Adventures of a Kidney Donor

September 23, 2013

Sometimes Kidney Donors Need a Little Help

Filed under: Organ Donation Heroes,Support — by anne315 @ 6:14 pm
Tags: ,
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

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September 15, 2013

Need Kidney 4 Wife

kidney 4 wife

Larry and his sign, CBS News

Kidney donation stories always make me cry, (no surprise) and this one REALLY hits home.  You may have heard about his story. Larry Swilling has been married to his wife Jimmy Sue for 57 years. When Jimmy Sue’s kidneys failed, Larry knew he had to get her a kidney. So the 77 year old took to the streets–literally.

He walked the streets of his hometown Anderson South Carolina with a large sandwich board sign simply reading: “Need Kidney  4 Wife” and his telephone number. His wide needed a transplant and he wasn’t shy. It was the walk of his life–and hers. “I had to do something,” he said. “She looks after me, and I look after her.”

More than 100 people got tested to see if they were a match due to Larry’s efforts. Finally after a year a match was found, 41-year-old retired Navy lieutenant commander Kelly Weaverling. The surgeries took place September 11th and well.

Larry says he has two new missions: to find other donors for other people, and to find a way to properly thank the woman who gave him his wife back. His first mission is already yielding results; many people have stepped forward to get tested for live donation and/or are registering to be organ donors as a result of his story.

As for thanking Kelly, she says simply: “Just take care of your wife,” Kelly replied. “Just take care of her.” Steve Hartman, who reported this story says: “Doubt that’ll be a problem.”

Kidney heroes Larry Kelly and Jimmy Sue, CBS News

Kidney heroes Larry Kelly and Jimmy Sue, CBS News

I am SO happy that this story had a happy ending.  People in need of organs shouldn’t have to resort to such desperate measures. One way to keep people off of the streets with sandwich boards? REGISTER TO BE AN ORGAN DONOR, and encourage friends, family and co-workers to do so!

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

Go to List of Resources on Kidney Donation

August 12, 2013

Happy 2nd Anniversary!

Filed under: Kidney Donation — by anne315 @ 11:16 am
Tags: ,

2-cakeHappy 2nd anniversary to the recipient and me. Today marks two years since the kidney I used to have went to someone else out there. I don’t say “my” kidney anymore, I say “the” kidney since it is now his. I am glad it is his too!  Hope he is having a great dialysis free life and doing things he always wanted to do.

So many lives are touched by kidney disease and donation. I have several kidney heroes in my life. My dear friend Jackie of course. Three people who work with me:  Kiersten received a kidney from her friend Theresa, Larissa gave a kidney to her father, and Jon’s daughter Bridget received a kidney from her mom Amy.

I hear from people all over the world who have donated a kidney or are waiting for a kidney. I am grateful if this blog helps them in a small way. For those waiting, never give up hope!

What can you do for those waiting? My best anniversary present would be that everyone reading this sign up to be an organ donor if they haven’t done so already. Make sure your family and friends are registered. You CAN make a difference!

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

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
Tags: , ,

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
Tags: ,

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

May 3, 2013

Bridget, my Newest Kidney Hero!

Filed under: Kidney Heroes — by anne315 @ 5:44 pm
Tags: ,

bridgetThis beautiful young lady is Bridget, the daughter of a co-worker. I met her recently and she is full of energy and fun. She and her family have faced a challenge recently.

In February 2013 Bridget was diagnosed with an extremely rare chronic kidney disorder called *Nephronophthisis, a disease which has damaged both of her kidneys and is not reversible.

The great news is that Bridget has a donor from her family and surgery will be scheduled soon. The family needs help with expenses and a benefit is being held:

Sunday May 5, 2013 1:00 pm
Fowler Lanes 252 S Main St. Fowler, MI
989-593-2230

Bowling Tournament at 2 pm with registration at 1:00 pm. 

Silent Auctions

Bake Sale

50/50

Food and Drinks

$25.00 Per Person

All Proceeds Will Be Given To Bridget’s Family

Please Join Her Family For This Great Cause!!!

*Nephronophthisis  is a progressive hereditary kidney disease, marked by anemia, polyuria, and renal loss of sodium, progressing to chronic renal failure, tubular atrophy, interstitial fibrosis, glomerular sclerosis, and medullary cysts.

April 26, 2013

A Donation Hero

Filed under: Organ Donation Heroes — by anne315 @ 10:27 am
Tags: , ,
Cameron Lyle, ABC News

Cameron Lyle, ABC News

Of course the purpose of this blog is discussing kidney donation, but sometimes I encounter a story on other kinds of organ and tissue donation that I just have to share. Gabe Zaldivar wrote a great article on Cameron Lyle that is very inspiring.

Lyle is a track athlete at the University of New Hampshire. He is giving up his final collegiate season to donate bone marrow to a man he has never met. The recipient is a man only a few years older, a 28-year-old male who is suffering from acute lymphoblastic leukemia. Without the donation, the recipient has about a six month prognosis.

