Author Topic: Surgery Update... (or look who's right back on morphine)  (Read 34093 times)

wordnerd

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Re: Surgery Update... (or look who's right back on morphine)
« Reply #30 on: May 13, 2008, 09:53:08 PM »
Thanks Stephanie!  But believe me... I do have my pity party moments.  We all do... and we're allowed and so are you.  Also everyone's pain/bad experiences/or whatever are relative and equally valid.  It's said that no matter how good at something you are, there's always going to be someone better than you.  Well it works the other way too.

Sometimes I just need to have a good cry and a bit of a pity party to get it out of my system.  I just try not to let them dominate my life.  I also strongly believe that who I am is a product of my life experiences both good and bad, and I rather like who I am so even though life can really be hard sometimes I wouldn't really change anything because that would change me too.  Ya know?

Take care!

-Lauren

salsen

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Re: Surgery Update... (or look who's right back on morphine)
« Reply #31 on: May 13, 2008, 10:54:15 PM »
Lauren I am keeping you in my prayers.  I hope things resolve well for you and you are able to keep the stimulator in place.  My sister had this surgery done a year ago and is doing very well with the stimulator.  Like you, without it she would have to use self cath technique.  Please keep us updated on how you are doing.  Good luck.

lynnmarie219

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Re: Surgery Update... (or look who's right back on morphine)
« Reply #32 on: May 14, 2008, 04:30:36 PM »
(((((((((((((((lauren))))))))))


Keeping you in my thoughts and prayers!


Hang in there...we are all here for you if you need us! Please remember that!

stegello08

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Re: Surgery Update... (or look who's right back on morphine)
« Reply #33 on: May 14, 2008, 06:09:45 PM »
Lauren,

Very well spoken...I could not have said it better myself!

~Steph

Thanks Stephanie!  But believe me... I do have my pity party moments.  We all do... and we're allowed and so are you.  Also everyone's pain/bad experiences/or whatever are relative and equally valid.  It's said that no matter how good at something you are, there's always going to be someone better than you.  Well it works the other way too.

Sometimes I just need to have a good cry and a bit of a pity party to get it out of my system.  I just try not to let them dominate my life.  I also strongly believe that who I am is a product of my life experiences both good and bad, and I rather like who I am so even though life can really be hard sometimes I wouldn't really change anything because that would change me too.  Ya know?

Take care!

-Lauren

Tamik

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Re: Surgery Update... (or look who's right back on morphine)
« Reply #34 on: May 14, 2008, 08:39:14 PM »
Pity parties are best with a bowl of icecream...  and they are very therapeutic sometimes! :)  Knowing when to end the party is the tough part! :)  Tami K

eyeamdry

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Re: Surgery Update... (or look who's right back on morphine)
« Reply #35 on: May 14, 2008, 08:47:54 PM »
Lauren, I just read through this whole thread now.  What a time you've been having.  You don't have a chance to get bored, do you? ;D  You are doing an amazing job of handling everything.  Humor is the best and greatest thing we have in dealing with our ills.   I'm sorry you are in such a pickle and hope things get better soon.  Lucy

wordnerd

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Re: Surgery Update... (or look who's right back on morphine)
« Reply #36 on: May 14, 2008, 10:17:50 PM »
Ack!  I'm stuck in a bureaucratic nightmare caused by the hospital's ridiculous policies.  

Today my right leg started having the same symptoms as my left.  So far its not as severe but I can't lift it off the bed anywhere close to how I could last night.  I also haven't been able to eat or drink enough because my AI pancreatitis is all aggravated.  However, my urologist discontinued my IV fluids between antibiotics this morning which they did while I was still asleep.  They didn't flush my IV before locking it though so by the time I woke up blood had clotted in the whole thing and I had to get a new one.  However my veins have so much scar tissue from past IVs that it took 4 tries to get another one in.  About 30 minutes later I find out that the doctor has stopped my IV antibiotics also and I don't need another IV.  The problem is he didn't put me back on my low dose prophylactic antibiotic either which is the only thing preventing me from getting chronic kidney infections again.. especially since I have a catheter in.

Also I started having episodes of tachycardia with severe cold sweating over my entire body around noon.  And I've been dizzy.  And I haven't had a BM since last Friday.  But I haven't been able to discuss any of this with any doctor because no one ever shows up to discuss anything with me.  They just write orders for the nurses to carry out without consulting me or considering my other medical issues.

Basically I'm supposed to transfer from here (hospital 1) to the hospital all my other doctors are at (hospital 2).  However, hospital 2 doesn't have a bed available for me yet, so I was planning to stay at hospital 1 until they have room for me at 2.  However, I was admitted at 1 by the urology team, but now my primary issues are not urological, so the urology team has no justification to keep me in the hospital for bladder issues.  So they can't bill my insurance for the cost of me staying here under the care of the urology team.

