Mar 16, 2021 Latest post:
Apr 13, 2021
PLEASE NOTE: Caring Bridge is a free site and does not require donations to keep Alex's page active. Thank you.
Hey there! Alex Dungan here.
I’m writing this letter to inform my friends, family, and colleagues of the curve ball that has recently come at me and my family. We have had a significant outpouring of support, questions, love, well wishes and requests for what people can do for us...thanks to all!! Tamara and I decided to put together this page to keep people informed of how I am progressing through this journey and to inform people of how they can help if you wish to do so. We’ll keep this up to date with as much info as we have it. And remember, as I always have, I’ll take your call..........
But at the most basic, this site is to get the word out to help me find a kidney as I need a kidney transplant. Although it is not a cure, it is the most successful treatment of my condition.
As everyone’s life has changed significantly over the past year, I had the added complication of being diagnosed with a rare autoimmune disease called FSGS (focal segmental glomerulosclerosis) via a kidney biopsy. I’d never heard of it, didn’t know it existed and had no idea of what it was or did. That diagnosis was given on on February 2, 2021.
I started taking medications to address the FSGS, then about 25 days later I got a call that my lab work was bad and I should go to the hospital immediately to have it verified. It was verified —bad.... 6 hours later I was undergoing hemodialysis and upon release from the hospital six days later I had been diagnosed with end stage renal disease (ESRD).
My kidneys have failed and I need a kidney transplant.
Yes, it came on quickly, however we knew some thing was happening toward the end of summer 2020, but because of COVID, it was difficult to get into specialists. We continued to push forward as best we could with telemedicine appointments and tests, but nothing conclusive until recently.
To say we are shocked, scared, pissed off and overwhelmed is an understatement. The strange thing about this disease is that with the dialysis I feel okay and can function pretty normally, albeit on a different schedule.
Yes there are some rough days mentally for all of us, but I still am the same Alex.
Trying to keep my chin up, trying to keep a sense of humor about it, and work the system of treatment and transplant while taking care of my family. What I am finding out is it just takes time to navigate the system, because it has to be very precise and double and triple checked in order for the transplant process to be successful.
Here are the two options for transplant. We are working the transplant process now and you can check back here often to see where we are in the process and how you can potentially become a donor for me. My blood type is O negative but that doesn’t rule out anyone as there are other qualifying factors. If you or someone you know wants to become a living donor, send Tamara and I a note and we will put you on the list. We are working on that system right now and will have more information as we progress
Living Donor – Individuals can donate 1 of their kidneys, and the remaining kidney is able to perform all of the body’s necessary functions. There are 2 ways to be a living donor – 1) direct donor (meaning your kidney would go directly to Me), 2) paired donor (meaning you are not a match to Me, but to someone else, who also has someone that is a match to Me – also called a donation chain). Benefits of a living-donor transplant: 1) less wait time, fewer complications for recipient (Me), longer survival rate as compared to a deceased organ donor.
Deceased Donor – There is a long wait list for a deceased donor’s kidney. At present time, there are over 93,000 on the waiting list. It could take 5 years to ever be called. Once called, you have just 24 hours to get to the hospital and have the transplant performed.
I also want to encourage everyone that reads this to consider becoming an organ donor as a matter of course.
We have added a couple of links in the “ways to help” button and will continue to update as we learn more ways people can help us.
Please SHARE this message far and wide. You can post it on social media, e-mail to family & friends, etc… The more people that know, the better chance I have of finding a living kidney donor. Again, if you or someone you know has an interest in becoming a living donor, send Tamara or I a note and we will put you on the list. We are working on that system right now and will have more information as we progress.
The goal is to find that amazing and generous person who is willing and wanting to be a kidney donor to save my life.