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Author Topic: Trust??  (Read 5284 times)
Rerun
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Going through life tied to a chair!

« on: March 09, 2006, 08:15:01 AM »

Dr. K, the same one that screwed up my Prednisone decrease, told me while I was in the hospital that she would call the center to let them know I'd be back on schedule Tuesday and to adjust my Heparin.

I got there and they had NO idea I was coming and said they would just "hold" my heparin.  NO, NO, NO!!  We are not going to "guess" about my Heparin!!!   >:(

This SAME Dr. asked me long ago.. "how is it going to be if we don't trust each other?"

Dr. K...... TRUST Is Earned!   >:(
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kevno
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« Reply #1 on: March 09, 2006, 12:14:26 PM »

I have for a long time found it very hard to trust any Doctor. From when I was held me down when i was a child.  To only last week prescribing the wrong tablets. I am alway asking question to the doctor, but it is very rare you manage to get a straight answer. You have to try to give the doctor some trust, because if it was not for doctors none of use would be here now. :-\

I know this sounds a bit strange,I always try to double check to what a doctor gives me now, are changes anything.  It's because I was checking, when i found out last week the doctor had given me the wrong tablets.


Kevno
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But this little saying keeps me going!!

"RENAL PATIENTS NEVER GIVE UP!!!!!!"
Sara
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« Reply #2 on: March 09, 2006, 04:11:01 PM »

I'm with kevno, double check EVERYTHING.  I have a very hard time trusting doctors as I've been screwed over too many times.  I know there's good ones out there, and that they're human, but the problems I've had with both my and my husband's doctors have been more than little "oopsy" mistakes.  For example:

I saw the same dentist for my entire childhood, up to age 18.  I went in every 6 months religiously for a cleaning/check up.  Every 6 months I would ask if I needed braces, since every one in my family has needed them.  Every 6 months I was told no, my teeth are in great shape.  My last visit was just after turning 18 and I asked again, do I need braces.  "Oh yes," I was told.  They "pointed out" in my chart where they supposedly recommended them every time I'd been in.  I blew up at the dentist and about slugged him. 

Second example, my husband had to be hospitalized before we ever met with life-threatening pneumonia.  While there they told him he was "borderline diabetic" even when his blood sugars were consistantly over 300.  After he got over pneumonia, he was sent out the door, never a followup call, never a referral to an endocrinologist.  I actually was the one to tell him he WAS diabetic.  There's no borderline here. 

Third example, after I convinced Joe he was, in fact, diabetic, we went to a primary care to start the process of getting him insulin or whatever was needed.  The doctor says, ok, you're diabetic, wrote a script for insulin and walked out the door.  No followup, no education about HOW and WHEN to use insulin, or any diet/exercise information or changes, just told him to go get insulin and start using it. 

I have about zero tolerance for doctors or doctors offices bullshitting me (excuse my French).  If there's an outright lie or lack of something important (there's a word for this but I can't think of it) we're gone.  On to another doctor.  There's too many other doctors out there to stick with one you can't trust.  If it were me, messing up on my pred dosage and messing up with the hospital like you described would send me running. 

I'm almost to that point w/ Joe's nephrologist, but I'm chalking it up to bad communication between offices for right now, but I could be pushed over the edge soon.  >:(
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Sara, wife to Joe (he's the one on dialysis)

Hemodialysis in-center since Jan '06
Transplant list since Sept '06
Joe died July 18, 2007
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« Reply #3 on: March 17, 2006, 02:50:25 PM »

You don't want to get me started on the topic of "Trust".  I could write a book.

What I saw as a child when my Dad was electrocuted was unbelievable and forever made me incapable of ever trusting anyone in the medical community. They did not treat any of his injuries for 7 days because they expected him to die!!  He came out of the coma, survived many months of poor quality care and seven surgeries.  My mother spent every day at his bedside, coming home only to shower and sleep.  SHE saved his life.  He has been disabled since, but eventually taught himself to walk again. 

