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Author Topic: PD: The beginning of the end  (Read 11142 times)
Michelle2016
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« Reply #25 on: April 27, 2017, 03:06:09 PM »

LorinnPKD: thank you for the wonderful ideas and attitude.
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MooseMom
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« Reply #26 on: April 27, 2017, 04:19:45 PM »

LorinnPKD, yours is probably one of the most helpful posts I've read in a long time!  Thank you for taking the time to post.
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
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« Reply #27 on: April 27, 2017, 05:05:38 PM »

"cognitive dissonance" -wow ! and" dignity of risk"  ---  Thanks for the post , dynamic.  Thank you
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Charlie B53
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« Reply #28 on: April 27, 2017, 06:00:59 PM »


Very well said LorinnPKD.

Much what I have been trying to explain.  It is what we make of it.  As long as our dry weight is not set so low as to cause symptoms, we can feel fine, and continue on with our lives quite well.

Your first few months can be a bitch, getting your dry weight where it needs to be to feel good.  Learning what creature comforts help your pass the treatment time.  This makes a HUGE difference.
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Michael Murphy
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« Reply #29 on: April 27, 2017, 06:54:08 PM »

LorinnPKD your post summed up my dialysis experience far better than I have ever been able to.  Most of what you bring so do I the only thing I bring is a thinkgeek.com iPad holder that holds the iPad so I can work with only one arm.  Thanks for the post it really hit the point dead on.
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LorinnPKD
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« Reply #30 on: April 27, 2017, 08:36:07 PM »

Aw, thanks everyone.

Sounds like we're all sending lots of love to K&S as she seeks out a path...  She's a good egg.
« Last Edit: April 27, 2017, 08:42:24 PM by LorinnPKD » Logged
Charlie B53
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« Reply #31 on: April 28, 2017, 05:13:21 AM »


Exactly.  What I fear is K&S does not yet recognize the possible depression striking once again upon learning of her treatment inadequacy. 
even slight depression can often blind us to the possibilities that yet exist, until these are pointed out and well explained.

I Pray K&S stay with us a long time yet.  She has so much insight to contribute to so many people yet.
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Charlie B53
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« Reply #32 on: April 28, 2017, 05:19:36 AM »


I see this in my Wife.  Her diabetic vision problems create depression that she fails to admit to.  I have managed to convince her to take her Prosac and Xanex, but she still won't take them as often as they are prescribed.  Claiming she doesn't need them.  Yea, Right.  I know better.  Sleeping in daily, won't get up and around, won't go outside even on nicer days.  Lack of interest.  She was NOT like this before.  I can see it so clearly but she cannot.

It's difficult when a Patient cannot see their problem so clearly.  Very hard to explain in terms they will understand.
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MooseMom
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« Reply #33 on: April 28, 2017, 09:01:52 AM »

We love you, kickingandscreaming.
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
Tío Riñon
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« Reply #34 on: April 28, 2017, 09:51:10 AM »

Looks like I'm staring death in the eye. Just learned that my "clearance' came in at 1.3 with now no residual function.  It means that I have only one chance to avert the need to switch to HD and that is by increasing my fill volume.  AND increasing to 8 exchanges/day including 7 on the cycler.  So effectively, my life will be taken over totally by D-- assuming even that this does the trick and raises my clearance. Enough.

I really, really don't want to spend the rest of my weary life on an HD machine with holes punctured into my arm,sitting in a chair.  Already, even before this shift (if it works) my life feels taken over by PD.  It's getting harder and harder to find justification for staying alive.  I'm not productive anymore as it is.  My dog is the only thing that keeps me going.  And she's 15+.  When she's gone, I can't imagine what would make my life feel meaningful.  I will not take on another dog--even tho i feel as is I can't  live without one in my life.  I just don't have the energy to properly exercise a dog and I'm too old to make a long-term commitment to another animal.  So this feels like the beginning of the end. :'(

Are you referring to your adequacy (Kt/V) when you say "clearance"?  If so, are you positive it is necessary to switch from PD to HD.  Last December, my nephrologist was concerned about my adequacy.  I wasn't meeting "the standard (1.7+)".  He feared that my peritoneum was failing.  I pointed out that the value of Kt/V is questioned in the medical literature.  Also, despite the readings, I was feeling just fine--the standard used in other countries.   

