Thursday, December 14, 2017

My book review of Mary's Book:
Self-Published, 2017
Publishing Company: CreateSpace
ISBN: 9781545141748
Written for Children
Cover Design by Pretty Good Printmaking

 This is by far and away, the best children’s book that I have read on the subject of a child dealing with Chronic Kidney Disease, and all the challenges that come with it.  Ms. Baliker takes us inside the life and mind of a child, who goes from being a normal little girl to a desperate kidney patient overnight. Initially, when we first meet Maria, she is leading a pastoral, rural life on her father’s hobby farm.  She led a happy life, exploring the woods, collecting stones, feathers and arrowheads.  Her days are spent catching butterflies, reading Charlotte’s Web or Nancy Drew books, with her constant companion Teddy, her teddy bear and our narrator.  Maria was leading the idyllic life of a young girl.
 This all changes when Maria’s little body begins to swell, and she is tired for such a young girl.  She is diagnosed after a series of traumatic tests with kidney disease, forcing her to take medication to keep her alive.  She is made fun of by her other classmates, openly fears death, even questions her parents’ motives for throwing her, “a big birthday party.”  Fortunately, the medicine begins to work, and the swelling goes down.
  Miraculously, she begins to lead a semi-normal life again, making friends, attending school, enjoying activities. She was in remission.  At the age of 15, she begins a devastating relapse. Now old enough for a kidney transplant, until a donor comes along, she faces dialysis.  6 hours a day, even sicker than before, she tells her brother, Doug, “It’s my whole day.  My whole life...I just don’t think I can do this.”   She continues, “I won’t get to read any more books.  I won’t see my friends any more.  No more bikes or football games.  Not even a senior prom. No more…no more anything.  No more you! I won’t even get to see my nieces and nephews, if I ever have any. I won’t even be able to get married!”

Doug realizes she is frightened.  He takes action.  Her 21-year-old bigger brother makes a life-saving decision.
This is a wonderful book that understands from a child’s point of view what a diagnosis of kidney disease means and how it affects life.  It is truly written by someone who has been there and revisits the anxiety and elation of going from diagnosis to transplant.  This is not only a great book for children suffering from kidney disease, but adults as well.  It gives an unflinching view of a horrible childhood disease that most adults deal with poorly.  The writing that makes this book unique, is that we get that reminder of trauma in childhood that goes above and beyond the normal scary things encountered.  Mary Baliker has written a brilliant book about childhood illness, giving an unrelenting vision of pediatric kidney patients. We love little Maria and her extreme courage.  Yes, Maria.  I hope to be brave like you!

Buy the book here:

Tuesday, November 14, 2017

Letter from Congressman Pete Visclosky on the Early Detection of Kidney Disease Bill, H.R. 3867.  In pertinent part, Pete says, "You should know that I have agreed to cosponsor H.R. 3867. Introduced by Rep. Mullin, this measure would require the Secretary of Health and Human Services to establish a pilot program under Medicare that would tie Medicare payments for participating providers to improved early detection and treatment of CKD, as well establish a pilot program designed to increase access to care for individuals with advanced stage four or five CKD." Thank you Pete!
You can help too!  Please sign and share the petition supporting H.R. 3867.

Monday, April 3, 2017


Saturday, April 1, 2017


Cover Designed by Five J’s Designed
Photo Credits: jeffy1139 (CanStock Photo)
                        PlusONE Robyn Mackenzie(Bigstock)
104 pps.
Publication Date: 2016
Websites to purchase: (Signed Copy) ($18.95 on Prime)
ISBN-13: 978-1539998204
ISBN-10: 1539998207

“At this point, I was overwhelmed. I didn’t have the words to label the feelings as overwhelmed, I just knew I was sick and tired of being sick and tired.  I felt like I was drowning and nobody around me understood.  Physically, I was overloaded with fluids.  Mentally, I was drowning in thoughts over depression and struggling to cope.  Spiritually I was struggling to stay hopeful as I had only been sick for a couple of years, but knowing that I would still end up on dialysis and need a kidney transplant was overwhelming to live with every day…just knowing what was potentially ahead of me and how sick I was at the time. Emotionally, I was drained and that’s when I decided this wasn’t going to be a life I wanted to live.  I was definitely drowning in every aspect of my life.  I felt like nobody around me even cared.  It was like they wanted me to just keep pushing without even acknowledging what I was going through.  I truly believe they were in denial.  I was too, because I forced myself to carry on all of this weight until I broke.”  (pps. 29-30).

