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July 12, 2011

Health Care Madness: Tips to keep you sane

Health Care Madness: Tips to keep you sane

By Kathy Reschini Sweeney

Don't let anyone tell you otherwise: our health care system is a damn mess.  I am not holding my breath for any injection of sanity or brains in the near future, either.  So today we are going to share tips on how to navigate in this Crazytown.  

1.  You MUST have an Advocate.  If you have Chuck Norris or Oprah on speed dial, by all means, ring them up.  Otherwise, just find a human who can listen and take notes.  No matter who you are, if you are the one getting treatment, you simply cannot keep track of everything yourself.  This is because, among other things, you will be distracted by either the weird-ass stuff in the doctor's office ("Wonder where they put THAT thing?") or the medical staff themselves.  For example, I have never, in my life, seen any group do more snacking than nurses.  I swear someone had a belgian waffle maker in the pre-op area last week.

2.  You MUST coordinate your own care.  Remember how computerized records were going to provide such efficiency and improve the quality of patient care?  BWAH!  Some fool assumed that people were actually going to read the damn things before they engaged the patient.  How quaint.  Never assume that the doctor/nurse/intern/janitor who is treating you knows anything about you or your condition. We were in an - allegedly - top-ranked trauma center where they kept insisting that the left elbow was broken, when in fact anyone who can tell a triangle from a car wreck could plainly see it was the right elbow.  

3.  You MUST ask questions and be pro-active.  Unless, of course, you prefer spending hours at a time sitting in a waiting room or a hospital bed.  Don't think that anyone will remember you are there or that you were supposed to get meds/fed/blood/surgery.  Whether hospitals are understaffed or just unorganized, you need to be the one who makes sure things happen.  I suggest having your advocate watch the hospital scene from "Terms of Endearment" as a training film.

A word about waiting rooms - don't bother watching Jerry Springer on the TV.  There is much more interesting shit going  on around you.  Whoa.  Which reminds me - you must carry Purell or your choice of bleach at all times.  Fight the urge to use it on your eyes - once seen, some images simply cannot be erased.  

4.  You MUST keep your own records - which is another reason you need an advocate.  It does not matter how many times you answer the question: "Are you allergic to latex?"  There is a law that every person you encounter in a health care setting must ask you the same freaking questions every time they see you even if they just asked five seconds ago.  Don't fight it.  If you must, make flash cards and just show the answers.

5.  Do NOT assume that bigger is better.  No joke here.  I never thought I would say this, but there are advantages to local hospitals.  They may not have the cutting edge technology or the fancy speaking engagement resumes of the mammoth systems, but they do have people who actually learn your name, rather than just checking the number on your bracelet.  I am convinced that nurses and other hospital staff at these big places take classes from bartenders on how to avoid eye contact.

6. Do NOT sign everything just because someone tells you to.  I know this is a pain in the ass, but you actually have to read some of this crap.  Otherwise, you could find yourself consenting to all kinds of bizarre treatment.  Stick up for yourself.  If you don't want a cast of thousands in the room every time you have to go to the bathroom, say so.  (This applies mostly to those who have never given birth - because once you go through that show, you lose all sense of modesty.  I mean, I delivered my kids at a teaching hospital, and by the time it was over, I could have been a trending buzzfeed viral video and could not have cared less.)

One final note - try really hard not to go to the hospital in July.  Everyone knows that's when the new baby docs hit the halls.  Unless you are young, single, and looking for a mate who won't be home for long stretches at a time, avoid these newbies at all costs.  

Also - and I mean this in the most loving way possible - my strong suggestion is that each of you do some Kevorkian reading.  I know I am.  Because no way am I spending my last days on earth in a hospital.  NFW.  No offense to the wonderful health care providers out there, but if I am going to have to spend time in hell, I'd prefer to do it after I'm dead, not while I'm waiting.  Just saying.

Your turn - what advice can you share about surviving our medical system?






