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

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

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

April 28, 2012

Recycled Organs!

Erwin, Ray and Cera, Courtesy: Northwestern Memorial Hospital

In 2011 Cera Fearing donated a kidney to her brother Ray, who has focal segmental glomerulosclerosis.  FSGS causes scar tissue to form on kidneys. Shortly after the surgery, it became clear that the kidney would have to be removed because the FSGS was damaging it and the transplant was actually making Ray more ill.  Lorenzo Gallon, Ray’s doctor, realized that the kidney could still be viable in another person.  He asked Ray how he would feel about it going to someone else. Ray didn’t hesitate, and the kidney went to Dr. Erwin Gomez, where it is now thriving.  Amazing!

I couldn’t believe this story when I heard it. It’s wonderful that organs can sometimes be saved after being rejected and actually be transplanted into someone else. A friend of mine has a brother-in-law who donated an organ to his brother, only to have it rejected.  What heartbreak. Even just a few years ago all was lost when something like this happened. This story shows us that there is hope even for rejected organs.

How cool when a recipient becomes a donor! Cera, Ray, Lorenzo and Erwin are ALL heroes in my book! I sure hope Ray gets another kidney soon. He is back on dialysis waiting.  Ray and Cera, you are generous beyond words.

Read the MSNBC article

Read the CNN article

The kidney walks are coming soon. Please give to one or participate in a walk in your area.

Go to List of Resources on Kidney Donation

January 21, 2012

Michael: A Hero!

Filed under: Organ Donation Heroes — by anne315 @ 8:57 pm
Tags: , ,

Mikey holding a picture of his donor

I saw this on the news and it made me cry.  It’s a great story about an organ recipient who has paid it forward in a wonderful way. In 2008 Michael Carraway’s liver failed and he became critically ill. Shortly after that, he received a liver from a young man who died in a motorcycle accident.

After he recovered, Michael wanted to give something to the community and at the same time honor his donor’s memory. To that end, he told his mom he wanted to feed the homeless. So Mikey and his family have helped provide meals to the homeless in Oakland CA ever since. They also provide gift bags with essentials like socks and toiletries. Mikey has participated in every meal distribution since the beginning. Michael is a CNN heroWhat a generous young man and mature beyond his 13 years!

Mikey’s Meals also raises awareness about organ donation and they have signed up many donors. To find out more and to donate to Mikey’s meals go to: http://www.mikeysmeals.org/

May 8, 2011

I’ve Got Two, So What the Hell? You Can Have One

I just love this quote.  It was made by April Capone, the mayor of East Haven, Conn. She gave one of her kidneys to Carlos Sanchez, a resident of her city. The two connected on Facebook. I saw this story on the news the other day before I left for work. I am always seeing these stories on my way out of the door and they make me cry so I get messy but that’s a nice way to make your mascara run. This is what really set me crying because it’s what this kidney donation stuff is all about:

A year later, Sanchez’s health has been restored.Capone said of Sanchez, “Carlos wasn’t my brother, but he is now.”Sanchez calls Capone his “angel.”He told CBS News, “Because of her, I’m able to see my son graduate this year.”

WOW…seeing his son graduate. I sure hope I can help someone like this one day.

There is some controversy about organ sharing on social networking sites. As with everything on the Internet, there is good and bad. I am not a professional of course, but in my opinion it can be a great way to connect when standard organ donation lists are taking too long. Then again, be careful. ALWAYS involve a hospital as soon as you can. I do not think organ donors should ever be paid. I hate to think of the poor languishing while wealthier people get organs.

Go to List of Resources on Kidney Donation

February 9, 2011

Another Great Kidney Donation Story

Filed under: Organ Donation Heroes — by anne315 @ 10:01 pm
Tags: , ,

I saw this on the news and just loved this story. From the New York Times:

Wake Forest Baseball Coach Donates Kidney to Player By MIKE TIERNEY Published: February 9, 2011

ATLANTA — When Wake Forest offered him a baseball scholarship, outfielder Kevin Jordan focused his research on what any high school athlete would: the opportunity for playing time.

