THE GIRL WITH AN EXTRA KIDNEY
and my friend in need of ONE.
9 Months to Surgery
My story starts about nine months ago when I heard that my friend’s body was in crisis. She is a wife and mother, and just 29 years old. A diabetic since childhood and now in need of an emergency triple bypass surgery. We stood by their family’s side throughout her heart surgery and she miraculously pulled through but was still very much aware that the fight for her health wasn’t over yet. Not only was her heart in trouble, but she was also in need of kidney and pancreas transplants. The next step for her body to be restored to health was receiving a kidney.
14 Weeks to Surgery
In August she was able to meet all the requirements to be placed on the kidney transplant list.
It was then that I felt God ask me to step up and be her donor.
“Umm, me? God? Are you sure? Remember, I’m the one who is terrified of needles, hates the smells and sounds of hospitals, and has never even given blood because, oh yeah… I’m terrified of needles!?”
But, God asked. And with that ask, He gave me an extra dose of bravery.
I brought it up with my husband and assured him that I wasn’t going to offer my kidney unless he was completely on board. He responded: “I was wondering when we’d be having this conversation, because I had a feeling you were going to do this.”
I realized I didn’t even know my blood type or if I was a suitable donor for her. So, I made a call to my doctor and found out that my blood type is A+. (Which meant nothing at the time because I had no idea what type she was.)
So with the full support of my husband and a promise from God that He wouldn’t ask me to do something He hadn’t equipped me to do, I made the call to my friend.
She answered and I went speechless. (I mean, how exactly does one go about offering ones’ kidney?) But I managed to awkwardly offer up my organ. Then it was she who was speechless.
It was silent.
She said she had never expected to get this call.
I nervously asked, “So, what blood type are you?”
To which she replied, “I’m A+.”
Immediately, I started crying (happy tears). This was just the first of many miracles to come!
I made the call to the URMC Kidney Transplant Program and let them know I was interested in being a donor and the process began.
13 Weeks to Surgery
I made my first trip to the lab for my initial round of blood work. And then we waited. (The waiting has been hard throughout this whole process, but every time we’ve waited, the results have been worth it!)
At first, the team was concerned that I might be prone to kidney stones. They asked me to do a 24 hour urinalysis test to insure that I wasn’t. I was told that if this test came back positive, I would no longer be a suitable candidate. We waited. The results came in negative and I was in the clear! (Insert more happy tears!)
Next was a tissue typing test where they mix our blood together and observe the interaction. My transplant coordinator informed me that because my friend had undergone prior surgeries, her body had built up certain antibodies and that even though we were a blood type match, her body might reject my kidney due to these antibodies.
At this point I was made aware of the Joint Paired Exchange. Essentially, this program guarantees that regardless of the outcome of this tissue test, there was still the beautiful option to be part of giving life. This test was going to take two weeks to get the results, and so we waited.
My friend’s nephrologist said she needed a kidney transplant by the end of the year or else she was looking at dialysis and I was being told that my next step was nearly impossible to accomplish before year end. This next step was a two day evaluation with the kidney transplant team at Strong. I explained the urgency to my transplant coordinator and she said, “Let me see what I can do.”
(Have I mentioned how much I love my transplant team at Strong yet? Because, they’re awesome.)
I got a call that the team was able to open up October 26–27 for me! (Insert happy dance)
And THEN she called back days later saying they had a cancellation and that I was going to be seen October 12–13. (Another miracle and more happy tears!)
10 Weeks to Surgery
I went in that Wednesday morning knowing full well I was looking at a day full of getting poked with needles, numerous tests done on me, and an entire day of the lovely sights, sounds, and smells of the hospital.
But I felt ready. I felt more than ready, I felt excited!
God always shows up and makes us brave when we need it most.
I walked into the lab (carrying a brown bag containing another 24 hour urinalysis). Waiting for me was my transplant coordinator who I was finally able to meet face to face after so many phone calls back and forth over the last month. She started telling me about my schedule for the day and then paused and asked,
“Wait! Have you been told your results for your compatibility test yet?”
I hadn’t and had been anxiously waiting to hear if my kidney would be used for my friend or another person in need. (The only thing I can compare it to is like waiting to hear if you’re pregnant with a boy or a girl. You’re going to be excited either way, but you’re just anxious to hear which one!)
She said, “You and your friend are a match!”
I instantly jumped over and gave my transplant coordinator a big hug. Then excitedly let my friend and my family know the good news! I went through the day of tests, needles and meetings beaming with excitement. They had to go through all kinds of questionnaires and make sure I was fully aware of all the possibilities; what could happen during and after surgery. Reminding me (quite frequently) that this is an elective surgery and that if any point I want out, there would be no questions or judgment.
But God made me brave.
I arrived the next morning for more tests and to hear all the results from the day before with the nurse, doctor, and surgeon. One by one, all of the results revealed that before the beginning of time, my body was created for this. My kidney function was measuring at double the average person’s. (I believe the term “super kidneys” was used.) And as far as compatibility with my friend, she and I share four matching antigens. In other words, our bodies are more like siblings than those of no blood relation. Miracle after miracle came in and the whole team sat there in awe at how beautifully orchestrated this whole situation was.
Oh! And the surgery that was unlikely to happen before the end of the year?
Yeah. It was now on the books for Tuesday November 29th. (Insert happy tears and dance!)
2 Weeks to Surgery
My friend and I went in for a routine exam, two weeks prior to surgery, as the final step. At this point, the reality of the surgery being so close was beginning to set in for both of us. Anxiety about the what if’s and what could happen’s was setting in.
