Monthly Archives: November 2016

2017 International Exstrophy Conference In Philadelphia, Pennsylvania, USA


2017 International Exstrophy Conference In Philadelphia, Pennsylvania, USA

images-1Save the dates now! The 2017 International Exstrophy Conference will be at the Children’s Hospital of Philadelphia on Friday, June 9 through Sunday, June 11. More details to be announced in the coming months.

Website: The Association for The Bladder Exstrophy – 2017 International Exstrophy Conference 

 

From the 2016 International Exstrophy Conference

From the 2015 International Exstrophy Conference

Details

Start:
June 9, 2017
End:
June 11, 2017
Event Category:
Website:
http://www.bladderexstrophy.com/conference/

Organizer

A-BE-C Events
Website:
http://www.bladderexstrophy.com

Venue

The Children’s Hospital of Philadelphia
Philadelphia, PA United States + Google Map

 

Categories: Courage to Shine News | Tags: , , , , , | Leave a comment

Matt Elkins – Angling over Adversity


Angling over Adversity

elkins-2015-bfl-stage-aBy Matt Elkins

My name is Matt Elkins; I’m 40 years old; I’m married; I live in Spencerville, Ohio; I’m an environmental specialist by trade; and I have a passion for hunting and tournament bass fishing. That pretty much sums me up in as few words as possible. What is missing from that definition of me is that I was born with cloacal exstrophy, spina bifida and several orthopedic defects.  My medical history is missing from the above description of me because, well, my medical history is not what defines me.  Cloacal exstrophy is a very rare congenital condition where you are born with both the bladder and a portion of the intestine outside of your abdomen.  Spina bifida and related orthopedic defects commonly occur with cloacal exstrophy.

abc05aI was born very premature at a local hospital in Lima, Ohio in 1976.  Within a few hours of my birth I was transported to Children’s Hospital in Dayton, Ohio, but not before my staunch Catholic family could have me baptized for fear of losing me that night!  Once at Children’s Hospital, I underwent my first of many surgeries and was given a colostomy.  Shortly after that, a fatty tumor was removed from my lower back at the section of my spinal column affected by the spina bifida.  Many, many more operations followed as a child to correct club feet, ostomy revisions, an osteotomy, and build a urinary diversion.

However, my childhood was wonderful! I played soccer and baseball, participated in 4-H, and spent every free minute of my summertime playing at the neighborhood farm pond or in the adjacent woods.  I’ve been fascinated by fish, frogs or any animal that I could catch my entire life.  My mom even tells a story about sending me down to the pond at 3-years old wearing my life jacket and somehow I came home with a fish in a bucket!  To this day she has no idea how I caught that fish!  But that is just me.  I catch fish.  That is what I do.

abc04aIt was between the ages of 5 and 9 when I went through all of my toughest surgeries.  Those are the years where I had an osteotomy and received my original urinary diversion.  My bladder was constructed with intestinal tissue and continence was achieved with an artificial urinary sphincter. My colostomy was also revised into an ileostomy.  With the exception of a few revisions to the sphincter and a month long stay in the hospital for an ostomy revision that didn’t quite turn out as planned, my surgeries were pretty much over by the time I graduated high school.

I didn’t play high school sports.  I just never had the size or speed to be competitive.  So, I worked through high school carrying out groceries at the local supermarket.  I had the typical small town high school experience anyone would expect, hanging out with friends, parties, getting into trouble… you know, typical teen-age activities.  I was also blessed with the opportunity to attend the Youth Rally every summer.  This was a fantastic opportunity for me to connect with other kids with similar medical conditions.  I made some terrific friendships at that camp, several of which continue today, and I have memories I’ll always cherish.i

abc06aAfter high school I attended The Ohio State University and eventually graduated in 1998 with a bachelor’s degree in Environmental Science.  After college, I moved to Cincinnati to begin a career as an environmental consultant.  Eventually, to further my career, I graduated with a Master’s in Business Administration (MBA) in 2009.  Professionally, I have worked my way up from the position of field technician to Senior Environmental Project Manager as a consultant, and I now work in the environmental department of an oil refinery in my hometown community managing environmental permits and hazardous waste disposal.

abc01aGrowing up, I can recall my mother encouraging me to do well in school, and emphasizing that finding a job where I can use my mind, instead of my body, was important. She used the example that standing all day on a concrete factory floor would be hard on my feet, which, even as a stubborn teenager, was logic that I could agree with.  So, although I made just average grades in high school, I buckled down in college and pursued a degree that paralleled my love for the outdoors.  My experience as a student with certain medical needs was really not that different than anyone else.  I chose work and friends over high school athletics, and dorm life didn’t pose any challenges, even with an ostomy.

abc04aMy passion for fishing and hunting flourished after college.  I began fishing small club tournaments, and eventually qualified for a couple federation State Teams as a young angler.  Fast forward 10 years and now I compete and hold my own among the top anglers in the Great Lakes region, and I have even dabbled in national Tour-level competition.  Development as a tournament fisherman happens similarly to developing any career, you work your way up through the ranks and gain experience as you go.  Eventually, you can qualify to compete in large championship events and even try your luck in the professional levels.  I routinely compete at the local level fishing the FLW Bass Fishing League (BFL) Michigan division tournaments on Lake Erie and Lake St. Clair, and I routinely compete in any Triple-A level (FLW Costa Series and BASS Northern Open) events that visit Lake Erie and Lake St. Clair.  In 2012, I lived my lifelong dream of competing at the Tour level by competing as a professional in an FLW Tour event out of Detroit, Michigan against bass fishing’s best anglers.

