Posted by: Kate | March 25, 2010

Quick! Tell me Your Tricks, Your Tips, Your Advice…

OK, so, sometime in the next, oh, 18 or 19 hours, I have a medical procedure, the likes of which has created an extremely high sense of anxiety in me.

How do you cope with extreme anxiety-producing procedures, things you cannot avoid or ignore?

It has to do with the type of wound dressing used to pack my various injury sites created when my abdomen went and tried to explode; it’s called a VAC, and medical and science geeks all around me get all excited at the mere thought. Essentially, it’s a sponge that allows the wound to treat itself from the inside out, rather than from the top down like a regular would might do. It runs through a machine that helps squeeze the sponges out several feet away, so it’s not just sitting there absorbing ick, but it’s processing the ick out of itself and returning to the wound – with audible results, sometimes, depending on the setting of the machine.

I have two VAC wound spots, plus some more traditionally packed areas, and my doctors are all aflutter about how well it’s working.  Watch for me in medical journals in another year or two, I betcha.

Great.  I’m grateful that such technology works and understand why it’s better/safer/different/better than than the traditional method.

But the process of changing the VAC dressing?

Hurts.

A lot.

I understand the theory that, right now, I’ve had three changes… the initial dressing was changed, then change #2 happened, and both of those were in the Surgical ICU: where the doctors had access to IV medications such as Versed and Fentanyl, allowing them to put me into a “conscious sedation” state: later on, I could remember pain, but I did not remember the process at all.  Just “fell asleep,” sort of, and woke up later with a very strange feeling of vivid dreams I couldn’t quite grasp.  It’s the same process I went through at the general-anesthesia dentist I used before.  Works fine for me, I’m OK with a big, heaping helping of groggy for the rest of the day as a trade-off for awareness of the event in the moment.

Then, for change #3, I was on the regular gynecological surgical floor, which means the patients spend a lot more time vertical than in the ICU, though we’re not exactly holding hopscotch tournaments in the hallways.  The rule is that the doctors on any given floor need to follow the pharmaceutical/medication rules of that floor, so if doctors would not ordinarily have that particular type of medication here, because it would take, for instance, special anesthetic residency training to be able to use those medications, then those medications are not used.

(There is a certain lapse in logic to me, something to the effect of, “You know, I’d be happy to walk back down to the SICU and lie down on a cafe table in order to get this treatment, because if it does exist somewhere in the hospital then I should be able to get it.”)  But, alas, that’s not allowed.  Trust me, if it was, I’d have found a way to reason them into it.

This means that, every three days from now until the VAC is removed – perhaps around April 9, which would mark 30 days – I get to hang around while they change the dressing  (OK, not true; they can do it from the rehab center I’ll be moving to next, as well).  The theory is that it will, early on, increase in pain, as I am more conscious and the sponges are large – but that, over time, it will get much better, because as they dig out the old dressings (not unlike scooping out a pumpkin for Halloween, and there‘s something I’ll never think quite the same about again) they get rid of old, previous scar tissue and nastiness as well, and so as time goes on not only do the sponges get smaller as the wound heals and gets smaller, but also the edges of the wounds get smoother and easier to work with.

Great.  Easier over time, less painful, quicker.  Fabulous.  But between now and then, there is tomorrow, and probably the three-days-from-tomorrow, times which I expect to be at least as miserably painful and scary and intense as two days’ ago’s event was.

Oh.
My.
God.

It hurt.  Lots.  Willem was there, initially to “hold my hand” and eventually to “hold me from leaping up to cling from the ceiling.”  They gave me extra pain medication, and they gave me Ativan, and both of those helped… some.

But I need better ideas.  Seriously good ideas.  What do you do, when you know you’re on your way into something that is going to cause intense pain and discomfort?  I’m going to try playing something on my iPod, and I’m going to have my husband right up close to help keep me grounded and focused on the fact that there is, in fact, an end in sight.  I’m planning to take a shower ahead of time.  Am open to other ideas… anyone?  Anyone?  Bueller?  Anyone?

Thanks in advance…

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Responses

  1. Can’t they give you a local anesthetic?
    My god that sounds horrible! I’m really of no help at all, other that to say I desperately hope you find something to help!