In all honesty, I left that day nearly in a panic attack. Once again, they had to review all of the possibilities of everything that could go wrong. On that day, it just felt too heavy to carry. I came home and cried. (Nervous tears this time.) Fortunately, I am surrounded by a beautiful tribe of family and friends and within two days, they had reminded me of all the amazing, positive possibilities for post-surgery.
And I was able to get my brave on yet again.
8 Days to Surgery
At this point, I was under the impression it was a done deal. That nothing was going to get between me and donating life to my friend.
But then I got a call.
I answered and heard the voice of my transplant coordinator. They were in the middle of a board meeting to review my case and give me the final stamp of approval. She said that something in my blood work from last week looked off and that they needed me to come to the hospital right away for more blood work.
So I loaded up all the kids and got us all to the hospital as quickly as I could. Trying not to panic and trying to trust that this was just a minor glitch. I was certain it would get worked out.
The following day the hospital called asking if I could come in the next day for an appointment with a hematologist.
6 Days to Surgery
In I walked, the day before Thanksgiving, fully confident that this doctor was going to say everything was fine and that we could go on with surgery as planned. He was so wonderful and listened as I sat there and explained how much this surgery meant to me and that I needed so badly for him to put a giant gold star on my file saying I’m good! He went through a long list of questions and decided that I needed to go for (yet again) more blood work. I reminded him that it was the day before Thanksgiving, six days before surgery, and that there was no way I was going to be able to go through the weekend without knowing the results. He reassured me that he would get the results to me as soon as possible.
Down I went to the lab, again. (At this point I believe I had given close to 100 vials of blood)
I went on with my day with the ringer volume on my phone at its highest level and obsessively checking my emails every five minutes, and waited. Five o’clock came and went and I thought for sure I wasn’t going to hear from him and that I’d have to wait all weekend to hear the results.
We were snuggled up on the couches with the kids watching a Christmas movie and at 6:25pm my phone rang. It was the hematologist who had stayed late that night just so he could wait for my results and be sure to get back to me before the holiday.
His tone didn’t reassure me. This was not going to be good news.
Everything inside of me tensed and I sat there and listened to him tell me that he didn’t have the news I was hoping for. That he had uncovered some type of platelet disorder and that he could not in good conscience allow me to go through surgery.
Trying to breathe
and fully swallow exactly what he was telling me.
I was speechless.
He tried explaining through my silence that the concern was that I might not clot well and that there was the possibility that they would not be able to stop me from bleeding out during surgery. Tears began to roll down my cheeks as I thanked him for staying late to give me my results and told him how much I appreciated his thoroughness. I got off the phone and tried to explain to my husband, through my sobbing, what had just happened.
I went upstairs to my bed and cried uncontrollably.
In shock and in disbelief that everything that we had been working towards for the past three months could be taken away by a single phone call.
That all the preparation I had done to get myself and my family ready for surgery was for nothing.
That the date we had circled and stared on the calendar, today, was no longer going to be spent in the operating room, but rather typing my story out for you to read.
I was devastated and heart broken.
I tried pulling myself together to call my friend and let her know what happened… To tell her that I could no longer give her what her body needs to get better. One by one I made the phone calls and texts to family and friends. I was angry and I didn’t want to hear any pep talks or people telling me any of the token phrases to try to make this or me “be ok”. I barely slept that night and fully expected to get up the next morning to hear I had “been punked” and that this was all just a bad dream.
But I didn’t.
5 Days to Surgery
It was Thanksgiving morning and we were having my family over for breakfast and to watch the parade. All I wanted to do was crawl in a hole and cry the day away. I tried to pull myself together. I didn’t want to be anywhere or doing anything. I would just randomly burst out into tears and there was nothing I could do to stop it.
This gift of life I was so prepared to give could no longer be given.
And so we wait.
TODAY: DAY OF SURGERY
I am convinced that my story doesn’t end here.
Every ounce of my being wishes I was given the ok to be in that operating room right now. But I wasn’t. I plan to keep fighting until they tell me there is absolutely nothing left I can do. But for now, all I can do is hope my story will inspire anyone who reads it to think outside of themselves, beyond their own needs and comfort. To see this world full of people, just like you and me, that need help. Our help. I would hope that if I was ever on that waiting list that there would be someone willing to step out of their comfort zone and bravely offer to help.
So on this #GivingTuesday — I’d like to pose a challenge to you.
What are YOU capable of giving?
Here I sit with an extra kidney that I am disqualified to give (for now). I am unable to donate, but are you? My surgeon told me that if 1 out of every 10,000 people in the United States donated a kidney, there would be no kidney transplant waiting list. As of 1/11/16, there are currently 100,791 people waiting for a transplant. 13 people die each day while waiting for a life-saving transplant. And don’t forget about the joint paired exchange program! I spoke with a woman who was able to donate through the program and because of her donation, it caused a chain reaction and three people that were on that waiting list were able to receive kidneys that very day!
Maybe that’s too big of an ask for you (today). Maybe you are capable of donating blood today? Did you know that just one pint of donated blood can help save as many as three people’s lives? Click here to find out where you can donate.
Maybe you’re in a position to give life through a financial donation. I was told that all of my tests and appointments would have cost me several thousands of dollars, but I didn’t have to pay a single penny of it thanks to the kidney acquisition fund. The National Kidney Foundation works hard to make kidney donation as easy as possible for people willing to donate. There is also an opportunity to give directly to the kidney transplant program that I have been working with here at the University of Rochester Medical Center.
Maybe you are unable to do any of these today. But perhaps someone in your life is. Maybe by sharing my story with them, they’ll choose to give. You can share with a simple click on any of the social media links below.
There are so many ways and opportunities to give life.
Which one will you choose today?
P.S. My friend still needs a kidney, now more than ever. If you’d like to help her specifically, please reach out to me on Facebook.