Charlie Chuisano Staying Cheery w/ Charlie

This is fun picture of Charlie before he began losing weight.  To date, he has lost 60-65 lbs, and is down to 130 lbs. which is not such a pretty picture.  

Charlie was first diagnosed with Crohn's Disease when he was 30 yrs old.  He is now 68 yrs old and the years of struggling to stay ahead of this auto-immune disease has taken its toll.    It's bad enough Crohn's is labeled the "embarrassing disease" (look it up) and then we had to make a life-changing decision to either remove Charlie's entire colon OR have colon cancer (look it up).  Decision made, and following major surgery,  Charlie, Connie and son John, adapted to a new life without Charlie's colon (look it up).  By the way, the surgery did not remove Crohn's Disease, it's still there and we're still fighting it.   About 6/8 months later, Charlie was in full kidney failure with several hospital stays and his doctors trying to keep him from going on dialysis (another forever decision in the making). 

Last Fall, we experienced numerous hospital stays (5) with the final one in ICU for 16 days, living through MERSA, beginning dialysis and working hard through rehabilitation where he began exercising and walking on his own.  Since then, Charlie is living with Stage 4 Kidney Failure and is having dialysis 3X every week.  About a month ago, two of Charlie's right foot toes began to hurt and swell, and became so infected with MERSA that our orthopedic surgeon advised amputation.  A week following that surgery, when his wound wouldn't heal and gangrene started up his foot pad, the surgeon had no choice but perform a BK (below knee amputation). Since then, he has begun to physically heal very well.  We will begin strength rehab in a few weeks when he is stronger and hopefully, gain some weight  We look forward to the opportunity to have him fitted with a prosthetic leg with additional rehabilitation so he can be independent and drive again.  Charlie is the kind of guy who nevers complains, is happy sitting in his recliner and taking care of himself, but there's so much more to his life than this. 

 All his life, Charlie served in the customer service business.  He worked on Jones Beach and with Guy Lambardo in his early years and college.  He became a police officer in New York and then relocated to Phoenix where he also worked as a police officer.  Always ambitious, he sought employment in the private Club business and went on to manage not only several large country clubs, but also the largest charity driven club society in the Houston area.  In fact, this is where he and his wife met, working on a local children's charity fundraiser.   Charlie worked while suffering from Crohn's Disease, but you never knew it because he is a master of being cheery, no matter how he feels.   He MC'd a large charity Gala while hallucinating, we knew this because he kept saying the carpet resembled ocean waves.  He wouldn't let the children or the team down, and made it to the end of the gala before checking into the hospital the following morning.   Our  dialysis group calls him "The Trooper".  We are inspired and yet saddened by all this man has endured.

On Charlie's behalf, he could use a bit of that extraordinary service he gave to so many others.  To aid in adapting to this new life,  the master bathroom could be modified for the use of a wheelchair, perhaps his truck modified to drive with a left foot, and maybe we could pay the deductible to replace a 20 yr old roof with a new one  before the next hurricane arrives.  This all sounds fairly easy to achieve except for the fact that both Charlie and his wife are on social security and medicare.  There is no pension, 401(K), or savings account.  Mounting medical expenses for both in the past years deleted those funds they worked so hard to save.  When asked about going back to her part time job, Connie said she would return when Charlie can walk.  She takes him everywhere including his dialysis every week, seeing various doctors, and generally everything in between,  and she and John take care of whatever else needs to be done.   

We hope you will pray for our family as we struggle from day to day with unmet expectations, and soar above it all with a bit of good news from a physician.  

On a final note,  "New Adventure Everyday" has been our family's trademark motto for many years.  Some of you may remember the matching reclaimed silver rings Connie had made for Charlie and she to wear bearing this inscription.  We hope you will pray for the three of us on this mighty "Adventure" wherever it takes us in the future. 

Thank you!