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Author Topic: please help me im scared  (Read 46014 times)
willowtreewren
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My two beautifull granddaughters

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« Reply #25 on: December 30, 2013, 08:22:38 AM »

Just an update. GLM is in the hospital for her heart. I hope they get it all sorted out for her....

 :cuddle;
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Wife to Carl, who has PKD.
Mother to Meagan, who has PKD.
Partner for NxStage HD August 2008 - February 2011.
Carl transplanted with cadaveric kidney, February 3, 2011. :)
obsidianom
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« Reply #26 on: December 30, 2013, 09:56:09 AM »

I am glad she went in. I sent her a private message practically begging her to go to the ER and ask for cardiology immediatly.  She was actually scaring me with her symptoms which suggested cardiac issues. Remember everyone, just because you are on dialysis or have renal disease, dont forget there can be other issues superimposed over that. Cardiac problems are very common with renal failure/dialysis.
I hope she is getting a good thorough work up. I wish her the best.
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My wife is the most important person in my life. Dialysis is an honor to do for her.
NxStage since June 2012 .
When not doing dialysis I am a physician ,for over 25 years now(not a nephrologist)

Any posting here should be used for informational purposes only . Talk to your own doctor about treatment decisions.
jeannea
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« Reply #27 on: December 30, 2013, 11:05:31 AM »

I hope they can figure things out. She sounded like she was really suffering.
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okarol
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« Reply #28 on: December 30, 2013, 04:25:13 PM »

 :grouphug; :grouphug; :grouphug;
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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.
Now needs a new kidney, 7 yr transplant lost due to rejection.
She started PD Sept. 2013
Searching for a living donor using social media, friends, family.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Jenna is an artist, she loves music, is a fan of ComicCon, and has been writing stories since she was little.
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
si
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« Reply #29 on: December 30, 2013, 08:07:04 PM »

GLM, hope you recovery very soon, be strong , fighting.:grouphug;
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Misery is a form of imagination to the future and thinking back to the pass.
To stay still on the only present time, misery can't creep into our mind.
tattooscott
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« Reply #30 on: January 01, 2014, 11:09:02 AM »

 ;D you have all the right to control your treatment and I mean every aspect off your treatment I have bad cramps to so when I feal just the slightest twing I tell them to slow it down and I have learned about the machine so I know what buttons do what and I watch them very close specially if a new hire starts they think they everything iv only been doin this for 11 months now I have also figured it out that being loud not rude but you better lisen to me loud lol  will hurry them up don't worry its all about you but you also have to have the same attitude at home  by changing every bad diet habit you have  diligence is the  OUR only key to life im scared to as a lot of us have been and still are I think..... I only 45 yrs young  I sure hope I have helped an some sort of a way ....I not to good at this typing stuff
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MaryJoe
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« Reply #31 on: January 01, 2014, 04:06:30 PM »

GLM - I'm sorry to hear you are I the hospital, but glad that your symptoms will be investigated and hopefully resolved.  I've got my fingers crossed, have thrown salt over my left shoulder, rubbed my lucky rabbit's foot, sent positive, healing energy your way and offered up a prayer or two that the tests will give you a definitive answer about what is causing your symptoms.  After all that activity I'm exhausted, but I hope you are feeling better!!!

 :cuddle;
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Whether the glass is half empty or half full is not as important as being thankful there's a glass and grateful there's something in it.
paris
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« Reply #32 on: January 01, 2014, 05:56:12 PM »

She has 8 kilos removed in 2 days. She says she will be there for a week as they continue to remove the fluid around her heart. I think she is feeling some relief.
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It's not what you gather, but what you scatter that tells what kind of life you have lived.
Hazmat35
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« Reply #33 on: January 03, 2014, 06:56:10 AM »

wow, 8 kilos in two days, that is an awful lot.  That is a lot of wear and tare on one's body. 

We wish you the best and pray from a quick and speedy recovery.  Maybe when you go back to your clinic, they will listen to you this time.
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Brother Passed away - 1990 - Liver Disease
Diagnosed w/ Polycystic Kidney Disease - 1998
Mother passed away - Feb. 1999 - PKD
Sister passed away - Feb. 2006 - PKD
AV Fistula / Upper Left Arm - September 2009
Father passed away - September 2009
In-Center Hemo Dialysis - April 2010
Broken Knee Cap - January 2015
Diagnosed w/ A-Fib October 2017
Surgery to repair Hiatal Hernia 2018
Multiple Fistula Grams / Angioplasty's since then!


Hating Dialysis since Day 1 and everyday since then!!!!  :)
MooseMom
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« Reply #34 on: January 03, 2014, 08:51:02 AM »

 :cuddle;  Get well soon, GLM!
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
gothiclovemonkey
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« Reply #35 on: January 07, 2014, 06:10:47 PM »

im baaaaaaaaaaaaaaaaaaaaaack!~
Thank you all for the well wishes!

