[QUAD-L] VENTING

[Nichole Rohling]

HI EVERYONE.    I'M SO FRUSTRATED I JUST WANT TO VENT AND IF ANYONE HAS EXPERIENCED SOME OF THE CRAP GOING ON WITH ME PLEASE SHARE SO I'LL KNOW I'M NOT THE ONLY ONE.   I POSTED SEVERAL WEEKS AGO ABOUT A PROBLEM I WAS HAVING WITH EDEMA IN MY LEGS AND SERUM LEAKING FROM THEM.  I WENT TO WOUND CARE AND THEY WRAPPED THEM FOR 2 WEEKS WHICH HELPED GET A LOT OF THE SWELLING OUT.  MY DR CHANGED MY DIURETIC TO LASIK AROUND THE 2ND WEEK OF JULY  THEN TO EDEMADEX A FEW WEEKS AGO BECAUSE LEGS WERE STILL SWELLING.  WOUND CARE SENT ME HOME WITHOUT HOSE UNTIL P/T CAME ABOUT A WEEK LATER.   I'M NOW WEARING COMPRESSION HOSE TO HELP KEEP EDEMA DOWN BUT SERUM  IS STILL LEAKING EVEN THOUGH MY LEGS AREN'T SWOLLEN.  I HAD A DIME SIZE BLISTER COME UP JUST ABOVE MY ANKLE MONDAY DURING THE NIGHT EVEN THOUGH MY FEET WERE ELEVATED ON 3 PILLOWS.   I WENT FROM CHANGING CATHETER ONCE EVERY 3 WEEKS TO ONCE A WEEK FOR 3 WEEKS AND NOW ANYWHERE FROM EVERY 3 TO 5 DAYS BECAUSE SEDIMENT BUILD UP IS SO GREAT.   MY NIGHT TIME BAG HAS CLEAR TUBING AND IT LOOKS LIKE THE INSIDE OF A CRACK PIPE!  THE WHITE BUILD UP AFTER 2 NIGHTS IS MIND BOGGLING.   I DECIDED TODAY NOT TO TAKE THE DIURETIC BECAUSE I GUESS THE INCREASE IN OUTPUT IS CAUSING THE CATHETER TO STOP UP SO MUCH.  WHAT GETS ME IS I DRINK WATER ONLY.  WHY SO MUCH SEDIMENT?   WOUND CARE SAID I WAS LOW ON ALBUMIN IN MY BLOOD SO I INCREASED PROTEIN INTAKE - HASN'T SEEMED TO NECESSARILY HELP CONTROL EDEMA BUT THE HOSE HAVE SOMEWHAT.   I HAD A CAT SCAN A WEEK AGO YESTERDAY WHICH CAME BACK FINE - NO TUMORS OR ANYTHING TO INDICATE LYMPHATIC BLOCKAGE.  KIDNEYS ETC LOOKED FINE AS WELL AS KIDNEY AND LIVER FUNCTION TEST WERE NORMAL.   THEY ALSO DID AN ECHOCARDIOGRAM AND PRELIMINARY REPORT SHOWED MY HEART FUNCTION AT ABOUT 50%.  DR SAID NORMAL IS 60% TO 50% BUT EXPECTED MINE TO BE AT 60% SINCE I'M ONLY 35.  WE'RE WAITING FOR OFFICIAL REPORT BUT HE IS SENDING ME TO A CARDIOLOGIST (WILL TAKE ABOUT 2 WEEKS BEFORE I CAN GET IN).  MY DR DOESN'T KNOW IF QUADRIPLEGIA REDUCES HEART FUNCTION SO HE'S REFERRING ME TO THE CARDIO DR.   ANYWAY - MY HEALTH SEEMS TO BE SCREWED UP TO SAY THE LEAST.  I'M NOT FINDING OUT WHAT IS WRONG AND IT'S STRESSED ME OUT!   MY GRANDPA PASSED AWAY LAST WEEK AND I GUESS I'M IN A DEPRESSED STATE AND EVERYTHING JUST SEEMS TO BE GOING HAYWIRE.   THANKS FOR LETTING ME VENT  NICKI C5/6