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Author Topic: Jennifer Castillo: Why peritoneal dialysis works for me  (Read 2888 times)
Zach
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"Still crazy after all these years."

« on: August 13, 2015, 06:46:49 PM »

http://www.nephrologynews.com/peritoneal-dialysis-works/

Why peritoneal dialysis works for me

JENNIFER CASTILLO, AUGUST 13, 2015
Nephrology News & Issues magazine

After doing in-center hemodialysis for more than 20 years, I decided it was time to go back to the peritoneal dialysis (PD) treatment. I had used PD in the 1980s. The decision to make the change back to PD seemed best for me. PD is performed daily which results in slow, gentle dialysis. Because PD is done this way, as opposed to three or four times a week in the hemodialysis center, there is a constant removal of excess toxins and fluid, which is much easier on me as the patient.

Also doing home dialysis on my own schedule eliminates the commute to the medical center. In addition, PD affords me more freedom in my diet. Now I am able to drink more beverages and eat mashed potatoes, French fries, honeydew, cantaloupe, watermelon, tasty Florida oranges, and tomatoes. These were foods that were carefully measured and restricted while I was on hemodialysis. Having meals at regular times keeps my body on an even schedule, which helps me to take my routine daily medications. Ultimately, that means I will have better and more consistent laboratory results.

I have always viewed dealing with dialysis as a part time permanent job with no time off for good behavior.

Ideally, dialysis should be a warm, comfortable experience. Most hemodialysis centers are kept quite cool for the comfort of the staff that move about constantly throughout their shift. Doing dialysis at home gives me the option to control my environment and be comfortable. Nothing can beat the comforts of home. No more air conditioning in the winter or heat in the summer. Now if I need a blanket, I have one handy and donít have to carry it to the unit along with food and other items to keep busy during my treatment.


My own routine

At home, I have a routine with everything needed for comfort. Should I need something, my caregiver husband can help me with it or I can disconnect and get it myself if necessary, then reconnect to complete the treatment. If the PD machine hiccups and becomes cranky (itís basically a computer) help is only a phone call away 24/7. Those savvy technicians have never failed me in the six years I have been doing this treatment.

To complement the on-call technicians, there is a team of doctors and nurses to assist in dealing with any unexpected issues that may pop up. I visit my nephrologist and nurses monthly so they can review my treatment progress and blood work. One of the most rewarding aspects of home care is the independence and control I gain because I am trained to solve treatment issues that may emerge. I am thereby participating in the success of my own health care regimen. Life certainly has many gifts.


About the Author
Jennifer Castillo

Ms. Castillo is a sales associate for Nephrology News & Issues and lives in San Francisco with her husband Greg.
« Last Edit: August 13, 2015, 06:49:52 PM by Zach » Logged

Uninterrupted in-center (self-care) hemodialysis since 1982 -- 34 YEARS on March 3, 2016 !!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
No transplant.  Not yet, anyway.  Only decided to be listed on 11/9/06. Inactive at the moment.  ;)
I make films.

Just the facts: 70.0 kgs. (about 154 lbs.)
Treatment: Tue-Thur-Sat   5.5 hours, 2x/wk, 6 hours, 1x/wk
Dialysate flow (Qd)=600;  Blood pump speed(Qb)=315
Fresenius Optiflux-180 filter--without reuse
Fresenius 2008T dialysis machine
My KDOQI Nutrition (+/ -):  2,450 Calories, 84 grams Protein/day.

"Living a life, not an apology."
David Pascoe
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« Reply #1 on: September 14, 2015, 08:00:55 PM »

Twenty years! WOW, I can't imagine doing that. I was on hemo for only a year or so and couldn't wait to get on P.D. I wouldn't go back to hemo for anything. I asked one of my nurses why there were so few on PD. Her reply was that they didn't want to have to do for themselves, liked being attended to in the clinic. Many say its too much work. I guess that is a matter of perception. IT is indeed a lot of work managing all the supplies and taking responsibility for yourself. For some, that is probably scary. On PD for nearly three years now, I've made a few serious mistakes, like running out of supplies.

OTOH, I don't think people understand how incredibly versatile PD is. I've screwed up every way you could think of and yet always found a way to recover and make it right. PD is not a one-trick pony.

One danger though. If you have to be hospitalized, BE VERY CAREFUL about letting hospital staff take control of your dialysis. Few really understand it. One hospital almost killed me by refusing to allow me to do it myself and then demonstrated their ignorance of the process.

Make all arrangements in advance or risk my experience. Demand to use your own equipment and supplies or go elsewhere. I have it recorded in my local hospital record that these are my requirements should I be admitted.
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Simon Dog
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« Reply #2 on: September 15, 2015, 06:32:32 AM »

Quote
IT is indeed a lot of work managing all the supplies and taking responsibility for yourself.
There is a general trend in this country for people to not want to be responsible or take care of themselves.

I wonder if there is a difference in the percentage of Republicans on dialysis vs. Democrats who take the responsibility for doing it themselves
Quote
One hospital almost killed me by refusing to allow me to do it myself
Once you are in the hospital, you will not be getting D until a hospital nephrologist writes orders.  You should ask to speak to that MD so the orders can reflect "patient will self treat".

