Author Topic: Hospital AGAIN and other updates....  (Read 21296 times)

pudmott

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Re: Hospital AGAIN and other updates....
« Reply #45 on: September 01, 2008, 04:11:47 AM »
Hey Lauren,
Glad to hear to hear you got a better room. Its amazing what a decent environment cant do for ones spirit. I got my pred put up today too not as much as yours but im on 37.5mg now. Also got myself a three month journey on clindamycin.
Lets hope your pred gets you well enough to be home. You're right right when you say you're not too old for the big pain. I think Irish's idea of the patient advocate is a good one. This doc is obviously not using his clinical judegement and is severely neglecting his duty of care. I dont know about you guys but we have a group of people who only deal with people who have chronic pain and help them find the best best way to manage that. Who knows what will be around in years to come. The reality is that you have big pain now and it needs to be controlled or at the very least managed to a bareable level. There are things out there that can be done for you and your PCP needs to pull his head out of his pompous a** and do something. Anxiety doesn't always cause the pain. It quite often goes the other way andd when the pain goes so does the anxiety and hello..........one regains the abilty to be able to further assist their journey to get well.

I hope the new week finds some answers for you honey. Will keep my fingers crossed that you get home.
Pud ;D

Seeker

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Re: Hospital AGAIN and other updates....
« Reply #46 on: September 01, 2008, 12:02:46 PM »
G,day Lauren, I hope your new digs get the old creative blood stirred up.  You must get a lot story lines by watching the daily drama of hospital life.  Some people in your situation would sink into the (why me) trap.  It's great to see you reach out to other people in the forum.  Keep the smile on your face and be full of happiness and grace.


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irish

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Re: Hospital AGAIN and other updates....
« Reply #47 on: September 01, 2008, 09:28:47 PM »
Pud, You are doing 3 months of clindamycin did you say!!! Wow, I bet you will be doing the yogurt and probiotics big time. I have taken that one a lot over the years. I did come up with a positive c.diff stool one time. I told the doc that I had this infection but she didn't believe me. Did the test and there it was. I was not having the diarrhea but had horrible smelling stools(sorry folks). Turns out that it was an infection but didn't have the bad toxic reaction that causes all the big time trouble. Good luck to you. Irish ;D

pudmott

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Re: Hospital AGAIN and other updates....
« Reply #48 on: September 02, 2008, 03:02:40 AM »
Yes Irish three months of Clindamycin,
Thanks for the bad smell story. I already got that without antibiotics to queer the works. Im already on diflucan and yes am getting the yoghurt and probiotics in, however i wont hijack LAurens thread with my stuff read more in my Down again thread.

Hey Lauren how ya doin honey?

Pud

Katybarstool

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Re: Hospital AGAIN and other updates....
« Reply #49 on: September 02, 2008, 12:21:54 PM »
Just a thought, Pud, could the Clindamycin be heating you up?

Kathyx

wordnerd

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Re: Hospital AGAIN and other updates....
« Reply #50 on: September 04, 2008, 11:48:02 AM »
Things have NOT being going well since I wrote last!  I've been subject to one mistake after another!  Tuesday night the Clinical Partner who came in to do my evening vitals touched me ALL over with latex gloves before I noticed.  On my arm, face in my mouth to put in the thermometer!  And then when I realized and started panicking and trying to have her get me help quickly she just laughed at me like I was making a big deal for no reason and left me in my room by myself.  Then my nurse at the time came in and told me that she was busy giving report for the next shift and that she was busy with other patients and I needed to be patient and wait.  This is as I was starting to swell up and wheeze.  I was loosing my voice and coughing and had strider.  Not to mention I was having a panic attack and flashbacks to last October when I ended up in the ICU and just barely escaped intubation from being exposed to Latex!  So then my NURSE also left me alone in there and I got on the phone w/ my mom and my dad (who was out with my uncle the doctor) and they started calling and finally Rapid Response was called after 45 minutes!  But that time I was gasping for air, my blood pressure had dropped, and it's frightening to think what would have happened if I hadn't just started on 80mg of prednisone two days before that since waited 45 min to call rapid response to give me epinephrine, breathing treatments, and benadryl!  Worse yet what would have happened if I didn't realize I'd been exposed and/or had anaphalaxsis too quickly to demand the help I needed!

