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We Did It! – Our Kidney Story: Part 5

For some reason, this post has been the hardest to write. Bare with me here…maybe the anesthesia is still wearing off…I don’t know. But sorry for leaving you hanging after the surgery and thank you all for checking in!

I’m including a lot in here, so you won’t offend me if you just want the short version, I’m elated to tell you that the kidney transplant was a success!

 

Tuesday, January 16

The day before surgery was Michael’s last (hopefully forever) dialysis treatment.

Three months ago I didn’t know much about dialysis. I only vaguely understand it now. I am grateful his parents gave me the opportunity to visit during one of his treatments. It is hard to comprehend kidney failure, but watching a 1 1/2 year old try to sit still for 3 hours while all of his blood is pulled out and cleaned…well, it does give some perspective.

It wasn’t until I saw Michael on dialysis that I really understood how sick Michael was. When you’re with him or watching the cute videos on his Facebook page, it is hard to imagine that his life was dependent on receiving this treatment three times a week. He’s as cute, sweet, cuddly, communicative and active as most 1 year olds you know. It is easy to forget he is so sick.

In celebration of his last dialysis, we had a Dialysis party…which really isn’t a party at all…the room barely fits Michael and his nurse and he was technically in isolation so couldn’t have visitors…but we celebrated nonetheless.

 

 

You’d maybe think we’d all be a blubbering mess during something like this, but what we were facing was so surreal, that I’m not sure any of us could really process it.

I spent the rest of the day working out last minute details. We are so blessed to have an army of love around us because it was definitely going to take a village to pull this surgery off with 3 little kids!

 

Wednesday, January 17  –  Surgery Day

At 6:30 on Wednesday morning we met Michael and his family outside of Cardinal Glennon Children’s Hospital for one last hug and picture! This was it. The day we had been waiting for.

This early AM meeting was actually the first time my husband Joe had met Michael and his family…life made it hard to make this happen beforehand, but I was so happy Joe got to meet them before surgery. My amazing friend Alex woke at the break of dawn to capture this for us.

 

 

I arrived at St. Louis University Hospital at 7 am. We checked in and went straight to pre-op. I was nervous, anxious and hate being in a hospital gown, but I had no doubts about having the surgery. Those 2+ hours of waiting for in the pre-op room felt like a lifetime.

I said goodbye to Joe as they started wheeling me to the operating room. The nurse put a small dose of something in my IV and that is the last thing I remember…

My surgery lasted longer than expected…though everything went smoothly. I am grateful that the surgeon, Dr. Varma is a perfectionist and from what I hear, the surgery room was full for the 5 hours I was off in La La Land. We did end up with some really cool pictures…so I’ll just avoid all of the other awkward thoughts that pass through my head.

I was completely unaware at this point, but after removing my kidney, splicing together the extra arteries, and transporting the kidney through an underground tunnel…it was Michael’s turn.

Both surgeries were a complete success!  Michael responded quickly to his new kidney and that is the best news of all.

My goal here is to encourage others to consider being a living donor…but I’ll be honest with you…these first two days sucked. The pain was more intense than I expected and the pain medication did not agree with my brain. While I felt good once I was up and walking, getting up those first few times felt impossible. I ended up spending an extra night at the hospital and all-in-all those three days are one big blurry memory for me. Honestly, I only remember bits and pieces.

I left the hospital on Saturday and we were able to go visit Michael over at Cardinal Glennon before heading home. He was in the Pediatric ICU but was doing so well. It was surreal.  It is still surreal.  You’ll be happy to know that my husband was in charge of driving us home…

 

 

Today we are 13 days post-op. 

Earlier I was honest about the pain being worse than expected. Now I am being honest that the recovery has been so much easier than I could have even hoped!  In less than one week I wasn’t even needing Tylenol for pain.

I had some unpleasant night sweats for awhile and anesthesia + pain meds does a number on your bowels (I’ll leave it at that) but all of that has passed.