We went back-and-forth playing with my prescription and how my adequacy was done.  Throughout it all, I was feeling the same as always and still being active around the house and community.  After 4 months, we settled on my original prescription.  We tried a variation of the adequacy test and lo and behold, I met the standard (1.7).

I obviously can't declare your situation to be the same, but don't give up without a fight.  The chest catheter is a good idea too.  My father has used one for the last 6 years because he refuses to get a fistula.  Listen to your fellow members and do your best to work this out.  Don't choose death just yet.  I think you can overcome this issue.
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kickingandscreaming
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« Reply #35 on: April 28, 2017, 10:06:38 AM »

Tio-
One of the problems is that I am no longer peeing very much.  Since my recent hospitatlization for flu/asthma, etc. the shock of it essentially dried me up.  So now I don't have that to help with clearance.  My first adequacy test (over a year ago) was 2.7  and now it's only 1.3.  My blood work is OK, but not my clearance.  I will do another test this week just to make sure.   I currently do one manual exchange a day and 6 cycler exchanges nightly.  I'm a high average transporter so I can't do long dwells (over 1 3/4 hours) or I start taking on fluid.

I also shared the information about the questions about KT/V in relation to PD.  It went nowhere.

MooseMom- thank you!
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Diagnosed with Stage 2 ESRD 2009
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Charlie B53
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« Reply #36 on: April 28, 2017, 10:33:46 AM »


I think MM is asking 'How do you FEEL?'

Kidneys are susceptible to shock and can lose function.  Whether that loss is permanent or not is questionable.  When I started Hemo in Dec the clinic had my dry weight way too low.  I hardly P'd at all.  I was afraid the continued shock of drying out so much at every treatment would totally end what little residual function I had left.  It took a couple of months arguing, but they finally gave in and we have substantially raised my dry weight.  I am P'ing same as I was on PD again.  I think this really helps my labs stay so well mid-range.

How is your weight now as compared to before this last round of problems?

I found I stay hydrated well enough that I have very minor swelling of the ankles by the end of the day.  This seems just right, for me.

As long as your lungs stay clear, you may have room for another pound, or two.  Your kidneys may be more comfortable.

The better judge of your condition is if you Feel well enough to continue your normal activities.

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kristina
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« Reply #37 on: April 28, 2017, 10:35:49 AM »

Hey K&S, just wanted to send some love and support.  I always enjoy reading your contributions here and I love your perspective, humor, devotion to your dog (like me!), and intelligence.

When I was diagnosed, I decided not to do HD for the very reasons you said.  I'd watched my dad go through it, and while he faced it with a lot of good humor and patience, I never thought I could do it the same way. I didn't want them to cut my arm to make a fistula.  I didn't want to sit for hours with needles.  I didn't want any of it.  (And with PKD, PD wasn't really an option.  Also I love baths. :) )

But then I got really sick (this was me at age 40 and I could barely think or walk!), and I opted to stick around and try HD.  I live alone and I have a little dog who loves me and needs me, and I'd made a commitment to taking care of her.  And HD is... well, it's OK.  I felt so much better than I had before that it changed everything for me and changed my outlook.  It's been almost a year now.

Some things that help me the most:


- I asked for the shift that has mostly patients who are still working, which is third shift at my center.  These patients are more active/stable and have the energy to be more friendly, and so they may have more in common with you, because you sound like a bit of a firecracker. :)

- I bring an almost hilariously enormous bag of pillows and blankets and build a nest in my dialysis chair, which makes it super comfortable.  Seriously, it's a pillow to sit on, a pillow for my back, a small pillow to rest my hand on, a small folded blanket to rest my arm on, and a blanket to cover me!  Other patients have said they look at me with envy.  It's a bit much, but it makes the chair bearable and almost nice!

- I enter through the side door, which lets me avoid the clog of medical transports at the main entrance, and it feels more like a regular doctor's appointment.