I did go to ER at the urging of a few fine folks here, and they transfered me to a bigger hospital.
I have had 12.5 kilos removed,
they said i had a lot on my heart. i still have some but not much left

i am hopefully getting a new set of drs (the ones i had at the hospital) i just have to tell me current idio... i mean dr that i dont want him anymore.

had davita listened to me, this wouldnt have happened. im pretty irked at them.
im definitely filing a complaint, some people think i should sue... but im not really the suing type. but i tell you, if they give me ANY crap when i go in thursday, i think ill probably consider it...
they do NOT want to irk me further. they nearly killed me.
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"Imagine how important death must be to have a prerequisite such as life" Unknown
HemoDialysis since 2007
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LISTED ACTIVE! 11/14/11 !!!
Deanne
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« Reply #36 on: January 07, 2014, 07:33:47 PM »

I'm very glad and relieved to see you back! It sounds like you feel better overall.  :clap;
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Deanne

1972: Diagnosed with "chronic kidney disease" (no specific diagnosis)
1994: Diagnosed with FSGS
September 2011: On transplant list with 15 - 20% function
September 2013: ~7% function. Started PD dialysis
February 11, 2014: Transplant from deceased donor. Creatinine 0.57 on 2/13/2014
willowtreewren
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« Reply #37 on: January 08, 2014, 04:46:03 AM »

Yay! GLM is BAAAACK!

 :2thumbsup; :2thumbsup;

I'm glad you are out of the hospital. And I bet you are feeling much, much better!

Aleta
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Wife to Carl, who has PKD.
Mother to Meagan, who has PKD.
Partner for NxStage HD August 2008 - February 2011.
Carl transplanted with cadaveric kidney, February 3, 2011. :)
cdwbrooklyn
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« Reply #38 on: January 08, 2014, 11:58:25 AM »

When I was in center and left to do NxStage, 20 pounds of water was removed and my blood pressure dropped.  I was taken off of blood pressure pills and praise God I have not taking them since.  Its now going on three years since Iíve joined NxStage.  I believe that in-center machine sometimes does not remove all the water and it starts to accumulate. Iím not suggesting that you do NxStage, Iím just saying that for me Nxstage really help me remove a lot of water.  I now can remove water five times a week instead of three times.  Also, I felt a lot better and wanted to sue the center but Iíve already left to do NxStage.  Anyhoo, I very happy that it was just water and you are doing well.   :clap;

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Dailysis patient for since 1999 and still kicking it strong.  I was called for a transplant but could not get it due to damage veins from extremely high blood pressure.  Have it under control now, on NxStage System but will receive dailysis for the rest of my life.  Does life sucks because of this.  ABOLUTELY NOT!  Life is what you make it good, bad, sick, or healthy.  Praise God I'm still functioning as a normal person just have to take extra steps.
Wat76
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This Too Shall Pass

« Reply #39 on: January 08, 2014, 12:15:23 PM »

So happy you are feeling better. We know our bodies and we have to speak up.
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PKD: PD started in February 2011.
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si
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« Reply #40 on: January 09, 2014, 02:10:52 AM »

 :bandance; :2thumbsup;
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Misery is a form of imagination to the future and thinking back to the pass.
To stay still on the only present time, misery can't creep into our mind.
lola
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« Reply #41 on: January 09, 2014, 02:20:51 AM »

I am so glad your feeling better  :cuddle; :grouphug; :grouphug;
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gothiclovemonkey
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« Reply #42 on: January 09, 2014, 06:11:14 AM »

holy crap i slept throughout the entire night! i havent done that in soooo long! (without medicine assistance that is!)
I cant believe how well im breathing, sleeping, feeling!
Im planning on taking full advantage of feeling so nice very soon! I am going to go to the ymca and hopefully get set up with them. Im still a bit weak, and the weather is not so kind to the RA but other than that, im feeling FANTASTIC compaired to the last year!

Thank you all for the kind thoughts and prayers! <3
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"Imagine how important death must be to have a prerequisite such as life" Unknown
HemoDialysis since 2007
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LISTED ACTIVE! 11/14/11 !!!
Wildrose
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« Reply #43 on: January 09, 2014, 11:34:30 PM »