So I asked if they could transfer my case to the control of the neurology team here at hospital 1 in the meantime.  Apparently though the neuro team here doesn't want to do any tests except an EMG which they can't do until 2 weeks after the surgery for some reason.  And so the neuro team doesn't have to take my case on if they don't want to.  They can basically refuse, discharge me, and tell me to come back in 10 days for an outpatient EMG.  I asked if the uro team would have the neuro team come back and talk to me again to discuss them taking over and running some other tests here until I can transfer to hospital 2 and have my regular neurologist pick up from there.

The neurologist did a physical examination again just now.  My quads will be contracting as hard as I can make them and my leg won't lift off the bed.  She concluded that I have muscle weakness and just need out patient PT.  I asked how my leg can go from completely able to move around to completely de-conditioned to the point I can't lift it off the mattress in less than 12 hours.  She said she didn't know, but I'm not paralyzed so I just need out patient PT.  I said obviously I'm not paralyzed but I have a bunch of AI conditions could that be causing it.  She said no.  So if you don't know how my muscle can spontaneously stop working how do you know nothing is wrong?  She said she doesn't know what is causing it but I just need PT.  I asked if she thought it was all in my head because I feel like I'm going crazy here, so if that's the case send me up to the psych ward.  She said no, you just have muscle weakness and need outpatient PT.  So I asked why they hadn't done anything beyond a physical exam and a CT of my hips.  She said ok fine I'll suggest you have a CT of your whole spine tomorrow and then I'll have a social worker come and help you get set up for outpatient PT.  I asked what if the CT shows something?  She said well then we'll talk about it tomorrow.  And left.  So that option is out.

The next option is to stay in the hospital anyway at the cost of $7,000 a day out of pocket.

The last option is to get discharged (with my catheter still in btw) and go directly to hospital 2's ER and get admitted that way.

In the meantime, my mom left for the day and both my parents are supposed to be going out of town for a prescheduled trip early tomorrow morning.  So I'm kinda freaking out about this.

There is one thing I do know... muscles don't suddenly become de-conditioned to the point you can't move them overnight.  So either something else is wrong or its all in my head.  Either way I don't see how PT alone will help either thing.

I'm just so frustrated I want to cry.  I can't seem to get anywhere here with this and I don't see how I can go home with both my legs not working.

My uncle who's a doctor at hospital 2 is going to call the Attending Neurologist and make sure someone competent sees me because he said what the resident who came to see me was useless.

Then on top of that they lost my dinner order and my nurse called and called about it for three hours.  Finally they brought up a tray of the only thing they had left because they were closed.  It was a chicken dish I already knew I couldn't have because it has yellow dye in it and a salad which I also can't eat.  So I had 3 red jellos for dinner.

I'm just ready to scream.  I'm in worse condition than when I got here and they are about to kick me out at 11am tomorrow unless I pay $7,000 a day to stay.  My mom is making a complaint to the administration as we speak.  I just feel so helpless to do anything to get proper care here.  There is no communication going on and the neurology department clearly need their heads checked.

I mean I know my leg problem is really weird but this is supposed to be ranked #2 hospital in the nation... it has a big ad announcing it to the world on every elevator door.  I don't know how they can say I have sudden onset de-conditioning without doing a EEG or an CT of my head or my spine.  And my doctors and hospital 2 had even mentioned a possibly testing my spinal fluid.

Also my mom was horrible on the phone when I called to tell her what was going on.  She wanted me to find a phone number of a person that doesn't exist.  When I tried to clarify who she meant she freaked out at me and demanded that I ask the nurse to call her because I was apparently being "difficult and asking too many questions" and she would get the number herself or she won't help me at all.  I need and long cry!!!!!!!!!!!!

 *primal scream*

Thanks everyone for their ongoing support!  I don't know what I would do without you all!
-Lauren

Katybarstool

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Re: Surgery Update... (or look who's right back on morphine)
« Reply #37 on: May 15, 2008, 12:03:46 AM »
Lauren

I'm absolutely appalled at the way you are being treated. Our NHS service can be difficult to get treatment from, but no way would someone be treated the way you are.

It seems so inadequate, but I just want to say, hang in there. My heart goes out to you. I wish I could come and advocate for you.

Kathyx 

Jag

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Re: Surgery Update... (or look who's right back on morphine)
« Reply #38 on: May 15, 2008, 03:49:34 AM »
Lauren,

As both a nurse and a case manager that has worked for the insurance and also on the hospital side of things... they CANNOT make you leave. Especially in your condition, to discharge home. It is called an UNSAFE discharge, and no one likes to say what rights you have. Not sure what your insurance is, but if you are not walking, they CANNOT force you to go home. You can just park it right there until you can be transfered. Do NOT LET THEM TELL YOU THAT YOU HAVE TO GO OR YOU WILL BE BILLED. This is simply not true. The insurance company is in communication with the hospital to get updates on your status, etc if it's a private company. If it's medicaid, you can be there forever.

