Share on Facebook

In the midst of preparing for her trip to California for her ride in the 2012 Rose Parade, Mary managed to squeeze in an update of her book with “Chapter Twenty-Seven: An Alternative Route.” She says, “My aim for this latest chapter is to give hope and options to people who are unsure of what to do when pain is dealt with day in and day out! I am eager for your thoughts and feedback—both positive and negative!”

Here’s an excerpt.

“In the 1980’s and 1990’s, I had my fair share of tears, anger, bitterness, happiness, laughter, and joy as my life revolved around failing kidneys, kidney transplants, chronic kidney rejection, and urinary tract issues, but it was my parents and especially my Dad that took care of everything.”

Share on Facebook

Grab the calendar. Take out the permanent marker. Let us get ready for “The Countdown.”

Yes, you read it right. “The Countdown” to the groundbreaking and extraordinary Rose Bowl Parade held on January 2, 2012 in Pasadena, California has officially begun.

**CHEERING**

Approximately 24 days from today, The Rose Bowl Parade Donate Life Float, which is the ultimate testament and dedication to the power of organ donation and transplantation, will weave its way through Pasadena.

Approximately 19 days from today on December 28, my Father and I will board an airplane from cold and frigid New York to arrive in sunny and warm California to kick off the pre-Rose Bowl Parade and Donate Life festivities and, most importantly and treasured to me, to meet my UKRO extended family members face-to-face to promote and spread their mission to others.

Approximately 6 months ago, I received the official invitation from the esteemed and exceptional organization, UKRO, that I was being selected as their 2012 Donate Life Float Rider. After just about falling out of my chair with disbelief, shock, and this humbling sensation that I was being chosen for such an honor and chance of a lifetime, excitement surged through me. I never imagined that I would be chosen by such an outstanding organization as UKRO, which is a charity in a league of its own in terms of recognizing and working towards a better future for individuals suffering from chronic kidney illnesses through research, science, and education. Heck, I honestly never even imagined that I would survive my complicated and complex medical history. From the age of 7 months, I suffered renal agenesis/chronic kidney failure and endured peritoneal dialysis, blood transfusions, bone issues, two kidney transplants, and a string of other medical procedures. I face a lifetime of taking immunosuppressants and random medications.

But, here I am to say that I am a survivor. More than that, I somehow view the Rose Bowl Parade Donate Life Float and UKRO as all about survivorship. They remind me that anything and everything can and will happen from hard work and the ultimate strength that comes from the weakness and challenges that occur in life.

And, so, here we are for “The Countdown.”

I must confess that my excitement has been simmering or sizzling in me just beneath the surface since July, when I rather impatiently started the waiting game for December 2011 and January 2012. Six months ago felt like forever, but now forever has turned into right here and right now.

Here's the coral dress that I absolutely fell in love with!

I personally started my countdown the weekend after Thanksgiving when I stumbled across photos of last year’s float riders decked out in beautiful, fun, glamorous, and colorful gowns at the Float Rider Dinner and Donate Life Gala. After staring dreamily at these photos of gorgeous dresses and happy, beaming, and bright faces, my countdown had kicked off and it was time for me to get in motion by, no surprise, dress shopping for these grand events that awaited me in less than a month. Truth be told, I was never a “girly girl” because I spent my life focused on my physical health rather than my physical appearance. My idea of “bedazzling” myself was dabbing chap stick on my lips and wearing a skirt, but just about all my co-workers, family members, and friends who learned that I was to ride on the Donate Life Float, insisted that it was time that I pampered and prettied myself up. Needless to say, dress shopping was quite the big leap for me.

So, off I went along my merry way and super early to such stores as Marshalls and T.J. Maxx to try to avoid the mad holiday shoppers. Marshalls was quite the disaster with the same cut and colored dresses squeezed together on only about two racks. I was disappointed, but certainly not derailed as I trekked off to T.J. Maxx. I knew that my perfect dress or dresses had to be hidden somewhere in their three or four aisles of gowns. My heart did a little thumpity-thump of excited expectations as I flipped through each dress and the hangers made a rhythmic clicking noise.

Most dresses were strapless, one-strapped, or spaghetti-strapped and black. While a woman always looks good in basic black, I was on the hunt for a colorful dress and particularly red, pink, or peach to stay true to my American-Born Chinese (ABC) heritage that believed these vibrant colors (particularly red) meant good luck and prosperity. Bottom line was, I wanted fun, jubilant, cheerful, lucky, and lively—to be true to the entire me and, most of all, my beliefs in life and my certainty that the Rose Bowl Parade, Donate Life Float, and UKRO were all about life and living to the fullest.

