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Author Topic: I will not live life as a zombie  (Read 1211 times)
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there's no place like home

« on: April 02, 2016, 10:45:54 PM »

Dx'd with CKD in 2004
Dx'd with CHF in 2010
Kidney Failure, hypervolemic shock, put in a medically induced coma in July, 23 2015 - Aug 12, 2015  started dialysis while in ICU, had a bad reaction to "equine derived products" during dialysis.
CVC put in L side, 08/10/2015.
CVC revision 08/31/2015
CVC revision 10/21/2015
Started in center dialysis at Davita Aug 13, 2015
Fresenius September 21, 2015
PD cath inserted October 06, 2015
Hospitalized for potential incarcerated hernia OCT 21 - 24 2015
Peritonitis and PD cath removal November 8 - November 22 2015
Start date of PD training 11/09/2015

Quit going to dialysis 12/16/2015
AVF 01/12/2016
CVC removal 01/29/2016
restarted dialysis 03/31/2016

Told that in able for me to be trained for home hemodialysis I would have to show "compliance" in center for three months.  I am angry and resentful at this treatment from the dialysis "provider" community.
There is a serious communication breakdown between the dialysis center, my nephrologist, and the hospitals, whether this is on purpose or just corporate climate, I don't know.

I have been becoming increasingly intolerant to dialysis, each time I go I suffer from frequent IDH and debilitating hangovers, that last anywhere from 16 - 28 hours. Each time is worse than the last.

EDITED - Moved Topic - CharlieB53 - Moderator 3 Apr 2016
« Last Edit: April 03, 2016, 05:47:46 AM by Charlie B53 » Logged

Life's a garden - dig it

Amanda Petty
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Posts: 4386

When all else fails run in circles, shout loudly

« Reply #1 on: April 03, 2016, 02:53:09 AM »

Welcome to the site apetty


I'm sorry you had to go through all this. Can I ask if you are retaining fluid and/or if you are still producing urine?

Take care, Cas

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
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« Reply #2 on: April 03, 2016, 08:06:33 AM »

I am so sorry to hear of all your suffering.  It is an eerie reminder  of what I went thru when I started HD in 2012.  I switched to 2 centers and the the 3rd was the charm.   Huge difference in the way they respected the patients and sincerely cared.   So, If you can shop around for another center.    It sounds like they are treating you too aggressively  and not giving you the right prescription.   Reminder, you are loosing vital blood, proteins, minerals, trace minerals, and vitamins with every treatment and it sounds like they are draining you of your life force. In my experience the center that was aggressive cared more about how  I looked on paper with regards to clearance and hemoglobin regardless of the fact that I was being hospitalized every week and dying a slow and painful death at their hands. 

Does the center you go to have a patient advocate?  Maybe you can recruit one of your family members to accompany you to your clinic and speak up for you.   or perhaps check with the dialysis patient advocate group to see if they can help you.   They are denying you homedialysis which is a gentler treatment and sounds much more suitable for you.  Below is an article from the advocacy about Home Hemo that might be convincing to your doctor.


Best Wishes!   
Charlie B53
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« Reply #3 on: April 03, 2016, 09:09:11 AM »

Welcome to IHD.  From these posts already hopefully you will see that we take all members seriously as we CARE.   Many have already been through some of the trials and trauma that you are being subjected to now.    There is Hope, and there is Clinics that do provide much better care than you now have.   The problem is they do not advertise.   And it can be a long series of trial and error until you find the one Clinic that does care, listens and treats you well.

Take advantage of the Advocates, Call, write, Go if near enough.  If you have any paper that can document your poor treatment be sure to take that , or copies, with you.  Never give up your originals.

How large is your City, or metro area, are there other Clinics within a reasonable distance.   I only have experience with PD at a DCI Clinic, which is a not-for-profit and even though they have to keep an eye on costs the friendly helpful attitude of all the staff makes a world of difference.   It really does feel like that Care about every Patient.   If there is a DCI anywhere within your area I seriously recommend that you at least call them, ask about any requirements they may have for a beginner to receive training for home hemo.

There is always another way.  We often have to search to find it.

Take Care,

Charlie B53

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« Reply #4 on: April 03, 2016, 11:15:49 PM »

 :welcomesign;  Welcome, apetty!

Sorry you are going thru such a terrible time with doctors and staff. I hate to hear about patients being mistreated and not listened to. I don't know if this will help or hurt or if this is a dumb idea but maybe if you printed some literature you've read about dry weight and blood pressure and took it to them, they will take you seriously. Maybe it would be a way to let them know HOW MUCH you know (so they can't blow you off as if you don't know anything) and would also serve to show your willingness to be an active participant in your own health care. Show 'em what you know! Good luck! Meantime, hope you will find comfort in knowing that you are among new friends here!

Husband has ESRD with Type I Diabetes -Insulin Dependent.
I was his carepartner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
Bill Peckham
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« Reply #5 on: April 04, 2016, 09:16:38 AM »

I'm glad you've joined IHD, I'm sure most of the members here know just what you are describing.

I'm reading a book right now, The End of Average by Todd Rose that might help you understand why the US Dialysis System is such a bad fit for you personally. You are not the problem the problem is the System was created for people who don't actually exist.


http://www.billpeckham.com  "Dialysis from the sharp end of the needle" tracking  industry news and trends - in advocacy, reimbursement, politics and the provision of dialysis
Incenter Hemodialysis: 1990 - 2001
Home Hemodialysis: 2001 - Present
NxStage System One Cycler 2007 - Present
        * 4 to 6 days a week 30 Liters (using PureFlow) @ ~250 Qb ~ 8 hour per treatment FF~28
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