Survey says–Donating a kidney to save a life is a huge return for the donor!

I recently ran a survey for kidney donors through a large private support site and we had an excellent response! One of our responders said, “Donating a kidney was a defining moment in my life. It showed me the capacity to love and care for someone else. Realizing you’re making a decision that is beyond yourself is a very humbling experience and I wouldn’t have changed any part of the journey for anything”. Cody, Santa Rosa, CA,  22 at the time of surgery in 2007

The news was pretty much what I expected or in fact reflected my own experience.  Interestingly a majority of respondents said that they would donate again!  Frankly this wasn’t even one of my questions, these responses were left in the open comments box.

We asked donors what amount of time did it take to become approved as an organ donor? Our responders who are from various parts of the United States answer’s varied. From up to a year, to as little as 2 months. Our average response was 5 months before they received approval to donate their kidney.

As you can see by the chart below most of our donors 78.79% are direct donations and gave to a family member, a friend, or a co-worker. The good Samaritan donation is someone who chooses to donate to someone they had never met before!

I was surprised to see only a few people were paired exchange donations. Kidney paired donation is an option for living donor pairs who are not compatible with each other. For example, I was not a match for my brother Tim, however through a paired exchange program I was able to become part of a swap with eight other donor/recipients. Therefore my kidney went to NYC and my brother’s kidney came from Philadelphia. etc. Within 24 hours of being added to the National Kidney Registry (NKR) they found a match for my brother.
surveyStudies show that a donor will take a risk to help another in a moments notice; they often think only about giving life to another, particularly when a loved one is involved.

I asked an open-ended question on the survey “Did donating your organ have any affect on how you view life today”?  Some of the responses were…

“It made me again realize how important each of us are on this earth, for whatever reason, little or big, we are here to serve and love one another and help one another on this journey”. Julie, 47 at the time of donation, Imperial Beach

“When I first learned about altruistic donation, I thought it was incredibly cool that there were people in the world who would do that. Now I get to be one”. Carol, 59 at the time of donation.

“I’d do it again. I firmly believe living donors and pairings are the only way to reduce the kidney waiting list”.  Kara, 54 at the time of donation, Chicago

“It made me realize how good it feels to give. I became more active in volunteer work following my donation”.  Michelle, 25 at the time of donation, Rochester, NY

“Yes – don’t waste time striving for happiness, positive outlooks, and making others feel happy”. David, 27 at the time of donation, Boston

“I’ve always lived life the same….but this was probably the most amazing thing I have done. I’d do it again….in a heart beat”. Tara, 34  at time of donation, Bakersfield, CA

When you consider what the surgery entails along with some risks for the donor, these responses and so many others received are remarkable, but not surprising.

Most patients undergo laparoscopic surgery for kidney donation and require a hospital stay of only two to three days. For me, I was 52 when I donated and am now back to doing the same active things I did before my surgery! Including plans for a 100 mile bike ride in the Spring.

Another interesting comment that seems to be common thread is; donor’s do not like to be perceived as heroes. They simply took a step to help another and of course wouldn’t you do the same? Would you?  We would love to hear from you? What are your thoughts on organ donation? Take our survey!

About: The first Kidney donation was done in 1954. There are some risks for the donor and you must be healthy. Most patients undergo laparoscopic surgery for kidney donation and require a hospital stay of only two to three days. For me, I was 52 when I donated and am now back to doing the same active things I did before my surgery! Over 50,000 living donors who have donated their kidneys to people facing kidney failure.

 

 

Positive attitude leads to quick recovery for transplant patient

At the age of 28 Amanda was receiving her workup for transplant and was asked how she was able to maintain her attitude throughout her 13-year battle with Kidney Disease. Amanda answered, “It’s simple. I don’t get too anxious or worried. I take a moment to acknowledge it and move on. I take after my Dad.”

