Nov 21, 2017 Latest post:
Mar 20, 2019
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.
Linda's journey starts with her paternal great-grandfather, Heinrich (Henry) Lahr who died at a young age of Polycystic Kidney Disease - most likely it was not really known about at that time. My maternal grandmother Eva Lahr-Krech and her sister Lena were both diagnosed with Polycystic Kidney Disease. Unfortunately, when my grandmother became quite ill from PKD back in 1960 dialysis was experimental and from what my Dad told me cost $1000 a session. My grandmother passed away from PKD at the young age of 48. PKD was passed down to my father who had quite a few health issues with his kidneys along the way. He was a factory worker with a lot of heavy lifting which was not good for his enlarged kidneys. Dad's kidney function declined down to 5% back in 1983 when they removed his kidneys completely prior to having a donor kidney for transplant which meant he had to go on dialysis right away. Dad's time on the waiting list was just about 3 years when in 1986 he received the call from the U of M in Minneapolis where Dr. Najarian would perform his transplant. Unfortunately Dad's kidney transplant failed within just a week or two and he had further complications that they were able to get back under control but sadly that kidney had to be removed. Dad remained on dialysis until October 1994 when it was found he had a staph infection that went to his heart and put a hole in it the size of a quarter. The doctors were amazed he was still alive but that day when he went to dialysis everything crashed. That was his last time back on October 17th, 1994.
So back to me, I've known, along with my two sisters, that I have both Polycystic Kidney and Liver Disease since I was 12 years old. I knew someday I would need dialysis or a kidney transplant. A few years ago I started reading about Pre-Emptive Transplants and Living Donor transplants where the goal was to do the transplant while you were still healthy enough not to need dialysis because you would have a better outcome. Your function still needed to be low enough that your insurance would cover it which mine is. My function in June was at 17% and it needed to be 20% or less to get a transplant evaluation. My evaluation was then set for the week of August 28th. I was officially notified on September 13th that I was selected as a kidney transplant recipient and would be able to undergo the surgery. What this means is that I am now on the waiting list with UNOS and in addition, if I have friends or family that are willing to be tested to be a donor they were then able to begin that process.
This is the beginning of the next chapter in my life....the search for a match, a match approval, a surgery date to be set between and my possible donor and then the recovery. I will be on immuno-suppressants for the rest of my life so that my body does not reject the new kidney. For me, the transplant surgeon, Dr. Mikel Prieto, wants to remove both of my native kidneys at the same time as my transplant surgery. I am actually looking forward to that because my kidneys are each the size of a football and they are very uncomfortable with all the cysts hence polycystic, meaning many....they can burst and can become infected as well and I've had more issues lately so we are keeping a close eye on that and making sure I stay healthy now so I can undergo my surgery when the time comes.
All prayers are appreciated as I begin this journey....