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Your point number 4: For the last six months or so, I've been going to a new gasteroenterologist. Every visit, which is once a month, I walk in, stand on the scale, and then the nurse takes me into an examination room and, among other questions (e.g. we go down the list of meds to see if there has been a change from last month), asks me my height. MY HEIGHT? As if that changes from month to month? It's the same as when they ask my date of birth and my age. I always think, is this a test?

But my experience with EHR has been different from yours. I've been amazed at my doctors' ability to sit there with me and pull up lab reports from 15 years ago, and to submit prescriptions without any paper. My doctors are younger than I am; I wonder if it is the same with older doctors.

I always take my medical history and "10-questions" document whenever I'm seeing a new-to-me doctor. And I read it to them, because many of times they take said document and put in my folder and ask every single question that is in my document.

I always bring someone with me when speaking to a doctor - just in case I miss something.

Also keep a list of your current medications and dosages, and carry a copy with you in the event of a disaster. And keep a list for your spouse or partner.

I firmly believe that the medical/insurance industry makes a deliberate effort to bamboozle us. Try reading a statement from your insuror. First there's the doctor's charge (no doubt inflated to compensate for the slight-of-hand which follows), then there are payments from the company (a random amount which bears no relation to the original charge), then there are "Adjustments," whatever that means. It is very hard to argue with the charges billed when you have no way of verifying them. At the same time, it's not right to just write a check--errors do occur.

Fortunately, I finally found a physician who is a big believer in *I* am the one responsible for my own care. He actually listens, pays attention to what I tell him, and we work out solutions together.

Kind of refreshing. Like a real.... doctor.

Before I lost my insurance through work and had to switch hospitals when I purchased my own insurance, I had one of those baby doctors, and she was WONDERFUL. Not only did she have room on her schedule for me, but she listened to EVERYTHING I had to say and took a copy of my detailed notes and read through it in front of me. She acknowledged that my time was valuable by scheduling two tests for the same day even though the second one might not have been necessary, depending on what the first test showed (it WAS necessary, saving me a good week of waiting for another appointment), and she explained what the possible problems were and what she was going to do to figure it out. Best of all, she figured out the problem within a week, where the last couple of Urgent Care doctors I saw over the previous month not only didn't figure it out, but one of them "eliminated" the actual problem (bad gallbladder) through an expensive and useless test.

One piece of advice I can share, unrelated to my baby doctor, is to remember that neither the nurses nor the doctors can make you do something you don't want to do. They can go all prissy-lemon face on you, but if you don't want to get on the scale, don't. My final straw came when they wanted to weigh me before removing a sliver from under my fingernail. I threw a hissy and they backed down.

Also, when you're strapped to a gurney, naked under a sheet, left in a hallway for an hour because your gold-chained, open shirted, "I'm too sexy for your kidney stone" urologist is delayed and doesn't bother telling anyone, don't sing "I Wanna Be Sedated" to the elderly anesthesiologist. He won't get it.

End of life decisions---Wow, those are topics you must bring up EARLY in your life. Talk with your family about what you want, and make sure EVERYBODY gets the same story. Make your family a comfortable place to bring up these very difficult subjects, because when you need to know what to do there's no time for discussion and not everybody is in the best frame of mind to make choices that really matter.

OMG, all I an think is that I'm more scared than ever and sorry you went through this. I have friends who are very able, intelligent, and wealthy and do not go to doctors for check ups or tests or anything. I thought they were nuts. Now I'm not so sure.

Good point. If I'm not in a coma--hell, even if I am in a coma--I don't want my last view on earth to be the institutional ceiling of my hospital room.

God bless hospice care.

And also, Kathy, I hope that whatever the circumstances that had you hanging in hospitals and inspired this blog -- that they turned out well and that everyone concerned is now safely home and hale and hearty.

With you 100%!

Fifteen years ago, my roommate in the hospital kept his own charts, or rather his wife did. The AMA could have learned a thing or two from that woman. The staff quickly learned that she would be up their ass if they were more than a minute late on anything. That she knew when the last blood draw was, etc., etc.

If the doctor is rude, all about I, condescending, or not listening to you FIRE THEM! I like the newer doctors. They are more about patient care and less about buying a new Mercedes.

