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Author Topic: No home hemo for 1-3 months..  (Read 2822 times)
tyefly
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This will be me...... Next spring.... I earned it.

« on: August 27, 2009, 06:41:20 PM »

Well I have learned from my new doctor (my old doctor retired a few weeks ago and I was given a new doctor)  that I can not start home hemo until I am stable in-center for at least 30 day up to 3 months....  I thought that I would be able to start directly with nxstage and the training...   I am not on dialysis yet.... getting closer  but I am working on a transplant as well.....   I did not want to go in -center  because it seems like I will certain fail  and crash and all of that stuff...  I don't want to have all of those things happen to me....  After reading so much here and other places it seems like starting dialysis is so difficult and seems like everyone feels so bad and has so many problems.....
   And I don't understand why I cant start nxstage right from the first....my other doctor said I could, but this doctor has different ideas.... In-center to me is so scary and seems so unhealthy I hate that for my self.....   No offense to anyone who does in-center.......    I wish I could get a transplant right now....  I wish my GFR was higher and I wish I had more time......    Hate to put my self thru pain and torture for just a few weeks and then be so sick, crashing all the time , with low BP and be too sick to even get a transplant.......   
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IgA Nephropathy   April 2009
CKD    May 2009
AV Fistula  June 2009
In-Center Dialysis   Sept 2009
Nxstage    Feb 2010
Extended Nxstage March 2011

Transplant Sept 2, 2011

  Hello from the Oregon Coast.....

I am learning to live close to the lives of my friends without ever seeing them. No miles of any measurement can separate your soul from mine.
- John Muir

The clearest way into the Universe is through a forest wilderness.
- John Muir
willowtreewren
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« Reply #1 on: August 27, 2009, 06:51:41 PM »

Not everyone crashes in center, Tyefly. True, it isn't as healthy as being at home. My husband started in center and as soon as they got his needles up to 15 gauge, we started our NxStage training.

He did fine while he was in-center, and then did even better once we were trained and came home.

Try not to worry about it too much. You are educating yourself really well and that will make a big difference.

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. :)
tyefly
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This will be me...... Next spring.... I earned it.

« Reply #2 on: August 27, 2009, 06:59:38 PM »

    Thx    I am trying to learn as much as I can ... so that at least I will know how things work.....   The bottom line is   I am really just scared of the whole thing..... I am sure everyone is... I am pretty strong on the outside, but boy when I really think about it ....well  its like a nightmare.....
    I guess we can all talk the talk   but the walk  well   I havnt walked yet.....

              I need to just stay calm.... and trust the people at the clinic......   

     Thx  Aleta.......
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IgA Nephropathy   April 2009
CKD    May 2009
AV Fistula  June 2009
In-Center Dialysis   Sept 2009
Nxstage    Feb 2010
Extended Nxstage March 2011

Transplant Sept 2, 2011

  Hello from the Oregon Coast.....

I am learning to live close to the lives of my friends without ever seeing them. No miles of any measurement can separate your soul from mine.
- John Muir

The clearest way into the Universe is through a forest wilderness.
- John Muir
willowtreewren
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My two beautifull granddaughters

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« Reply #3 on: August 27, 2009, 07:01:56 PM »

 :grouphug; :grouphug;
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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. :)
Hanify
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Hadija, Athol, Me and Molly at Havelock North 09

« Reply #4 on: August 27, 2009, 08:57:19 PM »

Just remember - you can do it.  The time will pass quickly as you're learning, and you might actually be pleased you're in there getting the hang of it.  By the time you do it at home you'll be an old hand at it.
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Diagnosed Nov 2007 with Multiple Myeloma.
By Jan 2008 was in end stage renal failure and on haemodialysis.
Changed to CAPD in April 2008.  Now on PD with a cycler.  Working very part time - teaching music.  Love it.  Husband is Paul (we're both 46), daughter Molly is 13.
KICKSTART
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In da House.

« Reply #5 on: August 28, 2009, 02:56:48 AM »

Its the same with any form of dialysis , you have to do your stint in hospital, to be honest its in your best interests and for safety. Even with PD which has far less risks you have to train at the hospital first. 3months will soon pass and will also give you the confidence to do it at home , because no matter how confident you are, doing it at home on your own without the units backup is scary ! There is so much more to hemo that it will probably take you 3 months to learn it all. As for crashing , i dont think its as common as you think , i have just started hemo after years of PD and had some pretty drastic dialysis and not crashed , ok i get a bad headache and feel sick , but im told that will pass. I did PD at home for years but would no way feel confident enough to tackle hemo yet , i do think you need that 3 months in hospital .
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OH NO!!! I have Furniture Disease as well ! My chest has dropped into my drawers !
del
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del and willowtreewren meet

« Reply #6 on: August 28, 2009, 03:58:59 PM »

My husband did find on in center dialysis.  He very rarely crashed ( maybe a couple of times in 6 years)  The main reason we switched to home hemo was because of the travel time ( over an hour each way) and the convenience.
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Don't take your organs to heaven.  Heaven knows we need them here.
Bill Peckham
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« Reply #7 on: August 28, 2009, 09:31:16 PM »

I dialyzed incenter for eleven years before switching to home. Treat it as a time to learn. You can learn to do your own punctures. Learn how your body reacts to treatment. I know of one person who did her first stick and went straight into home training - it is very unusual.

Hopefully your unit will welcome an involved and interested dialyzor. You are light years ahead of me when I started.
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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
Hemodoc
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« Reply #8 on: August 28, 2009, 09:56:37 PM »

Dear Tyefly,

I believe you mentioned before that you have access to in center nocturnal.  That would be an excellent way to learn self stick and other aspects of dialysis and get excellent dialysis at the same time.  There is a lot to learn.  In center nocturnal may actually give you better clearances than short daily dialysis unless you are looking at home nocturnal with NxStage.  It took me quite some time to put the whole self care at home package together.  Be patient and take small steps.  Much to learn and with good nurses and techs, you can learn a lot with good teaching.  It may be quite prudent to do it in this manner.  I didn't feel comfortable with all aspects of self care for over a year even with my medical background, or maybe that was because of my medical background knowing all that can go wrong.  Things can go wrong with dialysis and learning all of the safety tips takes time.

Keep learning, you are doing great.
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Peter Laird, MD
www.hemodoc.info
Diagnosed with IgA nephropathy 1998
Incenter Dialysis starting 2-1-2007
Self Care in Center from 4-15-2008 to 6-2-2009
Started  Home Care with NxStage 6-2-2009 (Qb 370, FF 45%, 40L)

All clinical and treatment related issues discussed on this forum are for informational purposes only.  You must always secure your own medical teams approval for all treatment options before applying any discussions on this site to your own circumstances.
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