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Author Topic: What kind of a Patient are you?  (Read 3920 times)
brenda
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« on: November 27, 2007, 08:41:06 PM »

I know that we are all in different spots or different stages with this disease. And we all have different kinds of causes. But what kind of a patient are you?

Do you so fully trust your Dr's that you never question what they say?

Do you question them and are mostly always satisfied with answer?

Do you ask questions then walk away to make a decision?

Do you get a seconds opinion? Never? Always? Sometimes?

Do you totally defy what they say?

Or, do you follow your gut?
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Life is what happens while your making other plans.
Adam_W
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« Reply #1 on: November 27, 2007, 08:54:25 PM »

I ask my doctors a lot of questions, and I mostly trust what they say, but ultimately I make my own decisions.

Adam
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-Diagnosed with ESRD (born with one kidney, hypertension killed it) Jan 21st, 2007
-Started dialysis four days later in hospital (Baxter 1550-I think, then Gambro Phoenix)
-Started in-centre dialysis Feb 6th 2007 (Fres. 2008H)
-Started home hemo June 5th 2007 (NxStage/Pureflow)
-PD catheter placed June 6th 2008 (Bye bye NxStage, at least for now)
-Started CAPD July 4th, 2008
-PD catheter removed Dec 2, 2008-PD just wouldn't work, so I'm back on NxStage
-Kidney function improved enough to go off dialysis, Feb. 2011!!!!!
-Back on dialysis (still NxStage) July 2011 :(
-In-centre self-care dialysis March 2012 (Fresenius 2008K)
-Not on transplant list yet.


"Don't live for dialysis, use dialysis to LIVE"
kitkatz
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« Reply #2 on: November 27, 2007, 09:02:27 PM »

I usually go with my gut after I have had all of my questions answered.
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Take it one day, one hour, one minute, one second at a time.

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« Reply #3 on: November 27, 2007, 09:15:36 PM »

Do you so fully trust your Dr's that you never question what they say? No way! Local doctors I trust more than the transplant doctors though.

Do you question them and are mostly always satisfied with answer? Yes I question them and mostly not satisfied with transplant doctors answers.

Do you ask questions then walk away to make a decision? Yes, have too with these dimwits I have for a transplant doctor.

Do you get a seconds opinion? Never? Always? Sometimes? Sometimes, but it depends on what is bothering me.

Do you totally defy what they say? Not always, but lately yes with med increase due to lack of giving me a reason to why they increased it with no test done.

Or, do you follow your gut? Have followed my gut on a couple occassions with stopping meds and felt a lot better after stopping them, but with transplant meds, I go with doctors who actually see me regularly than out of the whim change my dose because they feel like it.
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Diabetes -  age 7

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Roxy
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« Reply #4 on: November 27, 2007, 10:06:55 PM »

I take the information the doctors give me and research it. Then, I spend a day or so thinking it over and seeing if I personally agree with what they want me to do. Sometimes I will get a second opinion. One thing I've learned is that doctors aren't even always sure about the results of things, so why should I be sure of them? I value their opinions and their suggestions, but at the end of the day I have to be happy with the decisions made.
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KICKSTART
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« Reply #5 on: November 28, 2007, 02:09:46 AM »

Bloody awful !!!! Im non compliant, got a negative attitude so one nurse told me ! I ask loads of questions , i argue. I get anoyed with seeing a different doctor every time i got to the hospital , then having to go through 7 yrs history with them because they dont know me or anything about me. I have to tell them what tablets im on, what i have tried , why they didnt suit me. I just get sick and fed up with it all. Then when i have to go over to get my bloods done and there is a stroppy nurse who comes at me with the biggest needle she can find because i ask her to take blood from the back of my hand because the veins in my arms are no good.
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OH NO!!! I have Furniture Disease as well ! My chest has dropped into my drawers !
SheilaW
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« Reply #6 on: November 28, 2007, 09:48:50 AM »

I ask questions, get the answers they give me, then do a bit of research or ask someone else before I form an opinion. 

