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Author Topic: Need to rant!  (Read 7119 times)
carla13
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« on: August 14, 2008, 12:38:12 AM »

Hi,
I don't mind if no-one reads this. just writing it will make me feel better!

I had a neckline put in about two and a half weeks ago, andwhen I woke up from the operation WTF??!! the neckline wasn't exiting from my right shoulder (as it had when I had one almost twenty years ago) but from the inside of my right breast!!  :urcrazy;

I'm so p****d off I could scream! Did the surgeon not think about me being a woman and the complications of wearing a bra with such a stupid exit site? Did he not stop to consider that every time I go to bed if I roll on my side it's hideously uncomfortable??!! I have clamp shapes pressed into my skin and my skin is so irritated I can't sleep. Plus when I go  for dialysis I have to remove my undergarments so the nurses can get to the line!

The surgeon conveniently went on holiday immediately after doing this to me, but he's back next week. Now I want to give him hell for doing this to me and also to ensure he doesn't do it to any more women he operates on, but he's the guy who will be responsible for deciding if I can have a PD catheter put back in.

So, the question is: Do I give him what for and risk that my 'attitude' will sway his judgement on re-inserting my catheter?
OR: Grit my teeth and be charming to him so that i get what I want?

Don't you hate it that life decisions often are dependent so much on other people??

 :banghead;

xx
carla
xx
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Ang
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« Reply #1 on: August 14, 2008, 12:56:32 AM »

hey  carla,


                 i  dumdfounded  and  don't  know  what  to  say.

is  this  position  a  regular  thing?

no  where  else  to  go?


usually  if  you  give  somebody  what  for  it  rarely  achieves  much  but  makes  you  feel  better  cause  you  got  to :boxing;  for  a  short  while.


weigh up  the  pros  and  cons  then  let  him  have  it  where  it  hurts :yahoo;
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live  life  to  the  full  and you won't  die  wondering
carla13
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« Reply #2 on: August 14, 2008, 01:30:50 AM »

Hey Ang!
Thanks for that!  :thx; Unfortunately i can't go anywhere else as No other hospital in my area does this procedure as far as I know, but that might be an option worth looking into!
xx
carla
xx





EDITED: Removed color prompt - Sluff/Admin






« Last Edit: August 14, 2008, 05:00:17 AM by Sluff » Logged
RichardMEL
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« Reply #3 on: August 14, 2008, 03:38:50 AM »

wow that's unbelieveable... is it because (maybe) you had the previous line to your shoulder and somehow they couldn't go there again? don't they use the left side??? Without trying to sound crude how could they not notice it was your breast they were going into/through? I understand it's hard enough for ladies with chest catheters (and for once I'm happy to be a man in this regard)... I can't imagine how it is for you... I hope you can somehow get some recourse... maybe it fixed so it isn't there....

(gentle) hugs for you xox :cuddle;
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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
monrein
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« Reply #4 on: August 14, 2008, 04:24:17 AM »

Carla, I just had mine removed, it was in since April and it was a similar thing.  They run it under the skin quite a ways to help prevent infection directly into the body and the positioning is very weird.  I eventually got used to tucking the tube bits into my bra and towards my side so it wouldn't look like I had a ginormous right nipple.  Sort of like a marshmallow.  The clamp marks are tough.  I used to have the nurse put a bit of gauze under them as part of the dressing.  I also eventually stopped wrapping the pigtails (tubes hanging down) with anything so they took up less room in the cup of the bra.  The worst though was the rash I got from the continuous dressing.  Hopefully it'll go away soon.
Hang in there Carla.  :cuddle;

« Last Edit: August 14, 2008, 05:08:38 AM by monrein » Logged

Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
Second trx doing great so far...all lab values in normal ranges
Sluff
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« Reply #5 on: August 14, 2008, 05:02:03 AM »

Such an invasive procedure you would think they would let you know before they do something like this.
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twirl
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« Reply #6 on: August 14, 2008, 05:12:22 AM »

you should have been informed ahead of time
maybe there could have been some other choice
sorry about this
get better
cheryl
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carla13
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« Reply #7 on: August 14, 2008, 03:38:51 PM »

Thanks everyone!

Monrein, I think the gauze is an excellent idea, unfortunately i have 'kidney brain' at the moment, otherwise I might have thought of this by myself! D'oh!

Thanks for gentle hugs and thoughts! It's amazing how healing it can be just knowing that someone in the world understands! Feel a lot calmer about it all now and will have a 'gentle' word with the surgeon next week (I'll be very calm - honest!) and suggest that this position of the line in a female patient isn't the best idea...

