COTA for Kiran

I received my life saving kidney transplant in 2022 thanks to Rachael my wonderful donor.

09/26/2024

We had a wonderful time at this year’s Miracle Maker Celebration! So grateful to everyone who makes COTA possible and life easier for pediatric transplant patients and their families. We’re so grateful for you!

08/14/2023

First day of preschool for an amazing kiddo! Thank you Rachael for Kit who made it all possible!

06/06/2023

Today is Kiran and Rachael’s 6 month Kidney-versary!!

Rachael’s kidney has truly been a gift of life. Kiran has started eating and drinking by mouth, he started speaking (and talking in complete sentences!), and running and swimming and doing everything with SO much energy. It’s been a true miracle.

I dropped him off at preschool today. His first day that would never have been possible on dialysis. We’re reflecting on all the love and support that made, and continue to make, Kiran’s life possible and wonderful. Thank you to everyone and especially Kit the kidney! Here’s to a wonderful 6 months and hopefully many, many more years to follow.

03/12/2023

Three years ago today Kiran was finally discharged from the NICU after 101 days! We brought him home as the first baby to leave the St Vincent NICU on dialysis, on the day before the pandemic shut down. Wow! Unbelievable journey for an unbelievable little guy.

We are so grateful to the incredible medical team at St Vincent’s and everyone who has touched our lives since.

02/15/2023

Happy Valentine’s Day and Happy National Donor Day! We certainly love and are grateful to Kiran’s donor Rachael!

Share your spare! It will change many lives. 💚

02/10/2023

It’s been two months since Kiran’s transplant! Rachael’s kidney has been making miracles. Highlights from these two months include:

Kiran has been eating a ton by mouth! Before transplant on dialysis he threw up multiple times a day and everything tasted like metal because of the elevated levels of toxins in his blood. Now everything tastes normal and he’s not “full” of dialysate fluid - he’s been chowing down on everything! Favorites are Oreos and goldfish crackers and he asks for toast almost every morning.

He’s talking! For whatever reason, before transplant he just didn’t say much. We’ve been doing speech therapy for about three years and while he signed, he just could not mimic sounds. Now he’s starting to mimic sounds and say multiple words. It’s pretty incredible to hear him just talking away while playing and finally be able to listen to how his day was and what he did. No better sound.

He has so much energy and doesn’t fall down anymore! Dialysis does not replace kidney function, and he just was sort of subdued on dialysis. Also he fell down when walking all the time. Running equaled face plant. Now he takes off and runs super fast! His energy is off the charts. It’s so awesome and so exhausting. We’re pretty grateful.

There’s so much more that has changed. He signed up for preschool now that’s he not tied to a machine for 13-14 hours. He can get wet during their summer camp (can’t on dialysis since it’s an infection risk with his catheter site). We’re planning a summer vacation! First since he was born.

The downsides of the immunosuppressants are there too. These are necessary to stop his body from rejecting the kidney, but unfortunately means that an illness we could deal with pretty easily is more serious for him. We were in the hospital for 10 days when we all caught norovirus. He’s still working his way back to full health, and we’re watching labs carefully, but hopefully he’s turned the corner!

We are so, so grateful for everyone’s love and support during this time. It would be impossible to get through such a crazy time alone. Thank you.

12/29/2022

A belated Merry Christmas to everyone! Kiran was finally discharged after his fever and tachycardia resolved. We’ve been out of the hospital a little over a week and it’s been an incredible week. It truly is like a light was turned on inside him. He is SO active! He’s saying way more words and sounds, all the sudden counting to three, and eating copious amounts of gold fish crackers and Oreos.

The change is incredible. We are forever grateful to Rachael for Kit the kidney. Since Kiran started dialysis at 5 days old we never truly understood how sick he must have felt on dialysis. Rachael truly gave him a new life.

Happy new year everyone!

12/11/2022

Post op day 4: Kit the kidney is doing amazing! Numbers look great and it’s making a ton of urine. We got moved to the transplant floor out of the PICU.

Kiran is doing overall pretty good. Pain is sometimes an issue but mostly he’s enjoying basically unlimited tablet time. Rachael’s recovery has been painful. She is such a champ up and walking the hallways despite pretty intense pain. She’s our hero and we are so grateful for her and her wonderful kidney!

Thank you so much to everyone! We hope to continue to make progress- donor and donee!

12/07/2022

Latest update from Kiran’s mom:

Kiran is doing well in the PICU. We’ve managed to get his pain at an ok level and he was able to sleep some. He’s up watching Peppa Pig and eating ice so we’ll call it a win.

Kit the kidney is blowing all our minds. His creatinine has dropped from about 10 before surgery to 0.3 🎊😳👏. Even when he was born it never dropped below 1, and that was left over from my kidneys filtering his blood before birth.

He may need a blood transfusion, different meds, etc., so we’ll be in the ICU for awhile.

We are in AWE of Rachael. Thank you thank you thank for giving him Kit. His BUN (measure of toxins in your blood) is below 10 (which is normal). It has literally NEVER been normal in his whole life. Typically it’s in the 30/40s and it took 13 hours of dialysis and a carful diet of renal formula to get it to there. Her gift of life is truly blowing us all away.

Thank you everyone. We feel the love and prayers.

12/06/2022

Rachael’s kidney is hooked up to Kiran and already making urine! Go kidney go!

Rachael named it “Kit” before transplant and gave it lots of pep talks, so it must have worked. Keep going Kit!

Rachael is out of surgery, doing well, and in recovery. She’ll be admitted to the nephrology floor for the next couple of days to recover.

They’re taking out Kiran’s dialysis catheter and the the urologist will hook up the ureter to the bladder.

Thank you so much for all your messages of support and prayers! What a wild ride! Lots of happy tears being shed in Cincinnati today. Please continue to pray for a smooth recovery for both of them.

Address

Indianapolis, IN

Website

https://cota.org/campaigns/COTAforKiran/blog/our-story

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