[ewizabeth]

http://www.cnn.com/2008/HEALTH/10/02...ef=mpstoryview


Actor from "Sex in the City" tells how he beat the odds and survived leukemia.

I can really relate to what he's saying. I tend to be a "bad patient" too.

[kami]

Boy did you get that one right Wiz. No one communicates clearly, and the patient is
at a distinct disadvantage. The Dr tells the staff one thing, the patient another version.
Most of the time they start things while you are comatose with heavy meds and unable
to defend yourself.

In hospital I also got lied to about meds, got wrong meds, bad allergic reactions, non-
nutritional food (sugar free jello and brown water called but not tasting like buillon) for
six days, and nearly tied to my bed after trying to leave with friends and family to tend
me at home. I finally pulled out the IVs and refused any more food or treatment. I will
probably have to be hauled to my next hospital visit in a body bag. Definitely NOT kidding.

kami

[ewizabeth]

Here is an excerpt from the article.

In many ways, Handler is the ultimate empowered patient. "I learned that I must always remain in control, double-check everyone's work, and trust no one completely," Handler wrote of his approximately eight months in the hospital. "I must have been sheer hell to be around. But I know that my cantankerousness saved my life on several occasions."
In his books "It's Only Temporary," and "Time on Fire," Handler wrote that during his months in the hospital, he was given intravenous drugs that were supposed to go to another patient, that nurses tried to give him medications his doctors had forbidden for him and that staff members refused to follow the hospital's posted hygiene precautions for immunosuppressed patients like himself...

Kami,

I've never really had a completely satisfactory hospital experience. I'm a perfectionist when it comes to medical care, so when things aren't right, I'm generally a very squeaky wheel. My local hospital hasn't had a good track record for the times I've been admitted. I hope I never have to be there unconscious, knowing what they've done in the past.

[rumpled]

I totally agree...
I was last in the hospital and I am panhypopitutary with no adrenals. I was there to get IVIG. I have my medications very regulated around meal times, around peak hormone times to best mimic a real body (since all my hormones are fake), and done not to interact with each other or food/empty stomach.
They wanted me to take them at 9am and 9pm. That was not going to work. I brought all my meds plus a list I have that details why I take each one, when, who prescribes it, etc. They took my meds away.

Within 2 days, I almost died.

I got ascpetic menigitis from the IVIG. I had 103.5 temp and the idiots could not find an endo to get order to get me the 100mg of steroids I needed to live. I have a medic alert bracelet on that says "steroid dependent". I gave them a letter from a doctor that outlines my care for someone without adrenals. They refused to call the neuro-endocrinolgist that I have a history with in the same hospital. They brought me 5mg. They put me on a heart monitor as all indications show I am having a heart attack. I become pan-cytopenic. They are giving me fluids, anti-emitics, pain meds - but not the steroids. My fever is higher than usual for asceptic menigitis so tons of doctors are coming by. I keep asking for the damn steroids. I call my husband to tell him good bye. He freaks, calls up and threatens them. I get 15mg. Still not enough. I keep telling them to tell the endo that I have no freaking adrenals - that I am going to die. Finally, 5 hours later, with my husband threatening to sue, they finally give me 80mgs and my fever starts break a few hours later.

Later, I see in their records that they did not think I was having enough symptoms of an adrenal crisis. Huh? The neuro-endo sees me the next day and gives me 250mg of steroids and I have to stay in the hospital 3 more days just to recover from the catasrophe. I want to go home but I am too sick.

I sent them a nasty but concise letter that they need to educate their staff about adrenal crisis but to date, no response.

[Vowel Lady]

rumpled...
Your post scares me half out of my mind.
I have/had a small pituitary tumor.
At my last MRI, it seem to have disappeared. My neuro seemed a little suprised by this. I think he doesn't know whether or not to trust the findings.
I also have migraine headaches.
In addition, the last time I was in the hospital, I had to wait 5 hours for a stool softener and an additional five hours for a heating pad.
This, apparently, requires a doctor's order and there were no doctors to ask the question. I also got a migraine while there and was offered two tylenol? ($#@!)
I spent the evening in horrible pain and frustrated beyond belief. If I were ever in this position again, I would crawll to the ER and ask to see a physician.
One more thing...my mother died at age 49. She wasn't feeling well and went to the doctor. Had orderd a chest xray in the hospital as part of a check up. The report came back "suspcicious dark spot" on lung needs immediate follow up care.
The doctor ignored this...never told my mother.. no follow up...no treatment.
Six months later...she had symptoms of lung cancer and in fact, did have lung cancer.
She was then given chemo in the hospital...where she developed sepsis (blood infection) and died.
Yes, I am bitter and freaked out about hospitals. Sadly, I think things have actually gotten worse. What is with this??? Someone PLEASE tell me!
Word on the street....medication error is the #3 cause of death of women.
If I were you, I would contact an attorney.
AND, I would NEVER EVER EVER EVER go to the hospital without an advocate by your side, esp. when you first go in and then the great majority of the time while you are there. Make sure your husband and perhaps a good friend for extra insurance, is well aware of all the medications you take and any special needs you may have. Go to the hospital only if absolutely necessary and with all your meds tucked away secretly in your purse or suitcase.
I'm sorry that you had such a difficult exp. in the hospital and applaud you and your husband for standing up againtst the poor and dangerous treatment you received when you were so ill.

[rumpled]

I am sorry about your mother.
The nasty little resident who was in charge of my care just did not have a clue and was arrogant. When I first started to go downhill - he came in and told me (and I quote), wow, we only see blood work like this in really old people. Obviously, I was getting sick then but instead of acting, he let me just hit near death. He decided I knew nothing about my own health.
I went in healthy (well, sort of)... excited even, at the prospect at feeling better. I told my husband to just stay at work, not to worry... but with no adrenals, my health turns on a dime.
I thought about an attorney, but I am so sick, and in need of care, that if I sue, I am afraid that other doctors will not take me on. I am having trouble finding a doctor as it is. True, they made a gross error, but their own records (or the few that I do have) of course make them look just fine like I was hardly symptomatic. They actually wrote that I did not have the symptoms of an adrenal crisis. I am not sure I could get a jury to understand how wrong they are.

As for your disappearing tumor.... what is the size of your tumor? MRIs have 3mm slices so it could have been lost in a slice. Unless you have been taking meds to reduce the size. Or you could be like me - I had a hyperplasia that just slimed its way all over the pit - it was there, bigger than ever, but became a shadow but just as nasty as ever but now, impossible to remove. Surgeons read the films better.

And yes, I will keep my meds secretly with me.