And then ask him to put my PD catheter in! knowing my luck he'll exit it out of my ear - or worse!!!!! :oops;

xx
carla
xx
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Rerun
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« Reply #8 on: August 14, 2008, 03:46:14 PM »

The same thing happened to me.  When I woke up and it was coming out from under my armpit I threw a royal fit.  I called the surgeon and HE ANSWERED.  I was screaming into the phone "Why did you place this thing so it was coming out under my arm for God's SAKE"!  He was quite and then he calmly said "To save your life". 

Oh, well, talk to ya later.........  AHHHHHHH        What do you say to that?


If you can get away with it  go braless....
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carla13
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« Reply #9 on: August 14, 2008, 04:01:27 PM »

Cheers Rerun!

Unfortunately being bra - less is not an option! I have to remove it for my haemo, but that's the ONLY time lol!

Saving your life huh? God that's brilliant! There's no good comeback to that is there?

I'm not going to kick off at the surgeon, just inform him that maybe that wasn't the best placing of a line he's ever done...

xx
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G-Ma
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« Reply #10 on: August 14, 2008, 04:40:19 PM »

Yes, I would ask "gently"  why in the world he put it there?      Mine was an emergency but above my right breast and the da_ _ tubes still have to be tucked and look gross.  Might possibly be able to have it out in next 2 weeks if fistula keeps working.
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Lost vision due to retinopathy 12/2005, 30 Laser Surg 2006
ESRD diagnosed 12/2006
03/2007 Fantastic Eye Surgeon in ND got my sight back and implanted lenses in both eyes, great distance & low reading.
Gortex 4/07.  Started dialysis in ND 5/4/2007
Gortex clotted off Thanksgiving Week of 2007, was unclotted and promptly clotted off 1/2 hour later so Permacath Rt chest.
3/2008 move to NC to be close to children.
2 Step fistula, 05/08-elevated 06/08, using mid August.
Aug 5, 08, trained NxStage and Home on 9/3/2008.
Fistulagram 09/2008. In hospital 10/30/08, Bowel Obstruction.
Back to RAI-Latrobe In Center. No home hemo at this time.
GOD IS GOOD
carla13
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« Reply #11 on: August 14, 2008, 04:50:04 PM »

Yeah the lines are gross, but I'd done PD before that so was resigned to looking like a freak!  ;D
I'll keep my fingers crossed for your fistula working G-ma! Wouldn't it be great to never see another tube as long as we lived!! Ha ha!!
xx

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del
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« Reply #12 on: August 14, 2008, 05:14:44 PM »

Carla, I would not get angry or mad with the doc(even though I would be fuming inside0 but I would tell him how uncomfortable it is because of where it exits. I would very "delicately" explain why it is a bad spot for a woman.  I am not on dialysis (hubby is) but I would not be very happy having to remove my bra in a dialysis unit. It's bad enough to even have to be there!!
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G-Ma
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« Reply #13 on: August 14, 2008, 05:27:18 PM »

thanks carla...yes we will pray for each other to be tubeless... :bandance;
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Lost vision due to retinopathy 12/2005, 30 Laser Surg 2006
ESRD diagnosed 12/2006
03/2007 Fantastic Eye Surgeon in ND got my sight back and implanted lenses in both eyes, great distance & low reading.
Gortex 4/07.  Started dialysis in ND 5/4/2007
Gortex clotted off Thanksgiving Week of 2007, was unclotted and promptly clotted off 1/2 hour later so Permacath Rt chest.
3/2008 move to NC to be close to children.
2 Step fistula, 05/08-elevated 06/08, using mid August.
Aug 5, 08, trained NxStage and Home on 9/3/2008.
Fistulagram 09/2008. In hospital 10/30/08, Bowel Obstruction.
Back to RAI-Latrobe In Center. No home hemo at this time.
GOD IS GOOD
rose1999
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« Reply #14 on: August 14, 2008, 11:18:58 PM »

Carla this sounds awful and I feel for you.  I hope you will tell the Surgeon that this isn't the best place for the tube and ask why it had to be there but stay calm (as you say you will be relying on him in the future).  One thing I did wonder is would a nursing bra be any help, the sort where you can open one cup rather than take the whole thing off?  Just an idea which may or may not be a good one!  Sending you a gentle hug too  :cuddle;
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Joe Paul
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« Reply #15 on: August 15, 2008, 01:04:20 AM »

Carla, I agree - someone should have let you know where they were going to put the catheter. That had to be one heck of a shock to wake up to. I hope you find a way to be comfortable with it.  Maybe you can have the techs put up the portable curtains, to help with your dignity.

