Sarah Needs a Kidney

So there’s this thing many people don’t know about transplant patients—they have really shitty immune systems. In order for a transplant patient to accept a transplanted organ, her propensity to reject any foreign body must be “suppressed.” This is done in two ways: tissue typing, which is a blood test that measures substances on the surface of body cells and tissues, called antigens; and through taking immunosuppressive drugs, which, much like they sound, inhibit or prevent the activity of the immune system.

In my sister’s case, her immune system is as bad as it can get. She’s been on and off immunosuppressive drugs — some good, some bad — her whole life, and she’s dangerously susceptible to infections that you wouldn’t even blink an eye at. The simplest of scratches can make things complicated.

A couple of days ago, our family dog Charlie scratched her arm, and as it started to heal over, Sarah began to pick at the scab. Never a good idea. The more she picked, the more it got infected, and seeing as how this is the arm her dialysis catheter is implanted in, it’s probably not something she should be picking at, EVER, and that brings us to this morning.

After already putting in her time at dialysis, Sarah (finally) marched her butt over to urgent care for her favorite part of all of this: hours of waiting. Thankfully, it was just a minor infection and only a round of antibiotics was needed. We got lucky this time. And I’ve been there a lot of times.

I can remember as a kid getting picked up from school by my mom countless times only to drive right over to urgent care where my sister had been waiting, all day, and where we would continue to wait, into the night, just to see if the doctors could even begin to figure out what was wrong with her. So often it was just a big guessing game. A swollen foot here, severe chest pains there, a severe cramp in her side….And all too often we were sent home with no answers. It’s weird, but I kinda grew up in these hospital waiting rooms, trying to figure out how to amuse myself, and my sister. How to keep things light. Reading over this post, it’s hard not to feel the gravity of it all. Of where we’ve been, and where, I hope, we’re going. The doctors might not have the answers — it might be some stranger somewhere that helps us figure this thing out. Either way, I know in my heart that I’ll have to return to a few more waiting rooms, along the way.

With the news that my brother is most likely out of the running to be an organ donor based on his abnormal test results, the search for a viable donor has now shifted to me. I’ve already been through the preliminary testing process, enough to know that I’m not a perfect match to my sister, but the testing never went beyond that. The doctors wanted to try other options before they circled back. But now that we’re here again, things are going to be different this go around. We’re going to get Sarah her new kidney.

So with me starting the testing process again, I thought I should finally get a good understanding of all that goes into it, so that when people ask me, “So what exactly is the process to become an organ donor?” I don’t just respond with, “Lots of tests.” I can surely do better than that :)

So here’s a little overview of all that goes into testing to become a living kidney donor. I’m sure every patient’s process is a bit different, so if you have anything to add, please do.

Living Donor Process
-It can take up to six months to take care of all the paperwork and back-end stuff before you donate. Patience is good with this kind of stuff.

-You start with an initial interview. This consists of establishing communication with the transplant center you want to work with, filling out paperwork (with your basic info like height, weight & medical history), and then you wait. Like I said, there is going to be a lot of this.

-Then you start your first round of medical testing. This determines that you’re healthy enough to donate & have a kidney that is suitable for transplantation.
A sample of some of the tests needed (info gathered from UCLA Transplantation Services):
• Pregnancy test for pre-menopausal female donors
• Blood tests to determine overall health and prior exposure to infectious diseases
• Urine tests to evaluate kidney function
• Blood pressure readings to rule out high blood pressure
• Electrocardiogram (EKG)
• Chest X-ray
• Pap smear

-If the tests come back OK indicating you’re healthy, a nephrologist (a physician who deals specifically with the kidneys) is then given your case for evaluation. At this point, you will most likely undergo a physical, too.

-A evaluation with the transplant psychiatrist is next, which ensures that you understand the implications of your decision and are fully comfortable with your decision to donate. Each case is different and requires so much thought, so I find this as an incredibly important part of the donation process.

-A CTU test is done, which gives the transplant surgeon a nice picture of the structure of your kidneys. I like to think of it as a fancy schmancy ultrasound. The surgeon uses these images to decide which kidney they’ll use for donation.

If you’re lucky enough to have made it this far, then you get to have the wonderful discussions about scheduling the surgery. As for me, I’m still waiting to hear back from the transplant hospital after my initial paperwork, so I have a bit of time.

To learn more about becoming a living donor, visit the National Kidney Foundation’s Living Donor Council.

Today Sarah spent the day visiting a new transplant hospital she hopes will accept her as a new patient. If the advisory board approves her, it’s a big step in making progress toward getting my sister healthy again—something I think we’re all more than ready to have happen.

In order to be “approved for treatment,” Sarah has to go through a number of tests to make sure she is healthy enough to withstand another transplant. (As healthy as you could be after two failed attempts, right?) These tests included a series of interviews with the transplant surgeon who would take care of her through the process, lots of poking and prodding, endless amounts of paperwork and some harsh realities about Sarah’s chances of accepting a new kidney.

The move to a new hospital would be a big step for our family for a number of reasons, the biggest being that Sarah has been going to the same hospital since she was about 5 years old. I grew up in this hospital right along side my sister. I can still taste the sweetness of the lollipops the nurses would give me when I would tag along for her weekly check-ups. It was at this hospital that I learned to understand the meaning of life and death, as I sat in waiting rooms year after year watching family members go through the same things we were going through—often times not as lucky as we were. I would peer into the rooms of other patients hoping that they would never have to spend as many holidays and birthdays within these walls as we had. This hospital was truly like our second home.

Yet unfortunately with this comfort came an inability to realize the faults in our home. The doctors weren’t offering the best guidance during the times we truly needed it. The procedures weren’t the greatest. And the urgency we were met with when Sarah was a child was gone as soon as she turned 18. But Sarah continued to stay because it was comfortable and because it was easy. It shouldn’t be easy.

So I started looking at new options, dissecting the data available on every transplant hospital in the U.S., city by city, organ by organ. I had my list of favorite hospitals and even tossed around the idea of Sarah coming to Chicago for treatment, but ultimately my family settled on a hospital back in California.

If this new transplant center works out, Sarah is finally going to get what she deserves—hope for a better life.

My family is optimistic about the visit and is excited about the chance to finally get Sarah the attention she deserves. If everything goes through as planned, things aren’t going to be easy. The new hospital is about a two-hour drive from my parent’s home and the treatment she’ll be receiving offers no real promises. It is like most things in science, experimental.