CONTENT WARNING: Discussions of medical nature. Talk of feeding tubes. You’re responsible for your own time on the Internet and you get to choose where and how you spend it. If reading medical posts will upset you please do not read further. If you’re interested, please go on.
Okay, the above picture has nothing to do with anything at all, but I try not to post pictureless posts because then people complain (sigh lol!) but, when we were heading out on a short errand the other day we took this on the side of the road. And it just came out so nice I couldn’t resist!
Since my feeding tube has started leaking, it still hasn’t been fixed. My new surgeon, who in this post, unfortunately didn’t have the tube he needed to help me that day called back because he wanted to get me in to someone who could specialize more in my disorder, Ehlers-Danlos. And while we were waiting for that, he noticed something nasty in my medical records that my old surgeon never told me about. Apparently I had a terrible reaction to anesthesia one time and nobody told me. Worse, they didn’t mention which one of the anesthesia drugs it was or what the reaction was either. He did say that anesthesia reactions are fairly common with Ehlers-Danlos syndrome, which is why he wanted to send me to a bigger hospital with better specialist care.
::Sigh:: But that meant waiting longer to fix my feeding tube, and, as he pointed out, he didn’t want me to get “too dehydrated” so if I stood up and got near fainting to just go to the emergency room because it might force them to do my surgery sooner. ::wink wink nudge nudge:: He even jokingly said he’d drive me to the ER if he could! Ha ha.
But like. I have a port and can keep myself hydrated at home. So I’m not going to like… Stop hydrating to try to get my “surgery sooner.” I mean. I know what he’s trying to imply… Because I realize he knows I get hydrated through my port. But if I’m not dead or almost dead you won’t find me in an emergency room.
- We’re now two and a half months out with a tube too broken to feed continuously through.
- It leaks so bad it is costing us $600+ per month in abdominal pads.
- That is not sustainable.
- Whether or not I’m feeding through it it leaks, but it leaks much faster when I feed through it.
- I absolutely cannot feed into it at night while I sleep, because then I won’t get any rest at all.
The “New” doctor who “specializes” in Ehlers-Danlos Syndrome offered us absolutely no help in any way at all. Once I got in to see him which took over one month of waiting he glanced at it, and then told me to “go home, and if that doesn’t help, come back and I’ll see if anything can be done.”
Really, that’s what he said, without offering any help. This was at a consult visit for a re-do of the surgery I didn’t get back in April (the link to the post is the one above) and when I called back the doctor who referred me to him, (we’ll call that guy Doctor A, Dr. A was furious and didn’t think I actually talked to the correct Dr. ::Laughs in my “this is what life is like with gastroparesis laugh”::)
So before we left Doctor “B” (the surgeon I was referred to). I flat out said “WAIT! So you think. That me leaving here, when you didn’t do anything at all or try anything different will stop my leaking so I can feed through my tube again?” (I decided to be super direct after making a drive in and missing work to have to pay to be told to fuck off)
And he (I wish I was joking!) instantly shouted: “Oh, wait! Of course not! It won’t!”
“Great,” I said. “So what can we do about the leaking?”
“I want you to go home. And if it doesn’t stop. Come back.”
You guys. They literally have images showing that the only thing you can do is to resite my tube. They were supposed to resite my tube back in April. This is just. Frustrating?
So we called back Dr. A, and Dr. A said he would get the notes from Dr. B. And once he did he said that the notes said that my tube tunnel was actually quite a bit bigger than it should be. But honestly, the last time my tube was resited was probably three years ago and every now and then you do need to move them. So it makes sense to move it from time to time. He thinks that Dr. B is just not giving us any advice either because he’s swamped or hesitating for a reason he’s not sure of and his best advice would be to call back, and see if we can get Interventional Radiology (UGH I HATE THAT PLACE) to upsize my tube.
I really hate the sound of that to be honest. Just upsizing it might or might not work. And having it done at IR sounds awful. They didn’t keep me comfortable last time so I have no reason to think they will this time. But I’ll survive it if they can fix the leak.
So we did call back. And shockingly, they agreed to just put the order in, even before my scheduled visit to see Dr. B. WOW! Haha. I hope this works, because if it fixes the leak, I’ll just cancel my appointment and move on with my life. ::Shrugs::
I’ve lost literally twenty pounds waiting to fix this thing though, and nobody cares whether or not my tube is running. Or maybe they do care, but they’re just that short staffed. Either way, having a feeding tube has been absolutely terrible 100% of the time start to finish. At least with my port, it just works most of the time. I go in tomorrow which by the time you’re reading this will probably be today because it’ll be Friday. I hope it goes smoothly for once!