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Wussy needs advice please.

AllyJayAllyJay Member Posts: 793
edited September 2018 in General discussion
Grab your coffee folks, I'm afraid this is going to be rather a long and rambling kerfuffle. Next week, I have to return to the slammer to have an internal carotid aneurysm clipped. At my pre admission appointment (five people and six hours total), I was told that an arterial line would be put into my wrist to monitor, beat by beat, my blood pressure and pulse. Apparently vitally important that the blood pressure be well controlled. I would also have a femoral line put in in case of big vessel needed to administer blood in case of haemhorrage or any other drama which needs more than just a standard IV line.

Fair enough, but here's the twist. They can't or won't do this after putting me under. I have to have these put in in the anaesthetic bay, under locals, before being taken in to the theatre. Uh ooohhhh...nah... not happening. I explained to the anaesthetist and to the neuro surgical doctors that I had become extremely needle phobic over this wonderful "journey" (fuck that), that I've been on over the past two years. The lovely biopsies from breast and nodes, the soon after portacath inserted under local, I might add, No twilight sleep there...and furthermore, this was done by someone learning how to do that shit, so I had to listen to all the "right now make that incision larger, now stick your finger in and force a tunnel between the two incisions. Right now be careful you don't perforate the vessel "etc. Very traumatising listening to that and feeling all the pulling and tugging.I then had the charming dye into nipple before the Great Tit Lop Off...nice... Then the highlight of my wonderful trip down Cancer Boulevard...the Big Chop. Because of a pre existing medical condition, antiphospholipid antigen syndrome, I chuck blood clots at the drop of a hat. Been on warfarin for over twenty years.

Before starting chemo, I came off the warfarin and went onto clexane..two jabs twice a day and that went on for eithteen months so about 1080 jabs there too all told. Anyhooo, the night after the bilateral, some individual decided that I must have my clexane. Great...started a massive haemhorrage. Rushed to ICU and a stampede of medicos arrived and surrounded my bed. One headed for my right wrist for an arterial line and one for my right groin for a femoral line. (Sound familiar)? They were both faffing about drawing up local, but the surgeon was yelling that there was no time.."Just get those lines in... go go go..." So no locals here, and fuck that "Just a sharp scratch and a bit of pressure here" ..it was horrendously painful. I was freaking out, thinking I was dying and the whole thing still leaves me with the shakes just thinking about it.

I explained all this to these clowns, who seemed to think I was being a bit over the top. "Really, it's very straightforward and we will give you locals". Yeah right, and they don't hurt either, do they? Especially as I have severe neuropathy in my hands and feet, which gives mixed feelings of skin numbness, but increased sensation of pain with pressure, such as blood pressure being taken...feels like my hand is swelling and will burst.I have to go in the day before this Frankenstein head chop to have my warfarin rapid reversed. This will require a drip.

After being told that they couldn't put these lines in on the day of surgery after being sedated, as they had to have the arterial line in to monitor my B.P. before going under, so a catch 22), I asked if I couldn't be sedated the day before, when I have the warfarin reversal done, and then have those two lines put in when I'm in La La Land. Then the following day, I would arrive at the theatre with warfarin reversed, IV line in, arterial line in, femoral line in, ready to rock and roll, and me not having been turned into a sobbing mess. I was told that that was unnecessary, and that they would proceed as explained.

My question (finally) is this. Do I stick to my guns the day before, and demand they put in the lines under sedation, or wait till I'm in the anaethetic bay on the day of surgery, and then just flat out refuse to have them under local. If needs be, say I'm going to withdraw consent for the surgery and they can all bugger off and go home. That should put their feet to the fire. I'm not usually so passive aggressive, but I am not going to let them do this to me while I'm awake. After they knock me out they can poke and stab me wherever they want, but not while I'm awake. What to do...???
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Comments

  • SarnicadSarnicad MelbourneMember Posts: 318
    I’d be giving them the do it the day before or not at all option and stare them down. 

    I havent had half the needles you have but I’m still scarred mentally after my port insertion there would be no way they would be getting the rest of that done. 

