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peleroja
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« on: July 23, 2008, 03:18:44 PM »

Why do people choose the dialysis modality they do?  In my case, it happened so fast that I had no choice but to go on hemo for 3 months.  Although I tried to keep an open mind, it quickly became obvious to me that the technicians frankly couldn't care less about their patients.  I had been leaning towards PD, and this decision was cemented for me when the techs took off too much fluid without telling me, I went shopping afterward, and passed out in the store as my blood pressure plummeted.  That did it.  Definitely PD for me, and I've been very happy with my decision ever since.

I know that many folks don't even know about PD because so many nephrologists have a vested interest in and run hemo centers.

So, my question is, what was it that made you decide to choose the modality you chose?
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Adam_W
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« Reply #1 on: July 23, 2008, 03:32:52 PM »

I'm kind of like you where it happened so fast, I was shoved in a hemodialysis centre before I really even knew what dialysis was. After a month or so, I knew I wanted some form of home dialysis. I learned quickly that more frequent and/or longer dialysis usually make you feel better, and I wanted to simply have control over my dialysis, rather than "go in, stick out you're arm, and shut up". After four months I switched to home hemo 6 days/week and did that for a year. I loved it, but I want even more independence (the ability to do dialysis completely alone), so thats why I'm doing PD now. I'm finding now, I like PD even more than home hemo. Now I just need to get this leak resolved so I can get back on PD.

Adam
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-Diagnosed with ESRD (born with one kidney, hypertension killed it) Jan 21st, 2007
-Started dialysis four days later in hospital (Baxter 1550-I think, then Gambro Phoenix)
-Started in-centre dialysis Feb 6th 2007 (Fres. 2008H)
-Started home hemo June 5th 2007 (NxStage/Pureflow)
-PD catheter placed June 6th 2008 (Bye bye NxStage, at least for now)
-Started CAPD July 4th, 2008
-PD catheter removed Dec 2, 2008-PD just wouldn't work, so I'm back on NxStage
-Kidney function improved enough to go off dialysis, Feb. 2011!!!!!
-Back on dialysis (still NxStage) July 2011 :(
-In-centre self-care dialysis March 2012 (Fresenius 2008K)
-Not on transplant list yet.


"Don't live for dialysis, use dialysis to LIVE"
G-Ma
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« Reply #2 on: July 23, 2008, 03:36:20 PM »

I was in ND visiting, no clue, very fast, then found out ND is not certified for home hemo, just PD which was not an option due to surgeries, so I'm in NC.
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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.
2 Step fistula, 05/08-elevated 06/08, using mid August.
Aug 5, 08, trained NxStage and Home on 9/3/2008.
Fistulagram 09/2008. In hospital 10/30/08, Bowel Obstruction.
Back to RAI-Latrobe In Center. No home hemo at this time.
GOD IS GOOD
monrein
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« Reply #3 on: July 23, 2008, 03:38:45 PM »

Well, I was just 26 when I first started on dialysis.  My neph described the choices to me and to be perfectly honest I could not see how a PD catheter could be integrated into my sex life which was one of my favorite parts of my life.  I like the fact that when not on hemo I'm free of tubes etc.  I also dislike the wretched permacath and hope to have this one removed very soon.  I had also met a number of people at the hospital who had had a terrible time with peritonitis and that scared me a bit but wasn't the main consideration.
My nurses were exceptional but I was on home hemo for four of the five years.
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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
twirl
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« Reply #4 on: July 23, 2008, 03:47:14 PM »

too chicken to do own needles
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flip
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« Reply #5 on: July 23, 2008, 04:00:11 PM »

I found hemo to be the easiest, quickest and least invasive on my lifestyle.
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That which does not kill me only makes me stronger - Neitzsche
thegrammalady
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« Reply #6 on: July 23, 2008, 04:01:09 PM »

i didn't have a choice at the start. i was hospitalized on the 2nd of january, had a permacath placed on the 3rd and started dialysis on the 4th. the center i go to is the closest to my home that isn't a davita center. my neph thinks davita is evil. in fact he's not much happier with fresenisus. there is a new company coming to town i think he'll probably want me to change. i was given all the information on pd, dr is very good at making sure you understand. just not interested. i have learned not to let the techs make any of the decisions and i have the machine turned so i can see it. the one time they did push my dry weight i got very sick, before i even finished treatment. the doctor gave them hell and specific orders that were never to push dry weight on any of his patients. he keeps a pretty tight reign on things. not all of the doctors do. i actually weigh a little less than my dry weight and both doctor and i refuse to change it. i tell them how much to take off. i don't have space for home hemo and am not sticking myself.
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Stacy Without An E
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« Reply #7 on: July 23, 2008, 04:20:41 PM »

I'm fortunate to have a clinic where I trust 90% of the techs, because I know myself and I know I wouldn't take care of myself on home Dialysis.  I have a hard enough time taking my meds every day like I'm supposed to.

