Moving Right Along

With the advent of my friend and co-conspirator's upcoming book, Dancing with Rejection, I am compelled to re-ignite this blog in hopes of continuing to serve all of our fellow kidney patients.

You see, my friend and nearly world-renowned artist Michael Gaudet is in the final stages of publishing his debut book (read more about it here), and when he kindly shared the link for my blog, I realized it needed a little attention!

My aim for this blog is to provide a myriad of resources for pre- post- and current kidney patients and their families. If you aren't sure you fall into one of these categories, ask yourself the following questions:

Have I/Am I/Do I or someone I know...

1.  ... been diagnosed with ESRD (End-Stage Renal Disease)?
2.  ... been diagnosed with ESRF (End-Stage Renal Failure)?
3.  ... on dialsyis?
4.  ... on the waiting list to receive a transplant?
5.  ... received a kidney or kidney/pancreas transplant?
6.  ... seeing a nephrologist (kidney doctor)?
7.  ... suffer from diabetes that has led to kidney complications?
8.  ... have recurrent kidney infections leading to scar tissue?
9.  ... ever donated a kidney?

I propose a challenge!

Let's see how many people we can help with the following experiment:

Ask 6 of your friends to ask six of their friends to ask six of their friends (that's 18 people for each reader to reach out to, however indirectly) if they or someone they know have experience with kidney issues. Use the above list to help you frame your question(s).

My hypothesis is that, regardless of your social circle, you will find at least 5 of those 18 people are  experiencing (or have experienced) severe kidney issues. Or know someone that has.  And as the circle widens, that number will also increase, and probably exponentially.

When you find those people, alert them to helpful resources. Knowledge is power, after all!

Some resources you can share include:

• National Kidney Foundation (U.S.)  www.kidney.org
• National Kidney Foundation (Canada)  www.kidney.ca
• National Institute of Health (U.S.)  http://www.nlm.nih.gov/medlineplus/kidneydiseases.html
• The Renal Association (UK)  http://www.renal.org/information-resources/the-uk-eckd-guide
• Davita Healthcare  http://www.davita.com/
• This blog!  www.christinadgeorge.blogspot.com
•  Kidney Health Australia http://www.kidney.org.au/
• Body and Health Canada  http://bodyandhealth.canada.com/condition_info_details.asp?disease_id=249
• Renal Support Network  http://www.rsnhope.org/  (Lori Hartwell, author of Chronically Happy)

Also, be sure to see my "Resource" link for more info, including children's literature to help them deal with it personally or indirectly.

Encouraging news!

http://youtu.be/3TrW5bRlX9s

The National Kidney Foundation has encouraging news for people awaiting transplantation as well as for those currently on life-saving immuno-suppressant drugs. Check it out! 

The best part is that it's from '09, so while they say it's a 10-year plan, this means we/they should already be taking steps toward it!

 

Nigeria and Organ Transplants

A young man requested information on how he can donate a kidney in forum called Kidney Transplant Donors and Recipients on Facebook. Without looking into his background, I automatically provided a public link to the National Kidney Foundation's website.

Can the un-insured get kidney transplants? YES!

Refute to article

English: Centers for Medicare and Medicaid Services – Medicare & You 2010, official government handbook. (Photo credit: Wikipedia)

