Figured I'd share my story.
Hello everyone, I'm Justin, from Southwest Missouri. Been a member of this forum for quite some time.
A little about me and my story.
9 year Veteran of the Army. OIF vet, medically discharged in 2012, diagnosed as a Type 1 Diabetic.
2017: Had appointments at the VA, nephrologist doc said my kidney function was around 30%, that I needed to make a real change.
2018: Yearly follow up visit with my VA nephrologist, said my function had rebounded to normal(ish). He released me to my primary care.
2021: VA PC pulled routine labs, noticed my kidney function had severely declined. This time I was around 17% kidney function. Said my diabetes was ruining my kidneys. Sent me to a local non-VA nephrologist. After speaking with the nephrologist he recommended started the process for dialysis. October 2021, had my peritoneal dialysis catheter placed, planning on externalizing it in March to start dialysis.
2022: January, had an infection at the catheter site, forcing the externalization of my catheter for immediate use. Started the in clinic training in March 2022, then home dialysis in April. The VA recommended I get on the transplant list, at a VA Clinic. I asked if I could have the transplant at a well known transplant hospital, they said yes. Gave me a list of local(ish) hospitals: St. Louis University, Missouri University or Kansas University. After doing research, my wife and I decided on KU. Started the listing requirements for KU, lots of testing. After my consults with KU, they decided to get me listed for a kidney and pancreas. Got listed in May 2022.
2023: Continued home dialysis during the rest of 2022. During 2022-2023 I received 3 back up offers for transplant. None of which actually happening. June 23, 2023 at 1130pm, while on our way home for a friends event, we received the call. They had a match for me, primary offer. Meaning this was it! Team said they would call in the morning around 9 with more information. They had to do more testing to make sure it was viable. Here's the kicker about a kidney and pancreas transplant, they come from a deceased donor. Meaning someone's loved one was on life support awaiting organ donation, and all organs that are being donated, to be placed with recipients. June 24th at 0730 we received the call to make the trip up, to prep. My wife and I made the 3 hour drive to KU, arriving around 1115, immediately being brought back and prepped. At around 230 pm, my wife stopped receiving notifications from my Dexcom for blood sugar updates. She and my parents went to ask a nurse for an update, finding me on a bed, prepped and headed back for surgery. I don't remember much about that day or the next few days. Woke up in ICU 2 days later, moving to a regular recovery room about a week after surgery. Being a veteran, my wife was able to stay at a place called The Fisher House.
https://hiddenheroes.org/resource/f...MI6IWV9JD6lAMVh2dHAR3h6jNfEAAYASAAEgLLl_D_BwE
My wife and I were able to stay here at no cost during recovery. Housing, food and transportation included. Most people have never heard of it, but it's been a life saver for us. July 3rd, I was released to go home, but needed to stay close for daily/weekly testing for a month or so. Mid August we got released to go home home. We continued weekly visits to KC, for lab work, medication changes. September 12th, I returned to work on light duty.
2026: Fast forward to today, here I am thriving. Medicated like crazy, but I'm alive. Almost 3 years post transplant. FOREVER grateful for that family who had to make the hard decision to donate organs to an unknown person/persons. I was not the only recipient of organs. I do not know much about my donor, but I do know he was a 17 year old male from the area. I struggle with survivors guilt some days. Here was a kid who had his whole life ahead of him, and me (at the time) a 39 year old hoping I'd make it another day.
I tell you this story, in hopes you will consider checking that box on your drivers license to be an organ donor.
But wait there's more! Millions of people are on the kidney transplant list awaiting a live donor. Meaning you can go though testing to donate a kidney (and parts of your liver) to a person on the waiting list, struggling with dialysis. Please consider being tested, you can change someone's life.
https://donatelife.net/donation/types/living-donation/
Thank you for taking the time to read my story, I fear I'm not the only one who's had a transplant on this forum. Just wanted to bring this to light for those who didn't know.