The donation means that Lyle can’t lift over 20 pounds over his head for several weeks, making discus, hammer and shot put impossible. He will have to miss the final two meets of his career, including the America East Championships.

Lyle says that he never really gave it a second thought: “I knew right away I was definitely going to donate.” His coach was supportive: “I told him, you either do 12 throws at the conference championships, or you give another man a few more years.” His mother is understandably very proud: “He’s my hero. I couldn’t be more proud of him and how he’s been so humble about it…I don’t know of many 21-year-olds who would give up their last year of track to help another human.”

As Zalvidar says: “Lyle is a fantastic athlete, but he is clearly an even better man.” Couldn’t have said it better. Lyle, you are a true hero! Thanks so much.

I have been thinking about joining the bone marrow registry myself. I am above the most needed ages, (18-44) but can still register. Kidney donors can register if otherwise in good health.

National Marrow Donor Program

Go to List of Resources on Kidney Donation

January 25, 2013

Happy 10th Anniversary Kiersten!!!

Filed under: Kidney Heroes — by anne315 @ 11:50 am
Tags: ,

kiki annivRecently my friend and co-worker Kiersten celebrated the TENTH anniversary of receiving her kidney from her friend Theresa. Our friend and co-worker Mark thought of this cute cake to mark the occasion.

Kiersten and Theresa are doing great.  I have always admired Kiersten because she never really complained about her polycystic kidney disease when she had every right to.  She just got on with the business of doing what she had to do. She used to do dialysis at work! She seldom misses work then and now which is remarkable.

I of course admire Theresa for her donation, she is another one of my heroes! Theresa couldn’t have her kidney removed by laparoscopy, she had the open surgery which takes longer to recover from. Theresa said she never thought twice about donating a kidney to her best friend. “She helped me learn about unconditional love,” Theresa said of Kiersten.

Theresa and Kiersten’s only disagreement? Kiersten roots for Michigan State University and Theresa for University of Michigan. I am a Spartan too but we all have to admit, U of M is great at kidney surgery!k and t

You can read Kiersten and Theresa’s story.

Go to List of Resources on Kidney Donation

December 30, 2012

2012 in review

Filed under: Uncategorized — by anne315 @ 10:03 pm

The WordPress.com stats helper monkeys prepared a 2012 annual report for this blog.

Here’s an excerpt:

4,329 films were submitted to the 2012 Cannes Film Festival. This blog had 17,000 views in 2012. If each view were a film, this blog would power 4 Film Festivals

Click here to see the complete report.

October 20, 2012

The Curious Case of My GFR Rate

Filed under: Medical — by anne315 @ 4:43 pm
Tags: ,

Hang on to your hats because this gets a little complicated. I am NOT a medical professional so this is just for information and referral to other sources. Please consult a medical professional if you have this issue or are curious about it.

Glomerular filtration rate (GFR) is a test used to check how well the kidneys are working. Specifically, it estimates how much blood passes through the tiny filters in the kidneys, called glomeruli, each minute.  Older people will have lower normal GFR levels, because GFR decreases with age. Your age, race and gender are factors in determining what is normal. The traditional stages of kidney disease as defined by GFR:

OK, are you with me so far?

My GFR saga began one day a few weeks ago when my doctor called me. She didn’t like my GFR number–it was too low–so she wanted me to re-test but without fasting beforehand. Her theory was that maybe I hadn’t had enough fluids before the test. So…I re-tested and the GFR rate was still too low. Technically, my number falls in the stage 3 Chronic Kidney Disease (CKD) range. Well that sounds scary.

Her next sentence made me freak out a little. “We want to ultrasound your kidney.” EEEK. I pulled myself together and started to think. My doctor is great and I am glad she is vigilant, but general practitioners don’t always understand what a nephrologist would. Maybe we should talk to the kidney people. So she called my coordinator at University of Michigan. In the meantime I work at a library so I got my hands on as much as I could about GFR rate. A lot of what I read indicated that the GFR rate will go down for kidney donors but this doesn’t necessarily mean that your kidneys are failing. Often it will go down then back up. It is an estimated number. Also, you need to look at it in relation to other measures such as albumin and proteinuria  levels, your blood pressure and blood glucose.

My other kidney numbers are normal so my transplant coordinator advised to re-test in a year. I am taking this seriously, but I don’t think I am in chronic kidney failure. If kidney donors were experiencing kidney and heart disease in great numbers as a result of low GFR rates, we would have heard about this by now. Many kidney donors experience a drop in GFR, and there is some discussion that there is a need to re-classify  these numbers for kidney donors.

All pretty confusing. The lessons from this I think are:  Get your kidney panel tests done yearly. General practitioners (not their fault, just the nature of medicine) don’t always know enough about kidney issues so consult a nephrologist or your transplant coordinator if the numbers aren’t normal. Don’t assume that you have CKD but don’t ignore your numbers either.  Read as much as you can. Some helpful sources for me were:

Go to List of Resources on Kidney Donation

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