Here's the fun splashed colored dress. I love the colors and cut because they make me look taller and thinner!

This dress-shopping business was quite the workout and adventure for me. I made at least two trips to the fitting room and tried on at least ten dresses that entailed huffing and puffing, squeezing, zipping, and unzipping. I muttered to myself in between trying on dresses: “Okay, Mary, now you have to lose weight in addition to finding the perfect dresses!” Even the fitting room assistant looked at me with intrigue and amusement when I scurried for her help with the zipper of a coral-colored dress that I had fallen in love with. Ahhh…the shopping trials and tribulations of being double-X Chromosomal Female AND ABC.

Finally, after all that mayhem, I achieved my goal of two dresses. One was the coral-colored dress that I knew I was going to buy as soon as I eyed it. The other was a white dress with splashes of vivid colors on it. Both dresses were vivacious and completely me, though I still had to shed a couple pounds in order to fit comfortably in the coral dress. As anyone can clearly see from the photo, I sort of look like a squeezed pink piece of meat in it. Haha! But, the tightness of the dress only motivates me to lose the weight I need to be my fabulous and fun-loving self at the Rose Bowl Parade. Yes, I was one satisfied female customer. Yes, that girly side to me had emerged, but, alas, I was not done with my countdown kick-off.

Nope, I had only just begun.

The next day, my friend and I went to get manicures. I NEVER go dress shopping and it is only yearly that I get a manicure, and that is only because my friend gives me a gift certificate for a manicure and says the same words when she hands me the envelope: “You need to pamper yourself.”

It took me only minutes to choose a sparkly red nail color. I happily sighed and chatted freely with the staff members at the nail salon as well as with my friend, as I was given a massage of my hands and back and as my nails were shaved down and finally painted into sparkly red rubies.

Was I done yet? Nope. Remember, I had just begun this countdown.

A couple days later after work, I marched through the typical cold New York rains and winds to the hair salon. The first thing I said to the hairdresser as soon as I peeled my wet jacket from my body and snapped my umbrella shut was: “I picked a bad day to get my hair cut, didn’t I?”

She grinned and said: “You’ll be fine. We’ll take good care of you.”

I yammered to her about the Rose Bowl Parade and that I was counting down by doing this tweaked makeover. I announced: “I want a cute, basic, and simple cut, but with an edge. I am your experiment!”

I then confessed to her that it was time I bid farewell to my long and wavy dark locks of hair to reveal my proudly round face and chipmunk cheeks from immunosuppressant medications (particularly Prednisone). I no longer wanted to hide my childhood kidney health challenges. I was going to share the power of organ donation and transplantation with the world, and if that meant showing the real and rounded-out ABC me, then so be it, and major cheers and hoorays to that!

The hairdresser and I fell into a comfortable conversation about organ donation and transplantation and healthcare as she snipped, cut, and clipped away my dark tresses. One of her best friends suffered from Polycystic Kidney Disease and was in need of a kidney transplant. I shook my head sadly as my hair fell to the ground. It always amazed me how someone always knew someone else who had an organ transplant, and especially a kidney transplant, whenever I shared my story openly. I said to the hairdresser: “If she needs any help with anything on organ donation or transplantation, please tell her that she isn’t alone and she can even come to me if she needs to talk, or anything like that.”

The hairdresser smiled and our eyes met knowingly and sadly in the mirror. She said softly, “That’s really sweet.”

At some point towards the end of our conversation, we agreed that organs should be like hair, with the ability to grow back again once they malfunctioned. I thought to myself, if only science could achieve what seemed to be the unachievable, but then my thoughts shifted to UKRO’s efforts. Solving the problem means going to the core and crux of research and science. Extremely lucky and fortunate me—I was associated with UKRO and was about to promote their work and efforts when I landed in Pasadena, California.

The hairdresser finally handed me my glasses so I could see this new hairdo. I beamed exuberantly and hopped out of the chair feeling all reinvented, rejuvenated, and reinvigorated. With my two new dresses, my newly polished nails, and new haircut, I was a pampered and tweaked new me, more than ready to rock and roll into work, and thrilled to pieces for the impending Rose Bowl Parade and Donate Life Float 2012.

California and my UKRO staff members that have given me this unbelievable and amazing opportunity, see you in 19 days! Rose Bowl Parade and Donate Life Float with beautiful flowers and the most beautiful and inspirational people ever, see you in 24 days!

And, everyone else, I can’t wait to see all of you soon enough…for now, we are rockin’ and rollin’ with this countdown as we embark on a true ride and chance of a lifetime!

Share on Facebook

NPR explores the impact of changes in Medicare in the piece, New Rules May Increase Patients on Home Dialysis.