It was a hectic morning as I raced across Pittsburgh to pick up my brother for our six Amanda_nmonth post transplant check up. It was cold outside and I was dying for a cup of coffee. As we hurriedly entered the hospital, I scoured the waiting room looking for familiar faces. I looked forward to seeing the doctors and nurses with whom I had shared one of the most profoundly impactful times of my life.

My brother was called into his appointment as I sat in the transplant waiting room on a comfortable chair with coffee in hand, I noticed a young women holding a large box of medications in her hands. She had long, dark hair and a smile that reached her eyes. I was immediately curious about her. I knew she had received a kidney by the medications she carried. Everything else about her looked happy and healthy.

Here’s her story…

I was shocked to learn that Amanda had received a transplanted kidney only two weeks prior! She had a bright, sunny disposition and I could clearly see she had a wonderful outlook on life. As we started to talk, she immediately mentioned her seven-year-old son who was obviously a light in her life.

Amanda shared her experience and how she got to this place with me.  Her symptoms started at the age of 15 when one morning she woke up with pain that ran from her right lower back to her side.  She tried, but could not walk. By evening she had a fever and was vomiting. When her Mom took her to the pediatrician the next day, she was diagnosed with the flu.  Amanda’s Mom pushed for more tests and it wasn’t long before they realize her creatinine levels were off.   Normal levels of creatinine in the blood are approximately 0.6 to 1.2 milligrams and Amanda’s were much higher.

Amanda began a regimen of going to the children’s hospital every three months for evaluation. It wasn’t until her 22nd birthday that the pain flared up again. She ignored the pain, thinking it would go away until a horrible dream of death one night caused Amanda to face the reality that she needed to have this problem checked out. Her creatinine levels were at 1.9.

And… two months later Amanda and her husband discovered that she was pregnant!  Due to her precarious health, her pregnancy was deemed “high risk” and Amanda was monitored closely.  The good news is that she carried her baby to full term and she and her husband welcomed their beautiful and healthy son to the family?)

A year-and-half later, Amanda’s condition deteriorated to the point that she had to start dialysis. She was transported by ambulance to the main dialysis center in Pittsburgh.  A port was put into her jugular and she started dialysis that day in the hospital. Her attitude remained upbeat and she was put on the list to find a donor. Her immediate family and friends were tested and were either not a match or unable due to health reasons.

During the first year of dialysis she found a center nearby and was able to maintain her job along with her dialysis appointments.  Not surprisingly, Amanda found she was the youngest person there, every other day she would go to the clinic and see the same nurses and patients. She would lie there for four hours at a time while they emptied out her blood, cleaned it and put it back in her body.  This was an exhausting process, particularly with a young child at home.

During this time Amanda had at least six replacement catheters in her chest (catheter is placed by puncturing the internal jugular vein in the neck) and the catheter is then advanced downwards toward the chest). A catheter is used for exchanging blood to and from the hemodialysis machine from the patient. Most patients would have one added in the arm. However, Amanda’s never matured enough to use it.

Amanda eventually had the opportunity to do home dialysis Peritoneal dialysis (PD), which she did for two years before receiving her transplant. Home dialysis gave her the flexibility to do it at night for eight hours while she slept and she didn’t have the exhaustion.

At times she felt it would never end. But after three years on dialysis her Aunt flew to Pittsburgh to donate her kidney directly to Amanda.

Amanda is so proud and grateful of her Dad’s sister who after surgery is doing a 100% better. At 55 years of age she is retired and living in California and watches her three grandchildren while her own daughter and son-in-law are stationed overseas in the US Air Force.

Studies show that a kidney from a living donor can last up to 20 plus years.  Amanda is taking good care of herself. She is healthy and recently got a membership to a health club. She is focused on eating well, exercise and taking her medications as directed. And, I can’t help but think that her positive outlook on life makes a huge difference in her overall success.

Amanda’s hope is to have more children, and she happily tells me that she will be talking about just that when she meets with her doctors in January, which will be her first anniversary with her new kidney.

Share your story, share your experience!

Could detailed processes avoid a family’s pain– after kidney was thrown away?