Hello everyone, I'm Justin, from Southwest Missouri. Been a member of this forum for quite some time.
A little about me and my story.
9 year Veteran of the Army. OIF vet, medically discharged in 2012, diagnosed as a Type 1 Diabetic.
2017: Had appointments at the VA, nephrologist doc said my kidney function was around 30%, that I needed to make a real change.
2018: Yearly follow up visit with my VA nephrologist, said my function had rebounded to normal(ish). He released me to my primary care.
2021: VA PC pulled routine labs, noticed my kidney function had severely declined. This time I was around 17% kidney function. Said my diabetes was ruining my kidneys. Sent me to a local non-VA nephrologist. After speaking with the nephrologist he recommended started the process for dialysis. October 2021, had my peritoneal dialysis catheter placed, planning on externalizing it in March to start dialysis.
2022: January, had an infection at the catheter site, forcing the externalization of my catheter for immediate use. Started the in clinic training in March 2022, then home dialysis in April. The VA recommended I get on the transplant list, at a VA Clinic. I asked if I could have the transplant at a well known transplant hospital, they said yes. Gave me a list of local(ish) hospitals: St. Louis University, Missouri University or Kansas University. After doing research, my wife and I decided on KU. Started the listing requirements for KU, lots of testing. After my consults with KU, they decided to get me listed for a kidney and pancreas. Got listed in May 2022.
2023: Continued home dialysis during the rest of 2022. During 2022-2023 I received 3 back up offers for transplant. None of which actually happening. June 23, 2023 at 1130pm, while on our way home for a friends event, we received the call. They had a match for me, primary offer. Meaning this was it! Team said they would call in the morning around 9 with more information. They had to do more testing to make sure it was viable. Here's the kicker about a kidney and pancreas transplant, they come from a deceased donor. Meaning someone's loved one was on life support awaiting organ donation, and all organs that are being donated, to be placed with recipients. June 24th at 0730 we received the call to make the trip up, to prep. My wife and I made the 3 hour drive to KU, arriving around 1115, immediately being brought back and prepped. At around 230 pm, my wife stopped receiving notifications from my Dexcom for blood sugar updates. She and my parents went to ask a nurse for an update, finding me on a bed, prepped and headed back for surgery. I don't remember much about that day or the next few days. Woke up in ICU 2 days later, moving to a regular recovery room about a week after surgery. Being a veteran, my wife was able to stay at a place called The Fisher House.
https://hiddenheroes.org/resource/f...MI6IWV9JD6lAMVh2dHAR3h6jNfEAAYASAAEgLLl_D_BwE
My wife and I were able to stay here at no cost during recovery. Housing, food and transportation included. Most people have never heard of it, but it's been a life saver for us. July 3rd, I was released to go home, but needed to stay close for daily/weekly testing for a month or so. Mid August we got released to go home home. We continued weekly visits to KC, for lab work, medication changes. September 12th, I returned to work on light duty.
2026: Fast forward to today, here I am thriving. Medicated like crazy, but I'm alive. Almost 3 years post transplant. FOREVER grateful for that family who had to make the hard decision to donate organs to an unknown person/persons. I was not the only recipient of organs. I do not know much about my donor, but I do know he was a 17 year old male from the area. I struggle with survivors guilt some days. Here was a kid who had his whole life ahead of him, and me (at the time) a 39 year old hoping I'd make it another day.
I tell you this story, in hopes you will consider checking that box on your drivers license to be an organ donor.
But wait there's more! Millions of people are on the kidney transplant list awaiting a live donor. Meaning you can go though testing to donate a kidney (and parts of your liver) to a person on the waiting list, struggling with dialysis. Please consider being tested, you can change someone's life.
https://donatelife.net/donation/types/living-donation/
Thank you for taking the time to read my story, I fear I'm not the only one who's had a transplant on this forum. Just wanted to bring this to light for those who didn't know.
