Deciding to Leave PD

[stronger1017]

My name is Osagie. I’m 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. We’re now looking for ex-PD users, people who could do PD but opted not to, to round out our research. We’d like to hear about what worked / what didn’t 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

[KarenInWA]

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

[Michael Murphy]

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.

[Charlie B53]

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!

[Simon Dog]

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 

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.

[Michael Murphy]

It’s a lake drained every fall and filed every spring by the runoff from the melting snow, water in summer is still cold it’s lat August early September before it’s warm enough to support the amoeba.

[SweetyPie]

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.

[Paul]

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.

[LorinnPKD]

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.

[Whamo]

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.

[kickingandscreaming]

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.

[lulu836]

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

In the neck???

[Whamo]

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. 

[laniepoo7]

  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.

[lulu836]

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

Ive had  a chest catheter for 3 years

[Mr Ken]

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....

[kristina]

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. 

[Simon Dog]

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.

[Mr Ken]

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. 

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

ken

[okarol]

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.

[Mr Ken]

She s lucky that no infection developed..... Takes only one time

[Whamo]

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. 

[iolaire]

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.