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AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 10/2/2008 8:47 PM (GMT -7)   


This article was taken from a member on the Chron's forum and applies to all of us.

Blessings!

Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 10/2/2008 9:34 PM (GMT -7)   
Hey Rosie,
 
Good article for everyone to read.  When I go to the hospital for my hysterectomy in a month, I'll be taking my own meds with me all sorted in their little cubbies.  I'm not letting anyone give me anything unless I know for sure, it's the right med in the right dose.  I'll be double checking everything that is being stuck in me or told to swallow.  I've heard of way too many mistakes, malpractice and plain old ignorance.  We have to be aggressive and not afraid to say it like it is!!
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, Tramacet, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 10/2/2008 10:30 PM (GMT -7)   
Around here, the nurses in the ER come at you with a needle not telling you what's in it. They hate nothing more than someone with lupus in their ER. After all, we with chroinic illnesses should never have to go to the ER, since we have regular docs to go to. They come at me with benedryl and antiemetics and don't even tell me what they are giving me and why. I've complained and requested stuff fromthe state medical board and can't get a complaint form from the GA med board. Its really bad down here. They are not only ignorant but incompetent. And it's sad, but that hospital won the Best Small Hospital in GA. They nearly killed me. Didn't even ask my medical history and their computer system is so lame they can't pull it up from previous visits.

I'm scared to death to go to an ER around here. I need to get together with the lupus support group here and we need to protest. So many of us have been ill treated and pushed away. Around here, malpractice or doing nothing is the norm, not the exception. And because of small town politics, its impossible to do anything.

I haven't found fla to be any better. Mayo is okay, but some docs there aren't really on the ball. It depends on who you get. Luckily I'm medicare. They wouldn't even let me stay 24 hours after neck surgery, but then I was so happy to get out of that nightmare hospital. Be careful too because I got no post surgical pain meds for five hours because the junkie nurse injected them all. Spinal surgery with no pain meds was horrible. My mother just about freaked out really bad. Even after that, I had to watch them and the stuff was watered down. The nurse had tracks all over her hands. I complained to the floor nurse, but she didn't believe me and finally got me two percocets, which were stronger than the several morphine shots that I was supposedly given.

It's sad so many people need jobs and this is what we have in hospitals. And its impossible to litigate and make them responsible anymore. No wonder the good nurses left.
Love, Marji
--Sometimes I think the surest sign that intelligent life exists elsewhere in the universe is that none of it has tried to contact us. Bill Watterson (1958-) cartoonist "Calvin and Hobbes"
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy, GI nightmare
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Detrol, Klonopin, Ultram, Vicodin, Restasis, Albuterol, steroid injections and pred prn


Tá mé breá
Regular Member


Date Joined Aug 2008
Total Posts : 140
   Posted 10/3/2008 4:49 AM (GMT -7)   
sorry this is long --- My 19 yr old son suffers from status-epilipticus - his brain does not reset after seizures. this carries a 40% mortality rate and this goes up with each seizure in a set. he will just keep having seizures until they put him in a coma. then we wait and hope he comes out of the coma, and that he has no damage.

The last time my son was in the hospital, we told the nurses as soon as we got a room what he needed (according to his neurologist, and the ER neuro) I must tell you that these "demands" were life or death for him, but only consisted of an oxygen monitor and a face mask for oxygen. (he stops breathing before a seizure and if given oxygen as soon as his drops the seizure does not progress) after his seizures he is not really "on" and fights treatments. he acts like a very brain damaged child. he does not tolerate the little nose things for oxygen, but he does okay on the face mask.

over an hour went by after our request and we had to keep yelling at Ben to breath when ever he turned blue. all this time he had nothing but the IV they put in at the ER - nothing hooked up to it tho. I went out to ask the nurses when we could expect the monitor and mask. They came in and tried to put the little nose things on him. of course he went crazy over this and it took a very long time to settle him down. so I calmly told the nurse again, that he needed the monitor and a face mask. she left

about an hour later with the blueness and yelling still going on (and this was all going on in the middle of the night) I went back out to find out what was up (less calmly I assure you) The nurse and her 3 helpers came in to talk to us. They said if he needed "that kind of special treatment" he was in the wrong ward. -- I didn't put him there, but the ICU was full. so anyway they finally got a little portable monitor, but still no mask. I asked again for the mask. an hour later they came back saying - and I quote " we are not going to order an oxygen mask for him, he can use these (the little nose things). when I disagreed and aked why - again I quote "there is no really good reason for why, we just aren't going to" WHAT ?????????????

so after a few more seizures and a really long blue period - I walked down to the ER, grabbed the ER Neuro we saw, told him what was going on. he followed me back up and there was a screaming match, with the nurses telling the doctor that we came up there demanding "all sorts of special treatment" Ben had another seizure right in front of them all and turned blue again. within 10 minutes he was in the ICU with great nurses and wonderful care. he is doing great now, but there is some slight damage cognitively from the oxygen deprivation. he can no longer do math type things - very well - grrrrrrrrrrrr

oh I complained with names and went to the charge nurse and the head of the nursing dept, and the hospital's patient services advocate. then they sent me that little form for a survey - ohhhh I sent a typed report!

I am a very nice person, I think.... but when it comes to someone I love in a hospital, I can be a real, well - you know the word.