  2. How about a modified version of the natural birthing technique of focusing on the pain as productive…. accepting it, and going with it? A mantra made up by you that you sing inside your head, or chant, or chatter your teeth to – this is good pain, this pain means I’m alive, this pain brings me one step closer to no pain.

    Lots of people who meditate successfully say that they can observe their pain/discomfort, but be ‘other’ than that pain. Look at it like an OBE, float above your body and your pain for a while?

    Or get someone to slip you a great big joint 😉 *hug*

  3. I agree with Lisa. You need to learn meditation ASAP, woman! Instead of tensing up when you feel the pain, breathe into it. Breathe in warmth, positive energy and strength. Breathe out the sharpness of the pain.

    I know, I know. Easier said than done. Totally mind over matter. But don’t give in to fear. YOU are in control.

    Or that joint…

  4. I understand what you are saying, and that it’s the rule. But in my opinion that is a seriously f’ed up rule.

    “Yes, we have the means of making this much more comfortable for you, but you’re not on the right floor, so suck it up, bitch.”

    WHAT?

    I have no more advice for you, but I have lots more indignation on your behalf.

    And a gentle hug.

  5. First of all, I am so glad you are all OK and able to share the stories you have. We have been thinking and praying for all of you… ALOT!
    I am not sure what to tell you as we are definitly to different people. You have your mom and Willem to comfort you from the outside, which is so important. On the inside you have to do it yourself which is so much harder. You know the pain you have had, and you know it will become easier from what you have said. That would be the first thing I would focus on. Then focus on the three little ones you get to to see once you get through with the proceedure. Sometimes looking past the event helps me.
    I hope you continue to heal and feel more comfortable every day. I am so glad that you have Willem and your mom to help you. I hope that we can come see all of you soon. Miss you and send you good mojo daily.
    — Laurie

  6. Visualize that Margarita you will be sipping on the beach when this is all over….

  7. I agree with Lisa and Ashlie. Accept the pain, don’t try to run from it, breathe it in and breathe out comfort. You’re alive, and this too shall pass.

    Easier said than done though! Good luck Kate!

  8. Hmmm, I could tell you what my husband would say. Hang on to a certain part of the pain administrator’s body and look em in the eye and say: Now, we aren’t going to hurt each other are we??

    Just a little humor – very little I know – wish I had something to give you – seems to me rules were meant to be broken! As with everyone, I am indignant on your behalf – good luck sweetie.

  9. Kate,
    Have you done any type of alternative methods such as breathing techniques, yoga and/or meditation? music is also extremely useful. if you have not, there are people who can do guided meditations, help you with focusing, etc. I know of a woman in Portsmouth – the goal is to use the functions of the brain to step away from the pain …it takes practice to do it alone, and a guide can be very helpful…another way to see it is witnessing it happening, but not being in it…Reiki is another method that works very well…
    Laura

  10. One more thing – in NY every hospital patient is entitled to an advocate. I would think it’s the same where you are – if so – you ask for your advocate to come to your room and get him/her working for you on this situation. Good luck!

  11. Even an experienced meditator would have difficulty getting through this pain. However, getting *through* it with intense focus on breath, every sensation of inhalation and exhalation, while visualizing a cooling blue sedative wind blowing through your body, from head to toes, and simultaneously continuously relaxing every muscle that will be repeatedly clinching against the attack . . . is the recommended method.

    It would actually be better NOT to hold tight to Willem’s hand, but to just hold it as a relaxation meter and intense mental focus.

    You need to have been practicing for about 10 years already–but that method IS the way, and you do it for tiny spans of time, fighting to stay focused. It’s not that you do it for long, but that you keep returning to the concentration and the blue wind over and over and over, to keep the monster from ballooning out of control.

    It’s horrible and you can get through it, because that’s the way to get OUT of there.

  12. Would you be allowed acupuncture or acupressure treatment during the process? It sounds so awful. My thoughts are with you, I wish I could do more.

  13. Bloody hell, that sounds like torture. Not only do you have to feel it all happening, you have to HEAR it all the time too.

    Ativan is my salvation, hon. It helps me with my PTSD which you might be in danger of getting with everything you’ve been through. Maybe ask for more?

    The healing from the inside out is what they did for my scar that had opened up. It works really well, but I got the feeling it was for wounds that were smaller. Did you have a choice about them healing your wound that way, or was it just, This is what we’re doing, TS for you, lady…??

