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Author Topic: Don't ya think you need to know  (Read 12226 times)
boxman55
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« on: January 29, 2009, 02:38:48 PM »
Hi all, I went to an appointment I had with the transplant surgeon the other day. I have one every year to stay on the waiting list. Well he tells me that sometime before my last stress test I had a HEART ATTACH! My stress test was 3 months ago. Don't ya think I should have been told sooner. Now they want to do a CT scan of the abdomen to check blood flow then they want to do a cardiac cath to check blood flow to the heart. In the mean time I am still accruing time on the list but I am inactive. They had me inactive for all that time too. I mean come on.. You would think you need to know that too... I was both pissed and now I worry all the time. Geez  I am only 53...Boxman
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"Be the change you wished to be"
Started Hemodialysis 8/14/06
Lost lower right leg 5/16/08 due to Diabetes
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kimcanada
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« Reply #1 on: January 29, 2009, 02:45:38 PM »
That sucks, I often wonder how the medical workers would feel about being treated the way that all (or most) treat dialysis patients...

As long as you are no "trouble" to them all is "well"... can you even imagine not telling a cancer patient what is happening with their treatment


GIVE ME A BREAK

 :cuddle; Boxman, I am so sorry about the shits that you have to deal with

(I had to add words and correct everything, I think I was angry when I wrote this )
« Last Edit: January 29, 2009, 02:57:23 PM by kimcanada » Logged
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2_DallasCowboys
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« Reply #2 on: January 29, 2009, 02:48:53 PM »
Hi,

Sorry to see that you received this surprise news, especially
like this.  Of course you should have been informed - sometimes
the way the whole damn medical system handles itself is
so maddening!!
Did however performed the stress test let your primary care
dr know about this?
I would be asking an awful lot of questions

Anne
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willieandwinnie
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« Reply #3 on: January 29, 2009, 02:50:04 PM »
:cuddle; boxman. That really sucks. Why in the world would they not call and tell you  :banghead; you should of been seen by someone as soon as they even thought you had a heart attack. Hope all the test go well for you. Len said that the cardiac cath was really cool to watch. I'm glad you are still accruing time during this. My thoughts and prayers are with you and I know you will let us know how things are going. You are special to us boxman.  :cuddle;
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"I know there's nothing to it, but I want to know what it is there's nothing to"
breezysummerday
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« Reply #4 on: January 29, 2009, 03:08:21 PM »
christ on a stick!!

You should have been told sooner, somewhere down the line.
From now on after every test, ask when can you can expect results.

I was wondering where you were at.  See, complete strangers worry about you
too.  take care....deborah
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MandaMe1986
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« Reply #5 on: January 29, 2009, 03:23:58 PM »
I can't believe they didn't tell you!   :banghead;  They should have told you the secound they found out, and should have been runnin test all this time!  And yes they should have told you that you were inactive, you have a right to know! Grrr I am mad for you.  Want me to go beat them up for  ya?  :boxing;
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Blessed are the poor in spirit, for theres is the kingdom of heaven.
Blessed are they who mourn, for they will be comforted.
Blessed are the meek, for they will inherit the land.
Blessed are they whohunger and thirst for righteousness, for theywill be satisfied.
Blessed are the merciful, for they will be shown mercy.
Blessed are the clean of heart, for they will see God.
Blessed are the peacemakers, for they will be called children of God.

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boxman55
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« Reply #6 on: January 29, 2009, 04:16:38 PM »
I have been taking these anti depressant pills and they got me in a state of "whatever" I should be more pissed I want to be more pissed but, I have been in a state of "who cares" and I can't find the muster to scream and chock someone. I guess i will cut MandaMe loose on them...Boxman
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"Be the change you wished to be"
Started Hemodialysis 8/14/06
Lost lower right leg 5/16/08 due to Diabetes
Sister was denied donation to me for medical reasons 1/2008
kellyt
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« Reply #7 on: January 29, 2009, 04:26:51 PM »
That's total crap, Boxman.  They absolutely should have told you.  Three months ago?  Geeze, something else could have happened in that time frame.  At least they could have put you on a preventative medication, aspirin or something.  That is infuriating!

I'm sorry you're going through this.  Demand they schedule all your tests immediately and get back on "the list".
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1993 diagnosed with glomerulonephritis.
Oct 41, 2007 - Got fistula placed.
Feb 13, 2008 - Activated on "the list".
Nov 5, 2008 - Received living donor transplant from my sister-in-law, Etta.
Nov 5, 2011 - THREE YEARS POST TRANSPLANT!  :D
MandaMe1986
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« Reply #8 on: January 29, 2009, 05:36:02 PM »
Anytime Boxman just let me know  :)
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Blessed are the poor in spirit, for theres is the kingdom of heaven.
Blessed are they who mourn, for they will be comforted.
Blessed are the meek, for they will inherit the land.
Blessed are they whohunger and thirst for righteousness, for theywill be satisfied.
Blessed are the merciful, for they will be shown mercy.
Blessed are the clean of heart, for they will see God.
Blessed are the peacemakers, for they will be called children of God.