While the Ethics of Organ Transplants article on About.com may be interesting, it does have one (at least) glaringly false statement! I’ve never been a big fan of the site anyway. And, really? I have to register with it to comment on Austin Cline’s article? C’mon. And I’m not giving out my email address just to correct some guy whose focus is on atheism and agnosticism anyway (ie; he doesn’t really care about organ donation).
Since I cannot comment (the easy way!), I will address it here. After all, some of you might have the same argument, or might have heard the same issue, and I want you to know that Cline’s argument is JUST NOT TRUE. He claims that, Overall, transplants are a procedure for people with lots of money or lots of insurance.
Listen to me carefully, especially if you or someone you know is need of a transplant: these procedures are NOT just for people with lots of money or lots of insurance. Not at all. My first transplant was covered by my dad’s insurance, yes.  I don’t know if he had good insurance. I know they made us jump through hoops to get it and to do the follow-up visits and I will never personally carry that particular one.
My 2nd one was covered by a combination of my husband’s insurance, Medicare, and the hospital’s kidney foundation/thing-a-ma-jigger/deal. No, I am not of retirement age and that was not a typo – Medicare actually has special clauses for various extenuating circumstances. ERSD is one of them. My 3rd transplant was covered by Medicare, the hospital’s kidney foundation thingy and outside funding/granting agencies due to extenuating circumstances.
Poor people CAN and DO have transplants, all the time. Ask a social worker or a member of your transplant team or your doctor for guidance. They are your first resource and can help!

Related articles

• Save Lives Now – Extend Kidney Anti-Rejection Drug Coverage (bobsnewheart.wordpress.com)
• Darmstadt woman finally cleared for kidney transplant (courierpress.com)
• Altruism Isn’t Working – Should We Be Able to Buy Organs? (bobsnewheart.wordpress.com)
• Financial Help for RA Treatment (everydayhealth.com)
• HCI’s bone marrow transplant unit is newest in Utah (fox13now.com)

RESOURCES FOR CHILDREN & ADULTS REGARDING TRANSPLANTATION

The following is a (by far incomplete!) list of some of the vast amount of materials available for both children and adults who may be facing transplantation of various organs.

There are childrens' books written by the children who have experienced transplantation, or witnessed a loved one going through it. Juvenile. Comics. Humor. There are resource manuals for adults. Numerous website. Fiction and non-fiction.

I have categorized it in an attempt to simplify your search.

Best wishes.

HELPFUL BOOKS, JOURNALS, WEBSITES

BOOKS

Children’s

• Pennies, Nickels and Dimes, Elizabeth Murphy-Melas, Anthony Pouncey

• Precious Gifts: Katie Coolican’s Story, Barklay and Eve Explain Organ Donation, Karen L. Carney

• Now Caitlin Can: A donated organ helps a child get well, Ramona Wood

• Dorien’s New Liver, Beatrix Kinderkliniek

• Lizzie Gets a New Liver, Lizzy Ribal, Beth Basham, Patricia Ritter McCracken

English: The restored scene from Dr Barnard’s first human heart transplantation – world’s most famous heart of young donor Denise Duval just died…. (Photo credit: Wikipedia)

Juvenile

• There’s a Little Bit of Me in Jamey, Diana M. Amadeo

Young Adult

• Pig-Heart Boy, Malorie Blackman (shortlisted for Carnegie Medal)

• Stealing Kevin’s Heart, M. Scott Carter

• The Bower Bird, Ann Kelley

• She Died Too Young (One Last Wish), Lurlene McDaniel

• Heart Transplant, Andrew Vachss (Bullies) (featured in PW)

• Organ Transplants: A Survival Guide for the Entire Family, Tina P Schwartz

Autobiographies/Biographies/Memoirs

• Gary Coleman, Medical Miracle, Bill Davidson

• Baby James: A Legacy of Love and Family Courage, Thos Kent Miller

• To the Edge and Back: My Story from Organ Transplant Survivor to Olympic Snowboarder, Chris Klug, Steven J. Jackson

• A Transplant for Katy, Luis Fabregas

• Christiaan Barnard: One Life, Christiaan Barnard, Curtis Bill Pepper

• Or You Can Let Him Go by Kathryn Seidick (featured in NYTimes, endorsed by Nora Roberts)

• Chronically Happy: Joyful Living in Spite of Chronic Illness by Lori Hartwell

• Larry’s Kidney: Being the True Story of How I Found Myself in China with My Black Sheep Cousin and His Mail-Order Bride, Skirting the Law to Get Him a Transplant–and Save His Life , Daniel Asa Rose

• Face to Face: My Quest to Perform the First Full Face Transplant by Maria Z. Siemionow

