Sunday, January 1st, 2012
UKRO Blog
Archive for the ‘Kidney Transplants’ Category
Friday, December 16th, 2011
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 In chapters from her unpublished biography, Mary chronicles her battle with kidney disease from childhood to the present day.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.”
Friday, December 9th, 2011
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!
Wednesday, July 13th, 2011
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!
Tuesday, July 12th, 2011
Recent stories about older living kidney donors, including some with medical issues, are truly inspiring and encouraging given the organ shortage. In an interesting article, Stephen Textor, M.D., Professor of Medicine at Mayo Clinic, describes his experience with donors with moderate essential hypertension, who would normally be excluded from donating. - Medical Abnormalities Need Not Exclude Middle-Aged Kidney Donors
In this amazing story, a 59-year-old man who once suffered from diabetes, was tested and cleared to donate a kidney to his brother. The two turned out to be identical twins, so there is no need for a lifetime of immunosuppressant drugs. – Diabetic Brothers Complete Triathlon
A 66-year-old-donor participates in a new robot-assisted transplant operation in this video report. – Robot Assists AGH Surgeon During Kidney Transplant
And here are two wonderful stories about healthy donors in their 60′s. – Tampa Nuns Say It’s a Miracle Kidney Donation Fit and Paired Kidney Donations Save Two Lives, Enrich Two Others
Thursday, June 9th, 2011
Kidney podocytes (shown in yellow) wrapping around the capillaries of the glomerulus
Researchers at University of Miami Miller School of Medicine, collaborating with a team of doctors and surgeons, have uncovered how the drug Rituximab, normally used to treat non-Hodgkin’s lymphoma, rheumatoid arthritis, and chronic lymphocytic leukemia, also works to prevent FSGS from recurring in children and young adults with kidney transplants. The drug appears to bind to and preserve a protein (SMPDL-3b) on kidney podocytes. The protein is under-expressed in patients with recurring FSGS. Rituximab stabilizes protein expression, protecting the fiber formation and structure of the podocytes and preserving their filtering ability. One dose of the drug appears to improve kidney function for up to 12 months.
This could greatly impact the 80% of FSGS patients who experience a recurrence of the disease after kidney transplantation. The discovery may help scientists predict which patients are at risk of a recurrence and provides them with vital clues for understanding the cause and development of FSGS at the molecular level.
Source:
Physicians Discover How Cancer Drug Works to Help Prevent Recurrent Kidney Disease, University of Miami, Miller School of Medicine, June 1, 2011
Friday, May 27th, 2011
Researchers at Wake Forest Baptist Medical Center have discovered that variations in a gene called APOL1 explain why transplanted kidneys from some African American donors don’t last as long as others. The study showed that 2 copies of the recessive gene hindered kidney survival. The genetic anomaly, affecting 10 to 12 percent of African Americans, is linked with an increased risk of kidney disease. Researchers hope that these findings will result in better transplant outcomes and improved screening to protect living kidney donors who might develop chronic kidney disease later in life.
Source:
Genes, Not Race, Determine Donor Kidney Survival, Wake Forest Baptist Medical Center, May 10, 2011
Monday, May 23rd, 2011
Scientists from the University of Oxford, University College London, and the Karolinska Institute in Sweden have discovered a way to manipulate and grow regulatory T cells that will stop organ rejection in mice. The technique involves extracting T cells from the subject as well as cells from the donor organ and culturing them in a lab dish with a drug that causes new T cells to grow. The T cells learn to recognize the foreign cells and turn off rejection. The cell therapy proved successful in a mouse with an immune system similar to a human’s.
Although testing in humans is 3 to 5 years away, the discovery has huge implications for transplant patients. A treatment of this kind would eliminate the life-long need for costly, harmful immune-suppressing drugs and may mean that donor organs could last indefinitely.
Source:
Cell Therapy Aims to Prevent Transplant Rejection, University of Oxford, May 19, 2011
Monday, March 7th, 2011
By now you have probably heard of the national proposal to change the way kidneys are allocated – bypassing the traditional transplant waiting list and matching kidneys by age rather than length of time spent on the list. The topic has sparked heated debate in the kidney community and beyond. Our founder, Ken Kleinberg, recently wrote a letter in response to an editorial on kidney rationing in the New York Times. Here is the original editorial followed by Ken’s letter.
Editorial in the New York Times, Transplants and Rationing
Published: February 27, 2011
The number of kidneys available for transplants falls far short of the need, so there is no choice but to ration them. An emotionally difficult proposal to change the first-come-first-served transplant system makes good sense.
There are nearly 90,000 people on waiting lists to receive kidney transplants, and in 2009 there were only some 10,400 kidneys from dead donors to give them. And about 6,300 kidneys were transplanted from living people who donated one of their two kidneys and usually specified the recipient.
Currently the kidneys from dead donors are provided, through an organ procurement and transplantation network, to people who have been waiting the longest. That may seem fair since many transplant candidates wait for years, and some die while waiting.
But the system has serious shortcomings. Some elderly recipients get kidneys that could function far longer than they will live and that could have done more good for a younger recipient. Some younger recipients get kidneys that will fail and will need to be replaced, using up another scarce kidney.
These problems could be eased through a proposal under consideration at the transplant network to better match the likely longevity of the patient with the likely functional life of the kidney.
The patients and kidneys would each be graded separately. About 20 percent of the kidneys predicted to have the longest functional lives would be provided to the youngest and healthiest patients. The other 80 percent of kidneys would go to patients who are no more than 15 years older or younger than the donor.
The approach seems likely to make it harder for elderly people to get a kidney. But when kidneys are already scarce — and apt to get scarcer as much of the population ages and sickens — it is a rational choice.
UKRO Founder’s Response
March 4, 2011
A discussion on how best to distribute the limited number of kidneys available for transplantation is appropriate, but this will not resolve the problem. Quite simply, too many people have kidney disease—nearly 30 million in the United States alone—and millions more are at risk. Only research can hasten the discovery of more effective treatments for kidney-related diseases, and in the process diminish the growing need for transplants.
The enormity of human and economic losses from kidney disease cannot be overstated. Nonetheless, kidney disease research remains a low priority nationally and is chronically under-funded. Bringing kidney research to the top of the public mind—like AIDS, cancer, heart disease, etc.—can help make vital funding a national imperative.
Kenneth Kleinberg, President, UKRO