Really, I'd like to trust everything they tell me, but I know better.  They're as human as I am and prone to stupidity and mistakes as much as the next guy.
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KR Cincy
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« Reply #7 on: November 28, 2007, 10:20:49 AM »

I think I'm a good patient...I come prepared with questions so I don't waste anyone's time...I take my neph's advice, but it's usually prefaced with "let's try this for a month"...since I see him once a month, we have the advantage of tweaking numbers or procedures and giving them a test run...and I respect his knowledge and his concern for me. He told me at my first appointment "we have one goal together and that's to get yo to the five year mark so you can get that transplant." He's a good guy.
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« Reply #8 on: November 28, 2007, 11:12:18 AM »

I approach medicine with a healthy skepticism. After all, doctors are just "practicing" medicine, and some are better than others. If someone is impatient with my questions or won't take the time to explain things - I am done with them.
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angela515
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« Reply #9 on: November 28, 2007, 12:03:16 PM »

I have been a "patient" since age 12... and I quickly learned how to become in charge of my own health. I always ask questions. I do not continue seeing a doctor if I do not trust them, or if I do not get along with them, or have any other issues with them. I take my health into my own hands, and when I am told my problem can't be found or there's nothing wrong, I don't give up until I find the doctor who will look further and find the problem. I research on my own all the time and know more about my health problems than most nurses and doctors. I usually can diagnosis myself on the way to the ER and can offer my opinions and why I believe it to be so.. I am usually always right, but in no way would I want a doctor who just took what I said for word and didn't run their own test for their own ideas, nor would I want a doctor who doesn't even want my opinion on things. I am a very picky patient, and believe everyone should be, as it's your body.. not theirs. Never leave your life in the hands of someone else to determine your fate... take action, take charge... be your own advocate no matter what.  :grouphug;
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Live Donor Transplant From My Mom 12/14/1999
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Ang
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« Reply #10 on: November 28, 2007, 07:37:07 PM »

i  reckon  i'm  a  pretty  good  patient,been  with  the  same  neph  for  nearly  11  years.usually  ask  questions  pertaining  to  my  treatment  and  get  him  to  explain  why  is  it  so  ,  when  i  don't  understand.
i  don't  take  to well  to  imbeciles  and  unfortunately  a  couple of  the  nurses  in  my  unit  are  just  that.  :banghead; that  story  is  for another  day :thumbup;
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live  life  to  the  full  and you won't  die  wondering
KT0930
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« Reply #11 on: November 29, 2007, 09:00:19 AM »

I used to be one who blindly followed whatever the doc said, then in a span of less than a year I had two things happen. 1) I had a neph with a TERRIBLE bedside manner; 2) I ended up in the ER with a bladder infection, and with my (now ex) husband in the military, went to the Naval Hospital. Both those experiences taught me one very important fact...I know what's normal for my body.

I listen to the doc, but I also interject when I don't think something is right for me. I make it very clear to any nurse/lab tech/etc who's never met me that I know exactly what's up with my health and they're not going to treat me like an imbecile.
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"Dialysis ain't for sissies" ~My wonderful husband
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I received a 6 out of 6 antigen match transplant on January 9, 2008. Third transplant, first time on The List.
paris
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« Reply #12 on: November 29, 2007, 07:03:18 PM »

We sometimes do know as much or more than the medical people we see.  I had labs drawn the other day and the tech took 20 minutes to pick out the right tubes!  She had a big problem deciding what color to use for the pth.  Finally, she looked at me and said "does that look like too many tubes?".  I could have picked out the tubes myself. I think I now know which color is for what test and no, it wasn't too many tubes. It actually was one short!  You know those labs won't come back right!
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It's not what you gather, but what you scatter that tells what kind of life you have lived.
brenda
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« Reply #13 on: November 29, 2007, 08:48:58 PM »

Because of my high PTH I have calcium & phos drawn each week. I can't tell you how many times my results have been lost. Nevermind before I stopped going for a while I used to have to sit in the lab for an hour waiting my turn every week on a dialysis night. Finally they decided they could just do it at the unit. Ten minutes and I am in and out now. Sometimes you just got to take a stand, there is usually always an alternative. Just too bad you have to do stuff like not going to get it.
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Life is what happens while your making other plans.
angellady07
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« Reply #14 on: November 30, 2007, 12:13:03 AM »

I go with my gut. I listen to their advice, then I research the situation on my own. The bottom line the final decision is mine. I have a couple of doctors with the God complex. I'm never supposed to question their answers. I have every right to question them. They have my life in their hands.  :rant;
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Ken Shelmerdine
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Life's a bitch and then you go on dialysis!