• Every Second Counts: The Race to Transplant the First Human Heart
  by Donald McRae

• Heart of Iron: My Journey from Transplant Patient to Ironman Triathlete
  by Kyle Garlett

Other NF

• Transplant: From Myth to Reality, Nicholas L. Tilney

• A History of Organ Transplantation: Ancient Legends to Modern Practice, David Hamilton

• Artificial Organs (New Techniques in Surgery Series) by Nadey S. Hakim NF

• On the List: Fixing America’s Failing Organ Transplant System, Steve Farber, Harlan Abrahams

• Last Best Gifts: Altruism and the Market for Human Blood and Organs, Kieran Healy

• Coping with an Organ Transplant: A Practical Guide, Elizabeth Parr, Janet Mize

• Raising the Dead: Organ Transplants, Ethics, and Society by Ronald Munson NF

• Matching Organs with Donors: Legality and Kinship in Transplants, Marie-Andree Jacob

• Kidney for Sale by Owner: Human Organs, Transplantation, and the Market, Mark Cherry

• Pediatric Solid Organ Transplantation, Derdre Kelly, Kim Olthoff, Steven Webber

Journals

• Heart transplantation / International Society for Heart Transplantation

• The Journal of heart and lung transplantation : the official publication of the International Society for Heart Transplantation

 

Websites

http://organdonor.gov/materialsresources/materialsntlevents.html

http://www.ncbi.nlm.nih.gov/pubmed/23274332

http://livingdonorsarepeopletoo.com/

http://organdonor.gov/about/data.html

http://donatelife.net/understanding-donation/

http://www.rsnhope.org/

http://www.classkids.org/just-for-kids.html

Just a heads-up: This is a paste from my You are a Treasure because it technically belongs over here and I wrote it in the wrong place. So if you happen to follow both blogs, well, lucky you! You get the info twice! ;)

When Sci-Fi Becomes Reality

English: Still from Sci-Fi short film “The Scanner”. (Photo credit: Wikipedia)

Science fiction. What is it, really? One person’s wild imagination? A couple of authors bent on imposing their wild viewpoints on aliens and monsters and end-of-earth stories?

Ray Bradbury was a leading Sci-Fi author. Personally, I enjoyed Fahrenheit 451, about book banning (which leads to another post entirely!). But what about Star Trek‘s communicator that Captain Kirk always used? Would you see it like today’s cell phones? Listosaur.com does. Check out their neat list (and yes, they mention Ray Bradbury)! I remember when there were no computers. I remember hearing about the very first computer, and how it was so large it took up an entire (large) room. It seems that technology plays a very large part in sci-fi venues – or at least if not official sci-fi venues, then what some naysayers might consider that – and it seems that some of that has actually come to pass.

For example, do you remember anyone that was skeptical about the idea of the human race shooting up to the moon, much less walking on it? The moon was made of cheese, right? And, uhm, wasn’t the earth flat, at some point, too? Sci-fi. Too hard to believe. Ridiculous.

And who takes an organ out of a human body and puts into another human body, for goodness’ sake? And on top of that, expects that person to live?? Or, even more fantastically, expects BOTH of them to live??? Well, that’s exactly what science is doing today, thanks to the “Father of Transplantation,” Dr. Thomas Starzl. How do I know this? My father donated his kidney to me in 1993. He is still alive and well. Also, I have talked to Dr. Starzl via email. My nephrologist used to work with him.

Kidney (Photo credit: Joshua Schwimmer)

The following article is dear to me because since that transplant I have needed 2 more, and they have had to come from cadaver donors. I count myself among the extra fortunate to have been able to acquire these in lieu of dying while on dialysis, as so many have, and continue to do. I have read other articles about science experimenting with creating kidneys from cell tissue, which I think is also amazing.
Science can sound far-fetched, and even like science fiction. I experienced it first-hand with each of my transplants. But since I was ‘out’ during the surgeries, of course, it didn’t have as much of an impact as it could have! What really impacted me as a Sci-Fi moment was feeling my baby grow within, and then watching him ‘pop’ out. Totally freaky. And I can hardly wrap my head around how that type of thing is not
science fiction!! lol

Thanks for reading. Thank you for considering, again, being an organ donor. And for discussing it with your friends and family. I don’t mean to harp. But it truly could be you or yours one day. No one knew I was on the road to the grave until I had one week “till death do us part.”

