[Starznight]

Okay what's done is done, but would love to know what I might have been able to do for future reference... But last Friday I was admitted to the hospital to have my gall bladder removed, the attack came from no where, I hadn't had any problems or signs or symptoms until it was almost to the point of bursting.

Highly infected and littered with innumerable stones as the surgeon put it. Altogether it might not have been so bad, however, in the process of being admitted I ended up missing doses of my muscle relaxants and anti-convulsants, hadn't gotten those back on track when the surgery also screwed up my doses, and then they chose an antibiotic that was affected by my zanaflex so I couldn't take it at all during the 4 days I was in the hospital.

This has left me, I believe, far worse for wear. They had my blood pressure running all over the place with lows in the fifties and highs in the 200s within 30 minutes or so of each check. The welfrin (so?) shots they gave me to avoid clotting all bruised and started bleeding terribly, probably because of the continual spasms that at times were lifting me off the bed.

In short a truly miserable experience. I am home now and my meds are getting back on track but now my last good arm has had enough, and I'm racked with more pain through my right shoulder than through my bruised and bloodied stomach.

What can one do to express to the nurses and doctors just how important their medication regime is? I understand that many of the nurses are looking at it as "pain pills" but for me my body can't avoid injuring itself if there's nothing to stop the muscles. It's not that the pills "kill" my pain, I mean yes they help with the pain and a good deal, but it's not a coverup like opites, it's because they're stopping the source.

Is there anything I can do in the future to prevent such a thing? Has anyone else had similar problems? And how do you keep from being severely disgruntled when now I'll have to likely undergo an MRI of my right shoulder only to find something got torn during my 4 days of torture?

[SallyC]

Always have an advocate to speak for you. It keeps them on their toes.

[NurseNancy]

oh starz,

i'm sorry you went thru that. i'm an RN & still have had problems with my hospitalizations no matter how i think ahead and plan. but i can offer a few things to think about.

have a current list of your meds with the doses & times you take them.
you must impress upon your dr how important your regimen is to your well-being.

find a person to advocate for you. they must be strong & willing to be at the hospital as much as possible.

if there are problems you MUST speak up. yell if needed. ask for the charge nurse. the nursing supervisor, the dr. call the dr yourself from the hosp.
there are also people who are patient advocates in the hospital setting. ask to speak to one. you can even try to contact the chaplain as a go between.

try to have family or friends take shifts & stay with you as much as possible during a hospital stay.

with all my experiences being hospitalzed & being an RN i still have problems. with my last hospitalization i told myself that something unexpected will come up so don't expect things to go swimingly. and, they did. it was my big mouth & complaining that helped. and, don't be afraid to tell your dr if something isn't right. chances are he probably doesn't even know.

i hope you're healing and heading back on track.

[Kitty]

I had several surgeries from 2011 through 2013. A hysterectomy and then others due to issues from that.

The first surgery I had was, I guess, my "practice run" with the hospital staff. There was a nurse in my room what seemed like continuously for the first day. I'd mention I needed my Baclofen and they'd either tell me "it's coming" or ask me how to spell it or just tell me they'd pass it along to whoever these things get passed along to.

After the third missed dose I was literally climbing the walls. Literally. I knew my little pill bottle was sitting on the dresser at home but it might as well been locked up at the pharmacy.

I never got a Baclofen pill while I was in the hospital. I was only there for two days but I had to stop taking it a full 24 hours before my surgery so by the time I got another dose it was four days. I vowed never again.

Next surgery I packed my "contraband" well and made sure it was somewhere I could get to it. It would make the nurses mad but I didn't care. I knew they wouldn't take my requests seriously and I was right.

I checked with my neurologist and with the hospital anesthetician to make sure I could take baclofen with the meds I was given while in the hospital ad they all agreed that it was fine.

I will never again put myself at the mercy of the hospital staff to get my needed MS meds.

[Erika]

After having been in and out of the hospital over the last few months, I'm with Kitty about packing your own meds. and the good advice of having an advocate.

To that end, I now have an Advanced Directive that spells out in minute detail to my advocate and medical personnel what I will and won't allow, as well as how and when they can do it. It keeps things on track even when or if I can't speak or act for myself but also when I can, especially with respect to medications and treatments.

It isn't too difficult to write one up and there are several programs available on-line that make them legal documents according to state or province. I did my rough draft with the help of "legal docs" and then had my lawyer check it and do the final copy. Doing one ahead of time, when things are not an emergency situation, allows you to really think through many potential situations and make decisions for yourself so that you can relax more easily when/if you need care.

My GP, appointed advocate, family members and lawyer all have a copy; and I take 2 copies with me when I need to go to the hospital. One is given to admissions or the nurse's unit where I'm put and one stays with me in the room on the side table in clear sight.

During my last stay in hospital, some of the nurses said that it would make things a lot easier for them and their patients if more people had one. My GP also supported my having one.

In short, I have found that it helps everyone get along better and helps to ensure that you get the care that you need and want, while preventing getting what you don't.

With respect to the shoulder pain, it isn't uncommon to get that after abdominal surgery, especially if it was done via laparoscopy. A fair amount of air is pumped into the abdominal cavity during such procedures and it is the remaining air that puts puts pressure on the diaphragm. That pressure often refers pain to the shoulder, as does bowel gases which are also often present after such surgeries. If it is the latter, using an over the counter stomach remedy with simethicone in it (Gas-X, Phazyme), will often help to relieve it.

Hope that you feel better soon .