Make your end of life choices known now. If you are in Missouri, this is a link to a DIY Durable power of attorney form. http://www.mobar.org/535a6273-a632-4566-ae96-1443851e3568.aspx It is in easy to understand language. After you fill it out, sign it, have it notarized and give copies to your doctor and the people who love you. I am betting there is something similar in other states and the TLC/Canada clan as well. It would not be a bad idea to review it every year or so, changing your mind is much easier the day before the car wreck puts you in a coma instead of the day after.

The doctor and the pizza man:

Dr. Surgeon, you did not need to wear scrubs to the door, I knew you were a surgeon by the fifty cent tip.

I keep thinking someone could make a living as a professional medical advocate. Someone really organized who keeps records who will accompany you to the doctor's who will check on you in the hospital. Someone on your side who's knowledgeable....why not?


I have a great lady parts doctor and a great GP----if it wasn't for those personal relationships--they KNOW me and have small practices and woudl recognize me at the mall---the hospital would have KILLED me last year. Seriously.

The on call doc and nurse kept trying to treat me for a PANIC ATTACK when I was having this weird allergic reaction I have to some meds. If they had succeeded in sedating me, the allergic reaction would have killed me while I was passed out.

LUCKILY I have my doc on my cell phone. I called her and said, in a bored, slightly irked but VERY calm voice "Suzanne, have you ever seen me have a panic attack? Do you think a person who is -- as you KNOW I am, pragmatic to the point of mental illness-- would have a panic attack in her hospital room while watching Law and Order reruns and holding hands with her husband? Do I sound like I am having a panic attack? This is the exact weird reaction I had to that antibiotic..."

She made me hand my phone to the baby doc on call and 2 minutes later I got apologies and benedryl and steroids.

2 minutes after that, my chest stopped constricting shut around my galloping heart. Heh.

Another point, if you're there with someone you love and that someone is in pain and the nurses won't "bother" the person's doctor in the middle of the night to up the pain relief, do NOT sit patting the person's hand and trying to make soothing noises. Pitch a hissy fit at the nurses' station and if that doesn't work, start shouting through the halls. A dying person should not have to spend her last few hours on earth in excruciating pain. What? She's suddenly going to become a morphine addict?

What Harley said, Kathy. I hope all is well in Sweeneyland today.

By the way, there is no such bone as the elbow, as I found out when I fell while walking once. Cracked one of the bones close to the elbow, along with various other scrapes, contusions, and bruises.

Besides that mishap, I've been to our local ER three other times in the last 5 or 6 years. They always ask, multiple times, whether or not I "feel safe at home". Since I am (or was, I've been working on it) notoriously clumsy and accident-prone, I've been known to answer "Only if someone is with me".

My oldest daughter is a nurse, and she worked in ERs for six years or so, including at our regional Level One trauma hospital. She says it is SOP to ask that question when women, in particular, come in with injuries that might be related to abuse. And they do act on yes answers, and follow up so the patient can get away from the abuser. So they do good, as well as harm.

"Don't fight it. If you must, make flash cards and just show the answers."

Why didn't I think of that? Fabulous, Kathy.

Great advice, Kathy...and stuff I've learned the hard way over the years. My biggest piece of advice is "Remember that it's YOUR body, not theirs"...or in my case, a loved one's. Nurses and medical personnel want to save lives. No doubt about that. But when saving a life also means diminishing the quality of that life, it's essential to have a living will. And a hospitalist who listens.Those two things made all the difference in our decisions about my dad's care...and in his ability to die with dignity. The nurses accused us (actually were ANGRY with us) for 'giving up too soon'...continuing on would have meant a feeding tube to his stomach-he could no longer swallow-and the inability to do what he loved most---cook meals and then enjoy them. And making him bedridden for whatever time he had left. My dad was 91 1/2 years old at the time. We made the decision to hospice him...and let him have the food or drink he'd been denited. His decision, y'know? We were able to spend a last comfortable evening(at hospice) watching his favorite shows, eating popsicles, and talking until he fell asleep. The next morning, we got a call from the nurse and were able to be there as he passed away. Don't let anyone talk you into something you don't want to do...especially that which prolongs your existance but not your quality of life.
And...if your doctor won't listen...find one who does. And do not be afraid to speak your own mind. Once my physician and I learned to commuicate, it was amazing. As William said...a real doctor! Glad your dad is doing well.

