What’s Up With Rory?

2010
09.06
 

The Urinary Tract System

The Urinary System

 

What Is Hinman’s Syndrome?
Also called Non-Neurogenic, Neurogenic Bladder, the underlying causes of Hinman’s Syndrome are unclear. The end result  is a bladder that contracts and does not let go- leading to what would (in most people) feel like a constant need to “pee.” People with Hinman’s Syndrome don’t recognize this feeling though, since to them, it’s the way their bladder ALWAYS feels. This can lead to a build-up of urine in the bladder, which often results in fluid backing up into the kidneys which, when undiagnosed, can lead to kidney damage- just like it did in Rory. When people with Hinman’s Syndrome DO pee, it’s not a result of their bladder naturally contracting and releasing like a healthy bladder- it’s the end result of a bladder so full of urine it literally cannot hold any more. The end result of this constant build up of urine was:

 

Chronic Kidney Disease
CKD can result from any number of illnesses, genetic conditions or injuries, but the end result is the same: sick or damaged kidneys that are unable to properly clean toxins out of the body. This can result in further illness and, if left untreated, even death. In worst-case scenarios, like Rory’s,  CKD will cause End Stage Renal Failure. On the bright side,  CKD and even End Stage Renal Failure, is manageable with special diets, medication and:

 

Dialysis
There are two types of dialysis. The first is called Hemodialysis and involves making multiple trips to a hospital or dialysis center during the week (missing school or work to do so) in order to have medical personnel connect you to a machine that does what our healthy kidneys usually do- filter the toxins from the blood. Thankfully, Rory does not need to miss school in order to recieve his dialysis treatments. Instead, his Mumma and Daddy perform nightly Peritoneal Dialysis (PD) at home. Every evening at bedtime, Rory is hooked up via a short tube placed in his belly to a machine roughly the size of a suitcase. All night long, this machine fills his abdominal cavity with sterile fluid, which sits in his belly and filters the toxins from his blood via osmosis through his peritoneal membrane. This process takes roughly ten hours per night, which means Rory’s family must be very mindful of time management or else he’ll be late to school the next day! Recieving dialysis treatments can leave Rory feeling nauseated, sleepy and cranky. Thankfully, he won’t have to be on dialysis forever, because he is waiting on a… 

Kidney Transplant
Rory has been on the transplant waiting list since November 2009. He almost got his new kidney in February of 2010, but the doctors found a small defect in the donor organ that made them decide it was not the right kidney for Rory. So, he is still waiting. When they are possible, kidney transplant’s can alleviate much of the symptoms of CKD and allow the recipient to lead a relatively normal life, free of the strain of dialysis and many dietary restrictions. In order to mitigate the potential for further damage that Hinman’s Syndrome can cause, Rory now has to perform:

 

Self-Catheterization
Rory has been catheterized for over two years now. At first, he had a foley catheter. This was not as bad as one might think, but it wasn’t a great long-term solution. So, in September of 2008, he had a suprapubic catheter placed through his abdominal wall and into his bladder. He HATED the “SP” catheter….it was painful and not at all fun. Just imagine how it would feel to be a nine-year old boy who has to go through second grade carrying  a bag of his own pee!

Thankfully, in May 2009 was able to receive a Mitrofanoff Catheter. Over the course of a 9+ hour surgery, our Urologist bisected Rory’s right ureter. The top half (connected to his kidney) was routed over the left ureter so that now both kidneys drain through the left ureter. Then, the bottom half of the right ureter, which is connected to his bladder, was joined to the back of his belly button, where a small valve was created. Now, Rory can self-catheterize through his belly button; eliminating the need for permanent catheter tubes, daytime urine collection bags and everything else that makes life not-so-fun. It was hard to be a kid, when he had to carry a bag of pee everywhere he went; or when he had a painful tube protruding through his tummy. Now, Rory is pain free and much more mobile! If you are interested in exactly what a Mitrofanoff is, please view the slide show below:

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