2016-bfl-winSo how does a person with exstrophy, two ostomies, spina bifida and related orthopedic issues compete on the great lakes against the sports best?  Simple… through hard work, just like everyone else.  I do not let anything hold me back and I don’t make excuses.  How successful could an exstrophy patient possibly be?  2015 was a spectacular year for me with two top 10’s (including a win) in BFL competition, a top 10 at the Triple-A level (FLW Sandusky Rayovac), and 2nd in an 80+ boat annual open event out of Detroit.  This year, 2016 has been a good year as well, with another two top 10’s in BFL competition, including another win on the Detroit River in August.  In the past two years alone I’ve cashed more than $30,000 in tournament winnings.  That’s a pretty stout resume for anyone, regardless of their physical limitations.

I guess my point is not to brag about how good I am at catching bass, but to try to lead by example and give a little hope and inspiration to those facing a long road ahead.  You see, in spite of a lot of challenging times throughout my life, I’ve been able to accomplish my goals academically and professionally in my environmental career, and excel competitively from the deck of my bass boat.

maineIn December of 2008 I started dating the love of my life, Lauren.  She grew up in the same small Ohio town, but was living in Maine when we reconnected.  We knew each other as children in 4-H, and reunited through social media.  After a couple months of friendly emails, I asked her if she would like to go to a local wine tasting event when she came home for Christmas.  We’ve been together ever since.

wine-shopFor the better part of two years we were able to maintain a long distance relationship, which is never easy to do. She would travel home to see family and me, while I’d travel to New England to visit her.  Eventually, Lauren took the leap of faith and moved back to Ohio to be with me.  We were married in October 2012 at St. Joseph Catholic Church, where I’ve been a member all of my life, and we still attend services today.  Lauren is the best thing to ever happen to me. She keeps me grounded, keeps me from becoming too selfish and wrapped up in my hobbies, adds color and beauty to my life, and brings a little (needed) chaos to what was my very structured, bachelor lifestyle.  She could probably say the same for me.

engagement-photo-boatJust six months after we were married Lauren and I faced something we exstrophy patients fear.  Failure of my urinary diversion set-up.  The artificial urinary sphincter, which had served me well for about 30 years, eroded into my bladder tearing a large hole.  My childhood doctor had long since retired, and my urologist needed to refer me to a more experienced specialist.  Fortunately, he sent me to an excellent surgeon and team at Ohio State Medical Center.  Unfortunately, my bladder was toast, and an infection set in around the failed artificial sphincter. The process to get engagement-photoscheduled for surgery was nearly a six-month ordeal, and I eventually underwent a radical cystectomy, which is where my bladder was removed and I was given a urostomy.  I knew I was living on borrowed time with my artificial sphincter, as my doctors told me the useful expectancy of that device is at most 10 years, and I’d been living with it nearly 30 years, but Lauren had never endured a loved one going through such a serious procedure with a potentially life changing outcome.  She was a trooper though, never leaving my side, and I can only imagine how she felt when they wheeled me down the hall to the operating room.  I’m sure there are some moms and dads reading this that can relate. My surgery date was exactly 1-year from our wedding day. So, we spent our first wedding anniversary cuddled up in my hospital bed! Not the most romantic anniversary, but he (priest) did say, through sickness and in health!

2013-surgeryMy urostomy surgery went fantastically, with only some post-operative swelling that caused some short-term complications.  Truth be told, I recovered very well and was back to pursuing my passion for hunting, probably, earlier than I should have.  Six weeks and 1-day following my operation, I shot a nice 9-point buck while hunting with my brother.  Now, I didn’t climb any trees and I hunted from a make-shift blind on the ground, and my dad and brother did all the heavy lifting to drag that deer out of the woods, but, hey, I got out there and got it done!  That was a pretty big milestone in my recovery, and the point I knew I was going to be just fine.  However, I didn’t clear that strenuous outdoor activity with my doctor first, and I was a little worried as to what might happen to that newly healed 10-inch scar down my belly when that 12-gage kicked back! I mean, just a few weeks earlier that incision was stapled shut! Luckily, the day was a total success, and I took it a little easier through Christmas!  Within one week of that hunt, though, I was back to work full time, and by late January I was ice fishing for walleye 10-miles out on Lake Erie, and I haven’t slowed down since.

1st-anniversaryPrior to my 2013 surgery, I was not really involved with the exstropy or ostomy community.  I guess I thought that since many of the procedures done today are different than what I had been given, I really didn’t have much advice to give others… so I didn’t really participate.  However, when I reached out to these communities to answer a few questions prior to surgery, I found them welcoming and very helpful, and I found that in some situations I could share my experiences to help others down their own path.  More than that, though, I’ve tried to find ways to incorporate my passion for fishing into helping others facing similar circumstances as my own.  For example: I’ve given a presentation to my local ostomy support chapter (which of course included a few slides of big bass and harvested deer – some of the old men in that group loved those slides); and I wrote an article for Hollister’s Secure Start newsletter that used my tournament fishing to demonstrate an active and healthy lifestyle after ostomy surgery. Recently, I decided to publicize on my Facebook page a fundraising drive to raise money and awareness for the Youth Rally camp by pledging $3 per pound of bass I weigh in at my BLF fishing tournaments to that organization.  I have been very fortunate, and, after experiencing the support from the various exstrophy and ostomy communities during my setback in 2013, I’ve been trying to give back where I can.  Even if it is something as simple as taking a new friend fishing.

© 2016 Matt Elkins & Courage to Shine

E-mail  at Matt at matt@courage-to-shine.org

Please read Courage-to-Shine.org disclaimer!

Categories: Courage to Shine News, Inspirational Stories, Role Models | Tags: , , , , , , , , , , , , , , , , , , , , | 1 Comment

Blog at WordPress.com.

%d bloggers like this: