Author Topic: Surgery Update... (or look who's right back on morphine)  (Read 34905 times)

Pooh

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Re: Surgery Update... (or look who's right back on morphine)
« Reply #60 on: May 17, 2008, 10:01:46 PM »
Hi Lauren,
My goodness gal you sure have had a terrible time with not one, but two hospitals.  I can't imagine coping with all of what you have been through.  You deserve a medal and a lot of applause.  Bravo!!!

I haven't been around as you know, but I have been checking in now and then to see how you have been doing.  I pray this mess gets straightened for you SOON.  I am so sorry you have been through so much unnecessary pain and insensitive doctors.

Thank God for your uncle and his phone calls.  Hugs to him also.  Please hang in there kiddo, there be better days a coming. 

Hugs and God Bless,
Pooh

kimbo

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Re: Surgery Update... (or look who's right back on morphine)
« Reply #61 on: May 18, 2008, 02:19:52 PM »
Hey Word,

How bout  "The Chronicles of Wordnerdia" as your new title.
I hope your doing better. Sounds like that hospital will be a better place when your thru with them.
I will continue praying. We will all be so glad for you when all this is resolved.
God bless you, kimbo
Diagnosed March of 2007. SJS/ RA Positive at 80  International-SSA strongly positive at 811-SSB 273
ANA positive at 1:1280
Hashimoto's
Gabapentin, propanol, Celebrex, Synthroid, Cytomel, vitamin D, B complex, Omega 3 complex, and multi vitamins; At 62, I seem to be a low maintenance sjog

stegello08

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Re: Surgery Update... (or look who's right back on morphine)
« Reply #62 on: May 18, 2008, 04:43:23 PM »
I think "The Chronicles of Wordnerdia" is a great title too...lol

lynnmarie219

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Re: Surgery Update... (or look who's right back on morphine)
« Reply #63 on: May 18, 2008, 04:52:10 PM »
Still thinking of you and hoping you are getting some well needed rest and some long overdue answers!

wordnerd

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The Chronicles of Wordnerdia
« Reply #64 on: May 18, 2008, 06:53:53 PM »
Kimbo!  Great title idea!  I'm trying it on for size on this post  ;D  How does it look?  (btw I can't wait to get out of here and go see Prince Caspian!!!)

Tami - Thanks for reminding this recovering perfectionist/care-taking personality that it's okay to need and receive support sometimes myself.  Sometimes I really need reminding.  Thank you also for reminding me that there are many ways to support others... I hope that by sharing with everyone here others will feel that when they are in need they will always get support here too and if anyone is going through or has been through similar experiences I hope that they will feel less isolated and alone in those experiences.  I have been linking right to this thread from my email lately so after you mentioned the read count I went and checked it myself... wow.  I had no idea how much this tread was being followed.  All I can think to say is thank you thank you thank you.

Thanks mompain, stegello, and lynn for your continued support!

Pooh I know you've been dealing with more than your share with hospitals lately also!  Thanks so much for taking the time to post!  I hope you and your hubby are doing ok!

And yes I don't know what I would do without my uncle!!!  I wouldn't even have the doctors I have without his help.  I think that anyone dealing with complex and mysterious chronic medical issues needs to get themselves a well respected and connected doctor in the family ASAP :D

I looked back to see when I last posted.  I can't believe it was only a little over 48 hours ago... it feels like a month.

I've had a really traumatic 24 hours.  I will just briefly summarize because I'm am still trying to process what happened, and I already took three hand written pages of notes on what happened for documentation purposes.

Basically my pain doctor called me at around 4pm Friday afternoon.  I told her how bad my pain from the spinal tap still was.  It basically was double what my last pain scale number ten had been (the pain of an acute flare of my AI pancreatitis followed by when my gall bladder was inflamed, infected, and letting stones escape into my bile ducts at pain level 9).  By the time she called the nerve pain in my leg felt better but the spinal tap migraine had spread to the whole back of my head and all the way down my back including the whole tap site which also hurt terribly.  She said she would call in the significantly increased pain meds after she got off the phone with me.