Matthew 5:3-9
G-Ma
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« Reply #9 on: January 29, 2009, 05:41:31 PM »
What?????????? OMG...I think we are all screaming for you........your Dr. should have told you immediately.  This is absolutely unacceptable.
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Lost vision due to retinopathy 12/2005, 30 Laser Surg 2006
ESRD diagnosed 12/2006
03/2007 Fantastic Eye Surgeon in ND got my sight back and implanted lenses in both eyes, great distance & low reading.
Gortex 4/07.  Started dialysis in ND 5/4/2007
Gortex clotted off Thanksgiving Week of 2007, was unclotted and promptly clotted off 1/2 hour later so Permacath Rt chest.
3/2008 move to NC to be close to children.
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Aug 5, 08, trained NxStage and Home on 9/3/2008.
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Back to RAI-Latrobe In Center. No home hemo at this time.
GOD IS GOOD
Sluff
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« Reply #10 on: January 29, 2009, 06:07:02 PM »
Totally ridiculous. I feel ya Boxman.
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Romona
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« Reply #11 on: January 29, 2009, 06:12:33 PM »
 :grouphug; I think you should have been told.
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monrein
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« Reply #12 on: January 29, 2009, 06:45:05 PM »
Hard to take Boxman...to be told so late and of course the news itself.   Please be sure to follow up on whatever you can do now, if there's any kind of problem at least it's better to know about it and be able to attend to it than just have it quietly explode.   :grouphug;
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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
Second trx doing great so far...all lab values in normal ranges
okarol
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« Reply #13 on: January 29, 2009, 06:58:10 PM »

Someone needs an ass-kicking! :Kit n Stik;
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
kitkatz
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« Reply #14 on: January 29, 2009, 08:10:02 PM »
I agree someone needs an ass kicking!  :Kit n Stik; :Kit n Stik;
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Remember your present situation is not your final destination.

Take it one day, one hour, one minute, one second at a time.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
tamara
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WOO HOO NEW KIDNEY PEEING !!!(Transplant 23/10/07)
« Reply #15 on: January 29, 2009, 08:21:05 PM »
That definitely sucks !!!

Bring on the asskicking Boxman   :Kit n Stik;
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Dialysis Sucks and Transplants Don't.................So Far Anyway !!!!!
Mimi
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« Reply #16 on: January 29, 2009, 09:07:20 PM »
Good grief, Box what a mess.  They put you on pills that make you feel 'whatever'.  Then you have a heart attack and they wait three months to tell you.  And when they do tell you the pills youake make you feel 'who cares'.  Wake up man, if you can't kick ass the rest of us can.
You must take better care of yourself.

Love, Mimi
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TynyWonder
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« Reply #17 on: January 30, 2009, 01:33:15 AM »
Boxman,

2 questions................first of all, did you ask WHY they did not tell you before now?   Second of all, what are the "whatever" pills they have you on?   (I might need to ask for a script of those is why I ask)   I feel  :urcrazy; more than I would like too!   :rofl;
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Diagnosed with ESRD-November 2006
I have had 2 fistuals-neither one worked
I have had 2 grafts the last one finally "took"
I had 3 different catheters from Nov. 06 - Dec. 08
Got on the transplant list - Halloween Day 2008

You can easily judge the character of others by how they treat those who they think can do nothing for them.    I BELIEVE THIS TO BE SOOOOO TRUE!
Wattle
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« Reply #18 on: January 30, 2009, 02:39:02 AM »
 :boxing; :boxing;  and   :Kit n Stik;   :Kit n Stik;


Phone through for results from now on. Don't trust them to have your best interest at heart.

GGGrrrrrrrrrr  I am really mad for you!!
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PKD
June 2005 Commenced PD Dialysis
July 13th 2009 Cadaveric 5/6 Antigen Match Transplant from my Special Angel
boxman55
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« Reply #19 on: January 30, 2009, 06:00:39 AM »
I am late get ready for D I will answer when I get home. Thanks for all your concern...Boxman
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"Be the change you wished to be"
Started Hemodialysis 8/14/06
Lost lower right leg 5/16/08 due to Diabetes
Sister was denied donation to me for medical reasons 1/2008
paul.karen
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« Reply #20 on: January 30, 2009, 06:12:54 AM »
Seems the only reason you even know this news NOW is cause you had an appt.  If you hadnt had this appt they may have never told you?