Then yesterday my nurse brought me a pain pill that had yellow dye in it.  I also get anaphalaxsis to yellow dye!  I also caught that in time but she yelled at me and acted like I had no right to be upset and anxious that she'd almost given me something I was allergic to!  And a mere half hour later it was time for my sustained released morphine pill and it was also a different color than normal and she told me that the pharacy didn't know if yellow dye was in it.  So I got online to try and look it up to find out and that's when I noticed the reason teh pill was the wrong color was because it was the wrong dose!!!  She was about to give me twice the dose of morphine as I was precribed and when I pointed this out to her she just made excuses and basically got mad at me for it!

The only good thing is my pain managment doc finally put me on a morphine pump because my pancreatitis pain has been sooooo out of control.  So I'm having so releif from taht at least.  However I continue to have O2 saturation problems.  Yestderday my O2 saturtaion was down in the low 80s for most of the day even WITH 3 liters of oxygen on!  And the same at night even though I had 3 liters of oxygen and CPAP on!  My docs are still trying to figure that one out but still are thinking its autonomic.... sigh

I also can barely eat still.  I keep throwing up tons of green bile a few times a day.  And all that I can eat that I do keep down in Boost drinks and water.

I still haven't seen the new rheumy.  I still have no idea when I'm going home.  I'm afraid to sleep here because I can't stop worrying about dying from being touched by latex.  Its now been over 3 weeks and nothing is really happening to get me better and out of here.  I'm SOOO frusterated I just want to cry and cry!  I basically feel like I'm being left here to rot.   :'(

There's so much more I could right at the moment but I just don't have the energy.    I wish I could be writing a nice happy post about how much better I am and stuff.... but things are just not going well at all.  Hopefully I'll still be seeing the new rheumy before the weekend or I'll be heading into week 4 with no real progressed being made lately!

Sending hugs and love to all of you!

-Lauren

pudmott

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Re: Hospital AGAIN and other updates....
« Reply #51 on: September 04, 2008, 04:25:31 PM »
OMG Lauren
What the heck are they doing to you over there? I am so glad you are on the ball. Even though it doesn't seem like it you must have a little guardian angel watching to make sure things dont get drastic. I am so sorry that things arent going well. I am glad tho that they have you on a pump and you are finaly getting some relief from the pain.
I Hope things start looking up for you and this rheumy dude gets his butt in to see you. I will keep my fingers crossed there are some answers coming your way and you get home where you can rest up and get well

sending hugs and warm wishes
Pud

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Re: Hospital AGAIN and other updates....
« Reply #52 on: September 05, 2008, 05:37:00 AM »
Lauren I am shocked and out raged about what was happening with you.   I hope your mom and uncle have read the staff the riot act.  First thing I would demand to see the head nurse and make sure all your allergies is put down on the chart.  Then make sure the nurses and doctors have read your chart before the medicate or touch you.  There is no excuse for what happend to you or their attitude.  It's a good thing we don't know what hospital your at or I think you would have a good number of us beating down their door and telling them to get their act together.  Hang in their kid we are all on your side.

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pudmott

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Re: Hospital AGAIN and other updates....
« Reply #53 on: September 05, 2008, 07:32:00 AM »
I'm with you seeker. at this point in time i'm kinda ashamed to be a nurse myself. That kind of attitude and behaviour is not only unprofessional but downright dangerous. i bet if it were their relative they wouldnt be so blazee.....you know off the cuff.


pud

JannaLee

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Re: Hospital AGAIN and other updates....
« Reply #54 on: September 05, 2008, 06:23:15 PM »
I agree with Pud and Seek!

This is material for an undercover "60 Minutes" tv special! 

Heck, this is material for a blooming lawsuit!

Hugs to you little girl!
Janna



kimbo

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Re: Hospital AGAIN and other updates....
« Reply #55 on: September 05, 2008, 07:18:10 PM »
 YEAH , to what they said !!!

