Adventures of a Kidney Donor

April 6, 2016

Support a Kidney Walker!

Filed under: Support — by anne315 @ 5:25 pm
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2014kidneyWalk-logoThe 2016 Greater Lansing Kidney Walk is Sunday June 12. Kidney Walk is the nation’s largest walk to fight kidney disease. I am walking in honor of my dear friends Jackie and Kiersten, who have bravely battled kidney disease and have received transplants. They inspire me every day with their courage.

Several people I know have been impacted by kidney disease as well: My friend Larissa gave a kidney to her dad a few years ago. My friend Jon’s young daughter contracted kidney disease and his wife donated a kidney to her.

The walks not only raise money, they also raise awareness about kidney disease and the need for donors. Too many people are still waiting for a life saving kidney.

Look for kidney walks in your area. Walk or support a walker!

Go to List of Resources on Kidney Donation

September 25, 2015

Michigan Libraries for Life 2015

mich lib for lifeOctober is the month for the annual Michigan Libraries for Life campaign. My library, Capital Area District Libraries is participating to

help spread the word about organ donation and to help people sign on to the Michigan Organ Donor Registry. From Monday, Oct. 5 to Friday, Oct. 9 you can visit participating CADL libraries* to learn more or to sign up with the Registry. It only takes a few minutes but the impact is enormous! Shout out to our neighbor, East Lansing Public Library is also participating.

About 3,400 people are waiting for a life-saving organ in Michigan today.  Twenty-one people die each day because an organ transplant was not available in time. Your decision to someday donate could save up to eight lives. Your tissue can ease the pain and improve the lives of up to 50 more sick, injured and blind people.

Probably someone you know has been or will be impacted by the need for an organ or tissue. We have several library staff members directly impacted by organ donation:

Bridget cuts the ribbon for the 2015 Greater Lansing Kidney Walk Photo by mikidneywalk

Bridget cuts the ribbon for the 2015 Greater Lansing Kidney Walk
Photo by mikidneywalk

Jon from Information Technology: A few years ago, Jon’s young daughter Bridget was diagnosed with the extremely rare chronic kidney disorder Nephronophthisis which damaged both of her kidneys. Fortunately, Bridget didn’t have to go on the waiting list. Her mom Amy gave her the gift of life, donating one of her kidneys to Bridget.

Kiersten and her 10th anniversary kidney cake!

Kiersten and her 10th anniversary kidney cake!

Kiersten from Circulation was diagnosed with polycystic kidney disease several years ago. She had started dialysis when her best friend Theresa stepped up to give her the gift of life in 2003. When Theresa found out she was a match for her friend she had only one thing to say at the time: “Let’s do this!”

If you have been reading my blog posts, you know why I am so passionate about organ donation. My dear friend Jackie bravely battled polycystic kidney disease and dialysis for years. She inspired me to donate a kidney to a stranger in 2011. Thankfully Jackie received a kidney in 2010!

*If you live in the greater Lansing area, visit a participating CADL library or East Lansing Public Library during the campaign. If you are a Michiganian, see if your local library is participating. If not, ask them to join next year!

CADL location and times:

Join the Michigan Registry or Join the Registry in your state.


May 17, 2015

Support a Kidney Walker!

Filed under: Support — by anne315 @ 2:41 pm
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2014kidneyWalk-logoThe 2015 Greater Lansing Kidney Walk is Sunday June 15.  I have a couple of teams with personal ties and would love for you to donate to them:

My dear friend Jackie and her family are walking in memory of her mother Freda, who left us too soon after her brave battle with kidney disease. Jackie is one of my kidney heroes! She received a transplant in 2010 and inspires me with her courage every day. Many people in her family have battled kidney disease. You can give to Jackie’s team here: Freda’s Kids.

My co-worker Jon has two kidney heroes in his family. His wife Amy gave the gift of life to their daughter Bridget, who battled kidney disease when very young. You can give to their team here: Team Giggles.

My co-worker and friend Kiersten is a kidney recipient and advocate. She received the gift of life in 2003 from her best friend Theresa. You can give to Kiersten’s team here: Team Kiki.

