I went back on dialysis in October 2017, and as I write this, the wait for a donor could easily be over ten years. That means I'm looking at spending the entirety of my fourth decade on dialysis.
Literally tethered to a machine for nine and a half hours a day, popping a variety of pills to account for assorted concerns, and living on a low-phosphorus, low-potassium, high-protein diet. (That's the suckiest part, btw. No dairy, no nuts, no chocolate, no beer. Pity me.)
A few people had offered to be tested back when I first went back on dialysis, but I wasn't ready to think about it; I was adjusting to the news, getting used to being back on dialysis, and I just couldn't deal with the inevitable questions and eventual disappointment that comes with testing potential donors.
It's now been 15 months and I'm done. Done with the dietary restrictions. Done feeling bad. Done telling Max that we can't do things because “Mommy doesn't feel well.” Done putting off so much of my life because of this. It's hard to conquer the world when you have to be in bed by 8!
I'm ready now.
Can you help?
If you're interested in being tested to be a donor, start here. Fill out the questionnaire. (My full name is Elizabeth Porter, my birthday is July 4, 1977)
Watch this video to learn more about the process (and they're going to ask you to watch if before you fill out the form anyway, so I've stuck it here to make it easy.)
That's it to get started.
I don't necessarily want to know if you decide to fill it out; people will be ruled out early on, and it's heartbreaking every time someone is told they can't donate.
My transplant clinic is UCSF in San Francisco; that's where the surgery and follow-up appointments will take place. Please don't let travel costs prevent you from being tested if you're moved to do so. We'll figure it out.
Even if you can't donate, please consider sharing this post with your networks; you never know who might feel compelled to help in this way. You see stories of people wearing sandwich boards on highways, t-shirts at Disney World, and magnetic signs on their cars. If those people can find donors, why not me?
As always, I'm happy to answer questions about End Stage Renal Disease, life on dialysis, or transplant (from the patient's experience)
Thank you, from the bottom of my heart (and my kidney, even though that's not worth much)
Learn more about me and my life on dialysis with these posts:
Hi Elizabeth,
I donated to someone who is a 4-time recipient — your donor’s coming! I started a website so people could learn about becoming a donor from people who’ve done it. It’s a way to help educate and promote living kidney donation. I’m hoping if people learn the details from a donor’s perspective and read donor’s stories they’ll consider becoming a donor, too. Feel free to share the site with folks … you never know who’ll be inspired to give, hopefully, to you! teamshareaspare.org
(and be sure and “like” our FB page, too!)
I’m part of the Mom 2 Community and I filled out the donor form. I’m Canadian, maybe you’ll get the part of me that says “eh”!
Hi! I shared this on Facebook.
I received my kidney back in August from my second cousin. My function was down to 10%, and I had a peritoneal dialysis catheter implanted and awaiting the inevitable if my donor didn’t work out. Thankfully it did work out, and things are going great!
Do not lose hope – your donor is out there. Much love to you.
Karen
Lizz, This will happen. I can’t imagine how frightening it is but hopefully it feels good just having made the decision this is the course you want to take. Hope a suitable donor is found soon!