Preparing for a donor surgery is anything but easy, but definitely worth it! With months of preparation and testing for the donor and the recipient. It’s not only difficult for the donor and recipient, it’s a family affair– knowing you have two family members in surgery at the same time is very stressful!  I know this first hand since I am a sister who donated on behalf of her brother just a year ago! I have a tremendous amount of gratitude for the opportunity.

As Good Morning America reported this morning, when a Toledo Hospital threw away a kidney just before it was scheduled to be implanted into his sister, I can only imagine the devastation the family felt.  The hospital admits they threw the kidney away, but they are not admitting substandard medical care,Fudacz family lawyer James E. Arnold told ABCNews.com.

As a lean six sigma black belt, I see first hand how errors can occur when detailed processes
are not in place. Yes, mistakes can happen, particularly human error– however having a concise process that eliminates the possibility of costly mistakes is essential.lss

What is Lean Six Sigma (LSS)? Six-Sigma is the pursuit of accuracy and making everything right the first time. Lean is the pursuit of speed and therefore doing it as quickly as possible. When a hospital adapts LSS they utilize a set of tools and techniques/strategies for process improvement, LSS was originally developed by Motorola in 1981, however I believe it’s best known after Jack Welch made it a main focus at General Electric in 1995. Source: Wikipedia

Consider the flow of making a pot of coffee. Do you have a clear process every morning when making coffee? Do you use the exact amount of coffee, filters and water for quality and consistency? Is your system of making coffee done in the least amount of steps as possible, therefore is everything ready, easy to access and prepped?

Many hospitals and organizations are adopting Lean Six Sigma’s strategies to reduce the amount of errors and increase patient quality. In Toledo, Doctors tried to resuscitate the kidney, but it was rendered unusable, both sides have said. After a state investigation, the hospital’s live-donor program was temporarily suspended, but has since been resumed. Read full article

Based on the article noted above, The university at Toledo had “created a unique environment of safety in transplant and other programs that is second to none”.

This is a terrible way to learn and I know hospitals work diligently to avoid costly mistakes from both the patient’s experience and the reputation of the hospital. I would guess– they have changed the process in how they manage donor’s organs today and its something we can all learn from!

After all we are not in competition when it comes to saving lives, we are all in this together!

In Lean Six Sigma we are always looking at “continuous improvement”! Tell us some of the ways you see improvement in the transplant community?

Wendy

 

 

 

 

Wanting too much leaves little time, five ways to get focused!

At times I have so many things I want to do, I can barely focus. For example, I want to learn a new language, finish my book and make a difference in organ transplant and that’s just the beginning. I realized this morning that I am not focused on the things that matter. Having too many “wants” does not allow you the time and energy to commit to what is important.  Am I destined to have a bucket list that is all desire without accomplishment?

Too many wants leaves you feeling unfocused and not committed!time

I had a Ah ha moment where I realized my problem is that I was not committed to what was really important. For example, if I went back to school would I really be able to finish my book, work, etc? What would I be gaining? Or more importantly would I have the time to follow my true passion?  I realized I needed to prioritize my list to what was doable in a specific time frame (while I still can) and make choices based on what I really wanted.

So here is how I cleared up the noise in my head and got focused!

Your WHY behind each goal is your motivation, be sure to ask why you want to make it happen.

1. Make a list of everything you want to do and do your best not to rate it — just write them down.

2.  Organize your “wants” into categories for example; Work, Money, Travel, Relationships.  If it’s in your head –  write it down.

3. Next prioritize your list. Ask yourself…  Is this something immediate or long-term? What is the “WHY” for wanting it? Keep in mind your WHY will motivate you when things look blurry. Rate your list based on what is most important to you.

4. Take your “A” priority goals and start planning. What do I need to do to make this happen? Create a list of items that need to be completed before you achieve each goal.

5. Finally, review your goals daily. Check off each item “your to do’s” that move you closer to each goal!

Today, clear the clutter and feel the certainty of moving towards your goals– your bucket list!