His father, Keith, had another set of priorities: Who is this coach, Tom Walter? Will he look out for my son?

Keith Jordan dug back to the coach’s previous tenure at the University of New Orleans. He discovered that, even though Hurricane Katrina had left Walter’s home in 12 feet of water, attention to his team’s needs never wavered.

Walter supervised the players’ temporary relocation to the campus of New Mexico State. And he vowed to assist anyone weighing a transfer to another college.

“A lot of coaches wouldn’t have done that,” Jordan said Wednesday.

Far fewer would do what Walter did this week: donate a kidney to a player. Among the many questions Jordan had posed about the coach, one had never occurred to him: Would he part with a vital organ if his son needed it?

“Any player on the team, past or present,” Walter said during a good-news conference at Emory University Hospital, two days after surgeons transferred one of his kidneys into Kevin Jordan.

The coach and the player sat in front of cameras and microphones at a table bedecked with Wake Forest caps — a scene reminiscent of the day last week when football recruits across the nation wore the hats of the colleges they had chosen.

This event was different, distinguished by the white-coated surgeons who flanked the athlete — and by the player’s periodic wincing from the fresh, deep incision in his right side.

“I didn’t ask,” said Jordan, a freshman from Columbus, Ga., who was not a transplant match with family members. “He volunteered. I’m just really thankful.”

Walter’s sacrifice was no surprise to the man who hired him at Wake Forest.

“He loves his players so much, it is unique,” Athletic Director Ron Wellman said by telephone from Winston-Salem, N.C. He, too, had looked into how Walter, 42, treated his players after Katrina. Wellman concluded, “It was remarkable.”

Speaking at Emory on Wednesday, the coach’s mother, Ann Walter, said: “He has a soft spot in his heart for kids. They are like family. He always stuck up for people that didn’t have the advantages he had.”

In high school, Walter sat during lunchtime with a special education student who was picked on by others and threatened to punch anyone who was tempted to be a bully.

Walter said he enjoyed his college days at Georgetown so much that the thought of Jordan sitting in a dorm room tethered at least eight hours daily to a dialysis machine — as Jordan was last semester — was unacceptable.

“It just breaks your heart,” Walter said.

He said that his motivation in donating a kidney was not getting back Jordan as a player, but giving him “just a chance to be a college freshman.”

“I couldn’t believe what he had endured,” Walter said. “It was obvious to me this was the right thing to do from Day 1.”

That day arrived last fall, soon after Jordan, 19, was found to have ANCA vasculitis, a rare kidney disorder resulting from autoimmune swelling. The diagnosis took months to pin down.

Keith Jordan recalled one of many unsettling days at the hospital when his cellphone rang with what would customarily be a joyous call. Given the frightening uncertainty of his son’s health, it barely registered when the Yankees informed him that they had selected his son in the 19th round of the amateur draft.

Kevin Jordan managed to pass all his classes in his first term and practice with the team when he did not have to be on a dialysis machine. His power and speed were noticeably lacking from what Walter had seen during his recruiting trips to Columbus.

In qualifying as a donor match, Walter, a father of a son and a daughter, beat odds of about 7 to 1, according to Dr. Kenneth Newell, who handled the first half of the transplant. Assured that he could resume a normal lifestyle — the original kidney donor in 1954, Newell said Wednesday, lived until last year — and aware that Jordan could languish on a national donor list for up to five years, Walter said he never thought twice about his pledge.

Newell and Dr. Allan Kirk, who operated on Jordan, said that medical advances have increased the success rate of matches and transplants.

A recipient, Kirk said, “receives an extra 10 years of life” over a dialysis patient. “Kevin should live a life that is normal in activity and normal in length,” he said.

Their story has resonated across the country, nowhere more movingly than in Dallas. In 2007, in an action that received widespread publicity, the retired Cowboys cornerback Everson Walls donated a kidney to ex-teammate Ron Springs.

