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April 1, 2008, 5:23 pm PDT
Trying to cope and frustrated in Missouri !!
My sister is 43 years old and a single mother of 2 who worked full time and would work as much over time as possible to take care of her family. She had an infected tooth and was referred to an Maxofacial Surgeon for oral surgery by her dentist and contracted MRSA in her jaw after the dental surgery. She is probably not your typical case of MRSA because she has A-fib heart problems, high blood pressure, Psorasis which requires she normally take monthly Remicaid IV treatments as well as having thoracic arthritis.
She currently has active MRSA, however due to everything she has been thru, she can no longer take the vincomyacin. The doctors will not yet start her on antibiotics and have her taking steroids. She is home bound and using a walker. Home health is coming in, as well as taking physical theraphy at home as her left foot is dragging after her last episode from this illness.
Our family, including her children ages 9 and 13, as well as my mother age 69, has been to hell and back since November 2007 dealing with doctors, emergency rooms and hospitals. My sister made 6 trips to the Emergency Room in 5 weeks, most times being sent home with an antibiotic and pain pills. One time she was admitted, being given antibiotics and pain medications to the point she was hallucinating. This wasn't bad enough, we were coming in to find her room door closed and her up by herself! The thought of what could happen with her being under such high doses of narcotics and up by herself, let alone the question of why her door was closed and she wasn't being watched more closely.
After her 6th visit and being discharged, she returned home with more antibiotics and pain pills. Early one morning we received a call that her son had tried to help her get up out of her recliner and she fell to the floor. An adult friend staying with them and her son tried to get her up and couldn't. Emergency personnel were called. She was in Septic Shock and it took ambulance personnel as well as firefighters to pick her up and get her on the gurney as her body was almost lifeless. Upon getting to the hospital we were taken to the side to meet with doctors telling us that our sister had gone into septic shock, her kidneys were shut down and she probably wouldn't make it through the day. By the grace of God and many prayers which we are very thankful for both, she lived through that day. The hospital wanted to place her in CCU however they had no beds available. They then told us they would life flight her to the next closest hospital and were getting her ready for the flight. The next news was just as stressful, there were no beds in CCU available there either. We then discussed sending her Barnes Jewsish/Washington University Hospital in St Louis, Missouri and our family knew this would be good for her and the care would be excellent. As we waited to hear more on the transport, time went on and on, finally when we asked what was going on, we were advised they had changed plans and were waiting on a culture so they could give Barnes Jewish more information. MY GAWD WHAT MORE INFORMATION DO YOU NEED, MY SISTER HAS FULL BLOWN MRSA, ON HER SKIN, IN HER BLOOD, IN HER NASAL PASSAGE, IN HER JAW, SHE WENT INTO SEPTIC SHOCK AND HER KIDNEYS SHUT DOWN, IS THAT NOT ENOUGH?????????????
Not to mention the lack of care given at the hospital, receiving a call from my sisters co-worker about finding her laying in urine; my mother, myself and my sister became her care, staying there around the clock, wore out, dealing with our own medical problems which include rhumatoid arthritis, inoperable brain aneurysm, herniated discs pinching on nerves, a double back surgery causing further back problems, other forms of arthritis, pseudo tumor cerebri among others. By this time we were exhausted and plain past frustrated!!!!!
Hospitals and insurance companies have their rules, regulations, processes and whatever else they want to call them that you have to follow to get a patient to another hospital. Even with all my efforts to get her out of one hospital and into another it had to be done a certain way. She eventually got to Barnes Jewish in St. Louis 3 days later via ambulance, 5 hours away on a hard back board on a gurney!
Praise the Lord for such hospitals and doctors, when she arrived in the wee hours of the morning they were there waiting on her! They immediately started working with her, doing scans and lab work. Her room was marked appropriately and the doctors talked to us about precautionary measures we should take as a family when visiting. This was the 1st time anybody had taken the time to do this with us. Mind you, all of this started in November and we are now in February!!!!! In a matter of 3 days at this hospital they had diagnosed her, gotten rid of a rash that covered her body (red mans rash-from too much vincomyacin) that had been diagnosed as strep rash, communicated with her and with us about everything! She was released with CLEAR INSTRUCTIONS and just a few medicines to take by mouth.
My sister used all of her vacation and sick time. Her co-workers lovingly gave gifts from the heart and went shopping for groceries to stock her cabinets and freezer, paid for her prescriptions twice and gave her a $150 gift card. Her long term disability finally kicked in and she got a partial months check in February. At the same time, her FMLA expired and she's been placed on leave of absence which is only good for 90 days at which time she will be terminated. Her health insurance expired yesterday, March 31 and she received a letter from Social Security denying her disability and the Division of Family Services has still not approved her application for Medicaid.
As you can imagine, long term disability payments are only a portion of your normal income and aren't enough to run a house on, let alone to pay for doctor visits and get necessary medicines. She goes to bed worrying about getting through the next day, keeping the utilities on as economic security has helped her twice and can't help any more. Worrying about how she is going to get her medicines, go to the doctors she needs to without insurance and the ability to pay to see the doctor. Now days you have to pay the doctor if you don't have insurance at the time of your office visit. To only get up and start the process all over again day after day. It's a day long process calling agencies seeking help to get the answer you're hoping not to get..........NO.
I'll tell you that with every visit to every doctor and every time we went to the Emergency Room we questioned them about MRSA to be told we're checking and no, it's not MRSA. I'm not sure if it's the lack of knowledge, not doing the right tests or what but something has to be done within out medical system so that more people don't end up in my sister and family's shoes! We have spent everything we have and like everybody else, have to pay our bills and get our medicines some how too.
Nobody should have to go through this! She's active MRSA, needing to see a neurologist, needing medicines, needing to see doctors on a regular basis for the MRSA, needing home health care and physical therapy, needing insurance, needing groceries, financial assistance and we have yet to figure out where to turn to help her.
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