    Do you have a support person that could advocate ie stress how much of a mind mess this is for you, that you could get to help convince the medical team?  Btw the medical team sound like they need bedside manner training for dismissing your fears. Perhaps that is the second option complain about the dismissal of your concerns
  • kezmusckezmusc Member Posts: 1,540
    Wholly shit @AllyJay,

    No wonder your freaking out.  What a horrible time you've had.  I don't understand why they wont sedate you the day before.  It might be unnecessary for them but not for you. Is there an actual medical reason they won't do this?

    Do they have a nurse navigator that might be able to speak to them in doctor language and get the message through?
    I would be definitely sticking to my guns and keep hassling them.  They should respect your wishes if there is no clinical reason not to.

    xoxoxo
  • Kiwi AngelKiwi Angel Sydney, NSWMember Posts: 1,952
    OMG @AllyJay how awful for u. I would be feeling exactly the same after what u have been though previously. Big hugs xoxoxo
  • arpiearpie Mid North Coast, NSWMember Posts: 4,883
    edited September 2018
    O M G .....  you have really been thru the mill & about to go thru it again!  :(   

    and NO - you are NOT a wuss!!

    I SO feel for your dilemma.  I hope you ARE able to get it done the day before, so at least it is not double dipping .....   We'll all be thinking of you next week!  :neutral:  xx
  • kmakmkmakm MelbourneMember Posts: 7,973
    This makes my blood boil and why I'm interested in looking into patient advocacy.

    First of all, prepare a document so it's down in writing. Copy and paste your post here and edit accordingly.

    You need to then get that document into the hands of the layers of management above the minions you've been speaking to. All of the layers to the top. Find out the names of the head of surgery, the head of surgical nursing, all the appropriate bosses all the way to the top.

    The minions are used to people telling them they're scared of needles so they are programmed by this to downplay your very real issue. Do you have a friendly outside doctor who can intervene for you? Your GP? A psychologist? Your breast surgeon? Maybe your breast care nurse if she's a good 'un?

    Demand a reason (also in writing). Why won't the do it? Ask for this reason to be provided in writing. Say it may be needed in a compensation claim for unecessary trauma after the operation.

    You're going to have to spend the next week being a complete pain in the arse to them. But the squeaky wheel gets the oil.

    Lodge a formal complaint if no one listens.

    If you get no joy, contact the local paper about the heartless treatment you're receiving. Show them the pucture of your Clexane bruised stomach. Tell the hospital you're doing this.

    @Zoffiel may be able to help with this 'problem'. Let us know how you get on.  K xox
  • iserbrowniserbrown Regional VictoriaMember Posts: 4,644
    Are you a previous patient of this hospital that you will be attending as your files will tell the tale!  
    You need to find an advocate.  What hospital are you attending?  On their website do they have a patients rights area that you can navigate through?
    https://www.health.nsw.gov.au/patientconcerns/Pages/your-health-rights-responsibilities.aspx

    I think you are in NSW hence the link above, not sure it will help or not 

    There are patient advocates but I think from the little I have read so far that they are private, you need to engage and pay!

    Who referred you to this procedure?  Surely they can advocate for you and to answer your question 
    Do I stick to my guns the day before, and demand they put in the lines under sedation,

    Yes get your referring Dr to weigh on and bat for you 

    Best wishes



  • kmakmkmakm MelbourneMember Posts: 7,973
    edited September 2018
    I went back to edit five minutes later and it wouldn't let me!

    I wanted to add that I had an arterial line for my nine hour mastectomy and reconstruction. The anaesthetist told me I'd wake up with it when she met me before the operation. And I do not have needle phobia. Respectfully demand a compelling medical reason why they are refusing to meet your request.

    Politely tell them you are preparing to lodge a formal complaint and request their names, checking you've got the spelling right. 

    You could also give the BCNA helpline a call to see if they could give you some advice on how to be heard.

    Also, NOT WUSSY.