“That was amazing,” an ebullient Walls said by phone Wednesday of Walter’s donation. “Just amazing.”

Walls said he was especially impressed that, unlike he and Springs, Walter and Jordan were members of different age and racial groups.

The transplant raised the inevitable question of whether Wake Forest violated an N.C.A.A. rule by providing an “extra benefit” to an athlete, defined as a special arrangement not made available to other university students. Wake Forest’s Wellman acknowledged that an extra benefit was indeed conferred.

“No doubt about that,” he said. “I dare anyone to challenge this benefit.”

Erik Christianson, director of public and media relations for the N.C.A.A., said: “We wish Coach Walter and Kevin Jordan all the best. This wonderful act of compassion and generosity is truly extraordinary, beyond the scope of any rule.”

Walter said, “We answer to a higher calling on this one.” He said he plans to attend practice this week and to fill out the lineup card at the season opener Feb. 18.

Jordan can expect to pick up a bat in eight weeks for practice swings, Kirk said.

“I’m definitely going to play hard for Coach,” Jordan said. “I can’t say no to him. I’ve got his body part in me.”

Go to List of Resources on Kidney Donation

January 20, 2011

Organ Donation: Hope After Tragedy

No news for me yet in 2011. I have a feeling that the last blood tests are not showing a match for the recipient and me. A bummer if this turns out to be the case, but it would be better to have a good match than one that is looking iffy. People will think I have been making this whole thing up! I started my tests in March last year. Chad, the coordinator at U of M told me that this whole process can take a year.

Christina-Taylor Green, the little girl tragically murdered in Tucson, saved another little girl’s life when her organs were donated. I hope it comforts the family. They sound remarkable! They are urging others to consider organ donation. 

It breaks my heart every time I see her beautiful face in the pictures we have seen in the media. She sounded like a wonderful little girl. Her legacy is a speck of hope in a sometimes very sad world.

Consider living donation or donating after you are gone:

December 31, 2010

Kidneys in the News!

Richard Herrick (left) Ronald Herrick (right)

I hope sometime in 2011 I will be walking around with one kidney and someone with three! I haven’t heard anything from the latest blood tests but I suspect everything slows down around the holidays.

The news has been full of kidney stories lately. The picture on the left shows the first successful kidney donor and recipient.  In 1954 Ronald Lee Herrick donated a kidney to his twin brother Richard. This allowed Richard to live for eight more years. Ronald died December 27 at the age of 79. His act of love for his brother not only extended Richard’s life, it led the way for successful organ transplantation in the US and the world. Read more.

In my area a woman named Deborah Fay McArthur sadly passed away unexpectedly just before Christmas. She saved six lives when her family donated her organs and a family friend

Deborah Fay McArthur

received a kidney. Deborah had not specified her wish to donate on her driver’s license but her family knew that is what she would have wanted. Be sure to talk to your family about your wishes and register to be a donor in Michigan or your state.  

CNN had a charming story about ten year old Vivaca Loyd. Her mother made a Facebook plea for a kidney for Vivaca and Cathy Olsen stepped forward as a donor. Vivaca is now off dialysis thanks to Cathy and her mother.

Vivaca and her mom

MSNBC ran some features on dialysis.  One talked about how some clinics are poorly managed leading to higher mortality rates for kidney patients at these facilities. Another story talks about how much dialysis impacts the life of patients. Most patients cannot work because it takes so much time out of their lives and it makes them very weary. Dialysis costs much more than kidney transplants in the long run. Dialysis costs $71,000 a year, anti-rejection drugs after a transplant cost $14,000 a year.

Last a weird story, the condition of parole for two sisters was for one to give a kidney to the other. The two sisters from Mississippi have spent 16 years in prison over an $11 armed robbery. Gov. Haley Barbour stipulated that Gladys Scott must donate a kidney to her sister Jamie after they are released.