With love, Erika

[Starznight]

Thank you everyone, sad thing is I had my pills with me, had my cell phone with my schedule that I went over with the nurses as well, my family members were there for most of it, but we were all just kind of ignored. The worst was my final night in the hospital, I really thought they were out to kill me at that point, but I was also pretty much insane with pain by then.

I will definitely be drawing up some kind of document, and hopefully getting my neuro, primary and pain mgmt doctors to sign it to say "yes give this poor kid her DRUGS you crazy psychos!" But I guess a lot of it was my own fault, I didn't fight them hard enough, wasn't in much of a state to, but still I should have been more forceful. It's just I had foolishly thought my nurse and I going over everything the first hour I was admitted was going to take care of that.

But I also didn't mention above, I was in the ER for 6 hours before I even saw a doctor, and had, by the time the choose to give me something for pain, been in and out of consciousness, screaming bloody murder when conscious, for 7 hours all told, and started off Saturday morning already behind over an hour on my usual medications (that was when things started getting really hairy in the ER and the doctor really didn't have much of a choice but drug me or club me)

I mean we went to the ER at 2am and it was dead, spent an hour as the only ones in the waiting room, got a bed around 3am in the back, was sent for a chest x-Ray at 7 am (when I was supposed to take my pills) 9am is when the doctor finally got around to seeing me, 10 am I got an IV and pain meds, 11 am I finally got the ultrasound of the gall bladder and then boom admitted in less than 30 minutes to the hospital.

[NurseNancy]

don't kick yourself. i honestly don't know what is wrong with hospitals/staff today. when i was an RN there was such a thing as a nursing care plan for every pt.

i think now you only see the RN when she's passing meds and that's all they do. the rest of the time you're cared for by an aide.

the first day after my back surgery when i got moved out of ICU to the floor the first comment my aide said to me was "my name is.....i have 12 pts all by myself today. i'll do the best i can.

meantime i'm flat on my back with 2 incisions; one front, one back. i was actually afraid for myself. many more snafus from my rehab experience but i won't bore you.

just do the best you can. i also think it's a good idea to take meds to the hospital. but, make very very sure that IF you take your own you're not in conflict with what the staff is giving you.

[ali12]

Sorry to hear about your surgery.

I had my gallbladder removed in October so feel your pain. I'd been having attacks for almost 3 years, getting dismissed by doctors until a scan showed a large stone almost 3cm in diameter and little ones. At the point of removal, my gallbladder was infected. The surgeon said I was really lucky it was removed when it was.

Like you, I had an horrible experience with nurses not understanding. I have issues with my Blood Pressure where it can fluctuate from very low to very high in a matter of minutes. Any opiate based meds are a no go area as they make it worse (was told by my Cardiologist they can even lead to cardiac arrest). I explained this to the nurses, they documented it. Yet when I came out of the operating room, they informed me that they gave me Morphine, something which is an opiate and what I should never have. This led to me becoming really faint, blood pressure fluctuating severely etc. When my mum visited me she said it was the worse she'd ever seen me look (thanks mum ). Even despite my parents informing the doctors of what meds I can and can't have, they still took it upon themselves to try and give me more morphine. when explaining I cant have it, they said i'd have to 'suck it up' and deal with the surgery with only minor pain meds.

I'm sorry you had to go through this, I understand your frustration. I always print documentation of my illness to take to ER etc if I need to go. It just seems you have to drop lucky with a caring doctor, so many seem ignorant

I hope you recover from the surgery quickly, know how painful it is. I remember it taking me about 20 minutes just to sit out of bed because of the pain. Ha.

Hope 2015 is a better year for you

[Lumia_black]

Last August 30th I had a Kidney Stone attack that sent me straight to the E.R. I wear a band that says I have MS, but my mom is my advocate, so she is the one that took me in. She made sure I got my 'stuff' while I was in for a few days.

Yah that sucks... Gall bladder hurts I heard. So does Kidney stones...it's unreal pain.

[tkrik]

Starz - I'm so sorry to hear about your surgery as well as the treatment you received. I hope you start to mend soon.

I have to say, after reading these posts, I feel so fortunate that when I had my emergency surgery last December, I received excellent care. Not only did they stick to my medication list/schedule, the surgery put me in a flare and they said I could take my lorazepam every 6 hours to help with the spasms I was having and brought it in with any other meds I was taking just in case. I stuck with my once a day dose and only once did I ask for it at a time other than my regular time. (Side note: lorazepam works well for me. Valium and baclofen are both too strong.) My medications were written on a white board with the times I could take it (i.e. every 4 hours XX mg, last dose at whatever time my last dose was). In addition, they regularly checked to see if I needed more pain meds and were surprised when I would refuse them or asked for something light, like Tylenol 3, which worked fine for me being the light weight that I am. If I needed anything, more often then not it was the nurse who came in not an aide. I was in the hospital for almost the month of December and really was lucky with the care I received. The only times that I really have no clue what went on was the first few days after the surgery. It's my understanding I had one on one nursing because the ICU was full and they put me on one of the surgical floors that didn't have many, if any, patients. The nurse gave me meds via the IV. I have always had good luck at this hospital as they are very conscientious of patient's other medical issues, in my case, MS. They were very aware that between the severe infection and the surgery, I was at a greater risk of an MS flare and checked me regularly for neurological symptoms as well.

I am so sorry to hear that so many of you have had issues with the care you received while in the hospital(s). It saddens me that the health care industry has slacked off with their care. I can't say that it's all the nurses fault because it is not. Aides, techs, doctors, etc. all have a role to play in a patient's care. They all have standards of care to maintain and it's sad when a hospital doesn't ensure that their medical staff is upholding those standards of care.