More than 80 cents of every dollar donated to the walk directly supports programs and services for those with kidney disease. To learn more visit, www.kidney.org.

Look for kidney walks in your area. Walk or support a walker!

Go to List of Resources on Kidney Donation

July 30, 2014

The Living Donor Protection Act

Filed under: Support — by anne315 @ 9:58 pm
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organ donorJust a quick post (my laptop is on its last legs, new one on the way!) to say that a VERY important piece of legislation is pending in Congress. I received this in my email today. Contact your senators and representatives now!

****

Today, July 30th, The Living Donor Protection Act (H.R. 5263) was introduced by Representative Jerrold Nadler (D- NY) along with Representative Michael Burgess (R-TX).  This bill, if passed, will protect living donors from insurance discrimination, grant leave from work to recover from transplant surgery, and promote education about living donation.  Email your Members of Congress now to ensure these lifesaving heroes are protected.

The bill will protect living organ donors’ access to life, disability and long-term care insurance by prohibiting insurers from denying coverage or from charging higher premiums.  The bill also clarifies that living organ donors may use time granted through the Family and Medical Leave Act (FMLA) to recover from transplant surgery. Furthermore, the bill requires the Secretary of Health and Human Services to educate the general public on the benefits of living organ donation and the rights of living donors.

H.R. 5263 will help kidney patients by removing barriers to living organ donation and thereby strengthening access to transplantation.  Most notably, it protects those life-saving heroes who choose to be living organ donors.  Living donation helps reduce the amount spent on dialysis and other expensive medical treatments for individuals with kidney failure.  However, the bill can’t pass without your support!  Click here to ask your Representative to cosponsor H.R. 5263.

Thank you,
Bruce Skyer
Chief Executive Officer
National Kidney Foundation

Go to List of Resources on Kidney Donation

May 6, 2014

Support Kidney Donors and Recipients in the Kidney Walks!

Filed under: Support — by anne315 @ 8:35 pm
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Kiersten celebrating 11 years after transplant

The 2014 Greater Lansing Kidney Walk is Sunday June 22. If you are from the Lansing area, consider walking with us or making a donation. If you are from another area, kidney walks are taking place all over the world so check them out. Last year it was so cool to see so many walkers with “I am a living kidney recipient” or “I am a living kidney donor” shirts on!

I have three teams with personal ties and would love for you to donate to them.

My dear friend Jackie and her family are walking in memory of her mother Freda, who left us too soon after her brave battle with kidney disease. Jackie is one of my kidney heroes. She received a transplant in 2010.You can give to Jackie’s team here: Freda’s Kids.

The family of Freda Gilbert Robertson is walking!

The family of Freda Gilbert Robertson is walking!

 

Another kidney hero of mine is my friend and co-worker Kiersten. She received the gift of life from her best friend Theresa in 2003. You can give to Kiersten’s walk team here: Team KiKi.

Bridget and Amy2

Amy and Bridget

My co-worker Jon has two kidney heroes in his family. His wife Amy gave the gift of life to their daughter Bridget last year. Both are doing well! They have made appearances on local TV and are featured in the National Kidney of Foundation of Michigan Annual Appeal. You can support Amy’s team Giggles here.

Walk or support a walker!

Go to List of Resources on Kidney Donation

January 24, 2014

Help a Kidney Donor

Filed under: Support — by anne315 @ 8:14 pm
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k and tAwhile ago, I told the story of Kiersten and Theresa. Kiersten is my good friend and co-worker. Her best friend Theresa gave her a kidney in 2003. Theresa gave at that time and now it is time to give back to her if we can.

Theresa’s only child, her son AJ, has just passed away after a brave battle with Cystic Fibrosis. He was only 23 years old. She could use a little help with his funeral expenses.

Kiersten has set up a page if you would like to donate.

We kidney people stick together!

