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Author Topic: Deciding to Leave PD  (Read 3080 times)
stronger1017
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« on: April 17, 2018, 01:02:06 PM »

My name is Osagie. Im a designer working with a medical manufacturing company to revamp their in-home PD machine. My team and I just finished an initial round of interviews that took us to PD patients all over the county it was super enlightening to hear different stories in different regions of the US. Were now looking for ex-PD users, people who could do PD but opted not to, to round out our research. Wed like to hear about what worked / what didnt work / what could be improved for those who at one time were on a PD therapy but decided to deal with their kidney issues with another treatment. I know this is an obviously sensitive issue but if you're willing to share let me know by replying to this thread. Thanks guys












Sp mod Cas
« Last Edit: April 17, 2018, 03:54:35 PM by cassandra » Logged
KarenInWA
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« Reply #1 on: April 17, 2018, 02:12:30 PM »

I chose to not do PD  because the idea of being hooked up to a machine for hours every single night depressed me.  And it's not just the 8-10 hours, there's also the set-up, storage, and all the time associated with keeping it running. I just couldn't see myself doing that and being dictated by a nightly machine. I live alone, so I feel it would have contributed to some major social isolation.

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!
Michael Murphy
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« Reply #2 on: April 17, 2018, 02:21:30 PM »

My reason is simple.  I own a house in the Adirondacks near a large lake,  there is no bigger pleasure in my life than on a hot summers day than to go for a swim in water so clear you can se 30 feet to the bottom.  PD no swimming in lakes.
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Charlie B53
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« Reply #3 on: April 17, 2018, 06:35:09 PM »


PD worked well for the 3 1/2 years I did it, until an infection from Hell caused me to lose my PD Cath.

While doing Hemo with a cath I found it far easier, far less TIME to go In-Clinic three times a week than it was losing EVERY evening getting set up, connecting, and staying on my Cycler until the next morning. 

On Hemo I have regained my Evenings, weekends.  With my Fistula I can fall in the river, or lake, from my boat without fear of an infection.

The HUGE difference in time alone makes it very worthwhile for me.

But I do HATE those needles!
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Simon Dog
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« Reply #4 on: April 17, 2018, 08:44:04 PM »

My reason is simple.  I own a house in the Adirondacks near a large lake,  there is no bigger pleasure in my life than on a hot summers day than to go for a swim in water so clear you can see 30 feet to the bottom.  PD no swimming in lakes.
Watch out for Nagerlia Fowleri  >:D

Osagie - I enjoyed meeting with your people, so you already have my story and a few photos.   Good luck with your project.   I would have loved to continue on PD, but I was not getting the necessary clearance once my residual went the way of the dodo bird.    It's obvious that there are vast differences in personal preference in regards to treatment modality.
« Last Edit: April 17, 2018, 08:47:08 PM by Simon Dog » Logged
Michael Murphy
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« Reply #5 on: April 17, 2018, 09:36:33 PM »

Its a lake drained every fall and filed every spring by the runoff from the melting snow, water in summer is still cold its lat August early September before its warm enough to support the amoeba.
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Aaisha.Dar
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« Reply #6 on: April 17, 2018, 10:19:27 PM »

Was on Pd for 6 years. Hemo 1 year started just last year.
Dialysis started at age 15 which means I was in high school. PD was the best option for me because I had to be in school every day. I had to be on the machine at a certain time otherwise I would be late for school. There were many boxes that needed to be stored in the garage. Sometimes when ur not feeling that well you dont want to set up but that doesn't matter you gotta do it. Then not to mention the clean up afterwards. It was a big hassle. Yeah hemo takes a lot of time in a day but my weekends are free. I dont have to worry about setting up everyone does it for me. I aproeicate the techs. If possible it would be helpful if the machine were smaller. I did traveling and the machine was very heavy. Also u gotta stock up on supplies. Overall it is a lifesaving machine so u kinda just got to deal with it.
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Paul
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That's another fine TARDIS you got me into Stanley

« Reply #7 on: April 18, 2018, 01:12:49 AM »

I was due to go on PD, but an infection in my leg bone made my doctor worry that it would spread to the PD catheter, and in his words "and then you would die". So I decided the risk was too great.
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Whoever said "God does not make mistakes" has obviously never seen the complete bog up he made of my kidneys!
LorinnPKD
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« Reply #8 on: April 18, 2018, 08:08:37 PM »

I chose not to do PD because I have these monstrously enormous PKD kidneys and I knew PD wouldn't last for long because there's not a lot of room for PD to work!

