Description of Event or Problem · 1
SINCE EARLY 2008, USING A LTV 1000 IN MY HOME, WITHOUT A LOCAL VENDOR - THEY DON'T SERVE ADULTS ON NIVV IN MY COUNTY, ONLY CHILDREN AND INFANTS -, AS A VISION-IMPAIRED, POLIO SURVIVOR WITH RESTRICTIVE BREATHING DISORDER, I WAS TOLD TO CHANGE SETTINGS "TO SUIT YOU," AND ALSO TUBING, ETC. HOWEVER, THE VENTILATOR HAS NO COLORS, CONTRAST, OR EVEN AN OVER-LAY TO ITS FLAT SURFACE, MAKING IT VERY DANGEROUS TO CHANGE ANYTHING FOR THE VISUALLY-IMPAIRED, LOW-VISION INDIVIDUAL. CLEAR CIRCUITS ARE ANOTHER PROBLEM, AS WELL AS CONNECTORS, BEING CLEAR, EASILY LOST, DROPPED, OR NOT EASY TO FIND. SIGHTED PEOPLE HAD PROBLEMS WITH IT, AND ALMOST NO AMOUNT OF EFFORT WITH THE CO'S MANUAL HELPED. CARDINAL'S TECH SUPPORT IS WONDERFUL; NOT MANY CONSUMERS WOULD CALL THEM, I'M SURE. ADDITIONALLY, NIVV IS A CLOSED SYS, REQUIRING A NON-VENTED MASK, FULL FACE, AND/OR NASAL; HOWEVER, MY VENDOR KEPT SENDING ME VENTED MASK, AND TOLD TO TAPE THE VENT OPENINGS, ETC. IN SIX MONTHS LATER, I REC'D THE FIRST NON-VENTED MASK AND IT MADE MY LIFE SANE AT LAST. SECONDLY, ONLY WHEN SHE SENT ME A LOCAL RT TO MY HOME, DID HE FIND TOO MUCH 'DEAD-SPACE' IN THE CIRCUIT, AND THE TIDAL VOLUME WAS TOO HIGH FOR ME - IT WAS 1050 - HE REDUCED IT TO 800, IT THINK...- I SLEPT FOR 9 HOURS THAT NIGHT - THE FIRST TIME IN 5 YRS. HE EMPHASIZED THAT I WAS TO PHONE HIM FOR "ANY PROBLEMS." THE STATE BLIND SVCS ALSO CAME TO LOOK AT WHAT I WAS DEALING WITH AND FELT IS WAS A SERIOUS ISSUE FOR MOST USERS. IT'S IMPERATIVE SINCE OLMSTEAD, THAT EVERYONE ON "BREATHING ASSIST" DEVICES HAVE AN RT OVER-SEEING THEIR CASE, WHO IS LICENSED , AND NOT SOMEONE 'TRAINED' BY A VENDOR TO WORK OFF AN RT LICENSE. TO SAVE VENDORS' MONEY. IN LOOKING AT FINANCIALS ON THE NATION'S TOP VENDORS, THEY SHOULD, AND COULD AFFORD RTS. THIS WOULD MAKE IT POSSIBLE TO HAVE A DIRECT COMMUNICATION WITH PRESCRIBING PHYSICIANS, AS TO THE CONSUMER'S HEALTH STATUS, OBSERVATIONS, AND PROFESSIONAL REPORTING. THAT CANNOT BE DONE UNDER OUR PRESENT 'SYS', VIA CMS, OR ANY PRIVATE INSURER --RTS ARE TRAGIC LOSS IN OUR CARE. THEY WERE THE ONLY ONES DURING A HOSPITALIZATION WHO KNEW I HAD A NMD RELATED BREATHING CONDITION - MY CO2 BEFORE THE VENT WAS IN THE CRITICAL RANGES. I LOVE THE VENT, BUT ITS SHORT-LIVED BATTERIES ARE ALSO A PROBLEM IN THE STATE WHERE WE HAVE LONG POWER OUTAGES -- AT LEAST 6 HRS -- I HAD TO ENDURE A 7 HR POWER OUTAGE AND LIVE ON THE AMBU BAG IN FOUR MONTHS AFTER THE ORIGINAL MONTH, WITH NO HELP -- EVEN MY LOCAL EMS WOULD NOT TAKE ME TO AN ELECTRIC OUTLET TO MERELY PLUG IN. WE DO NOT NEED OXYGEN. I WILL HAVE TO CHANGE VENTILATOR MFRS THIS WEEK. I CANNOT TRUST A 1-HR BULIT-IN, AND 3 HR EXTERNAL BATTERY, WHEN I AM VISION AND MOBILITY-IMPAIRED. THANK YOU VERY MUCH.D1: 1000 PULMONETICS SYSTEMS. DATES OF USE: 2007 TO 2008. DIAGNOSIS OR REASON FOR USE: POLIO-RELATED RESTRICTIVE BREATHING DISORDER. WHEN EVER I AM SLEEPING, RESTING, OR DOZING + ADD'L TIMES DAILY FOR AIR-STACKING.