I'm a huge fan of swimming too, so I don't think PD would work very well with me.
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Stacy Without An E

1st Kidney Transplant: May 1983
2nd Kidney Transplant: January 1996
3rd Kidney Transplant: Any day now.

The Adventures of Stacy Without An E
stacywithoutane.blogspot.com

Dialysis.  Two needles.  One machine.  No compassion.
petey
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« Reply #8 on: July 23, 2008, 04:35:26 PM »

Marvin's need for dialysis came on very quickly (13 years ago).  After the diagnosis of ESRD, it was four days later when he started hemo.  We weren't given an option back then -- it was just dialysis means emergency permcath then it all started.  We had been in-center hemo for about two months when I did some research and found out about PD (no one had told us).  Trained for that (PD) a month or so later (for about a month).  Marvin had an awful time with PD (two Tenckhoff caths, one kinked and then peritonitis).  Marvin said, "That's it for PD and me."  Back to in-center for five years.  Then, transplant for three years.  When told he had to go back on dialysis, we didn't really think about it -- in-center hemo.  After that for 3 1/2 years, I found out about home hemo (through internet searches) and we pushed for that modality for Marvin.  It wasn't offered in our area, so we had to push some more.  Six months later, we were training for home hemo.  Marvin's been on home hemo one year now (today, in fact, is his one-year anniversary on home hemo).

We have found in our area, unless the patient/caregiver asks (even pushes) for something different, the "standard" modality is in-center hemo.  That is a shame.  People should be informed of their options so THEY can make the choice.

By the way, home hemo doesn't mean the patient has to cannulate.  Marvin has NEVER been able to even look when the needles go in.  I do all the sticking.
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donnia
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me and my donor Joyce

« Reply #9 on: July 23, 2008, 04:41:04 PM »

I had no choice.  I have too much scar tissue in the abdomin for PD.... my tx surgeon said he had to break out the dynomite to get my new kidney in there  :)  aaaannnddd Im too chicken to do my own needles for hemo at home.   :puke;
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Born with one kidney 1972
Ureter re-constructured 1975 (reflux had already damaged the kidney)
Diagnosed and treated for high blood pressure 2000
Diagnosed ESRF October 2006
Started dialysis September 2007
Last dialysis June 4, 2008
Transplant from my hero, Joyce, June 5, 2008
Ang
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« Reply #10 on: July 23, 2008, 05:49:05 PM »

i  do  in  centre,  cause  my  hand  tremble  to  much,  to  do  my  own  needles and  deep  down  i  think  i'm
too chicken to do own needles
to  fat  for  pd,dr  did'nt  put  it  quite  like  that

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MIbarra
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« Reply #11 on: July 23, 2008, 05:54:09 PM »

Hemo in center  was really the only option presented to me at the time and I was so sick I did not have the energy to look into anything else. Depending on how old I am next time arounnd, it will probably be some sort of home dialysis.
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Cadaver transplant April 29, 2007
twirl
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« Reply #12 on: July 23, 2008, 05:56:33 PM »

Ang      you are a chicken also    ha ha ha ha ha    we are alike     cluck - cluck

you do not appear to be fat--------WTH is wrong with your doctor?

did you read the joke about the Texan and the down under rancher-----------(clean--- not Brokeback)
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peleroja
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« Reply #13 on: July 23, 2008, 06:12:03 PM »

Fat, Ang?  Y'all don't know the meaning of fat.  When my PD surgeon first saw me, he drew pretty little diagrams all over my chest and abdomen, then he asked me to sit up, and all his pretty diagrams disappeared!  He said he couldn't do surgery where the exit site was in my abdomen, but he could give me a presternal catheter (just to the right of my left breast).  I was so eager to do PD that I would have said yes if he told me it would come out my nose!
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Chris
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« Reply #14 on: July 23, 2008, 06:15:58 PM »

Well when I found out I had renal failure, it was during an ER visit for a severe hypoglycemia attack on June 29, 1999. They said they found out I had renal failure with 8% function left. I wasn't able to go home and on July 4 they started hemo dialysis on me through a catheter. Then a surgeon came in asking me what I would like to do. I had no knowledge of the two types, which was a stupid question on his part without having someone inform me all about dialysis. Only thing I could think of asking was could I still swim and he said no, not with PD. So I decided on hemo. First center I went to I hated so much (doctor I got stuck with in the hospital owned it), second center with a new doctor I liked much better and didn't have a problem with the techs, just the idiot dietitian and social worker. Although it was fun to make them mad, which others liked when I did that. Unfortunately all the people I knew there retired or moved on unless I go to their other center 30 miles away if I have to go back on.
« Last Edit: July 23, 2008, 06:22:33 PM by Chris » Logged

