Advocacy

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Life given, life taken

It saddens me to read the headlines and watch the news reports about the four Chicago-area transplant recipients who have contracted HIV from their deceased transplant donor. The very thought of what has happened is heavy on my heart.

Just as the chance of a healthy life is given, it is snatched away.

I can't even imagine how the recipients and their families feel. The emotions of grief and anger, come to mind - a gift that was so freely shared, selflessly given to save a life, has now turned into a medical endeavor ever-increasing in complexity. The transplants these four people received, new organs intended to save their lives, might now mean a quicker route to death's door.

While events like this are very rare, it was one of the outcomes (ie. receiving a transmittable disease) that I had to prepare myself for, and accept, before I could go forward with a kidney transplant. It was extremely important to me to be prepared for every single possible outcome before I underwent a transplant.

I made the conscious decision to wait for four years on dialysis before pursuing the transplant - I believed, and still believe, that knowing I was at peace with whatever happened would give me the best possible chance.

No amount of peace has been afforded to the four transplant patients in Chicago. No fleeting opportunity for possible health has been afforded. Dreams of futures have become nightmares of what seemed almost impossible...

I'm sure they never expected to receive an organ along with a good dose of HIV - my heart goes out to all of them, and like most of you, I wish I could do something... but the only thing I can do is hope, wish, pray that there will be some way...

Please, if you or anyone you know have ever been touched by organ donation, send good thoughts (and prayers) their way - they'll need it.

Today's Kidney Education: "In 1994, the Centers for Disease Control (CDC) issued guidelines for transplant professionals to identify and try to minimize the risk of transmission of HIV. From the time those guidelines were issued until the present instance, there have been no documented instances of HIV transmission through organ transplantation in the United States." OPTN/UNOS Statement Regarding HIV and Hepatitis C Transmission through Organ Transplantation

Chronic parenting (with honesty)

Its funny (not ha-ha funny) how chronic illness has an effect not only on oneself, but also on everyone else around. In particular, my having chronic kidney disease/failure/transplantation has affected my son in ways most people can't comprehend.

I've never not had kidney issues for his entire life. He came into my life a mere 3 years before my kidneys completely failed and he has had to grow up in a lot of ways many children don't until they're older.

For example, at 3 years-old my son could tell you more about kidneys, what they are, where they're located in the body, what they do and why they're important, than most adults know. At age 4ish I took him to see the Bodies... The Exhibition just so I could show him what a kidney actually looked like. And, while other children close to his age were pointing and snickering (much to their parents embarrassment) at the displayed "unmentionables", my son was busy informing other visitors about kidneys. I was impressed.

How have I raised him to know and understand without being afraid? How have I mustered the emotional strength to explain it all to him without completely breaking down?

I will be talking more about parenting with chronic illness on the new blog that I previously eluded to. I'm also happy to say that WebMD.com is the sponsor of the blog, as well as the company who asked if I'd be one of their first parent-bloggers for their new site expansion. I couldn't say no!

The blog is due to debut any day, and as soon as it's ready to launch, you'll be the first to know!

Today's Kidney Education: The kidneys are sophisticated trash collectors - Your Kidneys and How They Work

MyKidney Welcomes NaBloPoMo 2007

Welcome, My Kidney Blog Readers, to NaBloPoMo! NaBloPoMo 2007 is National Blog Posting Month and a twist on the marathon that inspired it: National Novel Writing Month. Essentially, its an excuse for me to flood your RSS reader with posts on every single day of the week, instead of just when I feel like it.

What would you like to read about? What topics shall I discuss? I'll take suggestions - otherwise you're stuck reading what I choose to write about :)

If you're writing a blog, please let me extend the invitation to join the NaPoBloMo website (its free!) And, if you do, let me know what your blog's URL or feed is, so I can keep up with you, too.

Today's Kidney Education: Did you know that according to WebMD, 68 Americans receive life-saving transplants every day, but another 18 die while on the waiting list? Now, watch the WebMD video "Less Invasive Surgery Makes Kidney Donation Easier".

Exciting News!

Tagged:  

Hello, World.

I know I haven’t been here much lately, but I promise, I think about blogging every day! Thinking counts, doesn’t it?

Exciting News! I was approached recently by an internationally recognized, industry-leading website that provides health-related information on the web and asked to be one of their very first bloggers for their new website expansion. I was not only surprised, but also honored to be invited! They found both of my websites and approached me after reading them. The content of the new blog will be based on subject matter which relates to both my MyKidney.com and Krississippi (dot) com websites, but in a completely new/different way. I think everyone will be pleasantly surprised. I will write more about this new project as soon as the blog launches and of course I’ll let everyone know the URLs and feeds. What an opportunity to have come my way, especially when I wasn’t searching for it!

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