If you have kidney disease or care about someone who does, visit organ donation/kidney research advocate Mary Wu’s blog, Confessions of a Kidney Transplant Recipient, and be inspired.  In chapters from her unpublished biography, Mary chronicles her battle with kidney disease from childhood to the present day.

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

The Countdown

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

The UN summit on non-communicable diseases taking place 17 days from now in New York may not be on every American’s radar, but it should be. The ambitious meeting aims to tackle the alarming rise of chronic diseases affecting the world’s population, particularly in developing nations – cancer, respiratory disease, cardiovascular disease, and diabetes. Everyone knows someone suffering from one of these diseases. Many argue that obesity should be included in this list, and it should be. Perhaps it deserves its own special high-level meeting. Chronic kidney disease should be listed, too, but if the world’s nations can manage to reduce the number of people developing high blood pressure and diabetes, they will prevent many cases of CKD.

This summit will be a start, but there is still a lot of work to be done. The proclamation outlining the details for preventing and controlling these diseases is still in draft form. And there have been no goals set for reducing the number of preventable deaths. Nations are at odds on the important issues of reducing tobacco and salt consumption. Norway’s proposal to set a salt reduction target of 5 grams per person per day worldwide by the year 2025 has been removed from the Outcome Document. This is disheartening. To get some perspective, the average American diet contains 12 to 14 grams of salt per day. Reducing salt to about a teaspoon a day would mean fewer strokes, fewer heart attacks, fewer deaths, fewer cases of hypertension, and by implication, fewer instances of chronic kidney disease. A recent study on salt published in the British Medical Journal showed that reducing salt intake by 3 grams per day in the U.S. “…would result in up to 120,000 fewer cases of coronary heart disease, up to 66,000 strokes and up to 99,000 heart attacks annually.” The NCD Alliance estimates that “…reducing global salt consumption by just 15% through mass-media campaigns and reformulation of processed foods and salt substitution could prevent an estimated 8.5 million deaths in just 10 years.”

The EU, Australia, Japan, the United States, and Canada currently oppose Norway’s salt target. The global group World Action on Salt and Health (WASH) recently issued a press release urging those nations to reconsider their position on salt reduction. News stories about the reasons behind the attempts to block reductions in salt, as well as sugar and fat have appeared in the Canadian press, but the media in the U.S. has yet to pick up on the story. It could be because Hurricane Irene and the unstable economy have dominated our recent news. However, one could argue that becoming a healthier nation in a healthier world would help our economy by saving money in the long run.

As this story evolves, we’ll keep you updated. Let’s hope the EU, Australia, Japan, the United States, and Canada reverse their position on salt. Stay tuned!

Share on Facebook

Metabolic syndrome describes a set of symptoms that increases the risk of Type 2 diabetes, heart disease, and stroke. Those risk factors are:

• high blood pressure
• obesity, particularly extra weight around the waist
• insulin resistance
• low good cholesterol
• higher levels of triglycerides

Patients are diagnosed with metabolic syndrome when they have 3 or more of these symptoms.

There have been a number of interesting discoveries about metabolic syndrome in the news lately. Scientists have found a link between metabolic syndrome and kidney disease which could lead to early interventions to prevent the syndrome as well as diabetes and kidney disease. – Metabolic Syndrome May Cause Kidney Disease

Researchers from the Gladstone Institutes have discovered how a gene called SIRT3 increases the risk of metabolic syndrome. – Gene That Exacerbates Risk Factors for Heart Disease and Diabetes Identified

Metabolic syndrome is also associated with increased incidence of kidney stones. An article from Internal Medicine News provides some insight into statistics and a possible cause for kidney stones in obese individuals. – Kidney Stones Linked to CVD, Metabolic Syndrome

Share on Facebook

Researchers at Johns Hopkins have discovered that, contrary to long-held beliefs, not all African American dialysis patients fare as well as their white counterparts. After studying 1.3 million ESRD patients, they found that young African Americans under 50 actually do much worse. The news comes as a surprise because earlier studies had never analyzed outcomes based on age. The new study shows that African Americans over 50 still do have a slight advantage over white patients. However, according to Johns Hopkins, African Americans “…between the ages of 18 and 30 are twice as likely to die on dialysis than their white counterparts; and those ages 31 to 40 are 1.5 times as likely to die.” The researchers believe that the disparity could be due to a lack of access to healthcare or poor healthcare in the early stages of CKD, or perhaps a physiological reason involving high blood pressure, which is very common in the African American community. They hope that this study will change the way young African American patients are counseled regarding the importance of transplantation and that it will lead to more kidney transplants for these patients.

