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

 

Life’s assumptions – living kidney donor

The light on my car dash reads 15% Oil Life!  I wonder how often we react to information that is displayed in front of us and how it affects our daily life? I purchased a new car that now has about 5000 miles on it, the message on my dash last week read 20% oil life. So I stopped at my local garage station and asked the mechanic to check my car’s oil, after checking it he said it was fine. That didn’t make sense to me since the message on my dash said I had little oil life left. I explained to him that it was important for me to know since I was taking a trip that weekend and didn’t want to damage my car. They assured me the oil was fine. dont-make-assumptions

A week later the message on my car’s dash read 15% oil life and I now have an orange light on my dash and I’m worried.  So here is what’s going on in my head. Did I purchase a lemon? Will I consistently have problems with this car? What if I drive the car and their is no oil in it, will the engine die? Can I make it the two miles to the garage station? Maybe I should  pick up a quart of oil and drop it in my engine to be sure I am OK . Yes, believe it or not it’s all going on in my head. This time I went to a different garage and asked for help. I got out of the car to watch what they were doing and sure enough I got the same response that the oil was fine. The mechanic explained that the light is on to let me know that I will need an oil change soon and not that I needed oil!

Well that added unnecessary stress to my day, but in was small perhaps ten minutes! Where are we adding stress in our relationships and in everyday circumstances?   Consider that our subconscious mind is the part of your mind responsible for all of your involuntary actions.  Source: M. Farouk Radwan, MSc.  I think of our subconscious mind as narrating every moment of our life and it’s time to take control!

Miguel Ruiz who wrote the four agreements says “Don’t make assumptions”.  How often do we make assumptions in our life with our health, our partner and in general? In the book the four agreements Miguel Ruiz writes:

  • Find the courage to ask questions
  • Communicate often and clearly to avoid misunderstanding, sadness and drama

Ask yourself today.

Are you making assumptions with  your health, your partner, your life? What’s going on in your head and how can you change the messaging?

Quoting Dr. Wayne Dyer: Change your thoughts, Change your life.

With gratitude,

Wendy