It has been too long since I spent quality time writing.  My muse must be on a drunken binge.  The desire to write is there, but those stories, poetry, books and articles remain unwritten.  Why?  My best guess is that working the web all day leaves me eager to be away from my PC during downtime.

This morning, I have a more powerful motivation to write.  While my muse was searching for rehab venues, I spent the past eighteen months providing support to my ailing sister.  She’s been through hell and back many times throughout her life.  Family and friends joke about the phenomenon.  One refers to her as “The Cliff Hanger.”  She will appear to succumb to devastating illness.  We anguish, and on some level expect this time to be the last.  Hanging on to each other emotionally, we wail and gnash our teeth.  We have burned ourselves out; helpless in the ability to make it better.   Burning thousands of highway miles, spending hours in the waiting rooms of teaching hospitals, pacing hallways, eating machine-vended or fast food, living out of suitcases and hearing doctors say, “Well, she came through fine, but now we wait.”  We’ve wrung our hands when back-to-back-to-back health issue after health issue after health issue spun her life and ours so far out of control that we felt we were on a roller-coaster that never brakes and coasts back to the starting gate to let us off.  

From her perspective, she’s managed illness since her teens.  Beginning with gastrointestinal challenges, she ultimately accepted the ostomy surgery in her 30s.  There was no choice.  Get the bag or die.  However, the disease had already affected other organs.  Fifteen years later, her liver function was compromised.  There was no choice.  Transplant or die.  That was the perfect example of her “cliff hanger” M.O.  She was rushed into surgery to apply a quick fix to save her life.  While being put under, a matching liver became available.  See what I mean?  Right up to the edge we go, then POOF, the cavalry arrives.

Throughout all of this, she lived her life, succeeded in her career and married her soul mate.  He was at her side throughout the transplant challenge.  They had about ten good years, and he passed away in his sleep.  The blow was more devastating than any medical challenge she had faced to date.  She has not been the same since. 

Her solution:  move to paradise.  Before meeting her soul mate, she and her BFF traveled to tropical places and had some of the best girlfriend adventures you can imagine.  Later, she visited those places with the love of her life.  When he passed away, she applied for a position at a non-profit in the Virgin Islands on a whim.  The non-profit was impressed with her experience and expertise.  She went for the interview, found an apartment, and POOF, she was off on her next adventure.  Of course, her family was not excited about the move to a place so remote because of her medical history.  She had been told at that point that her kidneys were failing. 

The island of St. Croix presented certain logistical and cultural challenges where medical care was concerned, but she persevered.  She lived there from August of 2002 until October of 2013.  Her kidneys failed in 2006.  For seven years, she endured dialysis, dreaming of her new kidney.  Unfortunately, until she agreed to have the old calcified kidneys removed, she could not get a new one.  Again, it was time to pay the piper.  That October, after many painful bouts of kidney stones, she was ready to move back stateside and start working on getting a new organ.

This is when the real adventure began.  She returned to the mainland to get the nephrectomy (kidney removal).  After recovery her job was to complete the pre-transplant checklist and get reactivated on the transplant list.  One of those checklist items was to have her vascular issues addressed.  She underwent vascular surgery. Her surgeon, Jedi Master in his profession, was able to return circulation to her left leg. 

Once that checklist was completed (2:00 p.m. on the Thursday before Memorial Day, 2014), she was reactivated on the list.  Fortunately, being inactive did not affect her place in line.  Twelve hours later (2:00 a.m., Friday morning), she got a call that a kidney was available.  The donor was a long-term heroin addict.  She declined.  With all the other issues, she wanted a more viable organ.  That Monday evening (Memorial Day) around 11:30, another call came.  This kidney was the one.  Tuesday afternoon, she was transplanted.  She recovered so well, everyone was amazed at her progress.  She spent several weeks with her daughter enjoying life and her new kidney function. 

One day after shopping, Big Sis noticed that her ostomy was not functioning as it should.  Severe nausea and no ostomy output meant a call to the emergency room.  The hospital was three hours away.  She was rushed there, and monitored.  Several rounds with an NG tube and much frustration on her part revealed that there was something more serious going on.  Now what?  Exploratory surgery.  The entire summer was spent in that hospital.  Three abdominal surgeries later, she is recovering slowly, but now, they can’t find a pulse in that beautifully recrafted left leg. 

I know, this is a long story, so here is where I shorten it.  One year after returning to the States, she has the left leg amputated.  She manages OK.  Accepting the reality of limb loss and overcoming how to access a tiny condo bathroom.  She was healing, but, the other limb began showing signs of vascular failure.  In December, the other limb was taken.  The condo is no longer an option.  It’s too small for the new wheelchair configuration and can’t be renovated in the space available.  From the time Big Sis was admitted for the nephrectomy until one week ago when she returned home from rehab after the second amputation, she has spent less than 4 months outside hospital and rehab center walls.

This is the more powerful motivation I spoke of earlier.  While she recovered from this latest adventure, I’ve focused solely on creating an accessible environment where she can function as normally as possible.  Losing the legs was tough, but losing her freedom was a more painful loss.  Getting in and out of my car was painful.  Lifting her wheelchair in and out of the trunk was painful for me as my chiropractor can attest.  Frequent bathroom visits made her wary of going out.  Not being able to get into the kitchen or cook or reach anything caused me to have to wait on her hand and foot.  Hard to do and work a full-time job at the same time.  While it was annoying for me, it was tougher for her to watch me do things she wanted to do for herself.  I sold the condo and bought a house twice the size in a quiet country setting. The house still has no bathroom she can use.  We have reverted to our rural upbringing to overcome this.  Can you say, “chamber pot?”  Clearly, we are both weary of the set-up after just ten days.  In addition, the renovation estimate was $10,000 higher than it would be normally due to the location of the electrical box and the fact that the laundry was incorporated into the original bathroom.  Modern inspection codes will not permit the current layout.  Electrical work doesn’t come cheap, either.

Her retirement fund is drained.  My savings is sapped.  We’ve managed to pay two of four installments on the bathroom up-fit.  Demolition, framing wiring, new panel box, shower pan, dry wall and plumbing are complete.  We must pay the remaining due within the next two weeks.  Our total estimate was in the neighborhood of $34K.  We desperately need a miracle to keep work progressing and make the next two payments.  Thanks to her retirement, GoFundMe and my sister’s stellar fundraising ability, we were able to make the first two installments on the renovation.  Tile for the bathroom was set today.  She was also able to put a down payment on the accessible van.  It has been so good to have an outing without stress of transferring her newly-configured body in and out of the car and to and from the restroom.  However, she is now stuck with a car payment which will strain her modest social security income.  Understand that anti-rejection drugs for transplant patients are not acquired with small co-pays.

 I’m not happy about sharing this story—and the reason for sharing it.  I don’t enjoy asking for money.  However, desperate times call for desperate measures.  So, think of this as me asking for access to your sphere of influence.  If you know of any agencies that can help, if you have philanthropic friends looking for a worthy cause, if you believe that miracles happen, please share this story and the link to my sister’s fundraising page.  Give a gift yourself, no matter how small.  If 1,000 people give $25, it would cover the bath renovation.  If the same group gave $40, it would cover the renovation and pay off the van.  My sister would be able to retain her quality of life.  I do believe in miracles.

http://www.gofundme.com/RascalsRide-yahoo

“Never doubt that a small group of thoughtful, committed citizens can change the world.  Indeed, it is the only thing that ever has.”

-          Margaret Mead