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.

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

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!

You can read Kiersten and Theresa’s story.

Go to List of Resources on Kidney Donation

Here’s an excerpt:

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Click here to see the complete report.

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:

• NKF KDOQI Guidelines
• Medline Plus GFR
• Frequently Asked Questions About GFR Estimates
• Does Reduced Glomerular Filtration Rate Equate to Chronic Kidney Disease? BMJ 2012;344:e1167 
• CKD Develops in Many Living Kidney Donors
• What low GFR Means for Kidney Donors
• Living Donors Online Message Board

Go to List of Resources on Kidney Donation

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

The Donate Life plate carries the Donate Life logo and the message: “Be an Organ, Eye & Tissue Donor.”

A portion of the proceeds from the sale of the plate, which costs $35 in addition to any applicable registration fees, will go to the Thomas Daley Gift of Life Fund to promote organ, tissue and eye donation. The fund is named in honor of Thomas Daley, 23, who died in an accident in 2011 and was an organ donor. Daley the son of Rep. Kevin Daley, R-Lum, and his wife Deborah.

“The need is so great in Michigan and this will be a clear reminder to Michigan residents about the need for people willing to give the gift of life,” said Johnson, who has championed organ donation awareness efforts since becoming secretary of state. Under her leadership, record numbers of people are signing up as potential donors on Michigan’s Organ Donor Registry. The Registry grew by nearly 400,000 people – a 25 percent increase – last year.

The plate is formally known as the John J. Gleason Gift of Life Plate in honor of the state representative, John Gleason, who sponsored legislation creating the plate. Gleason is a kidney recipient.

“The new license plate is a great way for every compassionate Michigan citizen to show support, in a highly visible way, for organ, tissue and eye donation,” said Richard Pietroski, CEO of Gift of Life Michigan, the state’s organ and tissue recovery organization. “Just as importantly, it provides funding to educate the public about how everyone can be a hero to the thousands of people here and across the nation who need a life-saving transplant.”

Liver recipient Marge Del Greco of Farmington Hills will purchase one of the new Donate Life plates right away.

“The new Donate Life license plate is coming out just in time so I can get one for my birthday on Aug. 29,” said Del Greco. “If it hadn’t been for the generosity of my donor, I wouldn’t be celebrating any birthdays. I’m thrilled to get the new plate because it will bring awareness to the need for more donors and hopefully more people will sign up on the Donor Registry to save lives.”

More than 3,000 people in Michigan are waiting for life-saving organ transplants. A single donor can save up to eight lives through organ transplants and can improve the lives of up to 50 more through tissue and cornea transplants.

The Donate Life plate can be purchased by mail, fax or at any Secretary of State office and will be mailed to customers. Donate Life plates may also be personalized using Plate it Your Way.

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

Go to List of Resources on Kidney Donation

Great idea from http://kidneysandeyes.com/

Happy anniversary to the recipient and me. Sunday August 12 marks one year 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! See  The Kidney, My Kidney. Hope he is having some delicious cake or celebrating a year free of dialysis in some way. I want to blow Weight Watchers points out of the water and devour cake myself. I think of him often, that unknown someone out there. I picture a more active and free life for him. Very cool.

Kidney Cake Pops

My colleague Mari pointed out this article about altruistic/non-directed donors.  “U.S. Woman’s Altruism Starts Chain of Five Kidney Swaps, Extending Lives.” It’s great news that this type of donation is on the rise. We still have a long way to go, but each year seems to be getting better.  From the article:

Donor Honica Brittman decided to be part of a kidney swap after learning she could not donate to a family friend because of incompatibility, represents what experts say is a critical and growing number of “altruistic” or “non-directed” donors, people willing to donate to anyone in need as long as their blood type, antigens and other factors are compatible.

While there is no conclusive national data on the number of donors like Brittman, experts estimate they have increased to between 100 and 200 a year, up from just dozens a few years ago. ”After every chain that gets some publicity, there’s a flood of potential donors contacting kidney exchange networks and individual transplant centers,” Alvin Roth, an economics professor at the Harvard Business School said.

The year has gone by quickly! All of my medical checks are coming back normal. Aside from the small scars, I can’t even tell I had surgery.  So happy anniversary to us and here’s to all of the donors and recipients out there! Back to the cake. I have cake on the brain because of stupid bloody Weight Watchers and their Nazi Points Plus system.  Hmmm… not so sure about the kidney cake pops…

Go to List of Resources on Kidney Donation

All that is behind her now, and she is free of dialysis. Hooray! Jackie has been my dear friend since we were thirteen. I am so proud of her courage. Looking forward to many, many more years!

Go to List of Resources on Kidney Donation

*The picture isn’t really of us when we were young but it’s a good symbol.

Florinda Gotcher

It must be acknowledged that sometimes there are complications for kidney donors as a consequence of surgery. They are rare, but can be tragic. Florinda Gotcher donated a kidney to her sister. Tragically, right after surgery she bled internally and passed away. This was because the clip that was used to close her renal artery had slipped off. These tiny clips are not supposed to be used in laparoscopic kidney surgery. I had read about this before my surgery and asked the surgeon if he used these clips to close the renal artery and he said no, he did not use them.

The manufacturer has sent letters to surgeons warning them not to use the clips in laparoscopic kidney surgery. The clip packaging has a warning symbol advising doctors to look at the instructions that come with a separate tool used to apply the clips. The instructions, which are typically not kept in operating rooms, state the clips should not be used on kidney donors.

From the CNN article:

To remove a kidney for donation, surgeons have to cut the renal artery They then have to close it back up again, or the patient would bleed to death. There are various ways to close the artery. Many surgeons use staples, but some use tiny surgical clips to hold it closed.These clips are considered safe to use in many types of surgeries, but not laparoscopic kidney donor surgeries. In donors surgeries, surgeons leave only a tiny stump of renal artery, and the clips can slip off. That’s what happened to Gotcher: when doctors opened her back up, they found the clips had slipped off the stump and were floating in a pool of blood in her abdomen.

The article on CNN about the clip 

So potential donors, before your surgery ask your surgeon what they use to close the renal artery. 

Bless Florinda for her donation, and my thoughts go out to her family.

Go to List of Resources on Kidney Donation