Try to be strong and persistant.   Hugs and prayers to you , Word.     kimbo
Diagnosed March of 2007. SJS/ RA Positive at 80  International-SSA strongly positive at 811-SSB 273
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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

irish

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Re: Hospital AGAIN and other updates....
« Reply #56 on: September 05, 2008, 10:02:57 PM »
Lauren, Darn it---things just keep on happening don't they. Sounds like it is time for the Patient advocate. It is not right that you are getting the brunt of the staff's ugly disposition when it is them who are causing the problems. I can't imagine what the heck they are doing. Don't they read their orders, care plan, med book!!!!! Like pud I am ashamed to admit I am a nurse when I hear of nurses behaving like that. It is totally unprofessional and dangerous.

Time to get a big flag and attach it to your door. It should read "latex allergy-yellow dye allergy" in big print. If things get wild again and you don't know who to call can you dial "911" and get some action????

Hopefully they will be able to get your 02 sats under control. I wish they would get you on IVIG as soon as possible to rein in the neuro symptoms that are occuring. Do you still have your gall bladder??? Sounds like your pancreatitis or liver etc are kicking up a storm of autoimmune issues also. What a terrible thing for you to go through. Why don't you have your mom bring you an alarm clock that you can keep in bed with you. That way you can nap and set the alarm to ring in 1-2 hours. This way you may feel like you aren't losing control over your environment etc and you will at least get some sleep. Just a thought. I keep my alarm clock close to me much of the time so I can take a little nap occasionally and not be late making supper etc. Hugs and prayers to you and for you. Irisih ;D

ProudAuntieNWash

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Re: Hospital AGAIN and other updates....
« Reply #57 on: September 06, 2008, 12:34:42 AM »
HI Lauren,

I'm so sorry that you are having such a hard time! I understand about the 02 thing. I am in the same boat with that one. Can't keep my 02 in the right amounts right now nor my heart rate.

One time years ago, I had a spat with my Dr (not the one I have now) because he didn't do the meds right. And I knew it.

Keep standing up for yourself. SjW is all behind you!!!!!! And like someone said, if we knew the hospital we would all be there making sure you got the best care!!

My thoughts and prayers are with you, Laruen. And if you want a latex, dye and germ free hug ((( hug )))

Denise

wordnerd

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« Reply #58 on: September 06, 2008, 11:14:53 AM »
I wrote this first part last night before bed but fell asleep at the keys...  ::)
Going to try and keep this quick cause it's late and I'm exhausted....

My dad talked to my uncle yesterday (Thursday night now) about my PCP and how he treats me, but of course which my dad needing to be the "nice guy" all the time positioned the whole conversation like I'm the only one w/ the problem and who's upset.  When he called to tell me how I it went I was furious both at him and at myself for letting him get me so upset and make me out to be more of a "problem patient" than some of my doctors already think.

Then last night sometime.... maybe around 4am or so, I woke up completely confused and disoriented.  After a few minutes I realized where I was and that I had lost bladder and bowel control in my sleep.  I was also extremely sore everywhere.  So it looks like I had another seizure.  My neurologist agrees that it seems like the most likely explanation given all the neurological problems I've been having.

And now I'm picking up here this Saturday morning lol
So then my PCP comes in around 5pm yesterday (Friday evening) and dives into lecturing me and criticising me about EVERYTHING.  He told me that several of the rheumatologists he wanted to come see me won't for various reasons ranging from that they just left the practice of one of my old rheumys and feel it would be unprofessional of them to they spoke to this one awful rheumy I saw once who both my PCP and I think is a terrible doctor who thinks that all of my problems are psychosomatic so they don't want to see me.  And my PCP told me it was MY FAULT that he was having a hard time finding a rheumy to consult.  The only reason I'm not still seeing the rheumy I loved and who totally believes me and in all of my diagnosises (and happens to be the top rheumy in this part of country) is because he is bad about communicating and coordinating w/ my other doctors because he's so high profile and busy, so my PCP refused to work with him.

My PCP then went on to tell me that although he believes I do have Sjogren's and other medical problems that I also have MUNCHAUSEN SYNDRMOME because I have so many symptoms that have NO BASIS in reality!  I demanded to know which symptoms he was referring to.  And he basically refused to answer and then when pressed he said that I don't currently have Autoimmune Pancreatitis because my enzymes are not elevated anymore.  When I asked him why he knew better than the top Pancreatic specialist in the country who had diagnosed me and who totally feels that I have it and that after so many years of having it my enzymes wouldn't be elevated and that I have all the other hallmark signs of it (elevated IGG4 subtype, diffusely enlarged pancreas, constantly vomiting bile, unable to digest food, severe pain, and so on all of which improves on high doses of steroids) he told me that screamed at me that that was "BS".