I am sooo glad you went to the ER and that you are alright and feeling better!! It is important to listen to our bodies, especially if you had the same problem before of gaining fluid not in the usual/visible places.  A few months back I went from always seeing flud gain in my ankles, to ending up in the hospital because of fluid overdose that never showed up where it usually did.... so I didn't realize I had it until it was becoming a problem.
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1995 - Diagnosed with 'some kind' of kidney disease during first pregnancy at 16 yrs old due to excess protein in urine
1998 - Biopsy diagnosis of IGA Nephropathy at age 18
2007 - Successful second pregnancy, creatnine of 1.8 something
2009 - Successful third pregnancy creatnine of 2 something
2009-November of 2011 - Somehow went from Creatnine of 2 something to 5.43
November 2011 - Diagnosed with End Stage Renal Disease
3/28/12 - Started Peritoneal Dialysis
5/21/12 - Ended up in hospital for 5 days with PD fluid leaking through hole in diaphragm to right lung
5/25/12 - IJ catheter placed, 5/26/12 - First in center hemo treatment
6/15/12 - Back on PD for three weeks and hemo at same time, 7/7/12 - PD fluid leaked again, off PD and still on hemo, 7/15/12 - on PD again and hemo
7/23/12 - chest xray shows fluid leak again, off PD for one month with possible thoracic surgery in future to fix hole in diaphragm. 5.70 creatnine
8/7/12 - 24 hr urine test shows improved kidney function. 3.47 creatnine - Dr reduced hemodialysis from 3x's to 2xs a week.
MaryJoe
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« Reply #44 on: January 11, 2014, 05:43:27 PM »

Oh  glm, I was so happy to see your posts! Glad they were able to figure it out, and that you are feeling so much better. Follow through with your plan to join the Y. Some mild activity will actually help the RA, and you'll feel a wonderful sense of accomplishment each time you go. My Y has a program called Joints In Motion that's done in a therapy pool 4 ft deep with 95* water. It focuses on range of motion, balance and core strengthening. Very gentle and the warm water is heavenly! I told them if it hurt I wouldn't stay with it and so far I've been able to increase my activity level gradually and comfortably. I hope it works as well for you.

Anyway, welcome back! Now you can start to really enjoy your new married life!  ;D
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Whether the glass is half empty or half full is not as important as being thankful there's a glass and grateful there's something in it.
cassandra
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When all else fails run in circles, shout loudly

« Reply #45 on: February 06, 2014, 03:19:37 PM »


   :bandance;        :cheer:



Welcome back to 'normal'


Love, Cas
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
       still on waitinglist, still ok I think
Whamo
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« Reply #46 on: April 09, 2014, 09:00:44 PM »

I went through a similar episode a few months ago.  My problem was constipation.  Once I had an enema, and cleaned out my stomach with lactulose (diarrhea) therapy, I felt fine.  For me, I was full of fluid, and had a hard time breathing, and it felt like my stomach was going to burst.  Tonight, I dosed away at my chair, and woke up in a panic.  My hearing was gone.  Once I drained (I do home machine dialysis), I was back to normal, but it was scary.  You don't realize how much you enjoy sound until its gone.
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hoomirfee
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« Reply #47 on: May 24, 2014, 06:46:54 PM »

glad to hear you`re doing better. i`ve only been doing this for 6 months and i`m starting to think the nature of these places is for the staff not really fr us, the patients.
good  luck!!
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Speedy1wrc
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« Reply #48 on: May 26, 2014, 02:42:08 PM »

I had a similar issue awhile back.

The issue was a balance between fluid removal and BP medicine. I couldn't take fluid off because BP during treatment was dropping too low. Trying to force it off wasn't working and I felt awful. I too ended up in the ER for breathing issues and that was a mess. They thought it was cardiac issue even though I kept telling them it was fluid overload. It was 6 hours before they agreed to let a nephrologists see me. She agreed it was fluid overload and convinced them to dialyze me. It took another 5 hours till they got that set up. Afterwards I felt better but but had to argue to let them release me. Grr.

Long story short, I got a new nephrologist and she is wonderful. New center and new nurse too. All are awesome. The nephrologist, nurse and I work together to plan my treatment.

We ended up lowering my BP medicine to allow me to get more fluid off. Less fluid meant lower BP and feeling a whole lot better. Ultimately my DW is 5k less than before and I am off 2 meds, down to only one.

So very glad you're back and feeling better. Hopefully with new Dr's you can come up with  a regime that works for you.
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DeadAlive
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« Reply #49 on: June 21, 2014, 01:41:30 PM »

Jesus ... i feel sorry for you. i know exactly how you feel ... ive had it for 10 years. It got so bad for me i felt i could no longer face "those  people" .... i moved to a different dialysis unit .... problem is the next dialysis unit also has some of "those people".

The only way to dodge it all is to do your home training and get set up at home so you can dialise at home and be in control of your own treatment .... with no nasty/irrelevant/incorrect/offensive comments flying at you.

I wish you all the best gothiclovemonkey!! stay strong, don't talk to the people who are bad ... just those who are good.

I have moved round 6 dialysis units in 10 years due to "those people" making me feel too uncomfortable to stay there.
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If it wasn't for kidney failure i'd be whupping Lewis Hamilton in F1, Be in business with Richard Branson, Be married to Beyonce and have children!
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