Peritoneal Dialysis 411, Suggestions, Recommendations, experiences?

[Rod Hagen]

Hello.  Someone very close to me, 83 yo male, with newly diagnosed CHF and Kidney failure received his Peritoneal port today and eventually, once it's healed, will transition from Hemodialysis, which he started last week from his new AV fistula, to at home dialysis from his peritoneal Port. His nephrologist is certain that with training, and assistance in the beginning, he should be able to handle it alone going forward.  He lives alone.

If any of you have direct personal experience with PD or had/have a love one on it, I'd love to hear anything you have to say.

Also, any experiences any of you have with loved ones, or patients, who transitioned from PD to at-home Hospice, or even not at-home hospice, I'd love to hear your thoughts or feelings or theories as well.   I'm new to all this, but I've been reading a lot and have talked quite a bit to two nephrologist friends.  Nevertheless,  anything you have to say would be helpful and appreciated.  Thank you very very much.

Edited March 8, 2023 by Rod Hagen

[+ nycman]

Without any personal knowledge of whom you speak, 
I just don’t see any 83 y/o person being able to manage 
peritoneal dialysis (PD) at home. It’s complex, requires 
manual dexterity, and strict adherence to sterile 
technique. I know first hand it was hard for an intelligent,
well trained 30 y/o nurse to get right. I don’t see anyone
over 70 standing a snowball’s chance in hell. 

I’m having a little trouble understanding why you’d 
bother putting in an AV fistula, and why one week after
it’s mature enough to use, you’re transitioning to PD.
That doesn’t really make sense. That coupled with the
question about hospice makes me think these are all
just temporary measures meant to make someone (or
their family) "fell better" and not really intended as a
long term solution or treatment.

I’m sorry if that sounds cold, but it’s the only logical
answer I can come up with. At 83 years of age,
I wouldn’t go along with all this, but it’s not my life. 
I’d chose comfort over complex medical procedures 
and daily interventions that aren’t going do much more 
than provide false hope and keep me tied to a machine.

Again, I know that sounds harsh. I apologize, and my
thoughts and prayers are honestly with you and your
friend. No form of dialysis is an easy road.

[Rod Hagen]

He's in the h

11 hours ago, nycman said:

I’m having a little trouble understanding why you’d 
bother putting in an AV fistula, and why one week after
it’s mature enough to use, you’re transitioning to PD.

Sure.  He's not willing to do traditional Hemodialysis, was instead going to simply move into hospice. I neglected to mention that.  But then at home Dialysis was floated as an idea.  So he's only using the AV fistula temporarily now while in the hospital, and then while the Peritoneal port heals. 

And oh my gosh is he feeling better now that he's had some HD, much better than the IV diuretics, so that's nice.  But of course you're right, this is all temporary, nobody, including my friend, expects him to do PD at home for years.  I presume, eventually, he'll transition into Hospice (hopefully at home.)

My two nephrologist friends, not involved in this case, have patients of equally and greater advanced age who do it themselves, but I have the same concerns about dexterity and sterility that you have.  No, you're not harsh, this is why I started this thread.  Feedback on using PD and everything else around it.  Thank you.

 

Edited March 8, 2023 by Rod Hagen

[Guest]

Well, I've had a number of patients who were able to do PD at home. @nycman is absolutely correct in that infections are a major concern with PD. If someone were on the transplant list (obviously not the case for the person described in the OP), it would be disheartening if an infection came right when a matching transplant kidney went through. I also agree with him that it's strange to go through all of the trouble of getting an AV fistula if the plan is to get PD. That's subjecting someone to a risk (not insignificant one) with no potential benefit. Now one shouldn't take blood pressures, or do blood draws, etc., on the side with the fistula. If there's going to be a hospice nurse, I'd think the nurse could attend to the PD at home. If I were an 83 year-old on hospice, I'd probably much prefer getting PD with my nurse than going to HD twice a week. 

[Rod Hagen]

11 hours ago, Unicorn said:

Well, I've had a number of patients who were able to do PD at home. @nycman is absolutely correct in that infections are a major concern with PD. If someone were on the transplant list (obviously not the case for the person described in the OP), it would be disheartening if an infection came right when a matching transplant kidney went through. I also agree with him that it's strange to go through all of the trouble of getting an AV fistula if the plan is to get PD. That's subjecting someone to a risk (not insignificant one) with no potential benefit. Now one shouldn't take blood pressures, or do blood draws, etc., on the side with the fistula. If there's going to be a hospice nurse, I'd think the nurse could attend to the PD at home. If I were an 83 year-old on hospice, I'd probably much prefer getting PD with my nurse than going to HD twice a week. 

