December 23, 2024

My birth and first transplant

I’ve always been told and known I’ve had a unique story to my life from the beginning. I was born with my kidney problems and from the very beginning things were intense. I was born with a rare condition called PUV or Posterior Urethral Valves which basically means I had a blockage between my bladder and kidney and could never urinate in the womb properly and the blockage slowly destroyed my kidneys before I was even born. The poor guys never stood a chance.

In the United States PUV is actually the most common cause of lower urinary tract obstruction in male neonates. The chances of it happening is one in every 25,000 births. So it’s a fairly rare issue. In today’s age they usually diagnose PUV in the womb with sonograms and in some instances can actually correct the issue before the child is born. But I was born in 1989 which was before that sort of tech existed. One thing my family has always told me that was irritating was my mothers doctor could see that my bladder was completely full every single time they did a sonogram and never questioned it really despite that being a huge red flag.

I was born on March 15th 1989 and had to spend the next couple months in the neonatal unit at the Children’s Hospital of Austin. I was born with Hypertension as a result from my kidney issues and had to be heavily monitored. I had bladder surgery and ostomies placed to drain my bladder until I could get a transplant. It’s strange, I have a very strong memory about particular things and can still remember having bags attached to my hips.

I can only imagine how my parents got through those first few years. I was stuck, poked, prodded and worked on so much the first few months. I had IV’s in my feet, side of my head you name it. I always think back to how strong my family and especially my parents were during that time. I try to tell myself if they could be strong and endure that I can get through whatever issue I’m dealing with at the moment. Needless to say, I came into this world fighting.

So within the first couple weeks after the initial surgeries were done to keep me stable my parents were informed that I’d need a kidney transplant. My father is over 6ft tall and had small kidney problems growing up so unfortunately wasn’t able to donate his considering how little I was. But my mother is petite and had healthy kidneys and didn’t even hesitate. Now I gotta make a little note about that. I know everyone feels they have the best mom in the world of course. But my mother didn’t even give it a second thought and said what do we need to do to make this work. She literally saved my life and that pure unquestionable love was and still is inspiring. She was a viable donor and said let’s do it!

Now this is another part where things get interesting. I had my kidney transplant in April of 1990, less than a month after I had turned a year old. Nowadays they won’t do a transplant on a child that age. It’s deemed too risky and you have to be a certain weight. The youngest people having transplants today are a minimum of 2 years old. So that there makes me even more unique. It’s like I was a test, a pioneer in kidney transplants for kids. And lucky for me the test was an astounding success. The transplant went smoothly and my mother’s kidney was put into my lower right abdomen. It’ll be crazy to think about for some but Austin Texas had no pediatric Nephrology unit in those days. So we had to go to UTMB in Galveston Texas for the actual transplant and I’d have to continue to go there until Austin eventually got big enough to host specialty doctors. My parents had to learn all this new medical terminology, meds and routines. I had to be tube fed for a good while and my parents even learned how to do that. It was a new lifestyle that we were all having to adapt to.

But that is how my first year and a half of life was in a nutshell. Part of the reason I’m starting this blog is to create a resource for anyone who needs help with these things. Like I said there was no manual for this kind of life. My parents did so amazing at raising me and I want every parent or family member of a child who’s facing anything similar to read this and understand that while my journey and many of ours aren’t easy, they can be manageable and amazing. Like life for anyone there’s ups and downs. But some of us have extra layers.

I for one am kinda thankful for my problems and my journey. Without it I wouldn’t have the mindset nor the perspective I have. And when you’ve literally faced death and fought your way back you become much more thankful for small things almost everyone takes for granted. I wouldn’t trade that perspective for anything. I’ve also dealt with deep severe depression, PTSD and anxiety from all this as well, and I’ll be diving deep into these topics as I write more. I have a passion to turn this negative into a positive. I’ve always been told you have to make the best out of the cards you’re dealt. And I intend to turn mine into something truly great and inspirational.

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