Saturday, December 1, 2012

A Kinder Kidney

I wonder what it would be like to wait for someone to die, so I could live.  And to possess the knowledge that someone else waiting on the list, was also wishing, holding their breath... and in a better place in line. I could see this battle waging in my head in which I let slip a little thought or prayer to God or the Universe that the person ahead of me not make a good match. The idea that wishing for someone's misfortune, even for a split second, when I finally pay off a college loan, or after reaching a goal, or maybe while I am playing with a future grandchild and I send off a great need and yearning to be spared so I would have a chance to see this child grow, would cause a mountain of guilt in me.

My mom's best friend, Joanne, lives with this uncertainty every day. She has been on a kidney transplant waiting list for 3 years. She tells me "the wait can take up to six years... if you are lucky enough to survive until then."

Joanne's friends and family are working hard to bring awareness about becoming a live donor, because the transplant list is long and odds of surviving a transplant are higher with a live donor kidney, as opposed to waiting for a deceased donor organ.  I think most people might associate the phrase 'organ donation' with organs from someone who has just passed away. I know I did.

I have been an organ donor since I realized I could make that choice in the event of my untimely death. I have the little heart on my driver's license. I like having it there, but it wasn't the department of licensing that made me aware of that option. It was my friend and coworker.

Ruth was the first person I had ever met who was on the kidney donor registry, as a live donor. She had no family members that needed a kidney. A friend hadn't convinced her to do it. She just did it because she wanted to help someone live. I think this the best gift... the unconditional gift of life.

And because I love statistics and research, I did a little digging:

According to the National Kidney Foundation (NKF) 
as of August 31, 2012:

There are currently 115,193 people waiting for lifesaving organ transplants in the U.S.
Of these, 93,148 await kidney transplants.
Last year, 16,812 kidney transplants took place in the U.S. Of these, 11,043 kidney transplants came from deceased donors and 5,769 came from living donors.

Joanne Prokop 2010
        My mom's friend Joanne Prokop has Polycystic Kidney Disease (PKD). She was diagnosed with PKD at the age of 30, after the birth of her third child. She was having trouble controlling her blood pressure so her doctor ordered an ultrasound, which confirmed the diagnosis.

At that time, her doctor advised living a healthy life. Joanne complied, taking medication and following the doctor's advice, managing her illness, but she has been unable to stop the progression of the disease.

Despite her commitment to healthy living, Joanne has progressed into stage 4 kidney disease.  Her kidneys are no longer functioning properly and are estimated to weigh about 20 pounds each.

"A normal kidney is the size of a human fist and weighs about a third of a pound. However, with the presence of PKD, cysts develop in both kidneys. When many cysts develop, the kidneys can increase in both size and weight, sometimes weighing many pounds each.  There may be just a few cysts or many, and the cysts may range in size from a pinhead to the size of a grapefruit." - PKD Foundation.

At 54 years of age, her disease is catching up with her, which is why she is eager to get the information out to as many people as possible, because as more donors step forward, more lives will be saved.

I am sure there are hundreds of thousands of family and friends of the people on the transplant waiting list that feel the same way I do. They want their loved ones to live.

Joanne is a wonderful person and I know I don't want to think of what life would be like without her, but we can't help worry.

In writing this post, I don't expect everyone to jump up and come to the rescue... although that would be nice. I feel compelled to do something. I can't donate my kidney because of health issues, but I can write a blog and put a thought out there and bring more awareness to live organ donation.

While talking to my best friend about this, she informed me that she and her daughter were talking about my upcoming blog topic and now her daughter is very interested in the idea of being a kidney donor. I love it that she is thinking about it! My blog caused two people to talk about it and then maybe one of them talked to their husband and maybe he talked to someone else about what his wife was considering.

I believe it doesn't matter how we help, what matters is that we help... in any way that makes sense to each of us.

So if you are thinking about this and about people like Joanne, I am happy.

And because I love research, here are more statistics, as daunting as they are to read, I think it is important to be informed.

According to the NFK, on average:
Nearly 3,000 new patients are added to the kidney waiting list each month.
13 people die each day while waiting for a life-saving transplant
Every 10 minutes someone is added to the transplant list
Last year, 4,903 patients died while waiting for a kidney transplant.
Acceptable organ donors can range in age from newborn to 65 years or more.

I know this doesn't have a great deal to do with art, but it has everything to do with life.

For information about kidney disease, visit these informative organizations:

The program Joanne is enrolled in:
Virginia Mason Hospital & Medical Center, Seattle | Seattle's Top Doctors are at Virginia Mason

For information about becoming a donor:

These are just a few of links available to find information. Google "kidney disease" to find a wealth of information about PKD and "becoming an organ donor" to access organ donor programs.

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