    Good luck Ally. Start working the phones now. Let us know how you get on. Kate xox
  • AllyJayAllyJay Member Posts: 793
    Thanks all for your feedback thus far. Yes, I'm a public patient and at a large teaching hospital in Sydney. They do have a Patient Advocate, with whom I've spoken to before on previous admissions. Seems they are basically a "Tick and Flick" service who go through the motions as stated in one of their Policy and Procedure manuals, but basically lack teeth, time or both. Social Worker...ditto...they might make a fuss, but if The Worshipful Doctor, who pisses eau de cologne and farts air freshner has spoken, what can they do? I simply refuse to believe that in this day and age, they cannot insert these hose pipes under sedation the day before. I'll already be there, in one of their precious beds, and all it would take is a bit of compassion on their part. However it seems that their position is "It's routine, it really is no biggie, it's just a little needle poke for the local, and then it will be over". Well stuff that. I'll bet if I dragged any one of these bozos into a skyvan down at Picton, went up to 12 000ft and invited them to step out and get their knees in the breeze with me, they might not be so brave. I'd assure them that it was all routine, that all the rest of us had done it many times, all it was was a little jump out the door, pull something at some point and then land. Easy peasy. Yeah right, they'd get an almighty shove from the rear from me if they were blocking the doorway for the rest of us. Wussies!!!
  • Blossom1961Blossom1961 Regional VictoriaMember Posts: 1,857
    Wow @AllyJay. I hate needles and I have not gone through what you have. My initial biopsy was done with the doctor not putting the anaesthetic in the right spot so my body went into convulsions when he biopsied without it. Then of course, the so called 'painless' portacath procedure. My doctor has already agreed to putting me under when taking the portacath out after my treatments. I have stuck to my guns ten months before I even need to. Don't back down. Our lovely journey does not mean we are just meat slabs. You do need to let them know in advance you are not backing down as they need to have the proper medical personnel. 
  • Brenda5Brenda5 Burrum Heads, QldMember Posts: 2,407
    Could you see your gp and get some valium for that day and a crash course in happy pills for anxiety? Make you be at ease a whole lot more. 
  • AllyJayAllyJay Member Posts: 793
    Hi there @Brenda5, their argument for one the day sedation seems to be because it's brain surgery, they can't have me zonked out as they won't know if any post surgery doziness or confusion is from those drugs, or the surgery. Hence my suggestion to them that I have the Happy Juice the day before, but it seems to have been filed in the Too Hard Basket (for them).
  • FletchFletch Adelaide Member Posts: 102
    @AllyJay , wow, You are so brave ! I agree with everyone else. Your body and mind, not theirs ! They must respect your rights as a patient. Putting it all in writing asap is agreat idea. This makes most places sit up and take notice because they become liable. Cut out the he said , she said stuff.  If you can do emails be sure to cc in everyone you can think of !!! Even the local MP ! 
    Best wishes. Xxx
    My blood boils though......
  • j9kj9k Member Posts: 98
    Hi @AllyJay. So sorry you have to go through this - you've been through way too much already. I use the term wuss to refer to myself these days and I haven't been through what you have. My first point is, if they are a teaching hospital, wouldn't they be taking the opportunity to 'teach' how to manage a patient focused approach to your situation? It's not teaching if they just do the same thing every time. Isn't the first principle of medicine  'first do no harm' ?  There is time to plan it/do it, you are in the day before, I can see absolutely no reason for them not to be able to do it to minimise putting you through further trauma. And trauma is what you are dealing with. It is a particular issue of mine - the ignorance of the mental and emotional impact of treatments and procedures, in which all of you are well versed. 100% agree with @kmakm - document every contact you've had, and put it in writing. The patient advocate should go into bat for you as should your GP. If not document their lack of support and see if bcna has any suggestions. If you are in NSW, there is an organisation called Health Consumers NSW. They are an org aiming to improve patient input into healthcare, advocate for patient centred care and co-design in medical systems. They may be able to direct you to someone who can help. @kmakm I have done some work as a 'consumer' rep (I don't like the term) with the Qld version of this org. If you want to do advocacy work they would offer another avenue. There has recently been a BC opportunity in Qld via my state org.

    I wish you well @AllyJay. It's not fair that you have to fight for this - to be treated humanely and with respect.
    Xx <3
  • kmakmkmakm MelbourneMember Posts: 7,973
    edited September 2018
    Thank you for that info @j9k. I'm rebuilding my strength and resilience and then will be girding my loins to see what needs to be done to move into this space.

    Ally, have you got that list of names yet? Would you like me to help? PM me if you'd like. I think it's imperative that you communicate with them now that you will not be moved on this situation.

    How to put this nicely... are you a senior citizen?! With this week's announcement of a Royal Commission into aged care, there should be extra sensitivity round how you are heard, treated and respected.

    K xox
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