The only remnants of recovery now are some tiredness and the daily grind of overcoming the emotional highs and lows that come with things like this…otherwise, I feel really good.

Not being able to lift is definitely the biggest challenge left. I’m not able to lift anything over 15 pounds for about 6 weeks, and Sheldon weighs in at a whopping 22 pounds, so I will be humbling relying on our network of support for several more weeks.

I had my post op appointment today and we were thrilled to see that my labs and numbers were right where the doctors hoped they would be. My one kidney is successfully taking over the job of two!

We are surrounded by love. We have more food than we could ever eat. There are flowers and cookies and love overflowing through our house. I feel undeserving of the kindness that has come our way, but I am so incredibly thankful for the prayers and support. Joe has carried the biggest burden for sure. He takes none of the credit but this literally wouldn’t have been possible without him.

The whole thing is still surreal to me. Maybe in another month or so I’ll be more able to digest it, but for today I am just so grateful that Michael is thriving.  I’m so grateful that my recovery has been so smooth. I am so grateful for the love that surrounds my family.

People keep telling me how amazing it is that I did this.  I appreciate the kindness in that and I feel the love within it.  I do see how donating a kidney is altruistic and kind, but truly I don’t feel like I’ve done anything extraordinarily amazing.

I feel grateful that I am surrounded by TinySuperheroes who have given me new understanding of hope, purpose and perspective. I wanted to donate my kidney because I could do something to help. If I had dozens of kidneys to give, I would give all of them.

Once you know our TinySuperheroes…once you know Michael and his parents, it is crystal clear that THEY are amazing. I am humbled and honored to call TinySuperheroes my friends.

While this is in a way the tail-end of my transplant journey, it is only the beginning for Michael.

Michael is on a very demanding regimen of medicine now. This photo below if just 1 day of medicine. This is HARD.

Michael no longer has to go in for dialysis 3 times per week but goes into the hospital now daily for blood draws and labs. This is HARD.

A new kidney changes Michael’s life…you could even maybe say it saves his life…but this TinySuperhero’s battle is far from over, and it is important to me that HIS amazingness is what shines through this situation.

Donating my kidney to Michael feels like a privilege to me. Maybe that is hard to understand, but that is what it feels like. What an honor it is to have something that someone else needs, and to be able to give it to them. I am EQUALLY blessed by this transplant.

I just want to close by saying Thank You. Thank you for your kind words, thank you for the love you’ve shown Michael and his family, thank you for living this journey with us and thank you for helping us spread the word so that more kids and adults who are waiting for transplants can have HOPE, too.

 

If you have any interest in chatting about being a living donor, I would love to share more with you. You can email me at robyn@tinysuperheroes.com and forgive me that I’m notoriously behind at replying to email so put something like LIVING DONOR!!! in the subject line!

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

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…

 

Exciting News – Our Kidney Story: Part 1

I’m excited and humbled to share some very special news with you.

On January 17, I have the privilege of donating one of my kidneys to our very own TinySuperhero, Super Michael!

In one very intense day, surgeon Dr. Varma will remove one of my kidneys at St. Louis University Hospital, transport it through an underground tunnel into Cardinal Glennon Children’s Hospital, and give it to Super Michael! It’s phenomenally amazing that this is possible…isn’t it?

I am excited to share our full story with you in the coming weeks, but wanted to start by sharing the news and these precious photos that my friend Alex at Pics & Paws Photography captured for us.

I was hesitant on how to best share this – I am excited to share our journey and also nervous of what others might think. But Michael and I have an amazing opportunity to raise awareness for organ donation, so that is what we are going to do.

I pray that not only will my spare kidney change Michael’s story, but that together we can make an impact for the 100,000+ people in the US who are currently awaiting a life-saving organ transplant.

Thank you, as always, for your support. It is an honor to join Michael’s journey in this way, just as it is an honor to be a part of our TinySuperheroes community everyday.

Catch part two of this story here.

Much love,

Robyn