Well said, Kathy.
Here's my advice: Make a living will. Write down your care instructions and designate your decision makers if you are unable to do so.
Give a copy of these instructions to your internist.
I put in writing that I DO NOT want be treated at a certain local hospital and instructed caregivers to transport me to another hospital at my expense. I also gave a note to a surgeon when I went in for a minor procedure that he was NOT to consult with a certain specialist.
Do this for yourself -- and also for your family. It will ease their minds.

My father had his first heart attack when he was 48. This November, God willing, he will be 86. My mother has been his advocate and the ONLY reason he is still alive. Now she is the one needing someone to be with her when she goes to the doctor...thank goodness for my sister, lol.

My first story. Dear Hubby had a kidney stone 21 years ago. Left the kids (17 & 6) at home and took him to the ER at 1am. Dear Hubby is an interesting case: cannot deal with pain at all. A sinus headache lays him out flat. When you do give him a pain killer, they don't usually work until you almost overdose him. I thought when I first married him he was just pulling one over one me. But he truly needs a lot of a painkiller to get rid of what is hurting. After 2 hours & his threatening to tear up the cubicle, the nurse finaly found his tolerance level and he fell asleep. The resident called me out to the desk in the ER and told me that now that the pain had subsided, he was sending Dear Hubby home. The nurses looked stunned (mainly because the head nurse though she had given DH an overdose & wanted to make sure he didn't quit breathing). I told him, no, that they should keep him because he needs the continuous morphine until the stone passed. The young man got a snotty look on his face and said, "It couldn't possibly hurt that much."

I am not kidding. That is exactly what he said.

The nurses looked totally disgusted at him. Instead of strangling the little pisher like I wanted to, I leaned as far over the counter as I could and told him, quite sweetly, that if he didn't admit DH I was going to call my primary physician, at home, at 3am, on his weekend off to have the issue resolved. That my physician was a family friend, went all through school with my father, I went all through school with his children, we went to the same church and had his home phone number in my purse. He admitted him and put him on a morphine pump.

The next morning, when the doctor came into the room, he took one look at me and busted out laughing. He said I was the talk of the hospital because I took on the little shit resident that no one liked. He had no problem with anything I did other than to ask if I really did have his home phone number. I said no I didn't, but I knew how to get ahold of his son to get it. He just laughed and said to have the nurse call him when the stone passed...about 3 hours later.

I am so with you on this one. I was advocate for both of my parents during their final years. Mistakes happen even in the best of hospitals. My father once received a dose of levadopa that was almost three times what he had been prescribed for his Parkinsons. If I hadn't noticed that he was acting strangely, it might have had tragic results. Thanks for this post, Kathy. I'm with you on the Kevorkian thing.

Oh my Kathy, I went through this with my Mother in November 2009 you are right on with all of your points. I can remember saying "I know that you don't want me in your waiting room to pick up those files, I will scare every last patient away." as time went by I did not have to inform them as to why they didn't want me in their waiting room. Keeping track of lab results, where they were, who had them last, where are they now, who cleaned this place a blind person? And let's not even start with the super inefficient Medical Records Department. Oh so manny things and such incompetence at times. A waffle maker?????? I have now heard it all. My best was the needless chatter when a patient needs help and I am waiting to tell them about this particular patient. You just resign yourself to taking off your filter, instead of a filter with small little mesh holes one the size of a pipe used in the Alsakian pipeline.

Love the flashcard idea, complete with pictures!