Source:

Conventional Wisdom Unwise: Study Shows Young Black Patients on Kidney Dialysis Do Much Worse—Not Better—Than White Counterparts, Johns Hopkins Medicine, August 9, 2011

Share on Facebook

Researchers at Stanford University School of Medicine have identified a drug called STF-31 that starves and kills some kidney cancer cells by cutting off their energy supply of glucose. STF-31 works by binding to a particular glucose transporter. Testing in mice inhibited glucose transport by about half and resulted in slowed tumor growth with limited side effects and no negative impact on the brain, which also uses glucose for fuel. STF-31 may prove effective in fighting other cancers which require the same glucose transporter for energy production.

Source:

Potential Anti-Cancer Therapy That Starves Cancer Cells of Glucose Identified, ScienceDaily, August 4, 2011

Share on Facebook

A team of nephrologists and researchers at University of Miami Miller School of Medicine have discovered a factor in the blood that may be responsible for up to two-thirds of the cases of focal segmental glomerulosclerosis or FSGS. They found that an excess of serum soluble urokinase receptor (suPAR) activates a protein in the kidney podocytes called ß3 integrin. The podocytes, which serve as a filtration barrier, begin to move and allow protein to pass into the urine. The process leads to breakdown and fusing of the podocytes, impaired filtration, and glomerular scarring. The scientists found that many patients with FSGS have elevated levels of suPAR in the blood. Therapies to reduce suPAR levels or stop the suPAR-ß3 interaction could prove beneficial. Tests for suPAR levels in the blood could also identify patients at risk of developing recurring FSGS after kidney transplantation.

Source:

Nephrologists Discover Cause of Common Kidney Disease, University of Miami Miller School of Medicine, July 31, 2011

Share on Facebook

Researchers at University of Tokyo Graduate School of Medicine have uncovered a new mechanism behind salt-sensitive hypertension. They found that a high-salt diet fed to salt-sensitive rats activates a gene called Rac1 in the kidneys; this leads to increased activity of the MR (Mineralocorticoid Receptor) protein and causes elevated blood pressure and kidney damage. Their study showed that Rac1 is regulated by both salt and aldosterone, a hormone that helps control blood pressure. They found that inhibiting Rac1 prevents high blood pressure as well as injury to the glomeruli of the kidney. Rac1 appears to be a major factor in determining salt sensitivity and could prove to be a beneficial target for preventing salt-sensitive hypertension and resultant kidney injury in humans.

Sources:

New Mechanistic Insight Into Salt-Induced High Blood Pressure, University of Tokyo Graduate School of Medicine, July 18, 2011

Abstract:

Rac1 GTPase in Rodent Kidneys Is Essential for Salt-Sensitive Hypertension Via a Mineralocorticoid Receptor-Dependent Pathway

Share on Facebook

Researchers from Oregon Health and Science University Knight Cancer Institute have found that a gene called Src plays a role in helping some kidney cancers grow. The researchers are now looking at existing, approved drugs that may inhibit Src activity in cancer cells.  In addition, they have developed a method of identifying patients that could benefit from such drugs. This discovery could expand kidney cancer drug treatments beyond therapies that slow tumor growth, but fail to provide a cure, and don’t work for all patients.

Source:

Kidney Cancer Discovery Could Expand Treatment Options, Science Daily, July 7, 2011

Share on Facebook

On July 1, 2011, Ronald S. Taubman, Board Member and Chair of UKRO’s Development Committee was appointed to a two-year term on the OPTN/UNOS Kidney Committee. Ron has been involved in local, state, and national organ and tissue donation and transplant issues for the last 10 years. He previously served as the Region 5 Representative on the OPTN/UNOS Pancreas Committee from July 2007 to June 2009.

Congratulations, Ron and thank you for all the work you do on behalf of UKRO and the kidney community!

Share on Facebook