One Month With My Feeding Tube
So Friday (3/16/18) makes one month that I have had my
feeding tube. My adventure so far has been a roller coaster, with so many ups
and downs, well a lot of downs really.
I have had a lot of
issues with my various non GI related doctors seeming like they don’t want to
continue to care for me because I have a feeding tube now. The doctors at my
Primary Care office seem to be afraid of me now that I have a feeding tube and
they especially don’t like that I have a port too. I don’t understand why they
seem so frightened of me; I have these tools so I can live as well as I can.
I also had a problem with my Neurologist who I saw on
Tuesday, she was rather obnoxious, though I haven’t seen her since before I got
my port placed. I had asked her for some IV Zofran because my port is currently
accessed so I can administer high dose IV antibiotics because I have an
infection related to when Cleveland Clinic placed my feeding tube. The
antibiotics have been making me really nauseous because it’s a high dose. My
Neurologist asked me if I had Home Health administering my antibiotics and
everything, I said I had Home Health but they cleared me to administer my own
antibiotics because I showed no symptoms of being allergic to them.
My Neurologist proceeded to freak out and yell at me saying
I should have no business in doing anything with my feeding tube or my port by
myself. This irritated me because I don’t see why I shouldn’t be involved in my
care. I don’t like to rely on others for medical things that I can easily learn
to do myself. And then she proceeded to rant that she didn’t even understand
why I needed my port or tube. She thinks I have a eating disorder and told me I
need to get my tube and port removed as soon as possible and to stop being so
melodramatic. She also doesn’t believe that Gastroparesis is a real illness. In
all I think that’s the worst appointment I’ve ever had with her, usually she’s
really nice to me.
Another problem I’ve had is trying to get Cleveland Clinic
to send a referral down to OSU to have them place my J tube, because I’m very
uncomfortable with letting Cleveland continue my care. I’m not even sure the
number of times my parents and I have called them asking the referral. It’s
been pretty bad, my NJ tube was only supposed to stay in for two weeks, then be
removed and replaced with a J tube. We’ve been asking for it for maybe three
weeks and they only just now sent the correct paperwork on Wednesday of this
week, and frankly I think that’s just stupid.
I have a surgery consultation type appointment next Thursday
(3/22/18), though I’m not optimistic about it. Last night OSU called me and
tried to tell me they wanted to cancel my appointment and to go back to
Cleveland Clinic for my J tube surgery. I told them that wasn’t happening and if
they cancelled my appointment, I’d show up anyway. The person I talked to on
the phone said that it was ultimately the doctor’s decision if I’d be allowed
to have my surgery there or not.
The amount of people treating me poorly because of this is
insane, and I don’t understand why this all has to be this difficult. Sometimes
it seems like I was treated better before I got my tube placed, but now that
I’m trying to get better everything has just gone to hell. It’s left me feeling
frustrated and a bit depressed that I have to deal with all of this. It kind of
makes me feel like a leper.
And I’ve experienced a few Tubie nightmares over the last
month too. . I’m a small person so the supposed ‘adult’ sizes of medical
instruments don’t fit me. I’m supposed to have an extension set on my feeding
tube because it’s a pediatric tube, so it ended up being pretty short, it only
comes past my chin so it’s difficult to see what I’m doing without the
extension.
I have actually broken two extension sets since I’ve been home,
though I have no idea how they keep breaking, I try to be really careful with
them. But they keep breaking in the same place. The extension sets are
important to me so I can do things on my own and it also acted as a fail safe.
In case my tube clogged it would clog the extension first and I’d be able to
remove it, unclog it, and then everything would be fine. Without my extension I
run the risk of clogging the tube is really high because I need to put my
medicine through my tube so it will work correctly.
I’ve also had a few mini clogs since I’ve been home, though
that’s to be expected since I put my medicine through my tube regularly. I do
it because of my Gastroparesis, I don’t absorb anything correctly when it goes
into my stomach. Putting my meds through my tube versus taking them normally
has been night and day in terms of how effective they are. But the clogs
haven’t been too awful; thankfully we’ve been able to take care of them fairly
easily.
I’ve also gotten gawked at like I’m sort of circus freak. It
doesn’t matter where I go, people stare a lot and it’s really hurtful. Though I
hope one day I’ll become immune to the stares and disgusted looks. I try not to
dwell on it because people nowadays are completely disrespectful and it’s a
waste of time.
Even though I’ve had to deal with a lot of discrimination
and various other bad things since I’ve gotten my tube, I’m still happy I have
it. I’ve gained weight and I feel a lot healthier than I did before I got my feeding
tube. I’m thankful for my tube because I have energy again; though I do still
get tired easily it’s an improvement. And by taking my medicine through my tube
some of my other symptoms have improved because my body is adequately absorbing
my medicine. I’m trying to take it all one step at a time as best as I can. And
I have my friends and family supporting me as much as they can, one way or
another things are going to get sorted out.
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