Sunday, December 19, 2010

It’s a Wonderful life

My transplant has been delayed from December 21st to late January.   The doctors have told me I am not quite ready to have the transplant and need additional treatment.  My antibodies are coming down from the medication I am receiving (which is very good news) and they think if it circulates a little longer in my bloodstream my chances of success are greatly increased. The roller coaster of hope continues…   

The good news is I will not be in the hospital on Christmas day and can enjoy the holiday with my friends and family.  Also, I will be able to attend the 12th Annual Renal Teen prom that takes place on January 16th.   

During this Holiday season, I have been surrounded by so much love and support it has made me see how many wonderful people I have in my life.   As in the movie It’s a Wonderful Life, George Bailey (played by Jimmy Stewart) is made to realize how many lives he has touched, and helped.  

When It’s a Wonderful Life was released in 1946, it lost money because of its somber portrayal tone of small-town life.  The movie did not become a holiday classic until it lapsed in public domain in 1973.

So when the movie was released I imagine the director Frank Capra was disappointed (like I am now), but it is well worth remembering the outcome was beyond his imagination.  The movie also depicts a guardian angel and my living donor Cyndi has guarded my hopes with the generous offer of her kidney.  

It’s a Wonderful Life was inspired by the book The Greatest Gift by Phillip Van Doren Stern and the Gift of Life is the Greatest Gift!   Sometimes the best gifts go to those who wait.  

Tuesday, November 30, 2010

Why is Angry Birds so Much Fun?

I have never been one to play video games. I am more of a person who likes to play Scrabble, Pictionary or Trivial Pursuit with friends around a table.  But, I decided to purchase an iPad (with ebooks, videos and Internet capability) so I could have something to distract me during this transition in my life.

I stumbled upon a gazillion applications. One application that continually came up as a top seller was Angry Birds. So I decided to invest a couple of bucks and see what it was about.

Let me warn you that this game is highly addictive! The objective of the game is to sling various sizes of birds at different angles to smash little green piggies, some of whom are wearing helmets and are hard to take down. The snort and snarl can lighten the most hectic day.

The piggies live in castles that are constructed with wood, brick and ice. The goal is to find a weak spot to take the castle down. To master this game you have to understand physics.  Even one angry bird flying through the air can take down a fortress if it hits the right spot.

For some strange reason, I feel a tremendous amount of satisfaction when I am able to hit where I was aiming. 

Last weekend, my friends son came over and he easily was able to advance through many of the levels with ease. At 8 years old I was watching a professional and I was in awe. How does he do it?     

The animation and sounds of Angry Birds will make you smile and at the end of the day it is mindless fun. But sometimes we need that - right?




  

Sunday, November 21, 2010

Hope and Gratitude for Thanksgiving

Last week, I had my first treatment of Intravenous Immunoglobulin (IVIG) to prepare me for a potential kidney transplant from my step-sister Cyndi.  I am not an easy match and I was amazed to learn that even though we are not blood related, she can still donate.   

The doctors explained since I have had three transplants and multiple blood transfusions, I have acquired a lot of antibodies which makes me more difficult to match. Antibodies are found in the blood and are used by the immune system to identify and neutralize bacteria, viruses and foreign objects. A transplanted organ is seen as a foreign object and the body will automatically reject it if it is not treated with medication.

Luckily, they can test exactly what antibodies I have and detect which ones are going to attack the transplanted kidney. The IVIG treatment helps desensitize the bad antibodies, allowing me the high probability of acceptance. The advancements in transplantation are amazing! 

The fact that my sister wants to offer me a part of her body is extraordinary. It is also extraordinary that several other people came forward and offered to donate the gift of life to me.

My three previous transplants were from deceased donors. My third transplant lasted me 20 years. These individuals generously decided to be an organ donor and gave the gift of life to me as well as many other people.  
   
Prior to when I was called for my third transplant in 1990 I was told my chances were slim to none that I would ever receive another transplant. As I was in my early twenties, I just thought that was the way life was going to be for me.  I was taken by surprise when I got the call.

But now the situation is different. A living donor who is giving up a part of their body is hard to wrap your brain around. My pending transplant date is December 21. The hospital has tested Cyndi from head to toe and cleared her of any potential harm when she donates a kidney to me. 

I have had time to reflect on all the medical miracles and the generosity of many people that have crossed my path in my 44 years on this earth. For that I am truly grateful.  Happy Thanksgiving.