There is another woman in the St. Charles area with my name. Our middle initial is even the same. We see the same doctors, beauty shops, eye doctors, etc. Fortunately we have different birthdays. In February I had to see a cardiologist and on my third visit, I noticed something odd in my file as I was talking to the Nurse Practitioner. When I questioned it, it was a test (that would change the course of treatment I was to get) in my file. They took both files (and she had a big one) and broke them completely down. Some of my stuff in hers/some of hers in mine. Now when I go in, I always give them my birthdate just to make sure they have the right file. They act as if I'm being a pain, but I don't care. The doctor and the nurse practitioner were horrified and very appologetic, but the office staff is snotty.

Absolutely great advice. I have had more surgeries than I care to remember and learned long ago to always bring another set of eyes and ears with me to those non-routine appointments. Stress and pain wreck havoc on everyone's ability to absorb what the doctor is telling you. I have a file on my (and my husband's) phone with my doctor's contact info, my medications, allergies, and surgery history, I always print out two copies to bring with me to every doctor appointment, one to clip to the check in form and one to have handy when the nurse or doctor start asking those repetitive questions. Never ever be shy about speaking out when your health or a loved one requires it.

My bit of advice?

The doctor (or whomever) is your employee! He/she is being paid (whether by you or your insurance) to do something for you!

They are not god, and therefore you should ask questions. Demand answers. If you don't understand, keep asking. If something isn't working, then demand something different. And definitely, like Kathy said, take somebody with you...if for nothing more than helping to take notes or hold your hand or remind you to read the damnable papers before you sign them.

All this I learned with my brother and all of his medical issues. Sigh. I was once run over (while in my car) by a tractor trailer. The cops came and were going to call an ambulance even though I was mobile and only bruised (the car engine and front end resembled a pancake tho)...I had them take me to work as my stepdad worked there and we had medical staff on site who checked me out. Of course, the next day the whiplash hit, but at least now a visit to the doctor or hospital would be worthwhile.

Best advice? Die before you get sick.

Right on all points, Kathy. Also: in addition to having a good relationship with an MD appropriate to your 'parts', see if you can find an MD appropriate to your AGE. A pediatrician makes better calls for little ones than a generalist or hospitalist; a geriatrician makes MUCH better calls for elders than the others, particularly as applies to pharmaceutical management. If you don't have a personal advocate, ask for a case manager and institute a solid understanding with this person.
Best of all, go to an acupuncturist, homeopath and/or chiropractor regularly for wellness/longevity care. This may cost if your insurance doesn't cover it, but may save you thousands or millions in preventable surgeries or other extreme interventions. If you nip all potential illnesses in the bud, and have all non-emergent injuries thoroughly attended to, the likelihood of your spending your last days debilitated in hospital diminishes considerably.

I don't even know where to start on this one. You absolutely have to take control of the process and be your own advocate. When Dad was hospitalized, someone almost had to be there all the time because each time someone entered the picture, it was someone new. No one had the ability to monitor changes over time other than the doctor whose visits were brief.

I did see tremendous compassion especially in hospice but it is a very complicated process.

Eat Pringles. Sound odd? Well - once you eat the Pringles, you have this fantastic can. Into the can goes:
Advanced directive, living will, medical power of attorney, contact info for all your doctors, and person to contact, list of medications, allergies, maybe a housekey...
Repaper the can in white and put a big red cross on it. Store it near the door that the guys in an ambulance are going to haul you out through.
Now you have instant records to take with you to the hospital in an emergency. Very useful until your advocate arrives on scene to take over.

Another good tip is to print out your medications with dosages and frequencies on those larger sticky address labels and carry a couple in your purse/wallet. You will completely blow the nurses away when they ask for your meds and you whip out a list they can just stick on their form.

Buff, all good advice. Even better: Take such good care of yourself that you don't need to take any meds in the first place.

I second what Laraine said, too. Massage therapy, chiropractics, and acupuncture, along with homeopathic remedies, neti pot, and healthy eating, have helped keep me out of the clutches of traditional medicine. And that's where I hope to stay. Nearly every doctor I've ever been to has been happy to take my money and order expensive tests with nearly no results. I'll take my chances elsewhere, for the most part, since I'm the healthiest I've ever been since turning to the "woo-woo" stuff.