And can you have a heart attack and not even know it.
Maybe get a second opinion, and i only say this cause you are on the list.  It would be a double tragedy if they had a kidney for you and passed you by due to some FALSE information.  Just a different viewpoint.
Wishing you the best Boxman.
P&K
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Curiosity killed the cat
Satisfaction brought it back

Operation for PD placement 7-14-09
Training for cycler 7-28-09

Started home dialysis using Baxter homechoice
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Chris
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« Reply #21 on: January 30, 2009, 06:38:22 AM »
I agree with okarol, someone needs a real long ass kicking at that transplant center. That is important information that needs to be known and shared and then not telling you that your on the inactive list, wtf! Sluff is close, can we send him to kick some ass while he drives his Harley up their ass?
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Diabetes -  age 7

Neuropathy in legs age 10

Eye impairments and blindness in one eye began in 95, major one during visit to the Indy 500 race of that year
   -glaucoma and surgery for that
     -cataract surgery twice on same eye (2000 - 2002). another one growing in good eye
     - vitrectomy in good eye post tx November 2003, totally blind for 4 months due to complications with meds and infection

Diagnosed with ESRD June 29, 1999
1st Dialysis - July 4, 1999
Last Dialysis - December 2, 2000

Kidney and Pancreas Transplant - December 3, 2000

Cataract Surgery on good eye - June 24, 2009
Knee Surgery 2010
2011/2012 in process of getting a guide dog
Guide Dog Training begins July 2, 2012 in NY
Guide Dog by end of July 2012
Next eye surgery late 2012 or 2013 if I feel like it
Home with Guide dog - July 27, 2012
Knee Surgery #2 - Oct 15, 2012
Eye Surgery - Nov 2012
Lifes Adventures -  Priceless

No two day's are the same, are they?
MandaMe1986
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« Reply #22 on: January 30, 2009, 07:40:31 AM »
Quote from: paul.karen on January 30, 2009, 06:12:54 AM
Seems the only reason you even know this news NOW is cause you had an appt.  If you hadnt had this appt they may have never told you?

And can you have a heart attack and not even know it.
Maybe get a second opinion, and i only say this cause you are on the list.  It would be a double tragedy if they had a kidney for you and passed you by due to some FALSE information.  Just a different viewpoint.
Wishing you the best Boxman.
P&K

You can have a heart attack without knowing it. If it is mild enough it may seem like heart burn or a bad cold.  I had a causion who thought he had the flu and his wife made him go to the ER thinking he might have  something else treatable.  And found out he was having a series of minor heart  attacks. It was crazy. 
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Blessed are the poor in spirit, for theres is the kingdom of heaven.
Blessed are they who mourn, for they will be comforted.
Blessed are the meek, for they will inherit the land.
Blessed are they whohunger and thirst for righteousness, for theywill be satisfied.
Blessed are the merciful, for they will be shown mercy.
Blessed are the clean of heart, for they will see God.
Blessed are the peacemakers, for they will be called children of God.

Matthew 5:3-9
boxman55
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« Reply #23 on: January 30, 2009, 04:10:17 PM »
I was told the same thing MandaMe. You can have one and not know it but then when is the next one coming. I put a call into the transplant clinical coordinator to discuss this further. I have my CT of the abdomen on Tuesday then they will schedule the cardiac cath. Is it just me shouldn't the cardiac cath be more important right now. Oh well they know what they are doing  ::)

Tyny, I take citalopram 20mg (depression) I have had them in my med cabinet since 9/08 but I just started taking them. I have been on them for about 6 weeks...Boxman
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"Be the change you wished to be"
Started Hemodialysis 8/14/06
Lost lower right leg 5/16/08 due to Diabetes
Sister was denied donation to me for medical reasons 1/2008
MandaMe1986
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« Reply #24 on: January 30, 2009, 05:14:46 PM »
I need that antidepressent too :2thumbsup; might help me with my anger issues haha.

But hang in there hopefuly the doctors will get you all figured out and get you back on a transplant list.  Keep us updated
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Blessed are the poor in spirit, for theres is the kingdom of heaven.
Blessed are they who mourn, for they will be comforted.
Blessed are the meek, for they will inherit the land.
Blessed are they whohunger and thirst for righteousness, for theywill be satisfied.
Blessed are the merciful, for they will be shown mercy.
Blessed are the clean of heart, for they will see God.
Blessed are the peacemakers, for they will be called children of God.

Matthew 5:3-9
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