Have you kept a list in the past and found it worked well? Tell us about your experience?

Share your experiences!

Wendy

 

 

One year after my donor surgery brings new awareness and passion

The day comes to an end as I sit outside warmed by the sun, I listen to the trees swaying in the breeze and I contemplate the events of the past year, I feel unsettled, like the seasons in New York, I’m in transition. I wish I could feel the lightness, the relief and elation I felt the first few months after my donor surgery. I’m sure feeling unsettled is partly due to my father passing away just last week.

A year ago today I donated my kidney on behalf of my brother and wow what a year it’s been. I walked into the hospital the day before my surgery filled with stress from the prior eight months. With anticipation, I expected to let go and after recuperating I would get back to my life. What happened was very different, so many gifts have come my way and nothing is what I expected!Me - Rochester, NY

As I look back over my previous blogs, I can see how far I have come.  it was truly an amazing experience– by donating a kidney I was able to save my brother’s life. I had merely set out to help and thought in four-six weeks I would resume my life.

Instead it catapulted me emotionally, physically and fueled a new passion. My first two weeks after my surgery was spent at the Family House in Pittsburgh. It was an experience that forever changed me; I became connected to the lives of other transplant families, where we would share our experiences in the kitchen after a long day of visiting loved ones in the hospital.

For me– I was healing and in pain, but happy – I had connected with my Mom in a new way, I had let her in. I felt truly grateful for the entire experience and happiness poured through every fiber of my being. Three weeks after my surgery I traveled to Los Angles and then flew to Japan to visit my children and family.

I returned from traveling six weeks after my surgery and felt ready to take on the world. However, I found that I was still not feeling myself physically or emotionally and was desperately trying to hang on to the feelings I had earlier. Much of my time was spent researching organ transplant, I trusted I was moving in the right direction as my passion built. The time I spent at the Family House with families either waiting for a transplant or loved ones in the hospital receiving an organ had forever fueled this new passion in me.

It wouldn’t be till my eleventh month after surgery that I truly felt I was physically healed. I don’t know if this is typical for most donor patients, I attribute this to my age or perhaps hot yoga, which I was doing three to four times a week. It was after another episode of passing out that my Doctor told me to stop hot yoga, the heat was depleting my energy and affecting my organs, particularly my heart. Yoga itself is wonderful and really helped with my overall healing in mind, body and spirit. I now continue to do yoga without the heat.

A couple of months ago, while attending a TED conference, I met a surgeon from the University of Rochester who is truly passionate about donor registry- Dr. Chris Barry. I now reside on his board of directors at www.blifeny.org and I look forward to doing some interesting work. In addition to that I am working on a NIH grant to research the donor experience. Our hope is to create a product that will drive a positive donor experience and reduce the time it takes to be approved.

When I look back on this year, I have learned a great deal about myself, but most of all I learned to trust my gut, follow my instincts and to love me. I am grateful for the experience, the people I have met and a passion that brings new meaning to my life.

What I know for sure is that when life breaks us open, we feel more present, more compassionate and grateful. Ready for the next adventure!

How was your experience after organ donation?

With gratitude.

Wendy

 

My Dad– a life of survival, acceptance and trust.

Being raised in London, England during World War 11,” I never felt like a victim during the war, people often referred to us as the poor children, it was part of my life and I accepted that” said Ken Graham.

Kenneth Peter Lewis Graham was born in the Spring of 1938. World War II  would start a year later when he was just one year old . While being raised in the midst of war, their Mum worked as a cook  and their Dad was in the Royal Air Force and served in India and Burma during the war, their Dad was a complete stranger to the boys until 1945. Ken spent much of his time with his 17 month older brother Derek.

My Dad and Uncle Derek in 1947. London, England

My Dad and Uncle Derek in 1947. London, England

When the war started many young children were sent away from London and moved to areas thought to be less at risk from aerial bombing. Operation Pied Piper, which began on September, 1939, officially relocated more than 3.5 million people.