When my second stepdad was going downhill with Parkinson's, kidney failure, and a pair of broken hips he never recovered from, my mother blew me away with how organized she was. She kept an up-to-date chart of all his medications and dosages on the computer, and she printed a copy out for each doctor, hospital, and for the facility where he went three times a week for dialysis. When different doctors started to prescribe meds that would have counteracted one another, my mom was able to keep her poor husband from getting even worse than he was. Since he was unable to speak at all towards the end, she prolonged his life by a good while, just by her advocacy and vigilance.

Buff, this is terrific advice. A friend of mine in late-stage cancer wanted to die at home, and had an advance directive tacked up on the wall in the hallway of his little apartment. Well-meaning friends kept calling 911 when he was in pain or disoriented, and the paramedics never ever spotted the advance directive, and he kept ending up in hospital, where he eventually did die, because there was never evidence of his advance directive at hand when needed.
I love patients who bring a complete meds list in with them, including everything that they've taken for more than ten days in the past five years--this makes it SO much easier for me to get a good grip on what their pharmacological situation is and make appropriate decisions as I interview and care for them.

Not long ago, a woman named Sharlotte Hydorn was manufacturing and selling suicide kits over the Internet. 60 bucks a pop. She made them at home and mailed them, no questions asked. But then a young person (29, I think) used one of her kits and Hydorn was arrested, and so can't fill her back orders.

She's 91, by the way, and believed she was doing a service to humanity.

Story two:

My sister had hip replacement surgery 3 years ago. The first night after the surgery, she took the pain pills. The second night she refused them because her hip pain was tolerable, much better than it was before the surgery. The nurse kept pressing her to take the pain pills. Again my sister refused. The nurse proceeded to get all holier than thou with her and all but shoved the pills in her mouth. My sister put the pills back on the tray and refused to take them. The nurse grabbed the little cup they were in and stomped off. The next night the same thing happened. My sister called the patient advocate's office and request that the charge nurse and her physician to get together and stop by at the same time. As she told her story, the charge nurse got angrier and angrier and asked my sister if the pills were in a bubble pack or in a little cup. They were in a little cup. Her doctor told my sister not to worry about it. She wouldn't be pressed to take any pain meds other than tylenol again. It seems this nurse was doing this to all of her patients to get them to sleep so she didn't have to bother with them. Oh, and she was keeping the pain meds that my sister didn't take for herself and marking the chart that they were taken.

Neurologist: If you want to be my patient, you cannot bring your service dog into my office.

Me: Good-bye.

::phone rings::

Me: Hello.

Neurologist: I'm sorry, but my receptionist is afraid of dogs.

Me: And?

Neurologist: Well, I hope you understand.

Me: Yes.

Neurologist: Good. Would you like to make another appointment?

Me: No.

Neurologist: Well, I have a right.

Me: Well actually you don't.

Neurologist: What?

Me: It's not my job to explain that to you. I suggest you see a specialist. Shall I refer you?

I like Judith's advice.

You pretty much nailed it, Kathy, especially using the scene from Terms of Endearment as a training film. Been there, done that, have the t-shirt.

My favorite hospital story is the time I had appendicitis. My dad diagnosed me in two minutes flat. It took the doctors at the hospital two solid days and a bazillion stupid tests, followed by exploratory surgery to discover...yes...it was appendicitis. And because it took them two friggin' days, it had become gangrenous. So I spent 9 more days on the brink of death, hooked up to IV antibiotics.

All because no one listened to my dad.

::phone rings::

Me: Hello.

Neurologist: I am so sorry. I was stunned when you left because I said you couldn't bring your service dog with you.

Me: Oh.

Neurologist: No one has ever done that before. Everyone always says they understand, and they don't bring their dog back the next time.

Me: And you think that's good?

Neurologist: As long as people agree, yes.

Me: I don't.

Neurologist: I like dogs.

Me: So?

Neurologist: I'm a good neurologist.

Me: So? I'm a good patient.