  14. “This too shall pass” works to a certain extent. But with this amount of pain? Heck, can’t they drug you within an inch of general anaesthesia? If not… urgh.
    I’d be terrified too. I just don’t have any experience with this level of pain. Maybe somebody who has had chemo could give advice on how to cope.

  15. Versed comes in an oral form. It doesn’t always work so well in adults, but it is _NOT_ considered conscious sedation.

    Depending on what they are using for pain, you should get an IV dose 5-10 minutes prior to them starting. Fentanyl would probably work better than morphine and wears off quicker. If they say they can’t give you something IV, ask about intra nasal Stadol.

    Ativan can work wonders, but if you’re already anxious, it might not be enough. Valium might work better for you.

  16. I have no good advice to offer … I’m a total wimp when it comes to pain. Just having my cervix checked (pre-epidural) was torture. I hope some of these techniques work. I’ll be thinking of you and hope it’s less horrific than you expect.

  17. Goodgawdamighty, Kate! As if these clowns haven’t tortured you enough. I agree with Lisa though. Marijuana could be your best friend. Just don’t forget to stock up on Doritos & Twinkies!

  18. That totally gives me the willies….I can’t imagine being in your shoes. Wish I had some sage words of wisdom, but I don’t. 😦

    Gentle and abundant hugs for you….

  19. The only pain I can think of that I had to manage was labor, and contractions are so rhythmical, that helps. How long is the procedure? Do they give you any breaks during it? With contractions I found I needed to make a noise, a sort of howling chant, but it died as the contraction ended. The breathing, going outside your body (or so far within you’re away from it) also worked for me. Could they try to do small spurts of activity with regular breaks?

    Or, as others have suggested, make enough of a fuss that they figure out a way to move you or break the drug rules. It is totally ridiculous that the means to ease your pain exists but you’re in the wrong place to be allowed it.

  20. The first part of the rule is there for patient protection: to ensure that the proper personnel and equipment are right at hand. Mistakes are made when people are working away from the familiar environment. Part 2 of the rule is ridiculous. They move you to x-ray, to the OR, to physio, don’t they? Gosh Kate, I don’t know how to help in that short a period of time. Look for an advocate, get your chief doctor on side. Worst case scenario: refuse the procedure until they give you pain management.

  21. A higher dose of the Ativan could help quite a bit, or maybe a different form like Klonopin or Xanax would give you better results (Kpins have been a godsend for my anxiety). I also found Mary Jane helped a lot when i knew I was going for root canals/extractions.

    Good luck and speedy recovery; you and the fam are in our thoughts and prayers.

  22. One of the things my dr did was use saline when she would change it out (at the advice of the military wound specialist), it helped loosen the sponge a little before ripping it out. It still hurt a bit, but not enough to make me want to slap her.

    The mediation helped too, kept going in my mind to my brother’s wedding that was happening in May, and how I didn’t want to have to lug that dang machine with me to California!

  23. From the Office of Patient Advocacy website for MGH:
    “You have the right to expect evaluation and treatment of pain”

    This is just unacceptable, Kate. There has to be a better way to manage the pain, and then there isn’t any need for the anxiety meds, right?

    I agree with the music aspect. Maybe your recovery needs a soundtrack? Something that takes you away or helps you channel the good feelings of another part of your life into the worst moments of your recovery.

    I hope it isn’t as bad this time.

  24. Ugh I can’t even imagine.

    For me, when I am looking forward to (not really, but you kwim) my spinal taps, which I would gladly do almost anything other than get them, of course valium helps for the day of, but before hand I have this “trick” I use, when I start getting really anxious and freaking out about it, I actually force myself to day dream. I know it sounds crazy, but I do, I literally day dream like I am thin and fabulous and getting ready to debut on teh red carpet, and what will I say when I run into Jason Statham, who of COURSE will fall head over heels with me, etc etc.

    If I find myself getting anxious again, I re center and force myself to daydream again. It might be juvenile but it does help with distraction.

    Now for the actual procedure I really don’t know. I try and do teh same thing when i am on the table, but it doesn’t hurt nearly as much as what you go through, so I don’t know how to combat it.

    One thing I will say about music is be careful not to listen to something you really love. Otherwise that song or songs will forever be connected with that horrible event in your mind and you will never be able to listen to them again.

    Ask me how I know…

    I am thinking of you kate, I can’t even imagine.