Here’s a doctor’s take on Dialysis Units – The Last Open Wards of Medicine.

Mark Neumann, long-time editor of Nephrology News & Issues explores the problems with dialysis in the blog, Issues Raised in ProPublica Series Not New. How Do We Fix Them?

Share on Facebook

This is the diary entry I didn’t want to write because I have to tell you that my Uncle Bob passed away a few weeks ago.  I have been thinking about this a lot, trying to figure out how to start this blog, how to include all the things I want to say.  I even tried writing some of this in a handmade journal in a Starbuck’s, without edits or stalling, just words and scribbles and arrows.  It helped a little, but in the end, it was time to go and the entry was not complete.  And when I left, I thought I saw my uncle sitting at a table outside.  The mind sometimes sees what it wants to see.  On the walk home, I saw three very real and very tiny lizards cross my path, felt the sun on my back and thought how beautiful the planet is.  And I thought about all the days that had led up to that one.  My uncle, a long-time diabetic and more recent kidney disease patient, had been admitted to the hospital following a stroke and heart attack – pretty typical ailments for someone afflicted with kidney disease.  Seven weeks of up and down days followed.  This, too, was probably pretty typical.  Everyone thought he was finally getting better until a series of infections took over his body.

On that walk, I didn’t want to think too much about the physical part of his illness.  I figured there would be time for that later.  I decided simply to remember my uncle.  I dug deep and realized that he and my aunt had taught me two of my most important lessons.  They made a good team, you see; she was everyone’s favorite nursery school teacher and he was a policeman with the city of LA.  Uncle Bob could be fun and he could be stern, obviously a good disciplinarian, which brings me back to my lessons.  First, don’t be a tattletale.  People don’t like tattletales and ultimately, they stop listening to your stories.  Second, don’t throw a metal toy gun at anyone’s head.  Yes, my cousin Matt made me so mad that I threw a little gun at him.  Thankfully, he was a moving target and the gun must have just grazed him, but it made him bleed.  I still remember the faces of my aunt and uncle, near tears with concern for their son.  They were gentle with me though, determined to get through.  And they taught me in the kindest way possible – through the visible love they demonstrated that day – that violence is never the answer.

I think I will end it here.  August 10 was my Uncle Bob’s birthday.  He would have been 64 today.  What an example he has been in my life!

Share on Facebook

At a party some Sundays ago, a man I’d just met said to me, “You must love kidneys.”  No, I wasn’t slurping them up with fava beans and a nice Chianti.  (I’m a vegetarian, for the record.)  He was referring to my work – the hours I divide between UKRO and DaVita Dialysis.  “You give a lot of time to those lucky organs,” he said.  I admit that sometimes I am “all kidney all the time.”  However, I know I can do more.  And this is how I know.  I like to read the obituaries.  When I come across one eulogizing a lifelong advocate of this or a tireless activist for that, I am particularly inspired.  Here was a person who cared enough to fight for something.  I want to be that kind of person.  I think of some of the dedicated people I have known, past and present – the nurses whose compassion means everything to their patients, the researchers who light up describing the complexity of the kidney.  Dedicated people are not necessarily content.  They keep pushing themselves.  They keep asking themselves how they can do better.

So how can I do better?  How can I do more?

First, I will embrace who I am.  My name is Michelle and I am a kidney lover.  I worked as a DaVita marketing manager for just over 8 years and I continue to work for them as a graphic design consultant.  In my time there, I have guided traveling patients to dialysis centers, have organized and attended trade shows for nephrologists and patients and have worked on ads that I hope attracted a few good nurses and doctors.  For the last 6 months, I have been working with UKRO, learning more about kidney disease than ever before.  That may be because the disease is suddenly personal.  My uncle, who is diabetic, started dialysis barely a year ago.  And I know way too many diabetics who are at increased risk for kidney disease.

Second, I will raise awareness about this devastating and, in many cases, preventable disease.  I will blog about kidney disease, sharing personal stories and the latest news about research, causes, prevention, treatment, diet, whatever I see and hear.

Third, I will make a donation to UKRO.  It takes a lot of money and time to make a medical breakthrough, but it does happen.  Every dollar helps.  Small grants help researchers take their work to the next level so they can get even bigger government grants.  With more dollars come more researchers, more ideas, more approaches to a cure.

I am taking a little break from writing this blog, going to our website, clicking on the Donate Now button.

There!  It’s done.  That was easy.  I hope that you’ll join me.

Now I am ready to make it official.  I am updating my Facebook status today:  Yes, I am a kidney lover!

Share on Facebook

Share on Facebook