I waited 20 minutes to give her time to call and have the orders recorded.  Then I asked my nurse for them and she said she didn't know anything about it yet.  This continued until the shift change at 7pm.  After the shift change I finally got my night nurse to come in and he finally had the orders except all the orders were contradicting themselves except for the 4-6mg of IV morphine for break through pain.  (I later found out that my doctor had accidentally called in the wrong pain med which made the orders extremely unclear and they needed to be rechecked with her.)  My nurse gave me 4mg IV to start and I could have 2 more if that didn't work while he called for her to verify the two oral pain meds.

The IV morphine barely took the edge off.  I had been using every non-pharmaceutical pain management trick I knew to mentally endure and relax through the pain already for about 9 hours at this point and was getting to exhausted to concentrate enough to continue (some other time remind me to write up a thread with these awesome techniques btw).  So I started pushing the call button for the nurse at 10 min intervals.  After about 40 minutes I began asking for another nurse to come and give me the other 2mg if he was too busy and finally after 50 minutes I begged for the charge nurse to come.

So about 10 hours after the spinal tap (or around 9pm) I got the last two milligrams.  The charge nurse was very alarmed at my pain level and checked my tap site for leakage or bleeding but it was fine.  She then went to investigate if my nurse figured out the oral pain meds.

Then my nurse came in making excuses and annoyed I had paged for him so often.  Then.... well basically he never asked why I was crying hysterically at this point.  He sat up the head of the bed and continued to do so as I screamed in agony louder and louder begging him to stop.  He didn't even seem to notice.  He only angrily told me I had to sit up to take my night time meds.  I laid the bed back down (if you have severe headaches after the a spinal tap they tell you to lay flat because it gets much worse the more upright you are).

I took my night meds he handed me and noticed an orange pill I didn't recognize (this is especially dangerous for me because of my severe yellow dye allergy.... everything that isn't white has to be checked for yellow dye... mistakes result in anaphylaxis).  Still crying I asked what it was and said it needed to be checked for yellow dye (he was my nurse the previous night and we had been through this with all my evening meds already).  He told me it was a pill I provided, but it wasn't.  He then demanded that I tell him which one it was.  I couldn't obviously since he took them out one at a time.  He continued this way until I screamed and cried for the charge nurse.  She came in and I explained the pill issue and she suggested I take one of my xanax to calm down while went to go get the pharmacist to figure out which pill it was.

Then my nurse reluctantly retrieved the xanax bottle (I had to take mine from home because theirs had yellow dye).  He then wanted to know the exact number of pills left my half used bottle.  Then he wanted ME (still crying in frustration, fear of him, and pain) to count them for him.  Then he wanted to count them together.  When I said I couldn't do any of those things he left to go count them w/ the pharmacist.  I asked him to get the charge nurse right away first.  He came back and said she was busy and what did I want.  I didn't care anymore at that point and said I wanted another nurse because I couldn't understand how he could not even seem to notice that I was crying in pain, that I screamed and screamed when he sat up my bed and didn't even notice or care, and that he wanted me to count out how many anxiety pills I had in a partially used bottle while I was hysterical and still in pain.  He left and I haven't seen him since.

The charge nurse came in and I told her what he had done to me and demanded someone else and asked about my oral pain meds.  They still weren't straightened out.  It was now 11pm... 13 hours after my spinal tap.  She left to go page the on call emergency pain specialist.  I called my mom and she got off the phone to page my doctor but got he on call person first.  Then he talked to the charge nurse.  Thankfully he was in the hospital.  He came up talked to me, looked at my chart, called my doctor to clarify, and wrote me a hefty dose of pain meds to bring the pain down after soooooo long.  I got the meds at around 3am and finally got relief after the most painful 15 hours of my life.

That's the short version (amazingly).  I posted that post after I felt better and read a bit to calm myself down.  Then at around 5am I finally was relaxed enough to turn out the light and sleep.

