Thursday, November 22, 2012

Bravo Disappointment

Where to start, where to start?

Shall I start last Wednesday when I got a phone call with a totally different time for my procedures than I had been told?

Shall I start on Friday when I finally talked to someone about the discrepancies in the times and was told a totally different time again?

Shall I start on Sunday when I actually began my prep for Wednesday's procedures?

Shall I start on Monday when I had to field a call that my health history doesn't allow me to do a phone pre-op and needed to come in mid-prep for it now?

Shall I start on Wednesday when those procedures where scheduled to go down?

Let's start on Friday..................

I finally received a phone call back from endoscopy about the discrepancy in the times.  I had been told the week before when everything was switched to Wednesday the 21st that my new time would be 2:15pm.  The phone call I received said 3pm.  When I spoke with the woman in endoscopy she told me 2:30 but I needed to be in at 1:45.  She also told me that I would get a phone call on Monday to do my pre-op screening since they were running slightly behind.  I said no problem.

Sunday I started my prep.  Yes SUNDAY.  4 days before anything was to be shoved in, up, down and around my body.  I have an extremely SLOW digestive system and this is the only way to ensure I am clean enough to get anything done on me.  So Sunday started my chicken broth, lemon water ice and lemon jello diet.  Yummy huh?  I also take 2 ducolax pills to get my system started.

Monday I receive a phone call from the SAME woman I spoke to on Friday.  She tells me that due to my health history I can not have a phone pre-op assessment and I need to come to BWH Tuesday morning at 9:45.  I nicely as I can after not eating anything of substance for 24 hours, that I am in the middle of my prep and that sitting in a hospital waiting room for 2 hours is not an option.  She tells me she will speak with someone and get back to me.  So she calls me a couple hours later and lets me know that they can get me in at 10am on Wednesday before my scheduled procedures and asks why I am prepping already.  Again I nicely as I can explain why.  I have also started my prep and finished 2 64oz bottles of apple juice with a total of 30 Miralax doses in them.  I am in the throws of "cleaning out."  I take 2 more ducolax pills to keep it going over night.

Tuesday is more of the same however, I am drinking magnesium citrate.  I don't feel it is working as well as I would like so when P is on his way home I ask him to get me another bottle of apple juice.  I added another 15 doses of Miralx to that and drank it for the rest of the night.  I take 2 more ducolax to again keep it going over night.

Wednesday morning.  I am nervous I am not as clean as I need to be.  I decide to use an enema for good measure.  Are you keeping track?  That is 45 doses of Miralax, 2 bottles of magnesium citrate, 6 ducolax pills and 1 enema.  Phew!  I was lucky enough to have my SIL drive me to the hospital and wait for me.  She is a doll!  Especially since we had to be there at 10am and my procedure wasn't until 1:45.  We kept each other company and got to chat, just the two of us.

So at 1:30 we get to the endoscopy center and I sign in.  They take me back shortly after and we get started on all pre-op in op that we need to do.  I change and we go over what I am supposed to have done that day.  But wait?  There is no BRAVO on the list!?  I explain that I was scheduled for it on the 28th but was called to move everything to one day (Wednesday) to make it easier on me.  She says OK I will look into this.  So right there I am a bit annoyed that things get screwed up.  I go into the bathroom one last time and when I come out there is this doctor having a hissy fit about something.  I immediately realize its ME and the BRAVO procedure.  I hadn't met the doctor doing my scopes yet, and now I am totally annoyed that she is annoyed.

The nurse comes over and gets me into a bed.  Well, my heart rate decides to sky rocket because I am so frustrated.  Resting its still in the 140s.  No one is too happy about this and all the deep breaths I take is only making it go higher.  They decide they need to do an EKG to make sure there is nothing wrong.  Great.  I try to explain that stress raises my HR and resting I am around 110-115.  EKG is fine, of course.  All I keep thinking is if they cancel this because of my HR I am not going to be happy!  They decide its OK since this is normal for me (they listened yay!).

Finally they wheel me into the room where the procedures will be done.  Everyone is great and the doctor (the one who was having the hissy fit) comes in.  I have calmed down some and she explains to me that there is NO record of my ever having been scheduled for the BRAVO in the system.  She is very nice, I should add.  She says she paged my transplant doctor, Dr G, and she said there is no need for me to have the BRAVO.  Um excuse me?  I explain to Dr L that I NEED this test for my transplant evaluation and that I am supposed to be presented in December and can not be without this test.  She said since there is no record of me being scheduled and my doctor said I don't need it, they can not do it.  Now it is entirely out of endoscopy's hands.  I am LIVID at the transplant center.  I tell Dr L I will be seeing her again soon.  Again, she was VERY nice and there is nothing they can do.  They can't just do a test on me that isn't OK'd by my doctor.

At this point they drug me up and I wake up right before they wheel me out and back into the recovery area.  All went well.  I spoke with Dr L again after and she let me know what they found.  There were 9 small polyps (all 1cm and under) in my colon that they removed.  My ultrasound showed that the cyst on my pancreas grew from 1.5cm to 2.2cm.  They were unable to get a biopsy of it due to the location.  She said they are slightly worried that it grew but that my GI doc will go over all my options in December when I meet with her.  She said they may have to operate to get it off, or biopsy or whatever.  So I have that to look forward to.  But I will get the result of the polyps in my colon when I see her as well.  Other than the growing cyst everything went well.  I was clean enough to see everything so my absurd amount of prep actually worked!

Here is the size of the polyps in my colon, the original size of the pancreatic cyst in January and the size it is now.  And a dime for reference.

So there you have it.  I sent an email to the NP at transplant clinic and I hope to hear back from here on Monday.  I told her I was not happy and they need to work on their communication up there.  Confrontations are not my style but I am sick of this run around shit.  Someone needs to figure things out and I am so furious this got fucked up.  Being presented in December might not be an option now, and I suffered for 5 days without ANY antacids for no reason.  But shit happens and hopefully they fix this.

Happy Thanksgiving everyone!!!

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