Thursday, November 18, 2010

Buttons are Helping Me Keep it Together

As you may know, I have a number of health challenges.  When I started back on dialysis last March, after a 20 year run with my kidney transplant, it was another life adjustment.  At times I felt down and frustrated as I had to learn to accept this major lifestyle change in my life again. How do I deal with the challenges?  One of the strategies I use to cope is to engage in the creative process.

When I am creating something or watching someone create, it helps me relax and get my mind off my health issues. It also helps me stay distracted so I don’t eat or drink out of boredom.

I love the Food Channel with Bobby Flay throwing down his cooking skills and using all kinds of colorful ingredients.  The HGTV channel has many shows that transform old broken down shacks in to dream homes.

I have always believed that if you take the body the mind will follow, so I thought I needed a new art therapy project to get my mind in a good place.

A friend of mine turned me on to buttons.  She made these beautiful button bracelets and each one looks like a piece of art.  I wanted to learn how to make them, so she showed me how.  I was off and running with my new found fun.  The more I learned about buttons and the history behind them, the more intrigued I became.

It became like a treasure hunt for me. I often search for that perfect button that will complete my bracelet.  I scavenged garage sales, vintage stores, Ebay and, once people knew I was collecting buttons, friends started sending me theirs.  There are so many different types of buttons: silver, gold, ivory, bone, mother-of-pearl, glass, stone, wood, horn, ceramic, Bakelite, plastic, and polymer clay and some dating back as far as the 18th century.

I was wondering why I was so attracted to buttons and making something new out of them.  Then I realized that most of the buttons I receive have been sitting in an old jar and may have been thrown away.

I am giving the buttons a new life.  Buttons also are known for keeping things together. On several occasion my girlfriends come over and we sort buttons into color piles, design a bracelet or just chit-chat.  Buttons are helping me connect with my friends.

Art therapy offers many benefits from stress reduction and enjoyment through creativity, to learning a sense of mastery, problem-solving, and improves self-esteem.

Art and emotions are closely linked so art-making can help to positively alter one's mood.  I always feel better after I finish a bracelet.

So I encourage you to engage in a creative activity.  It will help you get through the tough times.




One Teacher Can Make a Difference

We have all had an experience with a person that has significantly influenced our life. Our interpersonal relationship with this individual, whether permanent or fleeting, caused a significant change in the way we perceive or lived our lives. They are individuals whom we admire and revere; whose noble qualities make them our own personal heroes.

If we take a moment and reflect, we can often see a clear picture of our personal heroes. For me, there is one woman who comes immediately to mind. When I was ten years old, my Mom and I moved from California to Florida. While moving initially seemed exciting, my health deteriorated rapidly. My sixth grade teacher, Mrs. Rincones, was also new to the area, became concerned because of my continued absences. During the inevitable parent-teacher conference that resulted, my mom confided in my teacher that I was getting sicker by the minute. The problem was compounded by the fact that there was not a pediatric kidney specialist in the area, and the best solution was to move back to California where doctors who were familiar with my case could care for me.  Unfortunately, we did not have the financial resources to make the move possible, and my mom was fearful that I would not survive.

Mrs. Rincones immediately said, “Well, we just need to raise the money to get your little girl back to the doctors who can care for her, ” and she went to work trying to figure out how to accomplish this goal.

I often think it would have been easy for her to say, “I am too busy,” “I have kids of my own,” or “I have my own problems.” But no! Mrs. Rincones wanted to help a child in need, and I just happened to be that lucky child. With the help of her friends, Mrs. Rincones raised the money for me to receive my life-saving care.

My mom packed our gold Oldsmobile and my cherished black poodle, and we made a five-day trek back to the care I desperately needed. And just in time! By the time we arrived to Los Angeles I was in congestive heart failure and needed emergency dialysis. 

Over the years I often thought about Mrs. Rincones and her generosity of spirit. We lost contact with her after the move back to California, and I wondered if she was happy, healthy, and enjoying life. She deserved the best that life had to offer.

When I was sitting at my computer one day I decided to see if I could find her on the Internet. Through the wonders of Google, it took me less than ten minutes to find her phone number. I nervously dialed the phone, wondering if she would remember me. She immediately picked up and I asked, “Is this Mrs. Rincones who taught sixth grade in Ft. Pierce, Florida?” When she replied in the affirmative, I asked if she remembered a little girl named Lori James whom she had helped get the medical care she needed in 1978.