I rolled onto my side for the first time since the spinal tap and pulled up the covers behind me.  I felt something wiry that wasn't there before.  I felt around.  Realization dawned and I began crying and I tried not to move and feel around to the nurse button asking for the charge nurse.  I asked her to verify that my bladder stimulater wire was no longer taped securely to my body and that it was hanging by a thin wire.  I had her tape it right where it was so wouldn't rick pulling out of the place it was surgically implanted... or at least any further out.  I asked for another xanax and tried to stop crying with despair that this whole horrible experience since the surgery might be for nothing.  Totally pointless suffering because a stupid lumbar puncture tech removed some bandages to do the tap and didn't put them back where he found them.

I got about an hours sleep.

A few good things to end on.

Right after the spinal tap a volunteer walked in to give out info about services volunteers performed.  I couldn't see her but I recognized her voice from my last hospital stay here.  She saw that I was crying and in pain and asked if it was a bad moment and should she come back.  I said okay she could tell me the info and explained I was just waiting for my pain meds and ect.  She asked if I wanted her to hold my hand for a while.  I said yes.  She sat with me for almost two hours and help my hand and comforted me until I was ready to rest a while alone.  It was the nicest most personal thing an essential stranger had ever done for me.

Yesterday my sister came to visit me.  She brought me a ballon and a book of magnetic board games and DVDs to watch on my laptop.  And most importantly her company.  Later that evening her best friend (the 3 of us hang out quite frequently) was nearby with her parents, so they dropped her off to visit me and my sister.  My night nurse was extremely cool and let them stay as long as I wanted as long as we weren't loud and bothering any other patients.  So we talked and laughed and they told stories from their just finished year of college until midnight.  It almost felt like normal.  Like we were just hanging out in my bedroom instead of my hospital room. (My sister drove her friend home on her way home.)

There's tons more I could write but my dinner is waiting...  I have no appetite but I'll try to eat a few bites of everything and save room for the chocolate cake :D

I feel better having typed that out.  Even the abbreviated version.

*sigh of relief and lots of hugs*

-Lauren

EDIT:  Before you ask... I have made an official report to hospital administration and someone is coming to my room to talk about it with me later.  I'm considering if I want to press charges.

kimbo

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Re: Surgery Update... (or look who's right back on morphine)
« Reply #65 on: May 18, 2008, 10:13:28 PM »
Hey Word,

I'm keeping up with your Chronicles. But I am reluctant to admit that I'm still puzzled with the   Bladder Stimulator/Pee monitor/Pee pacemaker  and where all this problem began, as I am still not educated with the bladder problems in relation to SJS. Is it pancreas complications?
Don't answer this unless you feel like it.

In my minds eye I am holding your hand.   In my deepest prayers for you-  may you feel Gods arms around you.  kimbo
Diagnosed March of 2007. SJS/ RA Positive at 80  International-SSA strongly positive at 811-SSB 273
ANA positive at 1:1280
Hashimoto's
Gabapentin, propanol, Celebrex, Synthroid, Cytomel, vitamin D, B complex, Omega 3 complex, and multi vitamins; At 62, I seem to be a low maintenance sjog

wordnerd

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Re: Surgery Update... (or look who's right back on morphine)
« Reply #66 on: May 19, 2008, 12:19:25 AM »
Kimbo - When I read the first part of your post I had to laugh at how side tracked I've become from the original issue. Oh dear.  Thanks so much for your continued support!  It's been hard having my parents out of town with all of this going on, but I keep coming back and reading everyone's replies when things seem to be going all wrong and I'm feeling very upset and I instantly start feeling all warm and fuzzy and loved!

Ok here's my theory on the matter of "so what does the bladder stimulator have to do with all of this anyway?"

I've been taking a long hard look at my level of functioning since I was last hospitalized back in Oct/Nov for 6 weeks.  It's been a pretty lengthy time to allow for recovery and yet even before this surgery happened I was still only able to walk short distances with the help of my rollater (its a 4 wheel walker basically).  I'm way way stronger than I was but my progress in recovering my ability to walk plateaued a long time ago.  I've asked my doctors about this a lot of times over the last several months and they all said I was still extremely reconditioned.  I wanted to believe this but I never really did but I really wanted to so I didn't consciously allow myself to analyze it until the aftermath of the surgery forced me to.

