Medical devices are finicky things. Humans are finicky things. Egos are finicky things. While no one person is at fault for the events that happened to me over the past week, one person could have easily stopped it. Coordination of care was so utterly absent that I was put in a very dangerous situation. To fully grasp what occurred let's break it down by day.
Wednesday the 19th:
- I saw my GI bright and early for my 6 week surgical check in. The site was looking okay. No more infection, though some nice granulated tissue has begun to settle in. And by nice I mean ugly and hurty. The slit on the one side of my stoma finally healed up, though it's made one side of my stoma way deeper than the other so my tube doesn't sit flat. Honestly, whatever, as long as I am being fed.
- I saw my sclero specialist around 3pm regarding all my current symptoms. Severe hand/finger swelling, joint inflammation and pain, hair loss, excessive rashes, worsening nail fold capillaries, new muscle weakness, and of course, my failing GI tract. He did my skin score and looked over my recent PfTs. The good news is that my skin score is still stable, as well as my PFTs. Yesssss. However, the bad news, autoimmunity is wreaking havoc everywhere else and causing some serious wide spread inflammation. He does not believe it is the sclero, but another one of my autoimmune conditions encompassed in my MCTD. Perhaps Lupus as the symptoms more closely match... well, besides the GI stuff. He would like me to trial some anti-inflammatory medications to help reduce the crazy inflammation in my body currently. If that doesn't work, we talked about a new immunosuppressive infusion.
- By 4pm that evening and the J portion of my GJ tube had clogged. Totally unusable. I spent 7 hours in the ER trying to get it unclogged. We used Coke, meat tenderizer, hot water, even a special system called Clog Zapper. Unfortunately, turns out it wasn't a clog. The J tube had dislodged and somehow wrapped itself in a perfect figure eight knot inside me. Needless to say, my soul source of nutrition being unusable was bad, very bad.
Thursday the 20th:
- I frantically called my GI the second they opened and asked to get a solve asap. I suggested we just place a new J through my G via endoscopy My GI decided she wanted to place a new tube with a larger french to prevent this from happening again. I told her I was pretty sure my stoma was too young but tried to trust her judgement.
- I arrived at the IR appointment only to be told, "No way! The stoma has to be at least 6 weeks!" *Insert sarcastic "awesome"* They decided to place an NJ until I reached six weeks, which would be... the next week.
- After two and half grueling hours under x-ray, four NJ tube attempts, six different guidwires, both nostrils, over six dedicated techs and physicians, and more numbing gel than I can fathom, they called it quits. The dislodged J portion of my tube had become so wound up inside me that they could not get a NJ tube in the appropriate position. It was literal torture.
- I was given two options, make another appointment to place a picc line and start TPN for a approximately three days until they could schedule a tube replacement - or simply go without nutrition and get an a daily infusion at the infusion center of lactated ringers to at least stay hydrated. Honestly, by the time we got a picc placement scheduled and a company to ship out TPN it would already be Monday, so I opted for the LR infusions everyday.
Friday the 21st - Sunday the 23rd
- Received Lactated Ringers at the infusion center, drank what I could and nibbled on a slice of watermelon. Threw up that slice of watermelon. Lost 7lbs.
Monday the 24th
- Monday we arrived at the hospital for what was supposed to be a tube change. This is where they barbarically yank out your bumper tube and replace it with a balloon tube. Now, if you've been keeping tract I've been telling my doc, "Hey, I don't believe my stoma is mature enough. Why don't we just place a new J through my G via endoscopy?"
- We get my IV started, completed pre-op and arrive to the IR surgery room. The doc takes one look at my stoma, "Woah, there is no way I am doing this! This stoma isn't mature! I'll do irreparable damage to your abdomen and you will end up on an OR table with a giant whole in your stomach!"
- At this point I lost my damn mind. I cried and I advocated for better patient care and coordination. I expressed ALLLLL my frustration - in a civilized but brutally honest fashion. I expressed how these last two procedures could have been entirely avoided if my physicians would have just LISTENED to me. (Crazy huh, that a patient thats been battling a disease for 8 years might know what they are talking about?!) The awesome nurse in the room was like "Hell yeah, you're right!" The IR doc ended up siding with me as well and telling me what BS this whole situation was. He personally called the head of GI at the hospital and made me an appointment for.... drumroll please.... a new J through my G via endoscopy. What I had been saying all along!
- It only took two unnecessary procedures, five days of starvation, thousands of insurance dollars, and multiple physicians to finally decide I was right. WTF.
Tuesday the 25th
- Zip on up to the hospital, talk with anesthesia about my special precaution; aspiration and seizures. Get wheeled back to the procedure room. Voila! A new J tube was placed through my G via endoscopy. All in all, an hour long procedure plus a well deserved propofol nap. Problem solved!
I am fully aware there are many wonderful doctors who listen to their patients. I often praise and acknowledge them on my social platforms. I owe many of them my life! However, there are also some really poor doctors who do not. Over the past week I had to deal with this first hand - it is simply the reality of health care. Please do not de-validate my 8 years of living with this disease. Do not let your ego get in the way of my care. Do not think you know my body better than I do. No, I do not have an MD, and yes, you often do make the right decisions, but you are still human. You can make mistakes. That MD doesn't doesn't mean you have the right to not have to listen to my concerns. So yes, I will hold you accountable when you place me in situations like this. Why? Because many patients aren't like me, they think you're a god who could never do wrong. They don't know they have to advocate for themselves because they believe you can, "do no harm." So I will be loud. I will share the good the bad, and the downright ugly. Please, listen to your patients, they may just say something useful.