« Reply #15 on: November 30, 2007, 03:48:03 AM »

Pre-dialysis my potassium level went off the scale and through my own research I discovered that the cause was a blood pressure tablet that my renal doc had recently doubled in prescribed dosage. When I pointed this out he took me off it and replaced it with a different drug and guess what? potassium came back to normal level.

 When the docs start doing that superior 'I know better than you I'm a doctor' shit I remind them just what a cock up they made with my serum potassium level. :boxing; :boxing;

My cynicism towards doctors goes back years to when they failed for 12 months to diagnose cystic fibrosis in my daughter. During that time we were under the spotlight as 'over anxious parents'

I still believe to this day that had she got a quicker diagnosis she would have lived considerably longer than her 4 years.
« Last Edit: November 30, 2007, 03:54:30 AM by Ken Shelmerdine » Logged

Ken
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« Reply #16 on: December 02, 2007, 07:30:25 PM »

Like a lot of people have said so far, I listen to my doctor's thoughts, but I research the subject. Too many times well meaning doctors and physicians assistants have made mistakes, used incomplete medical readings, or were confused by inaccurate records. You are the expert on how you feel, never be afraid to ask questions or seek other opinions. I try to be respectful, but sometimes, I feel I have to follow my gut.
They still call it a medical practice  :o
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oswald
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« Reply #17 on: December 02, 2007, 08:15:16 PM »

i have three main docs that i see; the transplant neph in the hospital, my primary doc, and my post transplant neph in my community.  when i get a change in meds or if something needs looked at, whatever, i have all three communicate with each other as to my treatment.  they are all very great docs.  i think it's crucial that all your docs are on the same page.  although i do ask questions when i don't know something, thats important too.
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ESRD 11/95
1st Transplant 7/1996 (failed; Nephrectomy 12/1996)
2nd Transplant 3/1999 (lasted 6 years)
3rd Transplant 5/2007 (lasted 4 years)
misschell78
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« Reply #18 on: December 10, 2007, 09:24:37 AM »

i am a terrible patient b/c of my pedi neph! he taught me so much, from asking questions to doing my own research. when docs ask me who my pedi neph was that just roll their eyes when i say ronald j hogg.  hey is was slighty mean to other docs, especially his interns. but they also learned alot from him and so did i!!! :yahoo;
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Black
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« Reply #19 on: December 10, 2007, 10:57:46 AM »

I have been a "patient" since age 12... and I quickly learned how to become in charge of my own health. I always ask questions. I do not continue seeing a doctor if I do not trust them, or if I do not get along with them, or have any other issues with them. I take my health into my own hands, and when I am told my problem can't be found or there's nothing wrong, I don't give up until I find the doctor who will look further and find the problem. I research on my own all the time and know more about my health problems than most nurses and doctors. I usually can diagnosis myself on the way to the ER and can offer my opinions and why I believe it to be so.. I am usually always right, but in no way would I want a doctor who just took what I said for word and didn't run their own test for their own ideas, nor would I want a doctor who doesn't even want my opinion on things. I am a very picky patient, and believe everyone should be, as it's your body.. not theirs. Never leave your life in the hands of someone else to determine your fate... take action, take charge... be your own advocate no matter what:grouphug;

Thank you, Angela.  I totally agree and I could not have said it as well.
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Lorelle

Husband Mike Diagnosed with PKD Fall of 2004
Fistula Surgery  1/06
Fistula Revision  11/06
Creatinine 6.9  1/07
Started diaysis 2/5/07 on NxStage
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