Neurologist: I can't ask my receptionist to hide in the other room whenever you come for an appointment.

Me: Your decision. So would you like that referral now?

Ummm, Reine, doesn't he have to comply with ADA when it comes to service dogs?

Hi Pam,

Yes, he does. People often don't, however. I gave him the referral:

::phone rings::

Me: Hello.

Neurologist: I am so sorry. Please give me another chance. I was confused. I was in shock that you said you would see someone else if you couldn't bring your service dog with you.

Me: I know.

Neurologist: I checked the law, and you were right.

Me: I know. And I have a new neurologist now.

This is all so true. I am not going to go through everything I have experienced with my son, who has chronic migraines and kidney stones. Just one story. Took him to the ER once with blood as black as ink and they told me it was normal, and that we overused the health care system!!! Turned out the kidney stent they had inserted a few weeks ago was the wrong size! I could go on and on. I know some wonderful doctors, but most of them you must protect yourself against. I won't leave any family member alone in the hospital, even if I have to sleep on the floor!

I am very fortunate to have a great GP and not does she listen, she pays attention. She is thrilled that I seek alternative care and never gets upset about what the naturopath, acupuncturist etc, might suggest I do. It is also very entertaining to see her as she has a new tattoo almost every visit! She also likes it when I do research and ask questions.

When I had to see a cardiologist last year, my GP warned me that this specialist was a bit like House, very abrasive but very good. Funny, when I saw the woman, she was completely attentive and pleasant. Turns out I had very out of tune electrolytes, causing serious arythmia (sp) and a few months of homemade rehydration fluid fixed that all up - no drugs, no intervention.

I did learn to do some advocating while my friend Anne was in the hospital. Thankfully both Anne and her family let the Dr's, nurses etc think I was her adopted daughter so I was able to help more than a family friend might have been. When she had a final diagnosis and was DNR, I had to protect her from nurses who wanted to do just 'one more' thing to her. I kept sending them back to the nurses station to check her chart for the DNR. One of the saddest things was when she did die, the good nurses on the ward were all in tears, it was then that I realized that the good person that Anne was affected everyone around her.

Story Three:

Nine years ago I had a hysterectomy. I'm not going to go through all of the horrific details because, while funny now, I wouldn't want to turn someone away from having one if they need it.

What should have been an overnight stay ended up being 9 days in the hospital with a bowel adhesion. The doctor had to open me up to stop a bleeder and bumped my intestine and the sides stuck together. I was on some pain killers that did ok...took the edge off but still had pain. The surgeon that was called in to consult ordered a much better pain killer and I was singing in the exray dept. So I really couldn't make sure I was receiving the care necessary to get this condition cleared up. Dear Hubby stayed with me the entire time, only going home to take a shower and change clothes. (Our 15 year old daughter was thrilled...she had the house to herself. Fortunately it was still standing when I got home, lol.) DH had one nurse removed because the only time she showed up was when the doctor was in the room. We could never get anyone to answer the call bell; he would always have to go to the desk to request my pain meds. When the patient advocate showed up on day 7 of 9, the doctor was there. She figured we wouldn't say anything because he was in the room. Oh, how wrong she was. DH unloaded on her exactly how the nurses were treating me. He had nothing but glowing remarks for the LPN who took care of me the entire time. But she was writing as fast as her little fingers could write. When he finished, my doctor said, "And now I can vent right along with them." And proceeded to tell her how the nurses dealt with him about me and that he had filed a formal complaint with the head of nursing. I didn't know most of this until I got home. I thought it was all one big game. I really wanted more of that stuff they gave me, lol.

Gaylin, your Canadian health system is far superior to ours, I think. Here in the States you practically have to have a court order to get a DNR wish satisfied. And even when someone dies at home, peacefully, and it's obvious that they are ALREADY DEAD, EMTs still are required by law to put lifesaving techniques and equipment to use. It's ridiculous.

