March 5th, 2016 ~ Advocating

So “technically” I have TONS to talk about, but I’ve been feeling a little better so hopefully I’ll be able to get back to blogging a little more frequently over the next couple weeks but today I want to talk about my recent tube experience.

My Surgical J-Tube is clogged, and if you are a tubie you know this is not a good thing.  Generally a little coke in a syringe will do the trick but not this trip.  So I ended up at the hospital in the e.r. the other day, and first the e.r. doctors have to try.  They tried soda and cranberry juice, to no avail.  THEN they called the “G.I. Team” in, waited an hour for them – she walked in looked at the tube and said “oh I can’t touch THAT they have to call the surgical team”.  So two hours later the surgeon comes by, and he says ~ well I want to take you to radiology and see if they can unclog and/or change it.  So fast forward 4-days and I’m checking into outpatient radiology for a “tube look and possible change”.

Now I had some concerns about this “possible change” not the LEAST of which is WHAT kind of tube are you going to put into me?  You might think that tube shopping is an odd kind of thing, BUT I’ve had THREE different types of feeding tubes and TRUST me all tubes are NOT created equally.  So I start with the nurse explaining that my tube was specially selected due to the issues I’ve had in the past with tubes, and that it was SURGICALLY placed in the O.R. and how I don’t want just any old tube thrown in me.  This leads to almost two solid hours of the nurse, the doctors assistant and the doctor himself running in and out of the room, pulling o.r. reports on my tube placement and trying to bargain with me on tube type.  At ONE point the nurse said to me (I swear I’m not making this up) “are you SURE you had that tube placed HERE at this hospital?” – seriously, you are asking me that after an hours worth of discussion, AND with the OPERATING REPORT IN YOUR HAND?!?!?!  As you can imagine by THIS point I’m getting a little stressed out.

The the doctor comes back in and he tells me a “few things” including the following:

  • The tube I HAVE (the one I want) CAN be removed by him, BUT he CANNOT put that same tube back in – it can only be inserted in the O.R. (I’ve been saying that for over an hour)
  • He does NOT have a 14-french tube that will match the diameter of the tube I have, and so what he puts in will not fit my stoma properly and I WILL have leaking.
  • He doesn’t actually HAVE a feed tube that will fit my stoma, what he plans to put IN me is actually a DRAIN meant for venting not feeding.
  • My SURGEON will NOT take me to the O.R.

So I looked at him and said OK, get the surgeon on the phone I want to speak to him.  Mr Radiology Doctor was displeased that I wasn’t going to “take what he told me” and he said “No, I’ll call him after I go in and look – if I can’t open your tube with a wire THEN I’ll call him.”.

I said – okay then give me a consent that allow you to ONLY do the wire, I am NOT signing a consent for you to change my tube.  Are you KIDDING me?  Taking a tube that is not meant for what you need it for, that is cumbersome and uncomfortable, and that doesn’t FIT properly is like buying a pair of glasses who’s prescription you cannot see through or a pair of shoes you can’t stand up in.  No NOOOOOO Mr. Radiology, I’m NOT going to let you pop whatever HOSE you have laying around into my stomach so that you can get me off your table and call your case “done” and go on with you day, I have to LIVE with this hose – possible for YEARS.  Yeah NO I’m done taking “whatever you say”.  So off we go to the procedure room and we spend about 30 minutes trying to run a wire through my tube.

Well P.S. he was extra unhappy when he found out that I actually DID make the nurse change the consent form to say tube exploration ONLY, and he was doubly more displeased when he in fact could NOT get the wire through my tube.  He did try, and what was happening is there are flanges at the end of my tube (instead of a balloon) that hold it in place and when he hit the clog the flanges started twisting pulling on my intestines and quite frankly it hurt quite a bit.  They doped me up a little but it’s not like I was knocked out and ummm yeah OUCH.  So now he goes off to “call the surgeon”, and I think he was surprised when the surgeon said that he was coming over to talk to me.  The surgeon did come to talk to me and his initial response was that he’s NOT taking me to the O.R. and I said okay well then we need to talk more because you also are NOT putting a DRAIN in me to feed from and sending me home.  That was Tuesday and he said “okay, come to my office Thursday morning”.

I left and went to that appointment ready for a FIGHT, because the radiologist really honestly had me very upset.  Even AFTER the surgeon came and went the radiology doctor came back into my room and said “see, straight from the horses mouth you have to take what there is”.  Actually asshole, no no I don’t and how dare YOU tell me that you are willing to sacrifice my quality of life to do what’s easiest for YOU.  Yeah a little blood pressure there, but anywhoots.  Turns out the surgeon is a GREAT GUY and when I saw him in his office he DID listen to me – in depth about my concerns and what I want from a new tube.

So our plan that we left with is this.  He would RATHER change my tube over a wire, NOT in the operating room if at all possible – because of my MULTIPLE surgeries and difficult gastric history I’m obviously a “high risk” operation.  I can appreciate that TOO, I mean there is “my side” and “his side” and I’m okay with that.  So he’s going to spend this next week or so “tube shopping”, meaning he’s looking to ORDER some tubes that are 14-french (to match my current tube), that are MEANT to FEED not drain AND that CAN be inserted through the stoma over a wire.  Once he gets that in his hot little hands he will reschedule me to go back to radiology for a proper replacement.  If he in fact CANNOT find a tube that matches that criteria, then he will call me to schedule me for the O.R. and go ahead and replace this tube with the EXACT same one surgically.  In the meantime I’ll do my best NOT to get sick, because if I do obviously I won’t be able to hydrate and then I’d had to be hospitalized.

THAT is a plan I can live with, and KUDOS to Dr. Sanjay Thomas at HealthQuest General Surgery in Poughkeepsie, New York for taking the time to understand my concerns and for caring about the person not just getting me “in and out”.  I’ve never had him as a surgeon before, but after my visit with him on Thursday and his approach I have to tell you – I’d go to him for anything.  The POINT of my blog is – ESPECIALLY when you are dealing with chronic conditions that you literally “have to live with” PLEASE ADVOCATE FOR YOURSELF AND EDUCATE YOURSELF.  If I didn’t know about my tube, and if I didn’t ask questions, and if I didn’t in fact argue with that radiologist for an hour and a half I would have walked out of the hospital with an ill fitting, cumbersome, leaking DRAIN hanging out of my stomach for no good reason this week.

I have to say I don’t think the radiology doctor meant MALICE by our exchange, but I do think maybe he needs to learn that though HIS portion of “my situation” is a very technical thing – the patient is a HUMAN BEING and has a life after they get off his table.  I think he needs to give that more consideration, because as much as I fought to be heard I could have just as easily been bullied into taking what he wanted to do to me.  It breaks my heart to think of how many people that DOES happen to.  I respect a Doctors education, and experience by ALL means I do, and I do not profess to know “more” about what they do or to be an expert – EXCEPT in MYSELF I am in fact an expert in ME and I AM going to speak up for MY quality of life.  It sucks to have to live with a tube (or any other adaptive equipment – wheelchairs, glasses, artificial limbs, insulin pumps the list is ENDLESS), but I REFUSE to let is suck more than it has to and I hope you defend YOUR right to be a voice in your treatments and decisions too because it’s empowering and it’s important – it’s really very important!

Here’s to being our own best supporter…and as always thanks for stopping by!  Much Love, till next time.

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