Friday June 19th was the day of the Transplant Committee meeting. I asked the donor coordinator how many of the cases that made it to the committee meeting were approved for surgery. She said only about 50%. If they didn't approve me it would be because they thought it would be dangerous for me to go through surgery, not because I had said or done something wrong. Still...I was worried. I wanted to give this piece of me to someone in need. I had already been praying for this person somewhere out there that was waiting for a new kidney. I wanted the committee to say yes but was worried they would say no.
I stayed pretty busy that Friday morning. My son and I went to see the movie "Inside Out" with some friends from church. I thought the movie would be a good distraction but I still found myself checking my phone every 10 minutes or so to see if I had missed a call.
After the movie I continued checking my phone. I think I wore myself out with worry and ended up taking a nap. I woke up when my phone buzzed. I jumped out of bed to see if it was a call from the transplant center but it turned out to be a text from a friend seeing if I had heard anything yet. Just out of habit I checked my email and found that I had received an email almost 2 hours earlier from the donor coordinator.
The committee approved me. I am approved for surgery.
Thanks be to God.
After calls to my husband and parents and a few friends, I responded to the email with what has become my standard question: "Great! So what's next?"
The next step was to find a match for my kidney. I continued my prayers for this unknown person and hoped that the match would be found quickly.
I knew going into this process that one big step was a battery of tests to make sure I would be an ideal donor candidate. I remember when my uncle-in-law (is that a thing?) went through this process in 2007 and also remember how worn out he was at the end of the day. My day of testing was scheduled for Monday, June 15. I received a schedule as well as several documents explaining where to go and what to expect. My first appointment at 7:30am and my final appointment was scheduled for 4:00pm with 8 additional appointments in between. It was going to be a long day.
Appointment #1: Nurse Interview - After successfully locating the correct parking garage and building, I was right on time for my first appointment. I met with the intake nurse who basically just wanted another run down of my current medications. This kinda felt like an actual interview and I was worrying way too much about answering correctly. For example, Nurse: "You said you take Tylenol. How much Tylenol do you take?" Me: "Uhhhh, maybe like 4 pills a month if I get a headache? Umm, or sometimes, maybe more like 6 pills a month?" Then I'm questioning myself about whether that's too much Tylenol and wondering if they are just going to tell me to go home because I am a terrible donor because of my 6 pill a month Tylenol habit. Thankfully, they let me continue on to the next appointment.
Appointment #2 and #3: Lab Work and Kidney Donor Coordinator Consult - In the lab I turned in my 24 hour urine collection jar. I was happy to do so since it was pretty awkward carrying around a 2-liter jar of my own pee. Then they took 13, yes, 13 vials of blood and did another urine sample. Fun fact: The phlebotomist (who was amazing by the way) told me she's really not a fan of needles. I thought that was funny.
The Donor Coordinator is about the nicest person I have ever met. She met with me briefly to see if I had any questions yet and to explain a few things about the day and what I could expect.
Appointment #4: Kidney Donor Nephrology Consult - I sat in an exam room and met with the kidney doctor. He explained what a kidney does, why it's important, how it develops, where it's located in the body and all kinds of helpful stuff like that. He also gave me some great statistics about life after kidney donation. I had a couple of questions and then he did a physical exam. He listened to my heart and lungs, looked in my eyes and mouth, asked me to push his hands and then pull his hands and other doctor-y type things. At this point I was again nervous that I would fail his tests and they would ask me to leave. One of the tests was to stand with my feet together and my arms stretched out to either side and close my eyes. I still don't know if I performed well or poorly on that one since I'm not really sure what was supposed to happen.
Appointment #5: Social Worker Consult - They wanted to make sure I wasn't crazy and that I had someone to help me after surgery. Check and check.
Appointment #6: EKG - This took about 2 minutes. They got the results immediately and said they looked great.
Appointment #7 and #8: Kidney Donor Education Class and Kidney Donor Advocate Consult- The students in the class were me and one other dude. I got to the classroom first and when this guy showed up he sat on the complete opposite side of the room. The Donor Coordinator went over tons of great information. At one point she was talking about "pooping and pooting" and she said "pooping and pooting" about 6 times in a row. I thought it was hilarious but my fellow classmate looked quiet uncomfortable. The class also included a 30 minute informational video but it just so happened that I had already found that particular video on the internet and watched it twice so she said I could just go to the next appointment instead. Boom! I met with the donor advocate and asked more questions and got more answers.
Appointment #9: Kidney Donor Transplant Surgeon Consult - This was the actual surgeon. He reminded me of the possible risks associated with surgery and then explained how exactly they would remove my kidney. Then he performed another physical exam and sent me on my way to me final stop for the day.
Appointment #10: CT Angiogram and Chest X-Ray - The CT Angiogram was the only appointment that I was a wee bit apprehensive to do. This is the test where they inject the dye into you so that they can see how your kidneys are "wired" basically. It didn't hurt, but when they injected the dye I immediately feel simultaneously hot and like I had peed in my pants. Glad they warned me that that would happen. Chest X-ray was easy peasy and quick and I was done for the day!