About 10 years later he was having a routine endoscope w/ topical anesthetic strapped to a chair -- instrument was forced through the esophageal wall and into the chest cavity where they took a biopsy of the outside of his lung -- all the while not knowing his chest cavity was filling w/ blood and lungs collapsing.  They finally saw blood in his mouth after he kicked one of them in the leg. They did an emergency tracheotomy so sloppy that they cut the nerve to one of his vocal cords and he was unable to speak above a whisper for many months.  (He eventually had an esophageal stricture removed at Mayo Clinic.)

Dad battled pain in his damaged knee for many, many years (scar tissue and nerve damage from when most of knee cap blown out by electricity) .  He started using a cane and then a walker & crutches.   When it became unbearable he went to stronger and stronger prescription pain meds and eventually became addicted.  Finally a physical therapist went to bat for him and got a TENS unit.  He's completely off pain meds and uses the TENS unit for about 15 minutes a day.

My Dad was just in the hospital again last September -- severe diarrhea and vomiting.  He was treated for "hyper-acidity", started on Nexium and sent home.  The next night he was in another ER and was found to have bowel obstruction which could have been fatal.  He spent 2 weeks in hosp and 2 weeks in rehab getting his strength back.

My father-in-law had surgery for bowel cancer.  The day after surgery they got him out of bed and on his feet -- he weighed about 350 pounds -- they did not follow the guidelines for obese patients and did not use the support corset he should have had.  His incision ripped open and his bowels and bowel contents were spilling out onto the floor and blood squirting everywhere.  He spent 44 days in the hospital, gradually healing from the inside out, and another 2 months getting home health care nurses to change his dressing.

My brother was treated for several months for pain diagnosed as GERD -- he died less than a year later, at age 52, from renal cell carcinoma.

My brother-in-law was treated for arthritis in his feet and hands for several years before he was finally diagnosed w/ Buergers disease.  Because treatment was not started sooner he lost his leg from below the knee at age 50 and may lose the other also.

Because of chronic complaints of pain Mom was treated for GERD for several months.  She is in every three months for blood draws and rechecks -- thyroid and diabetes.  Pain complaints were dismissed as being noncompliant w/ her diet and meds.  She was admitted through the ER last month for emergency gall bladder removal  -- it was infected and necrotic.  She spent 13 days on IV (no food!) and IV antibiotics and over 2 weeks in a rehab unit on more antibiotics and getting her strength back -- she's now at home but still battling bronchitis she picked up at the rehab unit!

That doesn't even touch on the incompetence I've encountered in my own health care, or what we have had to battle in getting my husband good care for his PKD and eventual dialysis.

No one in my family will take any medication without discussing it with the pharmacist and/or with me, and no one will have any medical procedure done without getting a second or third opinion.  I and my sister trust no one in the medical community and are always suspicious of every diagnosis, every treatment and every recommendation.
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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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« Reply #4 on: August 21, 2006, 07:23:44 AM »

It's as bad here in the UK too.  We've had more than our share of incompetence and negligence over the past few years.  One of the dangerous things that's happened here is in regards to diabetes.  The way we read blood sugars is different here.  Until a couple of years ago any blood sugar reading between 4 and 9 was considered perfectly normal.  Now it's anything between 4 and 7 which makes 90% of the population "diabetic".  What makes this worse is that our corrupt government PAYS doctors to "diagnose" people with "diabetes".  Now, they're all in a panic and describing us as a nation of diabetics.  Absolutely crazy.  I'm afraid, although doctors keep my son alive I mortally hate them to the extent that they want to check my kidneys out and they've been told politely to go away in short, sharp, jerky movements >:D  I personally want nothing to do with them and haven't been anywhere near a doctor for years.  Another sore point is dentists.  No.  I'm not going to get started on that.  I'll be here all day ::)
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kevno
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« Reply #5 on: August 21, 2006, 08:39:38 AM »

I know Python I live in the UK too ;)
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But this little saying keeps me going!!