Ask questions about the basis for recommendations. When I reached that age, every dr. I went to suggested hormone replacement therapy, for it's benefits, not because I was having problems. I asked for a bibliography of the research so I could read for myself before deciding. Never was given one and decided I wouldn't do it because I was doing fine without it. A few years later there was massive publicity on the dangers of hormone replacement therapy to the point that many doctors took most patients off it completely. Point being that if what you're being told seems not to meet the common sense standard, check it out.

Love that last advice, not spending last days on earth in hell. Anyone read Mill River Recluse by Darcie Chan? The opening is a woman dying on her own terms.

Karen, the whole DNR process was painless. The palliative care staff in the hospital were amazing and once the dilaudid was 'on board' for Anne, her last couple of days were painless sleep until she died. It was a sad, difficult process to be part of but her last days afforded her some of her dignity back after so long in care.

You all are making me very scared because I have no one really close to advocate, so I'd better take Laraine's advice and try to stay healthy . . . (maybe I'll just take up sky diving?)
Reine, you raise an interesting point about service animals. There was an issue recently with a student's service dog on one hand and students with asthma and allergies on the other . . . not sure how it was resolved. I know that our science department had to stop keeping animals at schools because of allergies. I vote for a cure for allergies and anything else we can possibly cure.

Gaylin, a Canadian friend (she lived in Mission) had ovarian cancer. At the end the palliative care she got was incredible. She could even have her dog stay with her sometimes (she was too sick to take care of him overnight). I was so impressed at how that worked in Canada, and wished we had a similar situation here. Anyone who thinks Canada's "socialized medicine" is a bad thing should have to compare our system with yours on a case by case basis. I bet they'd change their minds.

??? Mr. Typepad ate my comment just now. ???

I'm a retired nursing director and I have been that pit bull without lipstick. Make sure you have a list of ALL of your medications, perscription and over the counter. Also, a list of ALL of your doctors.No one should treat you without giving you their name and title. Find out what their real position is on your care team, not just a series of initials after a name. So many people see several doctors, all working on different parts of your body. Some patients can get the same type of medication several times a day because of this sectional approach to treatment. Remember you have a right to the information about yourself. If you forget or you are overloaded with information insist that material is repeated and that you have directions in writing or delivered to a voice mail or tape recording.

Hi Mary,

Sorry i didn't see your comment sooner. I think those situations can be negotiated. Airlines for example, typically limit the number of dogs allowed on any one flight. This allows people with allergies or other concerns to be seated at a distance from a dog. I am allergic to an ingredient in many/most soap powders, and it sometimes triggers an asthma attack. I can't ask the store not to sell soap powders, but I do ask a store employee to get my liquid detergent for me. I have yet to encounter a situation that can't be worked out amicably. The receptionist could have left the room while I was rolling past her desk that was, by the way, behind a wall, and Kendall was securely connected by short mobility leash to my power wheelchair. Ask Karen and Zoë. I don't want anyone to be hurt in any way. That doctor was an unusual "case."

Don't just remove all clothing because you are asked. I had surgery on my Carotid Artery. Big Tumor. In case you did't know that is in the neck area. Nurse says remove all clothing. Nothing doing. I fought for my panties the whole way and I won. Seriously! My neck is no where near my ass! And since my surgeon and I work out in the same gym, I wasn't giving up my panties. Just sayin.

Your comment about snacking nurses is unfair. I was a nurse for twenty-five years. I worked twelve hour shifts on the surgical floor of my local hospital and many nights I never found time for dinner and a cup of coffee was a luxury. Those nurses you so glibly talk about may have been on break, or else they were not being supervised very well.

I've been a nurse for a long time. Having a living will is a great thing, but- make sure your family knows your wishes! If there's a DNR but the family is screaming at the staff to do "everything", well the patient won't sue, but the family will!

This is a great discussion! And July is when the new nurses and the new residents start- talk about a lethal combination!


This post was highly appreciated, I got a lot of tips and information to have sane.

by: Motorized Wheelchair

Great tips, though I got to admit it can be a bit tricky following them.. Last time my elderly father was hospitalized he was in such a shock by the situation he couldn't really think of ways to be "pro-active" nor had the time to read all the papers handed to him.

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