I am TIRED of facilities not telling patients what your rights are!! If you are still being told you have to go, then ask to speak to a patient advocate. Every facility has one. Tell them you're not leaving, you're transfering, and that you can't go home alone in this condition (which is now WORSE  not better) and see if they can reach the insurance case manager to call you and discuss this. Please keep us informed. I wish you the best... I just wanted you to know what your rights really are, and that the docs and nurses may say things that aren't true. You have a right to care, and your insurance isn't going to stop payment because you are worse, not better.

Good luck,
Jag

Patze

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Re: Surgery Update... (or look who's right back on morphine)
« Reply #39 on: May 15, 2008, 03:58:26 AM »
Hi Lauren,

Jag's right, go to the internet and check out the hospital's patient advocate rights (that a lot of hospitals put out there - I guess to make them look better) and fight them on this.  This is wrong on so many levels!!!  Oh, and please ask for the patient advocate as soon as absolutely possible!!!!!

Please keep us updated, okay?

Take care now -

Patze


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Linda196

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Re: Surgery Update... (or look who's right back on morphine)
« Reply #40 on: May 15, 2008, 04:13:39 AM »
{{{{{Lauren}}}}} Biggest hugz I can find on the way!

Lauren, has anyone mentioned the (remote) possibility of transverse myelitis? Especially now that your other leg is becoming involved, I think it might be worth asking about.

I think that once again, you may be the victim of a reverse age discrimination...you're simply too young to have all these problems, so your doctors sort of block them out!

I hope the scream helped (it always helps me) and a good cry is probably long over do. "Strangeling" a pillow (that you have named after a particular antagonist) is also very therapeutic!
Please check out our home page at http://www.sjogrensworld.org/index.html {{INCLUDES A LINK TO AMAZON SHOPPING!!}}
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Mark54

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Re: Surgery Update... (or look who's right back on morphine)
« Reply #41 on: May 15, 2008, 07:47:53 AM »
Lauren,
     Linda makes a great point, have they checked for Transverse Myelitis? My wife has this and it was caused by Sjogren's. It does happen in rare cases. Chele will be numb from her chest to her toes on her right side probally for the rest of her life. Please have it looked into. The earlier DX'ed the better.

Here is a web page that will explain TM: www.ninds.nih.gov/disorders/transversemyelitis/detail_transversemyelitis.htm

God's blessings,

Mark....

genko_b

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Re: Surgery Update... (or look who's right back on morphine)
« Reply #42 on: May 15, 2008, 07:54:41 AM »
Lauren, this is just crazy, the whole business. It is inconceivable to me that you are going through this. If I were a hospital administrator, and a patient had lost use of not just one but two legs in conjunction with a procedure that my staff had performed, I would be doing everything possible to find out what happened and fix it.

Reading through all of this, it sounds as though your uncle is your best advocate in the vicinity. Has he been able to connect with neurology yet? Can he talk to the patient advocate? I'm noting that your deadline of 11 am today is fast approaching. Is there anything any of us can do to help?

Genko

wordnerd

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Re: Surgery Update... (or look who's right back on morphine)
« Reply #43 on: May 15, 2008, 12:38:56 PM »
Ok... well things seem to be back on track after the emotional train wreak yesterday.  My uncle got the resident on the phone and basically told her that he will not allow me to be released until I have a diagnosis of what is causing my muscle weakness.  He also chewed her out for not knowing if I had a full CT of the spine yet or any other imaging tests.  He said he wants the head attending to see me and expects a prompt report from them.  He doesn't even work here!  But it worked like a charm. 

The head attending neurologist showed up this morning with the horrible resident in tow.  She was very nice and did a very through physical exam and then said that it seems like I'm having a problem with my proximal muscles or motor neurons or both.  She wants to do an EMG as soon as possible, but it might not show anything yet, so I'd have to get it done again in a week in that case.  She also wants to get a CT of my bones and connective tissues in my pelvic area because I have so much tenderness there she said I might have an autoimmune related issues with the connective tissue which would affect my leg muscles.  She mentioned amyotrophy as a possibility, but needs to do more tests first.

She also wants to talk to the uro people about the placement of the electrode because it made my big toe twitch on one setting which might suggest it's not in the right place since that nerve isn't anywhere near where the electrode is supposed to be.

On top of that my parents called up a bunch of people in administration and complained.  They assured them that I wouldn't be discharged like this and that they would make sure that I'm taken care of until I'm transfered.

Also a bed might be opening up to at hospital 2 later on today.

So everything is under control now.  A lot of unnessesary stress was placed on me though, but the attending neuro and a social worker and the charge nurse all said that I should have never been told that and placed in that position.

By the way I have a primary private PPO insurance and Medi-Cal as my secondary.  Thanks everyone for your support and good advice!  Its hard enough trying to keep track of my health issues when I'm in the hospital, but adding this mess is just ridiculous!  Thankfully it seems to be resolved now for the time being.

-Lauren

Katybarstool

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Re: Surgery Update... (or look who's right back on morphine)
« Reply #44 on: May 15, 2008, 12:44:47 PM »
Lauren

That is wonderful news. Someone listened to our prayers.

Kathyx