Also, I'm weirdly fine with needles but the idea of having a port in my abdomen gave me the heebiejeebies.
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Whamo
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« Reply #9 on: July 30, 2018, 12:01:40 PM »

I did two years of hemodialysis.  Now I'm at 6 years of PD.  My nurse and doctor say my 10 1/2 hours a night isn't getting me clean.  I don't like hero but if I could do it with a catheter instead of a needle I'd do it.  Do they install new ones in the neck like when you start dialysis.  I'm afraid my veins aren't good enough for a arm set up.  They'd have to use a leg, and that's very painful (observation).  I'm on/off the transplant list.  I had three surgeries last month: skin cancer, plastic surgery, and then a skin graft.  At 65 I forget things even though I take a lot of brain supplements.  Every time I make progress it seems like another bump appears in the road.
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kickingandscreaming
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« Reply #10 on: July 30, 2018, 01:35:49 PM »

I can't suggest  route for you to take, but I can empathize with you having to make this decision.  Good luck with it.  Probably not long before I'm at the same crossroad.
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Diagnosed with Stage 2 ESRD 2009
Pneumonia 11/15
Began Hemo 11/15 @6%
Began PD 1/16 (manual)
Began PD (Cycler) 5/16
lulu836
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« Reply #11 on: July 30, 2018, 01:39:31 PM »


  Do they install new ones in the neck like when you start dialysis. 


In the neck?????????
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Of all the things I've lost, I miss my kidneys the most.
Whamo
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« Reply #12 on: August 03, 2018, 12:42:55 PM »

In a way I look forward to hemodialysis again.  The time savings will be substantial.  If I can keep my fluid consumption down the treatments aren't bad.  It will be nice to able to take my wife out at night to the the theater or to a party.  It will be nice to be able to spend a night at the beach.  It will be great to be able to enjoy a full day at Disneyland, the parade, and the show.  It will be nice to have time to visit my friends out of town.  I'm feeling good thanks to my life extension supplements and it's great to hear the doctor say my skin cancer, plastic surgery, and skin graft surgery, have healed up nicely.  In a way I was lucky because I never got a PD infection during the six years I did it.  Most people get them every couple of years.  I was afraid of getting infected so I was really careful. 
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laniepoo7
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Lane

« Reply #13 on: August 24, 2018, 08:41:12 PM »


  Do they install new ones in the neck like when you start dialysis. 


In the neck?????????

The first catheter I had was in my neck because it was an emergency situation.  I went in for a general feeling of fatigue and got a phone cal in the middle of the night to go to the hospital to be dialyzed NOW.  Only some hospitals have people that can do this procedure; had I gone to a different hospital, they would have to wait to put me on the machine until an interventional radiologist could place the chest catheter I had before PD.

It wasn't fun; I don't recommend it.
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Diagnosed with ESRD 4/30/2018
In-Center Haemo 5/8/2018
Peritonneal Dialysis 8/1/2018
lulu836
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« Reply #14 on: August 24, 2018, 11:08:05 PM »

It wasn't fun; I don't recommend it

Ive had  a chest catheter for 3 years
« Last Edit: October 21, 2018, 08:24:26 AM by lulu836 » Logged

Of all the things I've lost, I miss my kidneys the most.
Mr Ken
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« Reply #15 on: October 21, 2018, 07:02:05 AM »

I ABSOLUTELY HATE ALL THIS DIALYSIS CRAP!!!! It really is a burden... I hate deal with the bags that sometimes leak out no matter how careful you are..... Rug has been soaked a few times... Deal with all the garbage.... There are major draw backs to PD.. including not being as efficient as Hemodialysis.