Looking back I see that when I'd walk around my room without the rollater I couldn't pick my feet up off the floor and take actual steps.  I just shuffled.  So basically I've been having leg movement problems for a pretty long time now.  The trauma or stress of the surgery just made it way way worse, but basically I'm having the most difficulty with the same two things required to take steps and walk... the ability to raise my leg up from the hip and extend my lower leg up when its bent at the knee.  Now its so pronounced I can't even do it in bed when my legs aren't baring weight.  I can still do other movements pretty normally.  For instance, my strength is almost normal is I lock my knee and ankle and rotate the whole leg pointing my toes apart and together.

So what does this mean is the actual cause?  I don't know but I'm pretty sure it wasn't caused by the surgery.... just made worse.  It's not that unlikely that my peeing problems and leg problems have a common underlying cause.  Through my abnormally high spinal fluid pressure and I still don't know what it means, but... it must mean something.

I'm hoping that this seemingly devastating and unexpected result of a simple procedure will really be a blessing in disguise.  If there is an underlying problem that was there all this time but really mildly who knows how long it would have continued to be written off as deconditioning and fatigue.  I'm hoping that this ill-fated bladder stimulator surgery will result in me getting diagnosed and then treated for what ever it is way sooner by making it become so apparent it had to be looked at more closely.

So that's my theory.  My neurologist thinks that it makes sense and that I could be right.  Hopefully the tests will tell soon.

Some other medically noteworthy things going on... My last urinalysis was fine, but my pee keeps alternating between green and yellow.  I woke up with horrible chest pain in the wee hours this morning and then spiked a fever this afternoon.  So I got to get a bunch more blood drawn (and she forgot to do one tube out of 10 or so and then had to stick me again!)  My arms are polka-dotted with bruises of all the blood draws and the 5 IVs so far (since they hardly ever last 24 hours and the bruises from failed IV attempts) and when spiked the fever my doctor finally agreed to put in a pic line tomorrow morning and ordered a EKG and chest x-ray to check for pneumonia.  That was early this afternoon but I haven't had the xray yet.

Today my clinical partner (nurse assistant) came in with latex gloves on and had to point and say "you have latex on.... latex gloves... latex LATEX" over and over for 30 seconds before the meaning of my words penetrated.  At that point I couldn't handle the anxiety of the latex anymore.  I haven't been able to relax enough to take a nap since I've been here because I'm afraid that someone will come in and get too near me with latex because I'm not awake to scream LATEX at them until they leave and I'll wake up to the sensation of my airway closing with anaphylaxis.

So I called the charge nurse and pointed out that I've been accidentally exposed to latex in this hospital alone 3 times in the past... all of which trigger anaphylaxis and both of the times it happened in my room it was because someone who knew I had the allergy accidentally grabbed the wrong gloves from the vast collection of latex offerings scattered around the pod leading to my room.  And I can't even count the near accidents that were only prevented because either I or a family member fended off the seemingly endless stream of people trying to kill me via latex glove or thermometer or whatever.

I told her how unsafe I feel in the hospital as a result.  I told her how previous attempts to keep latex out of the whole pod of rooms and how they were thwarted because some staff refused to use non latex on all the patients in my pod of rooms (oh no we might prevent others from developing a latex allergy too... that would be horrible!!!!) and even when we cleared the whole pod of boxes of latex gloves they just were restocked full of latex gloves the next day by maintenance.

Apparently I picked the right day and the right charge nurse to put my foot down with.  I asked that at the very least could she make sure that all of the floor staff know they can't even enter my room with latex even if they aren't going to touch me and just need to get something and then accidentally knock over my walker and then stoop down to pick it up with their latex cover hands of death before I can stop them.  Well she took on the challege and took all the current stock of latex gloves out of the cabinets, then she called the division in charge of stocking and ordered up tons of nitrile gloves (latex-free) in every size and told them to only stock those type in my pod from now until I leave.  Then she put huge signs all over all the doors in the pod stating not to stock latex gloves in there.  Then she put signs all over the whole pod area that said that no latex could even enter that pod which leads to all of the rooms nearby (mine included obviously).  Then she passed on orders to the next charge nurse to inform all the staff at the shift changes and to keep my pod of rooms completely latex free!