I’ve read a number of kidney books written by individuals who hoped to profit from them. They follow a pattern, a devastating diagnosis, a life sentence to
dialysis, a redeeming transplant, a conclusion where life is resumed, which includes abandoning all things related to kidney failure as if they are ashamed of the experience.  These books are predictable, uninformative, and boring.  Shame ridden tomes, best left on a dusty basement shelf and quickly forgotten.
The Gift of Disappointment” is not such a formula book.  This book is a delightful lesson of turning an exceptionally bad break for an extremely young woman into a delightful coming out party for a mature teacher and exceptional kidney advocate.  Ms. Sampson takes us by the hand, as if to say, “I’ve been there.  I’ve overcome incurable kidney disease.  I can teach you how to do it, too.  I promise for the rest of my life, I will always advocate for you.  You are not alone.  You have nothing to fear.”  This young writer is someone who has ‘been there, done that.’ As a kidney patient myself with End Stage Renal Disease, there are portions of this book that only the experienced recognize as statements that ring true. Uncensored, unsanitized, and beautifully unblemished with deep unflinching descriptions, the passages here are almost painfully true descriptions of the internal thought of one who deals with the diagnosis, drastic life change, abandonment, the hopelessness of dialysis, replaced by the optimism of a transplant.
What makes this book different is that Leilah overcomes impossible negatives with her bedrock Christian faith and relentless optimism that permeates the entire book.  Leilah does not collect her transplant and head for home.  She stays with us, she teaches us, she advocates for us. Leilah has dedicated her life to helping her fellow kidney patients. It is this sense of overcoming, selfless giving, intense fighting for her fellow kidney patients, that makes this book unique and special. 
“I believe in life you will encounter roadblocks that seem very detrimental, but when you look back on them they were redirecting you toward a different path…But now that I look back on it, I can clearly see that my passion for people has always been there, but my path was simply redirected.  I was thrown into this community at 19, but I knew I had the power and perseverance to make a difference. The same dedication I would’ve put towards being the best nurse, I will use to put towards being an even better advocate.” (p. 102).

If you are not a member of the kidney community, this is still a special book. Anyone can enjoy this rock-solid underdog overcoming great odds to achieve success theme in this book.  If you have kidney disease, or a family member, friend, neighbor, that guy at work or just someone you know is afflicted, this book is the instructional manual on how to deal with the disappointment that always comes with ESRD.  Buy this book.  It is one of kind!

Friday, January 6, 2017

Mel Needs A Kidney

This is my friend, Melissa Tuff, who is seeking a kidney donor. She is also an advocate for the NKF who fights for all us kidney patients. Please like and share her post. If you can please get tested for Mel.

Mel's Kidney Page on FB:

To show you what kind of advocate she really is, here is a letter that she wrote to Alan Grayson:

Letter from Melissa Tuff to Alan Grayson

James Myers
Crown Point, IN
Oct 16, 2016 — "Alan Grayson I would like to implore you to read over and sign on to show your support for H.R. 6139 the Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act of 2016. As an 11 year kidney recipient who is now among the 120,000+ waiting on another organ I have struggled many times over the years with lapses in prescription coverage which have caused damage to my transplant when I have had to make my immunosuppressive meds stretch by taking reduced doses just to try and prevent fully rejecting my kidney during the times in which I was denied coverage by my employers because I would "make their premiums too high" or when Medicare and Medicaid were not options because my 36 months of coverage post-transplant had been exhausted. I lost my house, my car, and essentially have went bankrupt to maintain my gift of life for the past 11 years and in all honesty if it meant losing everything to keep my kidney versus going back on dialysis, I would live in a cardboard box under a bridge any day of the week! This gift has been such an incredible blessing but the stress of continued accessibility to my lifeline or medications can be quite daunting which is why so many patients have been reluctant to even get a transplant. So please, for one moment step outside of your experience and put yourself in our (transplant recipients) shoes. Consider the agony of fighting so hard to get your life back only to constantly worry if you can afford to keep it. In conclusion I would just like to say thank you for taking the time out of your busy schedule to read this, and I sincerely hope that you will find it in your heart to support this act and encourage your colleagues to do the same. God bless.

Melissa Tuff, Cape Coral
Florida State Representative for the National Kidney Foundation"

Tuesday, January 3, 2017