He also told me that I'm not having an oxygen saturation problem even though its written down by my nurses and witnessed by other doctors.  In fact I had a repeat PFT on Thursday which strongly showed that I have decreased lung capacity that dramatically improves when retested after taking albuterol.  My pulmonary specialist was suprised to see how strikingly different my scores were before and after teh albuterol.  He was also supprised by how decreased my lung capacity is from last time I had a PFT done just 6-8 months ago.  My PCP also said that was BS and he didn't believe it.

He then went on to rant at me about how my insurance company was calling him wanting to know why I was still in the hospital.  (Yep today is day TWENTYFIVE!!!)  He told me that I had no reason to still need to be in the hospital and I "need to come to terms with that reality".  I was sooo sooo upset that he would say this when EVERYDAY I've been here I've been begging to know when I could go home and how much longer I had to stay and what has to happen before I can leave and ect!  And he STILL couldn't say when I would be well enough to go home be told me it was MY FAULT that he was having to deal with pressure from the insurance company!

By this time I was crying and crying hysterically (and I'm sure being on 80mg of prednisone (his doing) and having my periods wasn't helping).  I was begging and pleading for him to please leave and get out of my room but he wouldn't.  He said I had to hear this because it was the reality and I should be grateful to him for taking the time to tell me and be honest with me.  And that I was wrong to be upset and yelling at him (which I was at this point) because he didn't deserve to be treated with disrespect just because he was telling me the "truth" that I didn't like to hear.

Finally he left to yell at my nurses to get my a Xanax and while he was gone I called my mom and he told her over the phone (right in front of me) a bunch of the same garbage he told me.  And then he left for good.  My mom called my uncle and my uncle fired him.  

I'm ashamed to say that while he was screaming and ranting at me and accusing me of being a hypochondriac or a person with Munchausens I felt so trapped and out of control emotionally that I pulled out some of my hair and dug my nails into my arms hard enough that I have bruises all over them today.  I also had this little plastic tubing connector thingy on my side table that I used to scratch myself for a while until I finally got my Xanax and was able to calm down.  I haven't done anything like that to myself since I was a teenager.  And I feel like I really let myself down by caving into my compulsion to engage in self harm.

After my uncle fired my PCP he sent over a really nice hospitalist to come talk to me and who I think is probably going to take over managing my case at least until I get out of the hospital because my PCP isn't coming back.

EDIT: While I was typing this my uncle just came back in to let me know that he hasn't been able to find anyone to take over my case for the rest of this hospitalization between it being the weekend and the fact that so many doctors are already involved that I guess new ones don't want to have to deal with my case as complicated as it it.  The hospitalist who came to see me yesterday apparently "respectfully declined" my uncle's request to take over my case for the rest of my stay here.  My uncle said he didn't even know he was allowed to do that since he works for the hospital, but apparently is.  So unfortunately I'm stuck with my PCP until I get out of here and we can figure out something else.  It was a good talk with my uncle though.  And he said he was really sorry that all this was happening to me and that if he was allowed he would take over my case he would (against hospital policy though so he can't).  Which made me feel better at least.  He said he's going to try and get my meds and everything switched over to oral as much as possible and arrange for whatever else can't be (IV fluids if I still need it and oxygen and stuff like that) at home, so I can try and get the heck out of here.

Also I think its finally been arranged for the chief of Rheumatolgy here to come and see me on Monday.  So hopefully something useful will come of that....  

Today I think I still feel a little shell shocked over what happened last night.  This weird combination of anxiety, fear, guilt, sadness, and other things I haven't sorted out yet.

Besides that horrible incident, yesterday was actually a pretty ok day.  There's this volunteer who you might remember I mentioned from back when I was in the hospital in May who came and sat with me for two hours after my spinal tap when I was in such horrible pain from that.  Well she still volunteers here every Friday and she makes a point of coming by.  And yesterday she came and spent a few hours and we talked about our pets and I read her some of my poetry and it was just really nice.  I also had a volunteer who sings and play guitar come by as well as the Rabbis who I've gotten to know pretty well from being in this hospital so much over the last year.  We had a few really good talks about how I can try to cultivate a closer relationship with god in a way that fits with me.