We'll see how it goes... but maybe tomorrow I'll even try to take a nap tomorrow (but I might have to put up bells that ring when the door opens like in stores to alert me... or rig a bucket to fall when the door opens dropping little papers that say latex free all over the head of the person entering).  When I get better I think I'll start a special interest group to petition the FDA to ban the use of latex in all medical products and settings.  After my pod went latex-free today, one of the nurses said to me "You're going to put latex out of business."  I replied, "Latex has no business being in a hospital."

I don't know if my comebacks are snappier on morphine or if it just seems that way.  ;D

-Lauren

Jag

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Re: Surgery Update... (or look who's right back on morphine)
« Reply #67 on: May 19, 2008, 10:42:38 PM »
Lauren,
I doubt I could keep up with you with all you're going through! Just keep on with advocating for yourself to keep yourself safe. I had noticed that hospitals aren't very sensitive to individuals needs... including the last time I was there. I don't know if it's staffing levels, or if it's just lack of consideration. Keep on moving, girl, you make me proud!!

You have been through so much, but you just keep on going. It will all be OK in the end. You are very much thought about and cared for. I wish you the best.

Jag

JannaLee

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Re: Surgery Update... (or look who's right back on morphine)
« Reply #68 on: May 20, 2008, 05:45:53 PM »
Hey punkin,

We are all here reading your terrible (but sadly all too common) hospital saga and worrying over you and loving you and wishing to be there to handle a couple things with a trusty baseball bat!

That is the only problem with our "virtual" friendships!  We cannot hop in the car (with a trusty baseball bat) and come to your rescue!

Please keep writing all this out to us again and again if you need to.  We offer to you affirmation and validation and maaaaany shoulders to cry on.

Janna Lee

P.S. Your comebacks are always snappy!  But especially so when on Morphine!
« Last Edit: May 20, 2008, 05:48:05 PM by JannaLee »

mompain

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Re: Surgery Update... (or look who's right back on morphine)
« Reply #69 on: May 20, 2008, 09:27:43 PM »
I think of you often and all the things you are going through.  I pray that things will get better and that they will figure out what tis causing the problem and know how to fix it.  

Your hospital stories sound like something in a make-believe novel, even though they are true.  I personally think you need to take your experience and contact a publisher about writing a book.  You definitely have a knack for it and I believe you could have a future as a writer with your wit and way of making even the most horrible of situations interesting to all who read them.

Take care of yourself and you will remain in my prayers.

wordnerd

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Re: Surgery Update... (or look who's right back on morphine)
« Reply #70 on: May 21, 2008, 10:48:55 PM »
Thanks Jag, Janna, mompain, and everyone else who still following along!

I'm feeling kinda blah right now.  I've been waiting around the last few days... for the test results to trickle back in and stuff.  My normal GP gets back into town tomorrow so I should be seeing him tomorrow or Friday.  It looks like I'm going to get a much coveted spot in Rehab Unit.  The doctor who runs that floor of the hospital came and saw me twice.  First to evaluate me and today to let me know that I'll be moving up there once my insurance approves it.

I'm hoping that getting into the Rehab Unit will really help.  It's still like being in a regular hospital room (all my docs can come see me, run tests, whatever) but you get at least 2.5 hours of physical/occupational therapy a day, so I can start getting my legs working even if we don't know what happened to begin with yet.

I'm just really bored and lonely.  My mom came yesterday for a few hours.  She didn't come today.  She's supposed to come tomorrow.  I've been at this hospital almost a week and she's only been here a few hours.  I guess the novelty of me being in the hospital has worn off between the first two long hospital stays.  I guess now on stay number three she's not planning on coming on a regular basis.  She said that she had errands to do today and that my sister wanted her to watch TV at home with her tonight.  I guess I kinda had thought that since I had said it was okay for her and my dad to go on their already planned vacation for five days over the weekend that when she got back she'd be here most of the time.

