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A Match – Our Kidney Story: Part 3

On August 28 a special post popped up on my Facebook feed that Michael was officially on the organ transplant list! While I’d never changed my mind about wanting to be tested, it wasn’t at the front of my mind between April and August. But as soon as I saw this post, the same peace came that I still wanted to see if I was a match.

I contacted Michael’s transplant team at Cardinal Glennon Children’s Hospital in St. Louis, Missouri, who then connected me to their partnering adult hospital, St. Louis University Hospital.

In my naivety, I thought that a blood draw would be the determining factor of whether or not I was a match.  And if I was a match, I just assumed I’d be able to donate.

I’d never considered that even if I was a match they would have to make another decision of whether or not I was a good candidate for the surgery.

It became comforting once I understood why they were running so many tests. It is one thing to send someone into surgery who needs it and a whole different thing to send someone into surgery who doesn’t need it.

Not only were they wanting to protect me from the risks of surgery, they were making sure I wasn’t at risk for kidney disease in the future. And for Michael’s sake, the more information they know about my health, the better.

Fairly early on in the process I learned that my kidney was a match for Michael. That was exciting, but quickly felt like the easy part.

They are quite conservative about accepting someone as a living donor. They test EVERYTHING. After each test I awaited the phone call to see if I was still eligible and with each call, I became more and more nervous that they would deem me ineligible.

I probably went to SLU Hospital a total of 7 times for blood draws, urinalysis, EKG, chest x-ray, MRI, psychological exam …

During this time, Michael’s family didn’t know I was being tested, but I was already emotionally invested in this…I prayed and tried hard to trust and have peace that God’s hand was in this no matter the outcome.

So, in the course of these two months I met with a nephrologist, surgeon, dietician, social worker, psychiatrist, psychologist, financial advisor and living donor advocate, all of whom were coordinated through a kind lady named Cody who juggles way too many schedules.

To get final approval to be Michael’s donor, all 9 of those people gathered in a room to decide together.

On October 26 (nearly 2 months after my first phone call to the hospital) Cody called to tell me that I was officially approved!

I was planning on waiting until we had a surgery date before telling Michael’s family, but it of course is more complicated than that…and it would be awhile before we had a date, so I decided to tell them.

So that night I FaceTimed Sarah (Michael’s mom) to tell her. At this point, we’d only met each other  twice. My stomach churned so bad waiting to called her. I was excited and terrified.

I thought maybe she would have an inkling as to why I was calling, but turns out she had NO idea, so I think shock best describes our conversation.

I remember saying “Michael – God has been hearing all of your prayers and I am going to give you my kidney!”

I don’t think Sarah believed me…or even could believe me!  Initially she thought I was saying that I was going to get tested. It felt SO good to tell her that no, I was officially approved! I am so happy that I waited to tell them; I hope it spared them months of excess anxiety.

Now we waited for a surgery date.  Again, I underestimated the process.

To spare you the agonizing details, we had to wait for Michael to gain a little weight…then gain a little length…and finally the surgeon scheduled surgery for January 17…which is finally right around the corner.

 

 

Clarity in the Chaos – Our Kidney Story: Part 2

If you’re just joining us…start with Part 1 of this story here!

There have only been a few times in my life where I felt like I heard a message so clear that there was no room to doubt. It is this kind of clarity that gives me peace and confidence when making big decisions … like donating a kidney … especially in the midst of chaos … like raising our 3 little boys.

In April of this year I was heading to a park in St. Louis to meet the newest TinySuperhero, Super Michael! I was excited to meet him and hand deliver his cape, and HEC-TV was there to capture it on camera for a story they were working on.

I had no idea how much this little guy would change my life.

Michael was born with underdeveloped kidneys. He has been on dialysis for his entire life, going to the hospital three times per week for 3 hours at a time. You could say his life revolves around his dialysis schedule.

Michael’s mom is Sarah and I was meeting her for the first time that day as well. During the interview, she was telling us about Michael’s condition and how he would soon need a kidney transplant.  She said …

“Once Michael is on the transplant list, we will be looking for a living donor.”

A living donor? I’d never heard of it.

I pretty distinctly remember being at the DMV when I was 16 and feeling a lot of stress as I chose whether to mark the organ donation box on the back of my license or not…but living donor was a new concept for me.

Peripherally I’m sure I had heard stories about kidney transplants within families and such, but I’d never actually thought about how that would happen or the circumstances that would surround it…and it had never happened to anyone I knew.

And MOST certainly, I didn’t know that an adult could voluntarily donate a kidney to a child. Did you? This blew my mind.

I can’t explain it, but with great clarity and peace, I knew right then and there that whenever Michael was officially listed on the transplant list, I wanted and needed to see if I was a match.

I now feel very special about that day at the park and having it captured on camera is a treasure. You can see the piece by HEC-TV from that day here.

I came home from the park and told my husband, Joe, about how clearly I felt I needed to see if I was a match for Michael. I was excited about the possibility but was trying to leave space for Joe to react, as it would certainly impact his life as well.

It’s easier to talk about something like this when it is hypothetical…Michael wasn’t even on the transplant list yet and there was no way to know if I would be a match or not. I also had no idea what would be involved in seeing if I was a match, let alone the transplant surgery.

But, Joe is amazing, and just as he has always done, he said he would support me if I it was what I thought I needed to do. (Though surely he thought I had perhaps totally lost my mind…)

And then I waited.  I had no idea when Michael would be put on the transplant list, but he lingered in the back of my mind from this day on. 

More story to come…