I know that doctor's offices, especially specialists' offices and ER's are very busy places. I also know that I have really rare and pretty much un-heard of conditions. I'm all of my doctors first patient with Ehlers Danlos Syndrome and Dysautonomia. Because of the awesomeness of these two invisible conditions, they're really hard to diagnose and treat. I get that, all of it.
What I don't understand is how these people can just brush off patients and their symptoms, even when the patient provides information (also knows more about it than the doctors) and evidence that things aren't right.
Sadly I'm used to fighting with doctors. It has only happened a few times where I actually get listened to and not immediately dismissed. The only two people who've listened without a fight, and who are doing an incredible job advocating for me are: Awesome GP and the inpatient nutritionist at Mt.Sinai.
If you've been reading, I guess it's not news that I recently spent 6 days inpatient because of dysautonomia and J-tube issues. My gastroenterologist knew what was going on but didn't do anything. Awesome GP wanted me admitted to get it all sorted but when I went to the ER with a letter from him, I was sent home and spent the weekend getting worse. That case of neglect ended with me back in the ER on the Monday where I ended up being admitted after crashing pretty bad. You can read about it here: http://flexabilityandcreativity.blogspot.com/2011/01/day-mtsinai-was-joke-still-feeling-ass.html
After getting everything sorted part of my discharge plan was to follow-up with my gastroenterologist. I called and asked to book an appointment, where I was told that he felt no need to see me. I called back the following week and explained that it was part of my discharge plan, and that I also needed to get my tube changed and needed the go-ahead from him. The receptionist called back and said that he still didn't feel the need to see me, and that my tube was in the right place and didn't need to be changed.
It amazes me how he could use his x-ray vision and know this without even looking at me. No wonder he's doctor, he's got super-powers! Funny enough, every single doctor, tech and nurse I saw since getting my J-tube put in 3 months ago, said that it should get changed every 3ish months. A lot of people have looked at my tube since I've had 3 ER visits, a bunch of tests and a million appointments in that time. They all said the same thing....get it changed every 3ish months. This gastroenterologist of mine thinks that the tube can stay in for 5-6years. So, that's why he wouldn't put the papers through so I could get it changed.
Let's not forget that I have Ehlers Danlos and am at a risk for a lot of things. Part of my condition includes poor wound healing, issues with bleeding and anything else crazy. I am well aware of the fact that I'm his first EDS patient with a tube. I also know my shit about this condition and have had to advocate for myself every step of the way for the last 13 years.
Below is some writing from past posts about the difficulties and neglect I've encountered with this doctor.
This is when I finally convinced him that a tube would be a good idea
"His first response was this: "Well putting a g-tube in you will be difficult because you're fat, to put it nicely". Then I laughed in his face, and listed all of the reasons of why it would be a good idea. I think he got served a piece of humble pie because he agreed to not only do a g-tube, but that a g-j tube would be a better option (because of aspiration and autonomic issues). I think he realized he was not god, when he also said "This is a very strange request, but you have Ehlers Danlos, so it will be a first for me and is very interesting".
He was ready to book the procedure which is normally done in radiology, until I reminded him that people with EDS do not benefit at all from local anesthetics. He forgot (neglected to read over his notes) that when I had the gastroscophy/biopsy done I had to be sedated after 4 attempts with a local anesthetic. So now he's on a wild-goose chase to find a way to get it done under general anesthesia (which is my best friend), with someone who is comfortable dealing with EDS and all of the complexities that come with it.
He's still not convinced that I need to get the gastroscophy done every 6mts despite that it was requested from my geneticist at my last follow-up, and I have a family history of esophageal cancer..."
This is from when we were getting the pre-op paper work done, which made things a little complicated because of EDS.
"I will also be honest and say I'm a little terrified. The GI specialist doesn't really seem to get the seriousness of EDS and the issues that come with it. I feel like he completely discounts the fact that autonomic disorders are secondary to EDS, which is extremely frustrating. When I went to fill out the pre-op paperwork, he had already completed some of it. Apparently, I'm not at risk for having bleeding, cardio. and neuro. issues from the surgery. Hahahaha. That all had to get fixed. I made an info. pack for the anesthesiologist, so I'm hoping they do some reading, and keep a good eye on me. They're using general anesthesia, since locals don't work on this girl and I'd rather be completely knocked out and have the best nap of my life, than to feel everything and loose more trust in the medical community. I guess one of the things that really makes me nervous is potentially waking up with a subluxed neck (I just got over my last one) or more TMJ issues which is very probable from intubation. Barf!"
Apparently the paperwork didn't go through because I wasn't on any food restrictions, and it didn't get done under general anesthesia
"I was still being offered food today, even 10 minutes before the procedure. I didn't end up getting it done with general anesthesia, but instead with sedation and some locals. The techs putting in the tube were nothing but awesome. They read the info I gave them and were more than willing to do what made me comfortable. I could still feel a lot of it, as the locals don't really work on this girl, no matter what. I will say that having your stomach and jejunum poked and cut through feels really gross"
This was from the post-op follow-up that I had to fight for. He didn't feel the need to see me, despite it being in my discharge plans.
"I guess I'll start with the Jerome (gj-tube) drama.
Well it got infected, but I got antibiotics straight away and it's cleared up. The GI specialists said it was because A) I am "a little bit chubby". Hey, it's better then last time when I was "fat". What an ass. B) I have EDS. I say we're professional slow-wound healers."
Today I went to see Awesome GP because gastroenterologist won't take me. Last night I had blood (not a lot) coming from my tube and it was sore. It wasn't because of any abrasions, it was coming from the inside where it's still draining. I have an insanely high pain tolerance, when something hurts it means something is wrong. I spent the night on my back (which hurt the rest of my body) and it was the same this morning. Still bloody and sore, gross I know. Awesome GP put me on antibiotics and sent off the paperwork for another gastroenterologist and to get a tube change at a different hospital. I called this hospital, and they need paperwork from my gastroenterologist. He won't see me, how the hell am I suppose to get the paperwork, never mind a tube change. Are we suppose to forget that with Ehlers Danlos there are issues with tissue break-down, organ ruptures and bleeding? I'm also suppose to be able to trust these people? Yeah right....
I'm hoping this post will yield some results in terms of finally being able to get the appropriate care I need, and that others won't have to do the same. What if I were a patient who didn't advocate for myself? I would have ended up dead, no joke. If need be, I will start using the real names of hospitals, doctors and people who have been neglecting their duties as "medical professionals". Maybe the media would be interested in this...
My point in all of this long drawn out rant, is that everyone deserves a healthy life. This is the only way we can, so this is what we have to do. We don't expect anyone to know everything, but we really hope, you would be open to learning and being awesome.
"No one can make you feel inferior without your consent"