Patients should do the talking to other patients who are thinking about doing PD..... Sometimes when these centers talk to patients about PD they do not paint a full picture just what is involved. PD is very time consuming, more than Hemodialysis....

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kristina
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« Reply #16 on: October 21, 2018, 07:33:12 AM »

I ABSOLUTELY HATE ALL THIS DIALYSIS CRAP!!!! It really is a burden... I hate deal with the bags that sometimes leak out no matter how careful you are..... Rug has been soaked a few times... Deal with all the garbage.... There are major draw backs to PD.. including not being as efficient as Hemodialysis.

Patients should do the talking to other patients who are thinking about doing PD..... Sometimes when these centers talk to patients about PD they do not paint a full picture just what is involved. PD is very time consuming, more than Hemodialysis....

Hello Mr. Ken, please give yourself a good chance and try to find the best way forward with this "dialysis-business"...
There are several different options of dialysis-treatments and with the help of your doctor plus your own Internet-research, there are possibilities for you to find out what suits you best.
Of course, needing dialysis comes as a shock, but you can try to get on the waiting list for a transplant and, after all : dialysis keeps you alive right now and dialysis also gives you a chance to continue your life...
Good luck and best wishes from Kristina.  :grouphug;
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
Simon Dog
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« Reply #17 on: October 21, 2018, 11:13:50 AM »

but you can try to get on the waiting list for a transplant
The good news is your waitlist time will be backdated to when you started D.  BTDT, got the call.
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Mr Ken
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« Reply #18 on: October 28, 2018, 06:28:25 PM »

I ABSOLUTELY HATE ALL THIS DIALYSIS CRAP!!!! It really is a burden... I hate deal with the bags that sometimes leak out no matter how careful you are..... Rug has been soaked a few times... Deal with all the garbage.... There are major draw backs to PD.. including not being as efficient as Hemodialysis.

Patients should do the talking to other patients who are thinking about doing PD..... Sometimes when these centers talk to patients about PD they do not paint a full picture just what is involved. PD is very time consuming, more than Hemodialysis....


but you can try to get on the waiting list for a transplant and, after all : dialysis keeps you alive right now and dialysis also gives you a chance to continue your life...
Good luck and best wishes from Kristina.  :grouphug;

Unfortunately I cannot get on a transplant list because I do not have the social support. Been turned down by three transplant centers.

ken
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okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #19 on: October 28, 2018, 08:07:24 PM »

My daughter Jenna did in-center hemo before her first transplant, so after that rejected she was eager to try PD. She didn't use a machine. She chose to do 3 1200cc manual exchanges a day. She did it for 5 years until her 2nd transplant. She did well on PD, never stopped urinating, had no food or fluid restrictions, and could take the bags with her wherever she was. She did PD in the car when we traveled, in a hotel room when she flew to a conference (supplies were delivered to her location) and even at Disneyland. It was much more flexible than hemo, and she felt good.
« Last Edit: October 28, 2018, 08:08:37 PM by okarol » Logged


Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
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
Mr Ken
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« Reply #20 on: October 29, 2018, 05:06:22 PM »

She s lucky that no infection developed..... Takes only one time
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Whamo
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« Reply #21 on: June 28, 2019, 11:41:20 AM »

I just decided to leave PD.  It's worked for about five years, but they want me do it for 11 hours a night plus a drain/fill during the day.  That's too much.  I want to go back to hemodialysis but they're stalling me.  I hated HD but was adapting just as they put me on PD.  At 67 I have recurrent skin cancer (just finished 35 radiation treatments and another surgery) so I don't have much time left.  I want more time to live a little before I check out. 
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iolaire
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« Reply #22 on: June 29, 2019, 07:46:27 AM »

Good luck on the change. Recovering part of that 11 hours might be a good change. Plan out a shift that will work work for you.
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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.
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