I do worry though, if I am the patient now, I don't know who would be able to take that role for me. My husband loses all composure during emergencies and my grown children have not faced this kind of responsibility. I think the best person would be Ben's girlfriend, she was right there with me telling those nurses what Ben needed, why he needed it, what the ER dr. said, his med. history... (I love her) God really had his hand in things when he put them together.
Marie-43 yr old mother of 6 grandmother of 1 going on 2!
dx 2008 - myelofibrosis - possibly autoimmune, osteoarthritis in spine, testing for possible MS or CNS lupus / vasculitis. family history - mother RA/Lupus maternal gma - lupus.
rx-cymbalta, propranolol, clonazapam, prednisone, progesterone cream, b6, b12, flaxseed oil, C.

"All we have to decide, is what to do with the time we are given" ~ Gandalf


Tá mé breá
Regular Member


Date Joined Aug 2008
Total Posts : 140
   Posted 10/3/2008 4:50 AM (GMT -7)   
oh rosie, in all that I meant to say thank you for sharing that article. it was great!
Marie-43 yr old mother of 6 grandmother of 1 going on 2!
dx 2008 - myelofibrosis - possibly autoimmune, osteoarthritis in spine, testing for possible MS or CNS lupus / vasculitis. family history - mother RA/Lupus maternal gma - lupus.
rx-cymbalta, propranolol, clonazapam, prednisone, progesterone cream, b6, b12, flaxseed oil, C.

"All we have to decide, is what to do with the time we are given" ~ Gandalf


Serina
Regular Member


Date Joined Aug 2008
Total Posts : 431
   Posted 10/4/2008 6:35 AM (GMT -7)   

Unbelievable to say the least.  i thouht my doctor's staff messing up was not the norm, but it seems that it is.  they screw up medications all the time.

So now we have to be medical over sight, quality control?  It appears that we do.

Hester


Lupus diagnosed 1996, Heart by-pass 1998, breast cancer 2000, stroke2002, vascular surgery 2005, heart attack in 2007, and had a stint put in, Sjogren's Syndrome 2008
 
******
aspirin, multivitamin, Arthrotec , Meclazine ,  plaquinil, Metoclopomide, Doxepin , Metoprolol, synthroid,  Amlodipine, Crestor, Lasinopril, Plavix, phenagrin,  Restasis  


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 10/4/2008 6:59 AM (GMT -7)   
Ginny . . .

In US hospitals (or at least any I've ever dealt with), you CAN'T bring in your own meds. There may be some way around it if they are ALL in their original prescription bottles ... but I've never met anyone who was able to pull it off.

This is a great topic all in itself. I hope you can check with your hospital to see if they will allow that.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


hippimom2
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Date Joined Jul 2005
Total Posts : 5403
   Posted 10/4/2008 7:03 AM (GMT -7)   
Wow, this is a great article and also scary. I'll make sure that if I'm ever in the hospital that I ask a lot of questions and also have someone else there to advocate for me.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; UC 2008; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

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AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 10/4/2008 7:15 AM (GMT -7)   
Marji!! What a nightmare!! That sounds like a bad movie. The sad thing is that it is just so hard to fight this stuff while you are so ill. Most articles I read, say that having a strong advocate WITH you at the hospital is the best protection. I'm so sorry your choices are so limited.

Mawmaw . . . How terrifying! I hope your son's doctors find a better anti-seizure regimen so he doesn't have to go thru that again. I'm so sorry he is SO young to be dealing with this. I have a sister with epilepsy (seizure disorder) and a brother (gone now) who had chronic seizures due to brain trauma from an accident.

Your son needs to carry printed orders from your son's neuro. All of us should keep a typed med list in our wallet. This list should include all of our doctors name, address, phone number, etc. If we carry a description of our illnesses and past treatment, it might be road map for the ER people. . . if they would look at it.

Hester . . . YES we really do need to be knowledgeable, be able to speak their language (medical terminology) and we really need to know our own case very well. We can't just assume that the doctors are "on it". Sad, isn't it?

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 10/4/2008 8:01 AM (GMT -7)   
Hey Rosie,
 
Yeah, it's the same up here in Canada.  We're not supposed to use our meds, but we are required to bring them all with us in their original containers.  My plan is to inspect each and every pill they give me, make sure they are exactly what I have in my own "bucket".  If there is any discrepancy in the color, size, markings, etc, then I won't be taking what they give me.  I'll take my pills from my own supply.  I've heard way too many "mistake" stories on the news.  I'm not taking any chances!
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, Tramacet, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


Tá mé breá
Regular Member


Date Joined Aug 2008
Total Posts : 140
   Posted 10/4/2008 12:48 PM (GMT -7)   
at the hospital here they are supposed to bring the meds in to you woth out opening them. you can read the packet saying what meds they are. since we have mostly generics, when they bring in brand names I have to think - is that the same as such an such, so now I put on my list what our generics brand name is too. they are usually good about not opening the packs before you see them.


Rosie, I do have to make that note for Ben. Its one of those things you know you need to do, but never set aside time for. But I put it on my to do list so now I hope to get to it. thanks for the reminder
scool
Marie-43 yr old mother of 6 grandmother of 1 going on 2!
dx 2008 - myelofibrosis - possibly autoimmune, osteoarthritis in spine, testing for possible MS or CNS lupus / vasculitis. family history - mother RA/Lupus maternal gma - lupus.
rx-cymbalta, propranolol, clonazapam, prednisone, progesterone cream, b6, b12, flaxseed oil, C.

"All we have to decide, is what to do with the time we are given" ~ Gandalf


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 10/4/2008 8:51 PM (GMT -7)   
Thanks Ginny . . . always good to compare notes.

Mawmaw . . . YES! When I update my list for each doctor visit, I just print out a new one for me and one for hubby to keep in his wallet. It gives him a sense of confidence when he knows he's got the updated info. Once you have it on your computer, it is really easy to update and print it out.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator

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