Go to List of Resources on Kidney Donation


September 23, 2013

Sometimes Kidney Donors Need a Little Help

Filed under: Organ Donation Heroes,Support — by anne315 @ 6:14 pm
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rodney and carl

Rodney and Carl

Many times kidney donors need financial support. Even when your medical expenses are paid, you may not get adequate sick time compensation from your job, may need help with travel and lodging etc. There outta be a law…I need to lobby for that someday…

I was fortunate when I did my donation because my place of employment was very supportive and let me use my sick days (I had hundreds of hours) which covered the weeks I was out with regular pay.

I just saw this story today about a donor who needs help.  You can donate here: The Carl Shull Donor Fund This is the story from Rhonda Alonzo:

...Many members of our family have been struck by polycystic kidney disease. We have watched our mother and her siblings battle this disease for years resulting in kidney transplants for our mother and uncle while two of our aunts lost their battles due to the side effects of this horrible disease.

My brother, Randy started dialysis a couple of months ago and my other brother, Rodney just started dialysis last week.

Many people who need transplants of organs cannot get them because of a shortage of donations. Every month, more than 2,000 new names are added to the national waiting list for organ transplants, and about 18 people die every day while waiting for an organ transplant in the U.S. Organ donation helps others by giving them a second chance at life. A living donation takes place when a living person donates an organ or part of an organ to someone in need of a transplant.

Rodney has a very generous friend named Carl Shull who has agreed to donate one of his kidneys to him. Carl has gone through the testing and is confirmed to be a match. The surgeon’s from the University of Michigan have scheduled the removal of Carl’s kidney and the transplant to my brother to take place on October 18, 2013 but we need you help!

Carl is married and has two children to support. Although his medical expenses are being taken care of as a living donor, he will only be receiving $300.00 a week from his employer during his 8 week recovery from surgery and that is just not enough for him to pay his household expenses. In an effort to show our appreciation, we are trying to assist his family by raising funds to pay his mortgage, utilities, car payment and insurance and health insurance premiums while Carl recovers for the 8 weeks. Unfortunately, any donation you make is not tax deductible since it will be helping pay the donor’s expenses but any funds remaining after paying those expenses will be donated to the National Kidney Foundation under both Carl and Rodney’s names.

Please consider helping us thank Carl and his family for his selfless act by making a donation. If you prefer, you could also make checks payable to The Carl Shull Donor Fund and mail them to me, Rhonda Alonzo, 35110 Savannah Lane, Farmington Hills, Michigan 48331.

Thank you in advance for your support!!!  –Rhonda

The Carl Shull Donor Fund

Go to List of Resources on Kidney Donation

June 9, 2013

The Solution: Register to Be an Organ Donor!

Filed under: Support — by anne315 @ 1:08 pm
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donorI talk about living donation a lot, but it is always important to remember how crucial donation after death and organ donation registries are.

It is heartbreaking to see children in dire health waiting desperately for organs. Recently little ten year old Sarah Murnaghan has been in the news. She suffers from cystic fibrosis and is in desperate need of a lung transplant. Her chances of getting an organ were limited because of the rules set down by the Organ Procurement and Transplantation Network, or OPTN. There is a two tier system that limits children to receiving organs from other children and teens and adults get the first chance at adult organs. Her parents fought the rule in court. Now Sarah and another child desperately in need of a transplant, eleven year old Javier Acosta, are eligible for adult or child organs.

The whole heartbreaking process, a dilemma for the families, medical professionals and courts, could be avoided if more people would register to be organ donors.

There is a great article by JoNel Aleccia on NBC News.com that discusses the Murnaghan situation and the overall organ shortage problem. Excerpts from the article:

Only about 45 percent of adults in the U.S. — nearly 109 million people — are organ donors, a figure that donation and transplant experts say seems tragically low when the public’s attention is riveted on the lack of organs for a child such as Sarah.

The biggest barrier to registering is procrastination — tempered with a little denial, said Sharon Ross, a spokeswoman for the San Diego affiliate of Donate Life.

More than 118,000 people are waiting for organs, including nearly 76,000 who actively need them now, according to OPTN. About 18 people die every day awaiting transplants.