Ken and Derek were sent to a farm at Chalfont Saint Peter, shortly after arriving the boys came down with dysentery and nearly died, they were sent back to their Mum in London after they had recovered enough to travel. While many children left London to live safely in the country, Ken and Derek spent their childhood in the midst war.

Both the boys attended Droop Street elementary school. They walked to school every day with gas masks slung across one shoulder. At times when the air raid sirens went off, they would hide in a shop doorway until the all clear sounded . During classes if the air raid sirens went off all the students would stand up and then continue their lessons in the school air raid shelter. If a buzz bomb went overhead we would all hold our breath and hope the engine would continue. If the engine stopped it meant the buzz bomb had run out of fuel and dropped from the sky filled with high explosives.  Source: Derek Graham

As a small child Ken would run around with his friends, one time he got caught throwing rocks at German Prisionors of War until the Tommy (British soldiers) yelled at them and sent them running. Often during the day Ken and his brother would collected shrapnel or tin foil dropped by departing bombers to help the efforts. The city was in the dark thorughout the war, at night they would find themselves running to bomb shelters due to airraids.

By the time the war ended in 1945 Ken was about 8 years old, he grew up fast in the streets of London. I have heard many stories about the gangs of London and my Dad’s explorations. I heard the reason why my Nanny (Grandmother) chose to get on a ship to Canada was to give Ken and Derek a new life.  At that point my Nan was 59 and 9 months when she emigrated to Canada, leaving her three grown up daughters in London to start a brand new life with her boys . They sailed from Liverpool on the Empress of Scotland and landed in Montreal and from there they spent two and a half days on a Canadian Pacific train to Edmonton

 

My Dad and his family outside his home celebrating end of war!

 Celebration – War has ended, outside my father’s home in London, England.

Arriving in Edmonton, Alberta Canada at the age of 15, my dad met my Mom two years later. He taught my Mom how to speak English, since she was from the Nederlands and spoke mostly Dutch. The two of them loved to dance, go rollerskating and have fun. It wasn’t long before my parents were married with their first baby on the way. By the time Tim came into the world my Dad was barely 18 years old.

My father wanted desperately to give his family a good life, he worked hard and felt kids should be seen and not heard. Respect was important in my family and we did not talk back. My parents had the first four of us kids before moving to Toronto, Canada where my father found better work and started taking engineering classes in the evening.  Soon after, my youngest brother Trevor was born.

I recall my Dad sitting us all down for one of our family meetings excitingly telling us we were moving to the United States of America, home of the free and lots of opportunity. He loved the idea that we could be whatever we wanted to be in life.

Moving from the city of Toronto to a small town in Kendall, NY was not easy. It was quiet in the Country and a bit of an adjustment especially for me– since I had never climbed a tree and  had an accent which made me feel different. 

Coming from the city we were used to living in a small space, however this home in Kendall was huge with six bedroom on 12 acres of land.  My father said this was his favorite time in life, where he enjoyed his six children (my sister Audrey was born in Kendall). For the first time my Father was part of a community, working at Eastman Kodak and coaching the boys baseball teams.

My Dad renovating our house in Kendall, NY

My Dad renovating our house in Kendall, NY

Things became more complicated and competitive as “the boys” got older.  I remember my Dad holding a family meeting and asking what kind of engineer did each of my brothers want to be? They were required to make a decision in that moment, each one of my brothers spoke up one-by-one. Tim, Manufacturing, Ron, Mechanical, Shane, Manufacturing, Trevor, Mechanical when I asked my Dad, what about me, he proudly stated that I could work at a the local hospital as a nurse’s assistant and meet a nice doctor.  

His thoughts on women were old fashion and I never bought into it, however I know he wanted us to be successful and to be the best we could be.

For me, its important to understand where we come from and what our parents have endured.  I had the priviledge of spending the past week with my Dad in San Diego, where he shared his life with me in ways I have never expereinced before.  I am forever grateful.