I was mostly looking forward to some sleep since someone else would be able to watch the door for latex attacks.  Oh well.

I guess after all these years I'm still setting my expectations for my family too high.  Oh well.

I'm just bad at waiting I guess.  Not a patient person.  I can learned just about anything.  I'm like a sponge.  But I can't learn to be more patient.  I wish we just knew what was wrong, so I could set my sights on some sort of treatment plan.  Or have some idea when I might be getting out of here.  I feel like I fell into a void where the minutes and hours and days blur together.  I stare at the date on my wipe off board all day long, but if I closed my eyes I couldn't tell you what it is.  It's a good thing my name is written on there too.

Like I said I'm feeling really blah.  It's amazing to me how supportive everyone on this site has been.  When I look at the view count, I just can't believe it.    I don't know how to say thank you enough to all of you who have been here for me even though we've never met in person.  It means so much... especially since I have such a lack of in person support.

If I'm going to feel crummy and lonely and alone, I just wish I could do it in my own room.  I'm sure I'll being feeling less blah tomorrow though.  And if not... oh well.

Katybarstool

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Re: Surgery Update... (or look who's right back on morphine)
« Reply #71 on: May 22, 2008, 12:15:44 AM »
Hi Lauren

I really feel for you. The rehab unit sounds a brilliant idea. Just be careful not to overdo things.

Being a mum and knowing what your daughter wants must be really difficult (I only have sons, and they are simpler creatures!). I was having some surgery two or three years ago, that only entailed one night in the hospital. My mum would have found it difficult to get there, so I told her I didn't need her to come to see me. This was also beause I knew I would be sleeping the effects of the anaesthetic off, and wouldn't be very sociable. She looked a bit upset, but carried on the conversation BUT, after I arrived home, she didn't come to see me at all in the two weeks I was recovering. I found this really hard, but realised she had taken my 'no visit' comment quite literally, and thought I didn't want to see her!

So, the moral of my story is to give more explanations. It may not be the same for your mum, but I just thought I would let you know how my mum felt.

It's a cold grey morning in Yorkshire today. We had 'summer' a couple of weeks ago, and it lasted a whole week. I just hope we will get some sunshine again soon. I think I am solar powered, and definitely need some.

Speak soon.

Kathyx

Patze

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Re: Surgery Update... (or look who's right back on morphine)
« Reply #72 on: May 22, 2008, 03:43:06 AM »
Whew, girl!  I've been keeping up with it all and I so feel bad for you...have you been able to see a patient advocate by any chance (forgive me if you have, my short term memory is really bad these last few weeks)?

Have any of your tests come back yet?

I'll keep you in my thoughts, and hey, hang in there, okay? 

Take care and hopefully the rehab section will be tons more friendly for you...

Patze
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Tamik

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Re: Surgery Update... (or look who's right back on morphine)
« Reply #73 on: May 22, 2008, 08:22:25 AM »
Lauren,
Have you talked to your mom and told her how much you need her?  I have learned that if I speak my heart, then usually it works out well. If I don't, then I am dissapointed.  Maybe your mom is scared too.  Maybe she is having a hard time seeing you in pain and suffering.  Talk to her.   She needs to hear that you need her and want her there.  The worse that can happen is that she says no - and you are still where you are.   Life is too short not to speak your heart. :)  You amaze me.  I am in awe of your strength.   The PT will really help make you feel more alive. 
Tami K

Shari

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Re: Surgery Update... (or look who's right back on morphine)
« Reply #74 on: May 22, 2008, 04:28:02 PM »
Lauren~~I have not been able to be on a lot lately and have not read this post in it's entirety but I will as soon as possible.  I get the gist by peeking here and there and wanted to let you know that i am thinking of you.

If i were there I would bring you a beautiful pink rose to brighten your day~~Love  Shari