Scott Needs a Kidney
How can you help?
Get evaluated to be a living donor.
This would be the best scenario for me and an incredible act of generosity and benevolence from you.
If you are serious about finding out about the donation process, all donation inquiries are handled by my transplant center at Cedars-Sinai.
This packet provides more information to you about what it means to be a living donor, answers frequently asked questions and lists some of the immediate health disqualifications.
Simply go to this site and click on the link that says "Donor Self-Referral Form".
After filling out some basic info on that form, a Living Donor Patient Service Representative will reach out to follow-up and provide any information about the process and perform a Medical History Questionnaire.
(Note: Response to my Facebook post on May 18 was tremendous and, as a result, the transplant team is a bit back-logged. They will be going through the list in the order submissions we're received).
The form may ask you for the recipient's date of birth or phone number. My date of birth is 05/06/1988 or May 6, 1988.
Register to be an organ donor.
If you're not already registered to be an organ donor, consider doing so the next time you renew your license. Or, if you have an iPhone, you can even do it within the Health app. Or find out how to do it online in your home state.
It's easy and costs you nothing. You can potentially save multiple lives If anything should happen to you. And, while I won't get your kidney, any increase in the availability of kidneys is good for all of us currently hoping for one.
This is the easiest and least impactful way you can help others. If you are healthy and able, please consider checking RedCross.org for local blood drives or donation centers near you.
I required multiple transfusions during all three of my surgeries and hospitalizations, and blood availability is always an issue. Giving blood saves lives.
I just turned 35 years old. I am an imaging engineer working in motion picture post-production, a playing card artist, trivia host, and 2022 US national champion in mölkky (and going to Finland for World Mölkky in August 2023).
Unfortunately, I've been dealt a shit hand of health. But fortunately, up to this point I've been blessed with tremendous health care and very fortunate outcomes despite many complicated and challenging surgeries since I was first diagnosed in 2018.
While I am quite thankful for where I am (because things could have gotten much worse, much quicker), things are finally getting more and more dire and my body is finally giving in. My kidneys are no longer functioning and I am going on peritoneal dialysis (PD) in June.
What's Wrong With Me?
When I was 28, I was diagnosed with Birt-Hogg-Dube Syndrome, a rare genetic mutation of the FLCN gene that can lead to kidney tumors and chronic kidney disease.
Since 2018, I have undergone three separate "debulking" procedures. These were all open partial nephrectomies in order to take out the largest of the tumors. Each surgery has been more and more complicated and left less kidney tissue behind to keep my body running. After a few years of miraculous performance despite only about 30% of my kidneys remaining, my body is finally giving in and I am about to start on dialysis.
In January 2023, I was able to get listed on the UNOS organ donor waitlist, but the wait for a deceased donor kidney is estimated at 8 to 10 years.
The best option for me is to receive a kidney from a living donor.