My father has managed his illness very similar to how he dealt with war as a child… as a survivor with acceptance and trust.

My Father passed away this evening on August 6, 2013.

Wendy

 

Her Doctor said if she doesn’t stop, she will end up on dialysis!

My sister called to tell me our Mom has third stage kidney failure! I was so overwhelmed with emotion, you see my Mom has always taken care of her Diabetes. She walks every day, she eats well and monitors her sugar levels closely.  How could this be happening? Her Doctor said that if she doesn’t stop using these medications she will end up on dialysis.

My sister Audrey, my Mom and I in Holland.

My sister Audrey, my Mom and I in Holland.

My Mom has been taking Motrin, Aleve, and Advil for years which can affect your kidney in a negative way, particularily if you are prone to Kidney disease, diabetes, etc.  

For me after I donated my kidney I was told  for pain relief such as headaches, etc. I was to take tylenol based products and nothing else since it was not metabolized by the kidney.  Of course if  you have other health concerns this advise would not pertain to you! Ibuprofen is broken-down by the kidneys and acetaminophen (brand: Tylenol) is metabolized by the liver. Source: HealthTap.com

When you know better, you do better! For my Mom, she has thrown away all of her over the counter medications and bought Tylenol, my understanding is that she can turn this around.

For those of us who do know better— why are we so distructive with our bodies? Why are we smoking, overweight and not exercising?  My weakness is junk food and its a constant battle for me, I know I always feel better when I go for a run, ride my bike or choose a salad. I know that the quality of my health both physically and mentally is greatly affected when I make good choices.

Still sometimes, I choose the cookies…. 

Wendy        

Moving on and letting go! Living kidney donor

One of the advantages of getting older is the ability to let go! Last week was big for me.  For the past six months I have been harboring these negative feelings around someone who in my eyes–had done me wrong.

During the day I’m pretty good, but at night the thoughts would haunt me. I would go over  the situation in my head and emotionally felt drained .  I made a decision to move forward and let it all go. Some of my friends would argue that was the wrong decision,  particularly since assets are involved.  I certainly felt the need to be right; however this was not serving me– in fact it was costing me!

It affected my sleep and I didn’t like the negative thoughts in my head. I berated myself for the decisions I made and in truth I  was wasting valuable time and head space. With all of the good things going on in my life,  I know longer wanted to harbor these destructive feelings.

When you consider the laws of attraction a belief where “like attracts like” and that by focusing on positive or negative thoughts, one can bring about positive or negative results.   For example a close friend of mine carries a great deal of fear and I see her hanging on to it like a life line.  By keeping the fear close, she keeps herself in a box and repeating the situations over and over and wondering why the results are always the same.   Fear has a way of stopping us in our tracks!

Typically what you see in others is often a reflection of yourself. So what can you today to let go of negative thoughts? Ask yourself….

I often feel….
But the truth is…..

What is your truth? Where can you let go of a thought or a fear and move forward and just trust that it will be OK!

 Good night Wendy

Power of love that fuels the mystery of miracles. Living Kidney Donor

The coffee shop where I was seated was just about empty when David Tobey and his sister Sue walked in.  I had first met Dave a few months ago to talk about his kidney donation to Sue. I had been so taken by the immense love and support he expressed for Sue and the entire Tobey family – which includes five other siblings and many nieces and nephews – that I wanted to learn more about their special story.   In truth, I recall feeling a twinge of envy about the close familial bond I had perceived from Dave.

I have come to believe that this extraordinary love and Sue’s “take it as it comes” attitude saved Sue’s life. 

Tobey Family - Sue Lennox Tobey and Dave Tobey

Tobey Family – Sue Lennox Tobey and Dave Tobey

Five years ago Sue was diagnosed with FSGS (Focal Segmental Glomerulo sclerosis), a disease that occurs when the filter on the kidney is damaged and becomes scarred.  When this happens, the kidney is no longer able to adequately perform its function of filtering blood.  With this diagnosis, Sue was told it was only a matter of time before she would require dialysis or a new kidney.

