Life as a Living Organ Donor: Pre-Op & The C-Word

“As mothers and daughters, we are connected with one another. My mother is the bones of my spine, keeping me straight and true. She is my blood, making sure it runs rich and strong. She is the beating of my heart. I cannot now imagine a life without her.”  -Kristin Hannah

 

 

Ever since my mom was a little girl, she has had to deal with so many health problems, the main one being kidney failure. To this day, she has had countless surgeries, thousands of doctors appointments, a lot of time spent on dialysis, and two kidney transplants. Her first transplant was done when she was quite young, she was given the kidney of a girl in her 20’s that passed away. That kidney did not last too long and so my mom was back on dialysis. However, that is when my Tita (mi abuelita) decided to give my mom one of her kidneys. It was a two year process to ultimately even be able to donate, but finally it happened and wow, was my mom lucky. It has been 20+ years since that transplant, and for those that don’t know, that’s an incredibly long time for a donated kidney to last. However, in recent years, the health of my mom’s kidney has been declining. That, and some other health issues that have come into play, is the reason why I am now currently in the process of becoming a living organ donor.

 

 

I’m sure mostly everyone can understand where I’m coming from when I say that there is nothing I wouldn’t do to help my mom. So from the moment I turned 18, I have been nagging my mother to let me get tested. Finally, around March of this year, she agreed to let me start the process of becoming an organ donor. I am so happy to finally be able to do this because my mom has had other health issues come up and because of that, we know that she won’t have much longer until her kidney completely fails and she ends up back on dialysis. So, this truly means everything to me because the thought of being able to improve my mom’s quality of life is unreal.

 

 

So, it was in March that we finally spoke to her kidney doctor and informed him that I was ready to be tested. A few weeks later, we had my first work up scheduled. They took my blood and basically did a virtual test to see if it would even be worth pursuing. Upon getting those results back, it was a positive outcome so towards the end of April, we did another blood test to see if I was a blood match for her. I remember that I was sitting with my mom at the hospital while she was receiving a transfusion when I got the call that told me I was a perfect blood match for her. I have never, in my life, felt as happy as I did in that moment. So, we then scheduled yet another blood test, but this time it was to see if our antibodies would match. I remember walking in to get my blood drawn and actually being very nervous about it because that test would ultimately determine whether or not I would be able to donate directly to my mom. The results to that specific test take longer than any average blood test and I swear that the wait felt like eternity. I eventually got so anxious that in the beginning of June I emailed the living donor transplant coordinator asking about the results. She got back to me the next day with news that definitely brought me down from my perfect blood match high. Unfortunately, I found out that I will not be able to donate directly to my mother because her antibodies were fighting mine (that basically means that if I did donate directly to my mom, her body would most likely reject my kidney). Not only did I get that bad news, but I found out that the other health issues that my mom is currently dealing with has made her inactive on the list so I would not be able to continue on with my testing at this time regardless.

 

 

All of that happened in the beginning of June, right before I left on my vacations, and it truly did bring me down a little bit. However, I tried to remain positive because I knew that within time I would ultimately just allow them to place my mom and I into an exchange program. What this means is that my mom and I will be put into a system that will scan other people and their living donors for matches. Once we find a good fit, I will donate to someone else and their donor will donate to my mom (it could potentially be more than just two pairs though, an exchange program could end up being multiple pairs). Currently, I am getting ready to complete many tests to clear myself to become an organ donor. I know that there is a lot of appointments that I have to go to and that it will get stressful, but I am excited to finally be able to get them done. I am trying to knock them all out as quickly as possible so that once my mom is active, we can immediately get the ball rolling. With the exchange program, there is no real timeline. We find a match when we find a match. It could take a month or it could take several, there is no way to know.

 

 

This past Friday, my mom had a small surgery in which they were running two different tests. I originally had a different ending for this blog, as I had literally finished it up while she was in the operating room. Unfortunately, I had to remove the last few paragraphs and so here I am now, writing up something completely different. When my mother was out of the surgery, I went up to see her in her little recovery area. As soon as I got up there, my mom was still slightly out of it, so a lot of the nurses and hospital staff just came over to address me. I had four different people come up to me and ask if the doctor had come out to speak to me yet. Normally, after such a minor surgery, I wouldn’t speak to the doctor as it’s normally not that big of a deal. I normally just hear from a nurse that things went smooth and that as soon as she is up and coherent we could go home. However, because of this I knew that something was off. After about thirty minutes, the doctor finally found his way over to us. He was followed by one of his assistants who just awkwardly stood in the back and gave me that sympathetic smile. By this time, my mom was up and able to also listen to what he had to say. He first started off talking about the first test he did, he was explaining how things went well and that she was cleared on that one. After he finished talking about the details from the first test, his tone changed. He then started to explain what he did in the second procedure and he mentioned that he found something. Then, there was a brief pause which was followed by the words: “you have cancer.” After he said that, I kind of spaced out, if I am being honest. I know he was talking about having to schedule multiple appointments and that it seemed as if another surgery was going to have to take place in the near future, but I kind of checked out (as did my mom) for a few moments. My mom has had cancer scares in the past, but luckily none of the tumors were ever active. So hearing the doctor say those words made a whole bunch of emotions come up. This test was just something we had to check off of a list, we did not anticipate any bad results from it so to get news like that was so unexpected.

 

 

So, that is currently where we are now. I am not quite sure how the rest of my testing is going to go or if I will have to put everything on pause again. I hope that I will be able to continue with my tests because getting my mother a functioning kidney is still a huge priority. As for everything related to her cancer, I know that she has to have a test probably sometime this week where they use a certain dye in order to see everything better. The problem with this is that the dye is actually extremely toxic for kidney patients so after this test it is highly likely that my mother’s kidney will go into full on rejection and that she will have to start dialysis again. Everything is still very up in the air though as we do not really know all of the facts. I do intend on continuing to keep my blog up to date with everything regarding my mother’s health and my organ donation process. Although we are not sure about how things will play out, we are remaining hopeful and positive during this time.

 

 

For now, I just want to end with a message for my mom-

I know you’re reading this so I thought the best way to end this blog was writing directly to you. I have never in my life met someone more inspiring than you. Your strength is unbelievable and so admirable. I know that you’re not one to normally open up about your feelings (lol I obviously take after you), but I just want you to know that I am here to be with you throughout every step. I am so damn proud to be your daughter (and best friend). Every single person who has had the chance to get to know you knows how you can literally light up a room with your outgoing personality and I admire how you’ve never lost who you are despite how you’re feeling inside. You’re strong and you’re going to get over this little speedbump (as Nyd calls it). I love you, mamacita.

 

Mariah Robinson