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?
smile24x7
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« Reply #15 on: July 23, 2008, 07:39:45 PM »

I don't like the idea of the PD cath.  Plus I think may have too much stomach fat for it.  Besides, I like the idea of the center, being able to talk to the other patients and having a nurse there in case something goes wrong.  In-center hemo just seems to be best for me right now.
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Chris
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« Reply #16 on: July 23, 2008, 07:42:45 PM »

You can always change your mind later to and go on PD.
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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?
IUNurse
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« Reply #17 on: July 23, 2008, 07:44:51 PM »

I like this topic, it is interesting to hear your reasoning for why you chose the dialysis type that you do.  I always tell patients that no one type of dialysis is absolutely better than the other.  I have seen patients happy and do well with each type.  It really has to depend on what works for you and your body!
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It is not what you say to a patient that he will remember, it is how you made him feel.
Chris
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« Reply #18 on: July 23, 2008, 07:50:25 PM »

I think that maybe if we had more information, knowledge, and time to look into the different types when we were told on a short notice, there might be a slim chance that we may have chosen differently. Well at least more wisely with more information.
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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?
IUNurse
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« Reply #19 on: July 23, 2008, 07:58:47 PM »

In Indiana where I work, it is our goal to teach you about dialysis before you need it.  That doesn't mean that we are reaching everyone, but we are truly trying to catch you before you start.  Even if you chose hemodialysis, if we catch you in time you can have a fistula in and ready when it is time to start and then you can avoid the permcath!
I imagine that is the goal around the country, but some areas are doing better than others!
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It is not what you say to a patient that he will remember, it is how you made him feel.
Ang
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« Reply #20 on: July 24, 2008, 12:15:44 AM »

Ang      you are a chicken also    ha ha ha ha ha    we are alike     cluck - cluck

you do not appear to be fat--------WTH is wrong with your doctor?

did you read the joke about the Texan and the down under rancher-----------(clean--- not Brokeback)


5  feet  tall  and  an  abdomen  of  about  124cm,  right  kidney  of  27cm,doctor  won't  say  it  but  thats  fat.
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live  life  to  the  full  and you won't  die  wondering
peleroja
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I have 16 hats, all the same style!

« Reply #21 on: July 24, 2008, 07:05:23 AM »

IUNurse, I know there is a wave of "fistula first" going around the country.  I gotta admit (sorry hemo folks) I think a fistula is one of the ugliest things ever invented.  Just my two cents.  Kaiser Permanente has a Choices class where they lay out all the details and pitfalls of both dialysis choices.  That's where I first heard about PD and thought it was eminently doable.  As you say, there are pitfalls to both.  Peritonitis on PD and exsanguination on hemo.  When I was on hemo for 3 months, some of those poor people sat there for an hour trying to get the bleeding to stop.  In the 5 years I've been doing PD I've never had anything go wrong, and trust me, I don't always do it exactly as my nurse taught me!
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G-Ma
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« Reply #22 on: July 24, 2008, 08:04:02 AM »

I hated my graft...ugly...and was kind of glad when it clotted off, just wish they could or would take it out.....love my fistula..it is on the inside of my left upper arm, no one can see unless they look or know it's there, wonderful vascular surgeon did it in Charlotte and I am going to take very good care of it. I am now thinking about NXStage..back and forth...my 3 days vs 6..I feel good already...what will be the difference and now Dr. brought up the transplant question again...I just don't know.
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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.
2 Step fistula, 05/08-elevated 06/08, using mid August.
Aug 5, 08, trained NxStage and Home on 9/3/2008.
Fistulagram 09/2008. In hospital 10/30/08, Bowel Obstruction.
Back to RAI-Latrobe In Center. No home hemo at this time.
GOD IS GOOD
IUNurse
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« Reply #23 on: July 24, 2008, 06:24:51 PM »

Peleroja, you are right- it is called "Fistula First"  Bottom line is making sure patients have dialysis access ready before they need dialysis!  This way people aren't started on hemo in the hospital on a permcath, never having heard of dialysis options. 
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It is not what you say to a patient that he will remember, it is how you made him feel.
kitkatz
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« Reply #24 on: July 24, 2008, 06:36:24 PM »

Options,what options? I was given no options at all!  Just thrown in the bed ad they started a groin access and then tried to tell me what o do. I made them stop and give me information before they got to do any surgeries.  Took them three days to get me any info on dialysis.
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Take it one day, one hour, one minute, one second at a time.

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