Go to List of Resources on Kidney Donation

December 17, 2010

An Organ Donation Hero

Keith Olbermann interviewed Carlos Olivas Jr. last night. This wonderful young man was moved by the plight of Francisco Felix, the man whose donor liver went to another patient because  he could not come up with $200,000 overnight to receive the surgery. Ths article from the Arizona Republic tells Carlos’ story:

“Boy, 12, Raising Money for Transplant Patient” by Michelle Ye Hee Lee – Dec. 12, 2010 12:00 AM
The Arizona Republic

Carlos Olivas Jr., 12, loves to play video games and baseball. But for the past three weeks, Olivas has put both hobbies on hold to pursue his new goal: to raise at least $2,500 in dimes for a stranger to receive a potentially life-saving surgery.

The seventh-grader has been standing at the corner of 75th Avenue and Camelback Road in Glendale every day after school to solicit donations for Francisco Felix, a Laveen liver-disease patient who lost his chance to receive a transplant procedure when he could not come up with $200,000 overnight to receive the surgery.

Felix is one of about 100 Arizonans who lost coverage for transplant surgeries through the state’s version of Medicaid.

Olivas, from Glendale, decided to collect donations after watching a local news segment on Felix. Olivas’ dad has liver
cirrhosis, and Felix’s story hit home. Olivas cried at the thought of his dad being denied a transplant surgery and no one doing anything about it.

Last Tuesday – two weeks after Olivas began his “dime walk” – he met Felix at a news conference. The two spoke through a translator, and then embraced. “You can tell he’s real stressed out. I’m sure he wants to watch his children grow up,”  Olivas said. “I hope I could raise enough money to help him get his transplant.”

Olivas goes home to do his homework after school ends at 3:15 p.m. By 4:30 p.m., he is out at the busy intersection collecting change for an hour, holding a Folgers container and a large sign explaining his cause. On weekends, he starts his hourlong shift at noon.

Some days, Olivas only collects a few dollars. But last Wednesday afternoon, the day after local media first began reporting on his efforts, drivers gave him $10 and $20 bills. Some drivers waited, holding up traffic after the light turned green, until Olivas came to their windows to collect their donations.

Olivas recruited his brother to collect money at the opposite corner of the intersection. His school also has joined in on the effort, holding a “dress-down” day Friday when students paid at least $1 to wear casual clothes to school instead of uniforms.

The school raised $1,557.37 as of Fridayand will continue accepting donations until Thursday, when Olivas will present the money to Felix and his family at a school assembly.

“So often as administrators you get caught up in the X’s and O’s of the curriculum and the need to teach the academics that you forget how wonderful it is when you see the social growth and the maturity of your students,” said Jeff Vilardi, assistant principal at Don Mensendick School. The school’s social-studies teachers are using the situation to teach their students about government and the realities of a state’s budget.

The staff and students have shown an “overwhelmingly positive response,” Vilardi said, partly because the student body is largely Hispanic, like Felix, and some families also are enrolled in Arizona Health Care Cost Containment System.

“They’re really rallying behind what could be a reality for them,” Vilardi said.

Olivas doesn’t know how much he has raised yet, but he estimates he has collected about $200 just by standing out on the street. He said he doesn’t want to count until later this week.

Olivas’ dad and aunt sometimes join him at the intersection, but they leave the fundraising up to Olivas because it’s a personal goal for him, and they want to keep it “his thing.”

“That’s all he’s focused on now – school, and this,” said Anita Ruelas, Olivas’ aunt. “The only time he doesn’t have the sign is during school hours.”

Olivas hopes to start a foundation for transplant patients when he grows up. Olivas said he wants his foundation to be similar to the breast-cancer movement.

“I feel sad because they’re (transplant patients) dying slowly, and I want to help them live longer,” Olivas said.

If you wish to help the Felix family and others, go to the National Transplant Assistance Fund. Contributions can also be made by phone at 1-800-642-8393.

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