With no hesitation or prompting, every member of the Tobey family – all six of Sue’s siblings – eagerly went through testing with the intention of helping their sister resume her life as a wife and active mother of three.  Dave, a twin and the second youngest of the family, turned out to be a perfect match, and better yet he was deemed an excellent candidate because he was extremely healthy and fit.

It was quite unexpected to Sue’s team of doctors – and to the Tobey family – when Sue’s body almost instantly rejected her brother’s kidney. 

Sue’s transplant team was able to reverse the rejection.  But it was the better part of a year filled with near death moments before Sue was in the clear.

The Tobey’s were no strangers to a family crisis.  They had lost their own Mom to cancer when Sue was just 17 years old.  So when their sister met with life-threatening complications, the Tobey’s rallied hard but seamlessly.

They all pitched in to make meals, help Sue’s and Dave’s family with house chores, and assist with additional expenses that come up when family members are in the hospital.  Sue expressed that she did not want her son & daughters lives to be interrupted with her illness.  At the ages of 12, 17 and 18, they were like most kids busy with school and sports activities. So the family helped get the kids where they had to be. 

As Sue and Dave relayed their story, I witnessed a beautiful love. Dave is protective of her in a delightful way.  And I found it so endearing that her other brothers and sisters were so selflessly involved in her road to wellness.

Modern medicine can do wonders. But the power of love… that fuels the mystery of miracles and happy endings.

Wendy

Sitting quietly may not result in organ donation – living kidney donor

Sarah Murnaghan,  a 10 year old girl who suffers from severe cystic fibrosis and whose efforts to qualify for an organ donation spurred public debate over how organs are allocated, underwent a successful double-lung transplant on Wednesday. Source: Comcast News.  Read more on Sarah receiving a lung transplant!
 
Many people nationwide understand the importance of raising awareness about organ donation.  If Sarah’s family had sat quietly by her bedside without fighting her story would be very different and likely one that none of us would have ever heard.Sarah-Murnaghan
 
I often see requests from men, women, and children in need of an organ and using social media as a way to get the word out  in asking for a donation. Social media can be an excellent way and their are many success stories utilizing facebook to find a donor. I recently read that one in 10 American adults, more than 20 million, have some level of CKD (chronic kidney disease).  Source: Centers for Disease Control and Prevention.
 
Why do some recipients appear to have a large group of family and friends ready to participate while others quietly die waiting for an organ. Why are some families and friends inclined to do whatever it takes and others are not? I know in my family when my brother Tim needed a kidney, he shared very little information.  He didn’t tell us he needed one because he was uncomfortable asking us — probably because he was the oldest of six and was never in the position to ask for help. 
 
I took it upon myself to find out more information and then got tested.  I was disappointed to find I was not a match and thought that was the end of it – until a good friend of mine Dr. Brian Justice mentioned that I could donate my kidney as part of an exchange program.  In a paired donor exchange, or a kidney swap, two kidney recipients essentially “swap” to willing donors. I had no idea this was a possible option! The hospital didn’t mention it to me nor did my brother Tim.
 
For my family, like Sarah’s, this story has a happy ending.  I was able to donate a kidney through the National Kidney Registry (NKR) and my brother in turn received one and is doing great. All of this happened within 24 hours of being approved on the NKR!
 
What is the answer for those waiting for a life saving organ donation? For Sarah it was getting the attention of the media, changing a law and getting on a list.
 
But what about those who need an organ– a living organ is often the best solution.  I urge you….
  • Find an advocate-  it can often be easier for someone else to tell your story than yourself 
  • Shout it from the rooftops – reach out to the press, social media and tell your family & friends
  • Tell a compelling story – tell your personal story.
  • Arm yourself with as much information as possible about the organ donation process and your options.
  • Attend a workshop for example:  http://www.facebook.com/#!/LivingKidneyDonorsNetwork

 Wendy