  25. Kate, this sounds awful. A few years ago, I had a boil removed that was, apparently, very large and very deep. I went to the ER, had emergency surgery, and then was sent home. Poor Jim had to change the packings because it had to heal from the inside out. It was so deep that initially he had to pack about 3 feet of gauze. It was minor compared to what you describe. I used Vicodin and deep breathing to get through it. That wouldn’t touch the pain in your situation. I hope you find a way to make this easier on you.

    BTW, loved the photos with your children. I know how important it was for your children to see you. Good for you for pulling it together for them.

  26. 1. Find out who is in charge of pain management and demand to see that person.
    2. Tell them you will withdraw consent for the procedure unless they find a way to alleviate the pain. Remember, they can’t so much as change a bandaid without permission.
    3. Remind them you could just add this to the list of things you will sue for.
    4. Be a bitch!

  27. Hey, I hope it’s over by now…
    but. There is no excuse for not sedating you for that. They can move you to the OR. You need Willem to demand it and not leave until he gets somewhere. Tell him to be a bitch!

    Maybe also ask about propofol, safe and instant IV sedation that doesn’t need a whole ton of monitoring.

    So sorry you are dealing with any of this, it’s just a travesty.

    And, FWIW, what helps me when I have to do pain, which I occasionally do (and I am allergic to pretty much all pain meds so bummer for me) is to focus on my breathing and say over and over “it’s just pain.” If you can separate pain from fear that something really bad is happening, it is easier for me to tolerate.

    Feel better!!!

  28. Instead of you using the frying pan on your husband’s head (I mean he has been great lately) couldn’t he use it on you a minute before the treatment. You would wake up with a headache that some Tylenol could take care of and no memory. Ok. Not practical at all. Good luck.

  29. OK This is ABSOLUTELY RIDICULOUS!!!!!!!!!!!!!!!!!!!!!!!! I have been part of a number of wound vac dressing changes and I KNOW they hurt they have to with all of the tape and debridement OUCH is not even on the same scale!
    First of all they can put some local into the area. First the turn off the machine shortly before the procedure and then disconnect and send some Lidocaine through the tube INTO the wound!!! It can be done and it IS DONE! I was on a typical med surge floor where they gave a low dose on fentynal about 30 minutes before and the whole thing was much more tolerable. I am sure many more of the country’s wound nurses in the country do this before their treatments it is whether or not the want to bring this up with the docs., not just the one’s in Arizona
    Some other things that “may help” if the allow it is having a couple extra set of hands there to help hold the skin a bit more taught as all of the “sticky plastic wrap” is being removed. If you don’t mind being further on display with more people. Other things that we have used are deep breathing similar to the whole labor breathing and try really hard to keep your abdominal muscles relaxed (ha yeah right!) You can also ask them to take their time with a couple breaks in throughout the procedure or ask them to hurry in each step… get the tape off, rest for a minute, clean and asses wound, rest, repack, tape and connect. You can and should call “Time Out’ when you need to. Big hugs and lots of virtual hand holding for this one!

  30. I’m with those who say you have a RIGHT to better pain management. I hope to God you get it. I never could do meditation, breathing, my labors happen so fast and hard all I can do is scream at the top of my lungs, “God help me!” and other not-so-nice things.

  31. Wound vacs should never hurt that much. We always premedicated before we changed them. You do have a right to pain management. Good thing I have lost my tomahawk…………..cuz the nurses treating you are clueless and cruel.

  32. I too am with everyone who has mentioned you deserve better pain management – you do! Sometimes you have to get really vocal about it though. I know from my 2 open heart experiences – I also found that times when I was anxious and tense hurt much more than (like when they riped the chest tubes out and I was fully awake and not on much pain meds – damn that hurt!) when I was more relaxed. So perhaps your idea of some nice relaxing music on your iPod with perhaps a bit of valium (or some such thing) would make it better for you.
    I was so happy when Gretchen told me you had been moved to rehab – that is such great news!
    Hang in there you are doing great!
    Much love and prayers

  33. On second thought, you can’t smoke a joint in the hospital (non-smoking facilities and all that), but a loving friend CAN boil it into a strong tea then use that tea as the liquid for a nice batch of brownies. Just don’t toss the dried leaves into a batch of brownies. It doesn’t really work that way. Bon appetit!


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