Whew, if that sounds like a lot that's because it was a lot. All of my results would be taken to the transplant committee 5 days later. They would discuss everything and decide if I was a good candidate for donation. I left tired but hopeful that I would be approved.
The weekend before my full day of tests at the hospital, I had to complete a 24-hour urine collection. The hospital sent me a lovely orange 2 liter jar in the mail along with some detailed instructions.
The 24-hour urine collection is exactly what it sounds like. My 5 year old son thought the whole thing was quite funny.
Once I received final approval from Baylor to begin the testing phase of the process, the next step was to go in for some lab work. Luckily, this was done at a local LabCorp facility instead of at the hospital. I think my appointment broke the Guinness World Record for fastest lab appointment in the history of the universe.
The total time it took for me to park, sign in, have blood and urine tests completed and get back in my car was less than 7 minutes. I couldn't believe it.
There are 3 steps for being a compatible match for kidney donation. First one kidney texts the other kidney, "sup?" Then the two kidneys go on a group date at a noisy restaurant to see how they get along. Then one of the kidneys waits three days to contact the other kidney to set up another date. No wait, I don't think that's right....
I will attempt to summarize the actual steps of compatibility in my own language (technically still the English language) but if you are interested in learning more, there are tons and tons of articles about this on the world wide web. Try the website "Google" for further explanation.
The first hurdle of compatibility is blood type. Different blood types are (or are not) compatible with one another but since I have type O blood, I am a universal donor; score! Go team O! The next step in the matching process is tissue typing. This is the most confusing and complex part of compatibility. Basically they are looking at 6 antigens; a 6 out of 6 match is the best, then 5 out of 5 and so on. I definitely recommend reading a professional explanation of tissue typing (again, see "Google").
Once you have passed through these first two steps in compatibility, the last test is cross matching. This test is performed to identify the presence of antibodies that would cause damage to the kidney from the specific donor. They basically put the donor and the recipient's blood in the Hunger Games arena to see if they kill each other or get along like Katniss and Peeta.
The whole thing is very cool and very complex and I am really enjoying learning more and more as I go.
I decided almost immediately that I wanted to work with Baylor University Medical Center of Dallas for this process. Baylor is a great hospital and has performed over 3000 kidney transplants since 1985. I searched and searched and found an initial questionnaire that must be filled out to start the donation process. The questionnaire was fairly comprehensive and included subjects such as blood type, family medical history, surgical history, current medications and overall questions about your current health and lifestyle. Near the end there was an optional question asking, "what makes you want to donate your kidney?" I had to think about how best to respond to this as there are several reasons that I want to donate my kidney. Since there was a limit to the amount of characters you could type I decided to keep it short and sweet: I have two healthy kidneys and there are plenty of people with zero healthy kidneys and I'm happy to share.
I submitted my questionnaire and waited. After waiting a couple of days, and being the "go getter" that I am (aka impatient), I decided to call the transplant center to ask what I needed to do next. The delightful transplant coordinator informed me that she did in fact receive my questionnaire and that she would be sending me a document with instructions for me to read and sign.
An hour or so later I received a 28 page document. This document laid out in great detail the process for kidney donation. As an donor you are not allowed to receive any money or financial gain for your donation. As a donor you have your own social worker and other personnel dedicated specifically to you that have no interaction with the recipient. They are there to inform you of risks and other concerns. As a donor you have the option to back out at any time for any reason. As a donor you will be evaluated both physically and mentally to make 100% certain that you are a good candidate for donation and that your body can handle the surgery and recovery.
I signed and returned the document and waited for the next steps.
On April 29, 2015 I officially began the process of donating my kidney to a stranger. Ive been considering living organ donation for the past 7 years. In 2008 my father-in-law, David Lever, was in need of a kidney transplant. His siblings and children were the first to be tested as they were the most likely to be a match. I knew immediately that if no biological family members were a good match for David I would happily give my own kidney if given the opportunity. Turns out, David's brother was an ideal match and the two of them began the process of preparing for a kidney transplant.
Throughout the last 7 years, I have considered kidney donation off and on. During that time I gave birth to a little boy (now 5 and a half), changed careers and along with my husband moved from one house to another. Back in 2008, I did sign up to be a bone marrow donor in honor of David. I was happy to do it and whenever I switched addresses or jobs I was sure to update my information with Be The Match so that they would be able to find me if they needed me.
Fast forward to April of 2015. I received an envelope in the mail from Be The Match. I was secretly hoping this was correspondence informing me that my bone marrow would finally be needed. Then I realized that they would probably call or email me rather than sending me something in the mail. Turns out it was time to renew my commitment. On the same day, I saw a picture online of a truck. This particular truck, had a plea in big bold letters asking for a kidney donor for a child. It had information about blood type and a phone number for anyone interested in helping. This reignited my interest in living donation. After hours and hours and days and days of research I contacted a local hospital and began the process of moving forward as an altruistic kidney donor.
I hope to share my story here to inform others of the process. If you have any questions please feel free to leave a comment.