Before I went for my fistula surgery, I was told being I was right handed that more than likely, my fistula would be placed in my left arm. When I woke up, sure enough it was in my right arm. Seems the blood flow was much better there, but it was hard learning to favor the left arm till it healed. Reason I mention this is because I can relate a little to the shock you must have felt.

As I said, I hope you can find a way to be comfortable with your new catheter, good luck to you  :thumbup;
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monrein
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« Reply #16 on: August 15, 2008, 04:07:30 AM »

Carla, will it work to wear a camisole top under a blouse, then just unbutton blouse and slip the tubes out of your bra for hook up?  That's what I did and then I could just pull the blouse back over the tubes area if I still felt too uncovered.  Now I still wear the cami but slip my fistula arm out of the sleeve but stay pretty well covered up.
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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
Second trx doing great so far...all lab values in normal ranges
carla13
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« Reply #17 on: August 15, 2008, 02:10:48 PM »

Hi Monrein,

Unfortunately the lines are quite low, so this wouldn't work. At the moment, I have a button up shirt on which allows the tubes to be connected and I can do up the buttons and maintain a shred of dignity! But there's no way it could be done with any kind of underwear on... :(

Thanks for your suggestion though!

I saw my PD nurse today and she's trying to push for me to get my catheter put back in as soon as possible! So I'm praying it will be sooner rather thatn later! (She actually said the first week in September - Yippee! but I'm not counting on that being the case I know the NHS too well, it probably means September 2010!!!!)

xx
carla
xx
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monrein
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« Reply #18 on: August 15, 2008, 02:46:16 PM »

What a drag Carla.  I hope you'll be sorted soon and back to what works for you.
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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
Second trx doing great so far...all lab values in normal ranges
pelagia
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« Reply #19 on: August 15, 2008, 02:47:36 PM »

I can't offer any wise words, just this :grouphug;
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As for me, I'll borrow this thought: "Having never experienced kidney disease, I had no idea how crucial kidney function is to the rest of the body." - KD
kitkatz
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« Reply #20 on: August 15, 2008, 06:54:27 PM »

When I had my catheter in I gave up wearing a bra.

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Remember your present situation is not your final destination.

Take it one day, one hour, one minute, one second at a time.

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RichardMEL
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« Reply #21 on: August 16, 2008, 06:47:06 AM »

When I had my catheter in I gave up wearing a bra.



Is that why you won't go shirtless????

 :shy;
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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
kitkatz
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« Reply #22 on: August 16, 2008, 10:40:35 AM »

 :rofl; :rofl; :rofl; :rofl;  I do go braless on the weekends though. Shirtless just in front of hubby.  I do not want to scare the world!
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lifenotonthelist.com

Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

Remember your present situation is not your final destination.

Take it one day, one hour, one minute, one second at a time.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
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« Reply #23 on: August 16, 2008, 03:43:14 PM »

maybe it's the child of the 60's that i am or the thespian in me (can't tell how many times i've changed back stage without a dressing room) but i'd be so angry i wouldn't care about dignity or a bra, i'd just open my shirt and hook up and if anyone complained i'd refer that person to the doctor for an explanation! the doctor may have a very logical explanation, the point being he should have explained! do ask him when he returns, you might be surprised. even though you are angry you seem to be handling things well. at some point you will laugh about this. good luck and hang in there.
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carla13
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« Reply #24 on: August 17, 2008, 09:47:35 AM »

HI Grammalady!

I'm not a prude, as an ex(it's hard enough to get acting jobs over here without being ill as well!) full time actor, I've got no problems changing in fornt of people, I've developed lots of strategies to keep certain areas concealed!!

I thnk what makes me angry is that the doctor obviously hasn't thought of the implications of the placement of the catheter in a female patient. It is this attitude of surgeons that concerns me most (I know BTW they aren't all like that!) It's a lack of forethought that makes me feel like a piece of meat on a slab rather than a thinking feeling person, and a lack of concern and care for the after effects onthe patient. We are just meant to put up and shut about things like this. Even my PD nurse told me not to talk to him about it until he'd put my PD catheter back in!
Why??!! Is he going to do something awful to me on the table while I'm under, because I queried his work??!! Is he going to refuse to replace my line because I dared to tell him he was wrong?

Scary!!
It's very difficult because we are so much at the mercy of these people, who are after all just human like you and me and are fallible, and prone to failings like arrogance, stubborness incompetence and some times  downright supidity!!

There 'nother rant over! Phew ! I'm exhausted!! ;)
xx
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