I'm not even sure how to begin so I'm just going to go right into it. My friend Alex needs a kidney. Not two, just one will do. What better time than the season of giving to change someone's life?
This is hard for me to write. It took my living in town like ten years to meet "my people". I have a lot of people I'm friendly with and I have a LOT of acquaintances but I finally found my people over the past two years or so. Alex is one of them (as are her husband Mike and her daughter). She is the one I spend the most face to face time with, and who we hang out with most, as families, with. We're the unicorn "only child" parents. When everyone else has two or more, closer to four, we're the one and done crew. Six fits quite nicely in a booth at Grand Lux Cafe, where you can find the six of us, for the early bird special, most Saturday evenings. Apparently, Alex isn't on time for anyone, but her butt is in that booth at six o'clock sharp, for me and my senior eating habits. Anyone that knows me, is fully aware that punctuality is my most prized quality in other humans. B still tells people that his ability to be on time or early is why I married him.
Back to Alex. I love her. And Alex has Polycystic Kidney Disease. I'm not going to go into a whole long boring thing. I'll just give you the basics- Polycystic kidney disease (PKD) is a genetic disease (passed from an affected parent to their child) causing uncontrolled growth of cysts in the kidney eventually leading to kidney failure. It affects all racial and ethnic groups equally.
There are two types of PKD: autosomal dominant (ADPKD) and autosomal recessive (ARPKD). ADPKD is the more common type and affects more than 600,000 Americans and 12.4 million people worldwide. ARPKD is a rare form of the disease that occurs in 1 in 20,000 children worldwide.
A typical kidney is the size of a human fist and weighs about a third of a pound. PKD kidneys can be much larger, some growing as large as a football, and weighing up to 30 pounds each. The number of cysts can range from just a few to many. The size of the cysts can range from a pinhead to as large as a grapefruit. Although the primary sign of PKD is cysts in the kidneys, there are other symptoms that can occur in various areas of the body.
You can find info here- https://pkdcure.org/
That's the short of it. I know that I can go on long as it is, so I don't need that taking up space. The bottom line is- Alex needs a kidney. And she needs it like yesterday. Apparently things can go downhill fast with this and she's quickly approaching the bottom of the hill.
Alex is very private, (how I'm so attracted to friends who are like a vault, I don't know). For her to let me put this out there means the disease has progressed to a point where she has no choice but to let those of us who love her to put her business out there for help. So here I am, throwing her business out there. There is no more luxury of being tight lipped in this case.
Alex is a mom, a wife, and an awesome friend. She's a great cook, who makes enough for a village when she only has one kid, and is always happy to share the leftovers. She loves her bags and shoes like they're her other babies, but didn't hesitate to hand over a vintage Valentino when I needed an accessory for my one and only tv background actor debut. She will watch your kid for hours and treat them like they're her own. She will take you on a tour of Brooklyn, taking on rides at Coney Island and then introducing you to the REAL Russian market. And like I said, if she really wants to show her love and affection, she'll eat with you at a ridiculous hour and even be on time for it with a smile. She'll also make sure to text you every time she comes across a five foot metal chicken you've been yearning to buy as outdoor home decor.
Once she gets a kidney, she'll even attempt to make your dead mother's spectacular turkey recipe. Err, maybe that's just for me? Really though, she will be much appreciative and I'm fairly certain she'll bake you her double chocolate cupcakes with homemade buttercream frosting. I *know* she doesn't just make those for me. She'll also cut your onions (for brisket cooking) faster than the guy on the Ginsu commercial so you don't have to wear ski goggles (that also might just be for me).
You can get tested to be a living donor. Living donation is when a living person like you chooses to donate their organ to someone in need of a transplant. More than 6,000 organ transplants a year are made possible by living donors, with kidney being the most common organ transplanted.
There are many reasons living donation is better than the alternative (deceased donation). These reasons include:
- Scheduling the transplant at a time optimal for both yourself and the recipient.
- Better genetic matches between yourself and your recipient may decrease the risk of organ rejection.
- Kidneys from living donors usually work immediately, as the kidney is removed from a healthy donor and transplanted right away in an operating room.
- The gift of an organ can save the life of someone in need. The experience of providing this special gift can serve as the ultimate positive aspect of the donation
Living donors must be in good overall physical and mental health and at least 18 old. Medical conditions that may prevent a living kidney donation may include: uncontrolled high blood pressure, diabetes, cancer, HIV, hepatitis, acute infections or a psychiatric condition requiring treatment.
When considering if becoming a living donor is right for you, it is important to understand the process. To start the process, you will contact the transplant center where your recipient is listed. You don’t have to tell the recipient you are getting tested if you do not want to.
The first step will include an initial screening and blood tests to determine if you are compatible with the intended recipient. If you are not compatible, there may be other options to donate (see types of kidney donation). If you are a match, a nurse coordinator will contact you to continue the process. As you navigate the process, you will be assigned an independent donor advocate (IDA) who is not part of your recipient’s medical team. Your IDA will assist you through the process, answer your questions and focus only on your well-being -physically, mentally and emotionally. All conversations with your IDA are completely con fidential; your recipient will never know the questions you ask or the concerns you have.
FOR ALEX:
Go to https://cornell.donorscreen.org to fill out your information. You need to do that at least seven days in advance of your appointment. It takes about 5-10 minutes to fill out.
You need these answers for direct donation:
Name: Alexandra May
DOB: Feb 25, 1975
Not on dialysis but needs transplant
And yes she's with Cornell currently
I'm going to thank you in advance for reading and for possibly screening. I'm going to think positive and just know she's going to get a kidney. But I still need your help. If you could share this entry as much as possible, I'd really appreciate it and I will update as I get any further information. If you have any questions or whatever (or a kidney), email Mike (her husband) at kidney4alex@aol.com
