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!

5 replies
  1. Brenda Foerschler
    Brenda Foerschler says:

    Love you so much, Robyn! Love your heart, love your attitude, and love your outlook on life. You are a VERY SPECIAL WOMAN, and I’m so proud to be your god-momma! 😘😘😘

    Reply
  2. Rose Veile
    Rose Veile says:

    Thank you for sharing your amazing story of the greatest gift a person can give. You gave a part of you to save a life of another. Go Bless You Robyn. It is truly a joy for me to know you and call you a friend. Love, Rose Veile

    Reply
  3. Tracie
    Tracie says:

    You are amazing! Such an inspiration on how you live your life! Joe, you rock for your unwavering support! Love and hugs to you all ❤️

    Reply

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