I've never had a problem being allowed to self-canulate when in the hospital, but if I was refused, I would have everything put on hold while they paged the nephrologist so I could have a talk with him.
« Last Edit: September 15, 2015, 06:35:08 AM by Simon Dog » Logged
KarenInWA
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« Reply #3 on: September 15, 2015, 12:19:27 PM »

I'm not a Republican and I did in-center HD. I live alone in a small 2 bedroom condo, and have little room for supplies. The thought of PD depressed me, because all I could think is I'd be spending a third of my life attached to a machine, and would have to cut short any social time because I would have to go home, hook up to my machine and stay home *every. single. night*. I live alone, so this was a very depressing thought. I was only on dialysis for 7 months before receiving a live donor transplant, so I was lucky. I don't know yet what I'll do when that transplant fails. But I still don't like the idea of spending a third of my life hooked up to a machine or stuck at home.

KarenInWA
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1996 - Diagnosed with Proteinuria
2000 - Started seeing nephrologist on regular basis
Mar 2010 - Started Aranesp shots - well into CKD4
Dec 1, 2010 - Transplant Eval Appt - Listed on Feb 10, 2012
Apr 18, 2011 - Had fistula placed at GFR 8
April 20, 2011 - Had chest cath placed, GFR 6
April 22, 2011 - Started in-center HD. Continued to work FT and still went out and did things: live theater, concerts, spend time with friends, dine out, etc
May 2011 - My Wonderful Donor offered to get tested!
Oct 2011  - My Wonderful Donor was approved for surgery!
November 23, 2011 - Live-Donor Transplant (Lynette the Kidney gets a new home!)
April 3, 2012 - Routine Post-Tx Biopsy (creatinine went up just a little, from 1.4 to 1.7)
April 7, 2012 - ER admit to hospital, emergency surgery to remove large hematoma caused by biopsy
April 8, 2012 - In hospital dialysis with 2 units of blood
Now: On the mend, getting better! New Goal: No more in-patient hospital stays! More travel and life adventures!
Charlie B53
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« Reply #4 on: September 16, 2015, 05:56:01 PM »


I only started PD end of May 2013, so I'm a little over two years now.  Cannot imagine HD.  Only know what I've read in here.  With my paranoia of needles, even a little shot in the arm,  I don't know how I would do in-center.

I have to admit, most all of you on HD are far tougher than I am.  No doubt I would be unconscious most of the session simply from the fear.
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Simon Dog
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« Reply #5 on: September 17, 2015, 10:19:36 AM »

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I'm not a Republican and I did in-center HD.
You may have my references inverted.

Republicans tend to believe in self sufficiency, taking care of ones own problems to the extent possible, whereas Democrats tend to feel that someone (generally the govt) should take care of them.   I would expect a slight bias towards Republicans being more likely to choose home HD over in center HD.   But then, I may also be fos.
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iolaire
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« Reply #6 on: September 17, 2015, 11:13:22 AM »

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I'm not a Republican and I did in-center HD.
You may have my references inverted.

Republicans tend to believe in self sufficiency, taking care of ones own problems to the extent possible, whereas Democrats tend to feel that someone (generally the govt) should take care of them.   I would expect a slight bias towards Republicans being more likely to choose home HD over in center HD.   But then, I may also be fos.
I don't think you understand my beliefs.  I feel we should help our fellow humans. 

I'd guess that a majority of democrats are not receiving "handouts." 

If anything in my state, Virginia, its the conservative regions with lower education and income levels that receive our handouts.  The well educated, affluent Northern Virginia area consistently votes Democratic.

I happily pay a huge amount of taxes with no goal of recouping that money from the government, with the full understanding that it will be spent to better others, and for things that I don't support.
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Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
Charlie B53
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« Reply #7 on: September 17, 2015, 01:14:02 PM »


I happily pay a huge amount of taxes with no goal of recouping that money from the government, with the full understanding that it will be spent to better others, and for things that I don't support.

Unfortunately, Government spending for contracted goods and services is outrageously high.  This occurs at all levels of Government, Fed, State, County, and Cities.  Including School Districts.  Many Contractors have the attitude that it is O.K. to radically over-charge because "It's Government money, they can afford it."   Failing to realize that is one of THE primary reasons that taxes are so high.

Similar attitudes prevail when Insurance Companies are footing the bills.  Which results in much higher premiums for everyone.

I don't see this as a Democrat vs Republican thing.  More like personal and Corporate greed trying to dip BOTH hands into the Government/Insurance Co pocketbook.

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cassandra
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« Reply #8 on: September 17, 2015, 01:45:30 PM »

Well said Charlie, and it's in (I would think) most countries like that. One of the reasons there is so much less PD, as it's 'cheaper', and less profitable.
But to go back to the 'original' thread subject. I loved doing APD. I did it for 5 years, than had to go on HD which I hated, and had promised myself never to do again. After 10 years in-centre, I discovered IHD, learned about Home Hemo, and Nxstage. It took me 2 more years to get it, and 3 years down that line I'd say that HHD with Nxstage comes a good second after APD.

And I've never thought my political stand had anything to do with it.
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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
David Pascoe
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« Reply #9 on: September 18, 2015, 02:49:05 AM »

Quote

I've never had a problem being allowed to self-canulate when in the hospital, but if I was refused, I would have everything put on hold while they paged the nephrologist so I could have a talk with him.

You mean you could just wheel in your machine and supplies no questions asked? My point is that one should make these arrangements in advance, if at all possible. Under an emergency situation it has to be dealt with on the spot.

I was in a hospital 600 miles from home. i should have gotten my own clinic people involved and I was wrong to assume they knew what they were doing.
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