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Pre-op Testing and 6 Days Left – Our Kidney Story: Part 4

November felt like forever waiting for a date.

December felt like a lifetime…would surgery happen in 2017?

When we received a surgery date for January 17, it felt far away, but now it is almost here.

Tuesday of this week I went in for all of my pre-op testing.  You know, the part where they have you do most of the tests over again just to scare the pants off of you that something has changed.

Before the testing my husband and I had scheduled to meet with Sue, our living donor advocate. Joe is amazing and has never wavered in his support of this decision to donate, but he hadn’t had the chance to be around all of the doctors like I had, so we both thought it would be good for him to have a chance to ask some questions.

Milo tagged along…he seems to have a knack for being under the weather when seemingly important things are going on…

Anyways, Sue, Joe, Milo and I went into a room and started chatting. Joe asked great questions – none of which I can think of right now – and then we got a surprise visitor…2 actually!

First Cody popped her head in. She is my Transplant Coordinator who has made probably 100 phone calls on my behalf to schedule everything that has happened in the past several months. She is awesome.

And right behind her came Dr. Varma – the surgeon who will be performing my operation AND Michael’s operation (have I told you how cool that is?!?!)

Honestly I was kind of shocked that Dr. Varma took the time to come visit. When I met him the first time I was so impressed by him. He referenced his own children often and I had no doubt he cared about me as a patient and a person. So, when he took 30 minutes to sit down with my husband and I (unscheduled), I was only affirmed that I will be in good hands.

We learned some interesting things by talking to him…

So the whole “match” thing I told you about in the prior post? It’s even less significant than I thought it was! This is my completely non-medical explanation. It is definitely not 100% correct. So they do something called HLA-Matching. HLA stands for Human Leukocyte Antigen, which are “proteins – or markers – found on most cells in your body. Your immune system uses these markers to recognize which cells belong in your body and which do not.”

So, I was going to try to explain what I understand about HLA matching, but I’d probably just be lying. Anyways, they can do transplants with donors that match completely or hardly match at all. If this is interesting to you, go here to read about it.

That being said, they do have an official number to determine how much of a match you are, and we’re hoping to hear that number tomorrow! There are 6 HLAs that they compare to get to this anticipated number. The chance of being an exact match with an unrelated donor is about 1 in 100,000. Michael and I are hoping to just come close!

I officially asked Dr. Varma what he would be doing with the 3D model of my kidneys that he made. I suggested that he give the right kidney to me and the left kidney to Michael. I’m sure they don’t just hand out those 3D Models, but I’ll keep you posted on this.

One other random, but fascinating fact. Kidneys naturally have 1 vein and 1 artery coming from them. Turns out that my left kidney (the one Michael will be receiving) has 2 arteries! This apparently is not a big deal at all, but after they remove my kidney they will do surgery on the kidney outside of my body to splice these two arteries into one. Dr. Varma kept mentioning “the bench” in reference to where they would do this to the kidney…I really hope that before I go into anesthesia land I remember to ask them where the bench is!

So, leaving there, Joe and I felt cared for and blessed. They do not take organ donation or organ transplantation lightly, but I have no doubt we are well taken care of.

Joe and Milo left and I headed down for some tests. I’d been anxious about this day — what if something changed? What if they find something that wasn’t there before? They told me not to worry, that this was just protocol but still, you worry.

They drew a lot of blood, did an EKG, chest Xray, checked my pee again and then I met with Anesthesia.

It all seemed to go quite smoothly and I haven’t heard from them…so no news is good news on this front.

Leaving the hospital after those tests felt strange because the next time I’ll be there will be for surgery.

People keep (understandably) asking how I’m feeling. Really…I’m not sure. I am definitely excited. I have no doubt I’m right where I’m supposed to be. I am anxious about the influenza that seems to be swarming around us. I am sad that I won’t be able to see my kids for 2 days (they aren’t able to visit during flu season). I’m excited to maybe have a bit of down time where I can sleep and watch some Netflix. (Show suggestions are welcome.)  And I’m hopeful that one month from now, Michael will be home, off dialysis, just being the awesome little guy he is.

If you’ve read this far, I’m impressed and really appreciate your support more than you know. At this point I’m probably writing this more for myself than anything else, but I am hopeful that in sharing my story others may find themselves lead to explore donation as well.

This whole journey has already been such a blessing to me. I hope I am able to communicate that donating an organ gives life to all who are involved.

You’ll hear from me soon I’m sure.

Robyn