Doctors can’t always catch things like this without you doing your part and telling him/her any unusual symptoms like fatigue, swelling, unusual weight gain/loss that you can’t explain… taking your blood pressure only on doctor’s visits is not an accurate representation of what is going on with your body. When you go to the pharmacy, use their blood pressure machine there (typically there is one nearby, where you pick up) and keep track of it. Eat healthy and try to splurge only 1-2x/week. Be a good role model for your kids. Drink lots of water. Don’t worry, I’m preaching to myself as I write – it’s not like I do all these things regularly. Well, I do take my vitals twice a day everyday.

Rat Kidneys Made in Lab Seen as Step to Human Transplants – NYTimes.com.

Related articles

• Searching for a sci-fi short story I saw here once (ask.metafilter.com)
• Authors Read from Phantom Sense and Analog (marcellathegroom.wordpress.com)
• Dystopia vs. Sci Fi (yadystopiafiction.wordpress.com)
• Take Your Seashells Out of Your Ears! (nomediakings.org)
• Technobabble (kenlizzi.wordpress.com)

HONORING, REMEMBERING, ENCOURGING

April 19 is National Blue & Green Day. What does this mean, you ask? It's your opportunity to "give HOPE to the more than 117,000 people on the organ transplant waiting list; HONOR organ, eye and tissue donors;
REMEMBER those that died waiting for their second chance at life; and CELEBRATE the
patients who received the gift of life through transplantation."

You might not realize it at first thought, but chance are good that you know someone first or second or third hand that has had a transplant or is need of one. And there may come a day that you - yes, you - may be in need of one yourself. 

According to the Donate Life America site:

Statistics

Currently, nearly 120,000 men, women and children are awaiting organ transplants in the United States. For specific numbers visit unos.org
65,991 Multicultural Patients*
1,760 Pediatric Patients*
28,052 Organ Transplants Performed in 2011
14,013 Organ Donors in 2012
More than 46,000 corneas were transplanted in 2012
More than 1 million tissue transplants are done each year and the surgical need for tissue has been steadily rising
*as of March 2013

 Even if you keep your body healthy and keep the toxins out, life has a way of changing your circumstances.

Please think about those wonderful, selfless people who have donated in either life or death as well as those people who have so gratefully received those needed transplants to save or greatly improve their lives and have fun on April 19th: Have a blue & green party! Make a blue & green cake! Wear blue & green!

Thank you, organ donors and families who have made it possible for myself and others like me to live our lives fully.

MARCH: National Kidney Month

Here it is, the third day of March, and I only just realized that it is National Kidney Month. So says the National Kidney Foundation. And they would know!

For anyone that is concerned about the possibility of kidney disease, they are offering free screenings. How do you know if you should be concerned? High blood pressure is one factor to consider.

If science telling you this just isn't enough, consider reading the story I just did about a woman whose husband is awaiting a kidney transplant because he didn't realize he had high blood pressure and it all crept up on him and before he knew it he had kidney disease so severe that he is awaiting a kidney transplant. I think I have the facts straight. Check out her blog: Twenty-five Seasons.

Take care of those kidneys. While it's true that you only need one (yes, this woman's husband can get a live donor!), you CANNOT live without ANY. Give your kidney(s) plenty of fluid. Be careful with that salt shaker. Eat 'live' foods - i.e.; produce. This won't just do your kidneys good, but your whole body.

Now raise your glass (of water!) up and say cheers to your kidney(s)! Love 'em and care for them because they are just one more organ or pair of organs that are working hard to keep you alive and well.