"RENAL PATIENTS NEVER GIVE UP!!!!!!"
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Bobby the Python

« Reply #6 on: August 21, 2006, 11:40:41 AM »

 ;) ;D
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Michelle
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« Reply #7 on: August 22, 2006, 01:51:41 PM »

I could be here all day on this one but the most serious is the most recent and I still cannot believe how this has messed with my head.
I was informed I couldn't have a transplant due to calcified vessels some 4 years ago and given completely dire prognosis etc. I have since had a barrage of tests which have confirmed I have no significant calcification and I could have been on the list all along.
I was angry about this and have received pyschological support over it. However today the biggest suprise to date came when I was activated onto the transplant list but also told that calcification isn't a bar to having a transplant or at least attempting one as if it seems bad when they get there they stop. I was categorically told they couldn't tell until they clamped the vessels and it was do or die literally at that point.
Not one word of what I was told 4 years ago is true. I have lived with the knowledge that I couldn't be listed and if I was it was likely to kill me all this time and no one realises how that can affect a person and subsequently how it then feels that you have been living a sort of lie.
Now I am activated on the list it is still down this one surgeon won't do it but everyone else is completely happy so he has damaged his reputation but I somehow don't think he has as much as my mental health. :-[
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mallory
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« Reply #8 on: August 23, 2006, 09:55:03 AM »

Wow, all of these posts are so scary.  I've been pretty lucky, and currently I do have good doctors that I trust.  But, I still find that they forget things, or don't communicate with each other.  I'd have to say that I trust them but I make sure I've always done my homework and I double check everything they do.  After all, if they mess up, it's me that's going to die, not them, so I'm very careful.

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Sometimes the light’s all shinin’ on me;
Other times I can barely see.
Lately it occurs to me what a long, strange trip it’s been.
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« Reply #9 on: August 24, 2006, 12:19:31 AM »

You know what is so sad? I never considered this an issue of trust.
I simply assume that everybody is well-meaning and completely
incompetent. If I am released from hospital, I always call the unit
and tell them I am returning. I never rely on hospital staff.

Likewise, I need a balloon angioplasty. Like yesterday. My neph.
is away until August 31. So I called Interventional Radiology myself,
reminding them that I need general anaesthesia and then placed
8 other calls to make sure it will be performed next week.
Meanwhile, I have "ordered" a pre-K for my next dialysis to make
certain I am not recirculating too much and eating "the white diet"
(white bread, rice and noodles)
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Zach
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"Still crazy after all these years."

« Reply #10 on: August 24, 2006, 10:52:24 AM »

Remember trust, but verify!!        :o
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Uninterrupted in-center (self-care) hemodialysis since 1982 -- 34 YEARS on March 3, 2016 !!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
No transplant.  Not yet, anyway.  Only decided to be listed on 11/9/06. Inactive at the moment.  ;)
I make films.

Just the facts: 70.0 kgs. (about 154 lbs.)
Treatment: Tue-Thur-Sat   5.5 hours, 2x/wk, 6 hours, 1x/wk
Dialysate flow (Qd)=600;  Blood pump speed(Qb)=315
Fresenius Optiflux-180 filter--without reuse
Fresenius 2008T dialysis machine
My KDOQI Nutrition (+/ -):  2,450 Calories, 84 grams Protein/day.

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Bajanne
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« Reply #11 on: August 28, 2006, 12:13:36 AM »

Remember trust, but verify!!        :o
That sounds like the motto on the Barker family (my family) coat of arms.  It is 'Fide, sed cui vide'.  A rough translation is 'Trust, but see the one in whom you trust'  In other words, don't trust blindly.
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angieskidney
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« Reply #12 on: August 28, 2006, 01:35:31 AM »

Remember trust, but verify!!        :o
That sounds like the motto on the Barker family (my family) coat of arms.  It is 'Fide, sed cui vide'.  A rough translation is 'Trust, but see the one in whom you trust'  In other words, don't trust blindly.

Oh very good motto! *thinks of adding it somewhere in sig .. then realizes .. no room*  :-[

Good words to live by though :)
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diagnosed ESRD 1982
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