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Author Topic: Living with PD  (Read 1336 times)
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« on: February 21, 2018, 05:19:57 PM »

Hey guys,

My name is Osagie. I'm a designer working with a medical manufacturing company to revamp their inhome PD machine.

As I've immersed myself in the lives and stories of a few PD users, I've caught a glimpse of the tension facing this community every day - the angst between the gritty reality of navigating life with this condition and the hope that in just a moment it can all change. This is especially pertinent because my friend's dad is just now starting to experience his own kidney issues .

Not having kidney issues myself, I know empathy can only go so far. I'd like to hear more about the frustrations, gripes, victories, challenges, and milestones of other people who have lived with an inhome PD 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.
Charlie B53
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« Reply #1 on: February 22, 2018, 02:52:11 AM »

Hi Osagie,

I did PD for 3 1/2 years before I screwed up and must have given myself an infection that simply refused to die.  My cath had to come out and a hemo cath was placed.  I've been on Hemo just over a year now.  Had my fistula created, a lot of work on it in order to develope well enough to be of use.  So I should be having my chest cath removed most any day now.

PD was great.  I had NO dietary or fluid restricts.  I could drink like a fish and remove all the excess every night. I was constantly being told to eat MORE potassium, and had to take daily supplements or my level would drop dangerously low within a day. I felt good.  Got up, out, and stayed active every day. The only real complaint was the amount of time it took daily.  My evenings were cut very short needing to get connected by 7.  Granted, I could disconnect, cap-off, go outside or the garage to smoke, but I had to be back, clean, and connected before the machine alarmed, ready to begin the next exchange.  Being a smoker and NOT smoking in the house for over 30 years this was at least a minor inconvenience.  Loosing all those evening hours with family, or being outside doing things about the yard, garden, garage, THAT was a problem.

I used the Baxter machine.  Right away I noticed a huge difference in the length of the patient hose between the 3 prong and the 4 prong cassettes with the 3 prong being much longer, giving me far more 'room' to roam.  Adding one extension hose I managed to cover almost half of my house.

I don't doubt the drain hose length may be of concern for many patients as well.

The sheer volume of supplies at every delivery takes some getting used to.  Stacks of boxes lining a hallway, plus that HUGE box of cassettes, really takes up some space.  Not to mention the total weight.  It really gets to be a problem if another carrier is needed to deliver any shortage of a normal delivery as those alternate carriers very often refuse to deliver INSIDE the house.  Being physically disabled and weak it can be quit a chore getting those heavy boxes in and put away.  I posatively LOVED my Baxter deliverymen as they were very nice about putting everything away for me.

I treatment time were able to be much much shorter I would seriously consider returning to PD.

Sorry for writing a book.

Take Care,

Charlie B53
Simon Dog
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« Reply #2 on: February 22, 2018, 10:50:30 AM »

A huge and welcome advance in the PD would would be a system that generates the dialysis solution from concentrate, similar to what NxStage or Tablo does for hemo.   NxStage requires it be made in advance, but Tablo is even better as it makes the solution on the fly.

A month of my NxStage supplies take up about 1/3 the space that was required by PD.
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« Reply #3 on: February 22, 2018, 11:36:06 AM »

I agree with Simon Dog (a rare occurence).  It's the bags that drive me up a wall, take up half the space in my apartment, and weigh a ton, day after day.  it's the drudgery of PD that gets to me.  Other than having to give up all social life in the evening, and all the drudgery, I still think PD is the best way to dialyze.

Diagnosed with Stage 2 ESRD 2009
Pneumonia 11/15
Began Hemo 11/15 @6%
Began PD 1/16 (manual)
Began PD (Cycler) 5/16
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« Reply #4 on: February 22, 2018, 10:35:54 PM »

My home is my refuge from "real life".  I absolutely refuse to turn in into a pseudo hemo clinic so I can drink or eat whatever strikes my fancy.  I am learning to cope with 3x/week in-clinic and doing very well with it.  I'm reading that a lot of folks here are depressed, angry, fearful, disappointed (insert your own description) about being on dialysis.  What is the alternative?  Tx?  Yeah, right.  Not happening and I'm fine with that.  Dialysis is a lifesaver, folks......get happy with it and be thankful that it exists so that you are not six feet under.  'jes sayin,  [/rant]

Of all the things I've lost, I miss my kidneys the most.
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