Long Night

I have been to Kaiser 42 days out of the last 58 days. I had eye surgery on July 13th resulting in multiple trips to South Sac Kaiser for follow-up. Then I had my chest catheter put in August 12 and have been to Morse Kaiser every day for flushing it with saline and Heperin. Then the past eleven days were spent in the hospital. After I had my cath put in, I wasn’t able to get a room in ICU until July 31 to get started on Remodulin. Other than a bad headache and nausea, it went pretty well. I got out of the hospital on Friday, September 4th in the afternoon. Around midnight, I was back in the ER. My cath had come completely out, without my feeling it. I had been having problems with the loop that gives it extra room in case the cath accidently gets pulled. I think it just worked itself out or having the strap from the holder across my chest pulled on it. I was sitting and when I stood, it hit the floor. Protocol is to call 911 to get an IV started in my arm and get the medicine flowing again, then get to Kaiser ER to fix the problem. Kim called 911 and after taking almost 30 minutes getting here, they refused to start an IV. I gave them paperwork authorizing them to do it and they still refused. I had them call the Accredo nurse who tracks me. The paramedic hung up from Accredo saying that “no nurse was going to tell him what to do.” Finally, Kim and I decided to let them take me to Kaiser rather than waste time arguing. Kim beat me to the hospital by 5 minutes, and I was in an ambulance! I tried to explain to the paramedics on the way that I only had a certain time frame and then my heart would stop. They told me that if my heart stopped, they had procedures to take care of it. They couldn’t prevent it from happening, but if it did they had the paddles. But, no procedure is going to get my heart going again when the remodulin runs dry. The drug is my lifeline. This was the start of a very long night. More of the story tomorrow....