I could feel her tears well up over the phone. “Oh my! Is it really you, Lori? I often wondered what happened to you, if you lived.”

Time stood still for a second as I became a little girl again and I thanked her for helping save my life.

She then responded, “That event changed the course of my life.” The sequence of events she then described provided background information that I had never known on how she had raised the money to fund my lifesaving return to California. As she stated: “When I learned a young girl was sick and needed help, I immediately went to the church to ask for their assistance Their response was shocking. The church said they would help only if I could answer one question affirmatively: ‘Is the little girl white?’”

Living in a predominantly black demographic of Florida, being white was not a very high probability. But Mrs. Rincones refused to dignify the church’s question with an answer. She found another way to raise money by putting jars in bars and diners alongside the cash register, asking people to donate their extra change. By pounding the pavement and asking hundreds of people to help out, she was able to raise enough money to for me to return to California for the care I desperately needed. 

“Lori, that event changed my life and I never was the same afterwards,” she told me. “My goal in life became to share the fact that all children are important, no matter what color they are.”

In the south in the late 1970s, prejudice was rampant and to think that the color of my skin could have been the deciding factor of whether I lived or died is shocking. Luckily, I had such an extraordinary teacher who cared deeply about all of the people in her community.

I subsequently visited Mrs. Rincones when I was in Florida, and we had a wonderful lunch. She still teaches—both in the classroom setting and helping people in her community.  I am sure that hundreds of children and adults still are inspired to live up to her standards and model their lives by her example. She is a hero and a great role model for all.   

It is always helpful to think about our personal heroes. Ask yourself, who has made a difference in my life? Have you thanked them? It is likely that they did not expect your thanks (although it is always appreciated). More importantly, have you reciprocated the favor by trying to help others like someone once helped you?

At different points in our lives we are all students or teachers. I encourage you to embrace both roles, and strive to positively influence the lives of others.

Monday, August 9, 2010

"Persistence & Hope - A Winning Combination"

Anyone who has ever gotten anywhere in life will tell you that they exercised a lot of stiff-lipped persistence. When recalling the early days of their career, few successful entrepreneurs can forget the rejections they endured, along with plenty of nail-biting and toe-tapping.

Likewise, every person who is living well despite chronic kidney disease is doing so because of stubborn persistence. It is that refusal to give up despite some very rough going—along with hope that things will get better—that characterizes the achiever.

The area of personal strength in which I take the most pride is my persistence. In managing my chronic illness, I’ve found persistence to be key in allowing me to feel a sense of control over my destiny. As my healthcare workers will tell you, I never quit! When I have a question, I don’t give up until I get an answer. If one doctor doesn’t give me the information

I need, I go to another one, or I’ll look something up on the Internet, or I’ll find a nurse or some expert who is willing to help me.

I am also unyielding where my dreams are concerned. I learned early on that if I did not nurture the hope that I would fulfill my dreams, I would not want to take care of myself.

Just as winners must exercise persistence, in most cases they must also wade through a sea of negative feedback. The world has no shortage of people who will try to convince you that your dreams are silly. They might not say it in so many words, but they imply it by saying, “Are you sure that’s realistic?” or “Gee, that seems like an awfully big challenge!”

My dream was to find a way to provide hope to those who have kidney disease and those who care for them. I have certainly encountered many obstacles over the years, but I just kept pursuing my dream anyway! Now I can proudly see the tangible results of my persistence.

After more than 12 years, the Renal Support Network (RSN) continues to serve the kidney community by instilling health, happiness, and hope through education, advocacy, and awareness... one person at a time.RSN fulfills this mission by offering many unique programs such as KidneyTalk, KidneyTimes.com (RSN’s new health information website), PEPP, weKAN, the Renal Teen Prom, and Patient Lifestyle Meetings. You are holding one of the dreams—this newsletter!

Fred Astaire was told he couldn’t dance. Walt Disney was admonished for lacking creative talent. The next time someone tells you that your ideas are silly, unrealistic, or overly optimistic, use that feedback to fuel your determination. Then put your nose to the grindstone and start chipping away at the obstacles.

Whether the issues involve daily choices related to your illness, lifestyle decsions, your career or your relationship with your family or friends, remember the vital keys to success--persistence and hope.