There are certainly some donors who are in perfect health and have perfect kidney function and there are others that are not healthy enough and really should not donate. But in between is all the rest of us. So you don't have to be in perfect health. You just have to be healthy enough to safely give an organ and not have that donation dramatically change your future health.
Dr. Schaffer: I would say from the doctor's perspective, we have this mantra of do no harm. So how do you justify performing an operation on someone to remove a perfectly healthy organ when they otherwise wouldn't need to have that? The balance is that they have the benefit of doing something fantastic for somebody. Many times it's actually changing your own quality of life because you're improving the health of your family and your friends. But just that feeling of having done something good for somebody is really what drives this process for us.
Dr. Schaffer: Any time we remove an organ that we're going to transplant, we want to limit the amount of time that that organ is outside of the body and not receiving oxygen and nutrients. The way we like to do it is we'll start the donor's operation as we did with Robert. As the donor surgeon, I begin the surgery. I make sure everything is as expected, that there are no surprises, that everything we thought we were going to see based upon the scans is in fact what we find. And then, we start the process of freeing the kidney up and getting it ready to be removed.
Once I've decided that this kidney is good and that we'll be able to use it for the transplant, then we give the okay to the recipient's team, and they begin the operation, like in Annabelle's case. So they're simultaneous, but slightly staggered procedures. Once I knew that Annabelle was ready to receive the kidney, then we took it out and made the steps to move forward with the transplant.
Dr. Schaffer: The surgery for both the donor and the recipient is usually about two to three hours from start to finish. The donor usually stays in the hospital less than 48 hours.
I like to tell people two to three hours of surgery, two to three days in the hospital and most people are back to doing their everyday stuff within about two to three weeks.
Robert: She's doing great. We became empty-nesters in 2010. But because my dad was living with us after my mom passed and he was having health issues, it took a while. It's only been about a year and a half that we've enjoyed being empty-nesters. It took four and a half years but we're there now.
Annabelle: For me, it means living from now on our best life possible without any worries of health issues. Health is always a concern, but just living as normal life as possible without any huge burdens or worries is just wonderful.
Dr. Schaffer: Anyone can register to be a deceased organ donor. When we pass away, we can indicate that we want our organs to be used for transplant. That can be done online. That can be done at the Department of Motor Vehicles. It's also best accomplished by telling your friends and family that this is something you want to do, so that should that day eventually come, they know what your wishes are and can help make that process happen.
For a living donor, it helps if you know someone that needs a transplant, but that's not a requirement by any means. It's about taking the time to think, what impact will donation have on my day-to-day life? What do I want to gain by doing this? And, am I ready to take on that big of a challenge? It is a little bit more than going and donating blood.
Dr. Schaffer: The first step is reaching out to Scripps Center for Organ Transplant. We immediately connect you to part of the living donor team. They do an initial screening questionnaire and then send you information that you can start to look through. It provides some basic understanding of what it means to be a donor. At the same time, we start getting information about you from your primary care doctor, health records and very quickly can begin the screening and testing process.
Annabelle: No, not really. I basically just do whatever I want.
Dr. Schaffer: For donors, once they've recovered from the operation, we like to think they're back to their usual health. They do have to recognize that they only have one kidney and so any activities that might put your kidneys normally at risk, you just have to be kind of smart about how you take care of yourself. But in general, we want people to continue living their normal, healthy life that allowed them to get to the point of being a living donor.
I've had donors who liked to do a lot of free rock climbing. I have a former living donor who likes to race his motorcycle. We're all adults. We're going to do what we're going to do. But as long as people understand that you only have that one kidney and you need to protect it.
For the recipient, this is really all about giving them back as normal a life as possible. And that really, truly means every day activities. Once they've recovered, there is no reason why they can't swim, surf. There have been kidney transplant recipients who've played in the NBA and other professional sports, maybe not boxing or football or rugby. But absolutely transplant is about giving back someone their life.