- I bring snacks and a small drink from home.  Snacking helps bide the time.  I also keep a small bag with lip balm, moisturizer, hard candy.  Like what you'd bring on a long car trip.

- I also bring my own entertainment (iPad) and connect to their wifi.  No one else seems to do this but it's ideal.  They have TVs there, but I felt like a zombie just sitting and watching TV, so bringing my own feels more like sitting on an airplane or being at home than being plugged in getting treatment.

- The needles are OK.  They don't hurt, and I just look away when they are going in or out.  When it's all taped up, I just depend on a well-honed cognitive dissonance.

Above all, the thing I like most about HD is that it lets me partition my illness.  When I am at the clinic, I am sick.  When I am home, I am healthy.  So it makes me feel like I'm almost normal when I'm at home.  And that's really valuable to me dealing with a long-term illness.

Anyway, I hope you try it again and have better luck.  Taking a shift with more active people did wonders for my morale and made it a lot less scary.

Sending you hugs and hope.

Wonderful thoughts by LorinnPKD already !
There are only a few points I would like to add. For example, I bring a portion of my favourite potato salad, which is my evening snack during each D-treatment and I only enjoy this salad during treatments, so, psychologically speaking,  I almost look forward to my treatments because of this delicious salad which I enjoy on D-days only. Another point is that I usually read and/or think about some interesting Continental weekly magazines with interesting crossword-puzzles during the first two hours (first crossword- price every week is 500 Euros, meaning that I am still trying hard and hoping :), or I read an interesting "gripping" story and I only do my crosswords and/or read this book on D-days during my treatments, so I often look forward to continue reading the story...
...  And then, for the last two hours I sometimes watch an interesting film (courtesy of youtube) and listen to it via head-phones and/or I listen to my favourite music, courtesy again of youtube...
... Since I have started with D-treatments, I have had a chest-access catheter, which gives no pain and it has given me no problems so far (touch wood it continues like that, please ... and I feel lucky to be given the chance to survive in this fashion.
Best wishes from Kristina. :grouphug;
« Last Edit: April 28, 2017, 10:41:58 AM by kristina » Logged

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Michael Murphy
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« Reply #38 on: April 28, 2017, 10:55:28 AM »

Charlie I feel sorry for your wife since she must feel like he world is closing in on her.  My advise is two fold, take her to concerts or events aimed at hearing more then seeing.  Show her the non visual beauty in the world.  Second have her make up wa list of things to see wile her vision is still good enough.  Finally if you got Grand kids whenever she is really under a dark cloud bring em over it's tough to be depressed with kids around.
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kristina
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« Reply #39 on: April 28, 2017, 11:51:18 AM »


I see this in my Wife.  Her diabetic vision problems create depression that she fails to admit to.  I have managed to convince her to take her Prosac and Xanex, but she still won't take them as often as they are prescribed.  Claiming she doesn't need them.  Yea, Right.  I know better.  Sleeping in daily, won't get up and around, won't go outside even on nicer days.  Lack of interest.  She was NOT like this before.  I can see it so clearly but she cannot.

It's difficult when a Patient cannot see their problem so clearly.  Very hard to explain in terms they will understand.

I am very sorry Charlie and I wish I could give you some helpful answers!
All I can do is to send you and your wife my kindest thoughts 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 ...
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« Reply #40 on: April 28, 2017, 01:11:04 PM »

 this is an awesome post. I am not yet on dialysis and still have not made up my mind what kind to do. K&S you are so blessed to have so many people advising you. I guess that is what IHD is all about. At any rate, good luck , I know you will make the right choice for your future.

Luck & Love
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Tío Riñon
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« Reply #41 on: April 28, 2017, 01:32:04 PM »

Tio-
One of the problems is that I am no longer peeing very much.  Since my recent hospitatlization for flu/asthma, etc. the shock of it essentially dried me up.  So now I don't have that to help with clearance.  My first adequacy test (over a year ago) was 2.7  and now it's only 1.3.  My blood work is OK, but not my clearance.  I will do another test this week just to make sure.   I currently do one manual exchange a day and 6 cycler exchanges nightly.  I'm a high average transporter so I can't do long dwells (over 1 3/4 hours) or I start taking on fluid.