“People sometimes believe that organ allocation is the primary issue, when in reality, the crisis is the lack of supply of organs for transplant,” Fleming said.

Donation advocates say there’s one certain way to avoid what Sebelius described as the “incredibly agonizing” situation of having to ration organs: Get people to donate.

“We certainly believe that if everyone were a registered donor, it could double the number of transplants each year,” said Fleming, noting it would boost last year’s 28,000 transplants to more than 56,000.

They work hard to rebut common myths about organ donation designation, including this one: ER doctors won’t work as hard to revive potential donors in a crisis.

Minority groups including blacks, Hispanics and Asians are often reluctant to donate, primarily because of religious or cultural reservations, experts say. White people account for about two-thirds of all organ donations.

“The real message is this,” Fleming said. “If you feel discomfort or outrage for this young woman, the real response, the way to provide hope to people like Sarah is to become an organ donor.”

There are at least 3,000 Michiganders currently on a waiting list for an organ. Michigan has made big strides lately toward adding more names to the donor registry but we have far to go.

Join the Michigan Registry or Join the Registry in your state.donor license plate

Go to List of Resources on Kidney Donation

June 3, 2013

Support a Kidney Walker!

Filed under: Support — by anne315 @ 2:14 pm
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The family of Freda Gilbert Robertson is walking!

The 2013 Greater Lansing Kidney Walk is Sunday June 23.  I have three teams with personal ties and would love for you to donate to them.

My dear friend Jackie and her family are walking in memory of her mother Freda, who left us too soon after her brave battle with kidney disease.  Jackie is one of my kidney heroes. She received a transplant in 2010.You can give to Jackie’s team here: Freda’s Kids.

Another kidney hero of mine is my friend Kiersten. She received the gift of life from her best friend Theresa in 2003. You can give to Kiersten’s walk team here: Team KiKi.

Kiki of Team Kiki!

Kiki of Team KiKi!

My newest kidney hero Bridget and her mom will be having their surgeries soon. Bridget is getting the gift of life from her mom. This year Bridget’s aunt is walking for the Accident Fund. 

Look for kidney walks in your area. Walk or support a walker!

bridget

Bridget’s aunt is walking!

Go to List of Resources on Kidney Donation

September 24, 2012

Michigan Libraries for Life

Filed under: Support — by anne315 @ 3:34 pm
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On October 2 and 3 the library where I work is participating in the Michigan Libraries for Life campaign. The campaign is organized through the University of Michigan’s Taubman Health Sciences Library and is meant to offer the public a quick and easy resource for joining the Michigan Organ Donor Registry. U of M was the hospital that performed my surgery so I am very excited that the hospital and my workplace are coordinating in this way.

Academic and Public libraries will be registering organ donors and helping raise awareness on the need for donors during the campaign. From the Michigan Libraries for Life site:

More than 95% of Americans support organ, tissue and eye donation. In Michigan, only 34% of adults have joined the Michigan Organ Donor Registry, far lower than the 43% average nationwide! That discrepancy is largely due to state residents not knowing how to properly sign up. Michigan Libraries for Life helps to address that informational need.

Some FAQs from the site:

Will doctors work as hard to save my life if they know I’m a donor?
Yes, absolutely. This is, perhaps, the number one myth about organ donation. Every effort to save your life will be made before donation is considered or even discussed. By law, the medical team treating you must be completely separate from the transplant team.

How much does it cost to donate?
Nothing. It won’t cost your estate or your family anything if your organs and tissue are transplanted. All procedures related to the donation are covered by Gift of Life Michigan.

Will I still be able to have an open casket at the funeral?
Yes, neither organ nor tissue donation interferes with open casket memorials.

Can minors register to donate?
Yes, but until they turn 18, their parents have the ultimate say in whether they become an organ donor.

Will my religion approve of donation?
Most major religions approve of organ, tissue and eye donation and consider it one of the highest acts of compassion and generosity. View a list of specific religious organizations and their positions on donation.

More information at: Michigan Libraries for Life

To join the Michigan registry go here. To join the registry in your state go here.

Go to List of Resources on Kidney Donation

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