Oy!

Today is Sunday, November 27th. Yesterday was my mother’s birthday and I gave a her a great gift. We went to Popeye’s for lunch (my favorite fried chicken), and I had chicken and green beans. That was early in the afternoon, maybe at 12:30. At 5:30, I started throwing up. I thought I had a green bean stcuk in the back of my mouth, but when I reached in and tried to clear it, I felt the end of my jejunal tube instead. It is, as you have read previously, supposed to be in my intestine. It had retroflexed through my stomach, up my espohagus, and into my mouth. Needless to say, I freaked out. I was still throwing up and in my head, I was screaming, because I thought that I was going to choke. I might have had the tube been a larger diameter. The J-G tubes come in various diameters, which in tube parlance are actually referred to as frenches. For instance, my tube is an 18 french tube. The smaller the number, the larger the diameter. Had my tube been a larger french, I might have choked. As it was, I staggered upstairs from the basement, and had my sister call an ambulance. I was taken to the Reston Hospital Center, which treated me very well. I was in an out in 4 hours. The GI specialist on call made a special trip in to see me in person and wound up removing the jejunal portion of my tube, so that at the moment, I only have a gsatric tube. I can only drain my stomach; I can’t do my enteral feedings.
My mother was really fraked out when she heard. As she pointed out, special occasions are cursed for her. Her mother died on her 25th wedding anniversary, Her husband died on her 33rd anniversary, and I ruined her birthday this year. We all apparently did it on purpose

The saga continues

Well. Almost 3 weeks ago, the balloon holding my gastrojejunal tube in my stomach burst and the whole tube slithered out onto the floor. I know that sounds painful but I felt nothing. I was walking down the hall at work, and was right outside my boss’s door when it fell at my feet. I kinda freaked out and yelled “call me an ambulance!” A client came running and reached to pick up the tube, but I had to stop them and get them to disinfect the floor with Clorox. I picked the tube up and wouldn’t let go, even after the ambulance came. I’ve had such bad luck with tubes that I wanted to make sure I had a sample of the one that I liked. I was at work in the Bronx, so the ambulance wouldn’t take me to Mt Sinai (where the tube was installed), so I had to settle for St. Barnabas. They couldn’t do anything about replacing the tube, since they didn’t carry that brand or model, but they at least put in a Foley catheter to keep the stoma open. ( A stoma is the hole that the tube enters my body through.) I then took a cab to Mt Sinai. Seeing as it was Friday night and no one was on duty in Interventional Radiology, I sat in the ER all night for nothing. My GI came to see me at 8:30am Saturday morning, and said he couldn’t do anything until Wednesday at the earliest. I went home. Monday 2 weeks ago, I got up and the Foley, which was clamped shut with a hemostat had developed a hole, because it’s not ment to be clamped with a hemostat. Not only that, but I had sprung a leak. I was literally spewing stomach fluid across the room. Before I could even leave the apartment, I had to change t-shirt and polo shirt because they were soaked. I put on shirts number 3 and 4 and went to therapy. I was soaked by the time therapy was over, but went to work anyway. I had had the foresight to bring shirts number 5 and 6 with me, so I changed and threw the other shirts away. I went back to Mt Sinai, where I sat in the ER all day. Meanwhile, the nurses didn’t, or wouldn’t (Same dif), change my bandages fast enough, so I was in horrible pain. Turns out I was burning myself with my own stomach acid. It burned me in the exact shape of the bandages. I saw my GI again at 8:30PM, and he informed me that he had arranged to have a new tube put in endscopically on Thursday. He put in a temporary tube. I went home. On Tuesday, I discovered how badly I was burned when I stepped under the hot water of the shower and screamed. On Thursday, I went for the endoscopy and when I awoke, I discovered that he had left the temp G-tube in and run the J-tube through it to my jejunum (which is right after the duodenum and before the small intestine). The new gastric and jejunal ports are modular, and Friday, the jejunal port fell off. Onto the floor. I was thrilled. I went back to the GI and he told me to just krazy glue it. I did that. It fell off again today, so now, once again, I can’t do my enteral feeding at night. My nutritionist at Beth-Israel was so distraught (he’s, like, really, really cute. If he were gay and not my doctor, I’d be all ovah him like white on rice), he referred me to a new specialist at St Luke’s/Presbyterian, whom I saw today, but who can’t do anything until he sees all of my biopsies from Beth-Israel. Meanwhile, I’ve started throwing up again. My life certainly isn’t dull. Who ever thought I’d reach the point where my AIDS was a secondary illness to something else?