Also today my mom is going to come visit for a large part of the day and is going to bring my dog to stay with my dad so he won't be home alone so long and the really nice volunteer got it okay'd for me to come down to the lobby while they make the puppy swap so I can see my dog for a little while and get in some much needed puppy therapy!  I'm really really looking forward to that!

The whole allergy thing continues to be a daily issue.  I have HUGE signs all over my door and in my room about my Latex and Yellow Dye allergies.  (The really funny and mostly sad/pathetic thing about the signs is that the ones the hospital put up themselves are merely black and white photocopies of the ones my dad made up last time I was here because the hospital didn't and still doesn't have a standard latex allergy sign.... so now I have more print outs of the colored versions up.  But I think it says a lot that the hospital isn't even serious enough about preventing latex allergy messups to have a standard easily recognizable sign for it).  The storage cupboards outside my room are not even supposed to be stocked with latex gloves but it happens all the time anyway because the patient rooms here are arranged into pods often the other patients have different nurses than me who for some strange reason REALLY put up a fight about just wearing non-latex gloves for everyone in my whole pod for my safety because most of the latex mistakes occur when people are rushed and going from room to room and grab the wrong gloves from next door or outside in my pod.  I don't think that is going to change or get better until the hospital gets serious about changing their policies on how to handle extreme allergies.

In the meantime I'm just having to be constantly vigilant as stressful as it is.  Just yesterday the Xanax I was brought after the thing with my doctor was the wrong brand of generic.... one that had yellow dye in it!  Fortunately I managed to see that they weren't white despite my eyes being all red and swollen and scrunched up from crying.  When I'm better enough I really feel like the latex thing is something that needs to be addressed on a national level with the FDA.  I really feel like they should just mandate the removal of all latex from medical settings.  Period.  But look out for me on 60 Minutes too!  ;)

Irish - I had my gall bladder out in 2005 when I was just 21 years old.  It was letting gall stones escape into my bile duct, full of 30+ stones that were still inside, infected, and completely damaged from chronic inflammation by the time I had to have emergency surgery to get it out.  I'm now convinced that my gall bladder was just another causality of my AI disease.  I developed the beginnings on AI Pancreatitis about 6 months later.  Which brings the organ roundup to gall bladder, liver, pancreas, whole GI tract, bladder, thyroid, nervous system/brain.  Oh yeah and my eyes and mouth!  My other organ involvement symptoms are so much more painful and noticeable I literally forget about the classic Sjogren's ones half the time!  :o  And that's a good idea about setting an alarm... might give that a try.

Pud, Seeker, Janna, Kimbo, and Denise and everyone reading along giving me your support.... You are all amazing and I consider all of you to be my guardian angels!  Knowing that I can always come here and vent and be understood and supported means more than you'll ever know!  And believe me... I've been more than temped to set you all loose on my hospital a few times :D

Despite how awful this latest hospital stay has been... this whole year.... or even the last 8 years or so have been... I know I'm going to be ok.  I have faith in myself and my ability to find a way to be okay with whatever life puts in front of me.  And though I never ever wanted to come by it this way... I am thankful for the perspective all of this has given me and for the wonderful people (like all of you) I never would have met otherwise.  Lately I've been saying a lot... "If my life is going to suck, I might was well enjoy it anyway."  Sjogren's has given me lots of "gifts", most of which I'd have rather returned unopened, but I am thankful that it has taught me that being angry or sad or cranky or bitter all the time about how crappy life is right now, doesn't make it suck any less.  It just makes me emotionally miserable but doesn't change anything.  Not that I don't have my bad moments cause I have PLENTY of them.  But I don't know.  I think I'm okay.

I'm not really sure where I'm going with this... and this has turned into quite the marathon post, so I'm going to stop here.

*sending lots of love and hugs*

-Lauren

Katybarstool

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Re: Hospital AGAIN and other updates....
« Reply #59 on: September 06, 2008, 11:32:44 AM »
Lauren, I don't know what to say that isn't going to sound inadequate, so I'll just say, I'm thinking about you and sendingpositive vibes.

God bless.

Kathyx