I also shared the information about the questions about KT/V in relation to PD.  It went nowhere.


I guess I'm not sure what your peeing has to do with this situation.  I haven't produced urine for 3-4 years.  Nevertheless, I'm still on PD and achieving adequacy.  Producing urine is a benefit, but not necessary.  As for your cycler schedule, that can be adjusted.  It can be programmed to do shorter dwells with more exchanges.

I'm not surprised about your being stonewalled about the Kt/V.  Nephrologists have been told how patients are to be monitored and treated.  Most have never experienced dialysis.  Hence, they disregard what we have to say most time.  Yet, it is not a one-size fits all situation.

Normally when I question a physician's judgement on a health matter, I get a second opinion.  It is your right to do so.  Have you tried discussing this with another nephrologist at another clinic?  Don't give up hope yet!
 
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kickingandscreaming
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« Reply #42 on: April 28, 2017, 02:12:44 PM »

Tio-
I actually sent my nephro an article about KT/V.  (https://www.ncbi.nlm.nih.gov/pubmed/27081745).  Nothing changed.

I've always assumed that more peeing was a survival factor--one that I no longer have.  I'm already doing a large number (7) of short exchanges-- one is manual and rest are on the cycler.  Average duration is 1:36  or 1:45. Fill volume now is 2000/exchange.  It used to be only 1800 becuase I was having breathing issues with so much filling.  Using a nebulizer for my lungs  has permitted me to go up to 2000ml/fill.   
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Going through life tied to a chair!

« Reply #43 on: April 28, 2017, 03:11:00 PM »

I haven't produced urine for 10 years.  It is a loss.  Weird, and that is when you realize dialysis is really keeping you alive.

Hang in.
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Charlie B53
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« Reply #44 on: April 28, 2017, 05:54:03 PM »


While on PD with 2000 fills I did 6 exchanges of about 1 hr plus a last fill of Ico for the 7th that I carried all day.

I don't understand why they insist on keeping your dwells so long.  Shorter dwells then refilling with fresh solution should draw more.
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kickingandscreaming
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« Reply #45 on: April 28, 2017, 06:19:17 PM »

From whatI understand really short dwells do not remove the mid-size solutes (e.g. phosph).  I also don't carry fluid the rest of the day.  Unlike you.
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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
Charlie B53
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« Reply #46 on: April 29, 2017, 04:03:23 AM »


I had NO food restrictions while on PD.  I only took binders if I ate a big bowl of chili with beans.  My Phos stayed at 3.5

I don't agree with that long swell theory.  I believe it is the total time for dialysis. It is the greater difference in the sugars that drive the fluid and molecules movement.  Shorter dwells keep that difference at a higher level.

If solution wasn't so expensive the Dr's would learn that twice as many exchanges of 30 minutes would remove far far more than half the exchanges at one hour.  Same total time but far greater 'average' sugar concentration.
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LorinnPKD
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« Reply #47 on: April 29, 2017, 09:45:32 AM »

K&S, I'm so sorry if I'm being daft here, but are you on a phosphorus binder?

My phosphorus was at a 9 or so until I started the binders (and before I started dialysis).  HD also removes a varying amount of phosphorus.  On HD and taking Renvela at mealtime, my phosphorus is usually somewhere between 4 and 5.
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kickingandscreaming
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« Reply #48 on: April 29, 2017, 10:52:40 AM »

Quote
K&S, I'm so sorry if I'm being daft here, but are you on a phosphorus binder?

I'm on 2 phosphorus binders (Renvela and Velphoro).  My phosph is fine at the moment (4.5).  It's my uric acid that is high and one of the reasons they are saying I'm underdialyzed.
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Diagnosed with Stage 2 ESRD 2009
Pneumonia 11/15
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Began PD 1/16 (manual)
Began PD (Cycler) 5/16
Simon Dog
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« Reply #49 on: April 29, 2017, 06:58:14 PM »

Are you on Allopurinol or Uloric for the uric acid?
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