Tanya - posted on 09/26/2012 ( no moms have responded yet )
I have been living and surviving with Gastroparesis for quite possibly my entire life. It wasn't until 2007 that it became life threatening for me. That was when my first Central line was placed for iv nutrition. Since then, I've had a total of 8 lines, central and PICC. 9 life threatening blood infections from the iv itself, septicemia from a perforated colon in 2008 which led to the total removal of my colon.
I have been trying to find an Internist or General Practitioner who will take my case and not tell me "I don't know about Gastroparesis" or "too complicated". I just had another disappointing first appointment with a doctor who was talked so highly about. She told me she didn't want to see me for three months, and I let her know at this stage, three weeks was going to be difficult to get through. I explained about the iv nutrition, she said if I made an emergency appointment to see her before my three month appointment, and I was too sick, that she would send me to the er to be evaluated and admitted if necessary.
I am frustrated with the medical profession and have written to Shane Pendergrass in Maryland, who is supposed to be the person who sits as Vice Chair on a Committee in the state involving our Medical Profession and the care given. They told me the Bill that is sitting at the House of Representatives, for those with Gastroparesis and other motility diseases/disorders, is the responsibility of federal. Cardin's office, federal, told me this is state level. Will someone please take responsibility here.