As I said he has the AV fistula (it  was not much trouble) because he's doing regular Dialysis while he's in the hospital because he was in massive Kidney Failure upon admission, and ALSO he'll be doing outpatient dialysis for a couple wks when he leaves the hospital while the PD port heals.  Once it heals, he'll start PD and the AV fistula won't be needed.

Now that that's behind us, I am concerned about potential for infections of course.  But, then I read about blind people who do it.  One thing I am very concerned about is him lifting the bags in the morning.  They're about 10 pounds each, and he's weak right now from his hospital stay and having CHF and Kidney failure.

Edited March 10, 2023 by Rod Hagen

[+ nycman]

7 hours ago, Rod Hagen said:

AV fistula (it  was not much trouble)

I’m not sure we’re all talking about the same thing.

A patient in acute renal failure would not have an emergent AV fistula placed. They would have a temporary device (like a Quinton Catheter) placed into their neck, chest, or groin. It’s easy to spot. It looks like a big Y shaped tube sticking out of their skin.

An Arteriovenous (AV) fistula is usually created in the forearm or upper arm and is completely under the skin. It needs 2-3 months to mature before it can be used. That’s why it not placed in an emergent situation. It takes too long to be usable. They are usually placed electively at a later date once the crisis has passed.

I’m just having a hard time envisioning a situation where a patient in new, acute renal failure has an AV fistula created and used immediately.

At the end of the day it’s not all that important to the discussion of the serious and obviously heartfelt questions posed by @Rod Hagen. I apologize for the digression.

[Rod Hagen]

Yes, it looks like a Quinton Catheter (thank you) placed into his chest, so that must be what it is, and for whatever/no reason everyone in the hospital is referring to it as an AV Fistula.

[Rudynate]

On 3/7/2023 at 7:43 PM, nycman said:

Without any personal knowledge of whom you speak, 
I just don’t see any 83 y/o person being able to manage 
peritoneal dialysis (PD) at home. It’s complex, requires 
manual dexterity, and strict adherence to sterile 
technique. I know first hand it was hard for an intelligent,
well trained 30 y/o nurse to get right. I don’t see anyone
over 70 standing a snowball’s chance in hell. 

I’m having a little trouble understanding why you’d 
bother putting in an AV fistula, and why one week after
it’s mature enough to use, you’re transitioning to PD.
That doesn’t really make sense. That coupled with the
question about hospice makes me think these are all
just temporary measures meant to make someone (or
their family) "fell better" and not really intended as a
long term solution or treatment.

I’m sorry if that sounds cold, but it’s the only logical
answer I can come up with. At 83 years of age,
I wouldn’t go along with all this, but it’s not my life. 
I’d chose comfort over complex medical procedures 
and daily interventions that aren’t going do much more 
than provide false hope and keep me tied to a machine.

Again, I know that sounds harsh. I apologize, and my
thoughts and prayers are honestly with you and your
friend. No form of dialysis is an easy road.

I agree with all of the above.  My father developed end-stage kidney disease at age 70 as a result of years of persistent hypertension, several heart attacks and severe CHF.  When his kidneys failed, they put him on machine dialysis.   The machine dialysis was problematic from the start.  His heart was so weak that it couldn't tolerate the sudden shift in fluid volume that a dialysis session entailed.   They tried doing sessions in which they didn't take off so much fluid, which he was able to tolerate.  I don't know if anything has changed, but at that time (late '80s) they absolutely wouldn't dialise somebody more than 3 times in a week.  When they tried the reduced volume, he was able to tolerate it, but but he couldn't make it through to another dialysis session, but, for whatever reason, they couldn't just slip in another dialysis session.  I always suspected it was more of a utilization problem than a medical problem.

Eventually, they decided he was going to have to go to peritoneal dialysis.  I sat through the training with him, and I know the dialysis nurse had her doubts, because a couple of time she asked me if I was sure he could do it.   For a couple of weeks, I supervised as he was doing his fluid exchanges and everything seemed fine, so I left him on his own.  This was the start of a succession of hospitalizations to treat him for peritonitis probably as result of breaks in technique, although he insisted he was doing everything perfectly.  At one point, they had to replace the catheter, during which time he was back on machine dialysis with all of its problems.   Ultimately he died from complications related to the peritoneal dialysis.  He had to be hopitalized to treat a severe diarrhea, probably brought on by the antibiotics they had just used to treat his most recent bout of peritonitis and he had a cardiac arrest the day before he was to be discharged.  It was a 2-year nightmare.

I had a neighbor who was on peritoneal dialysis, and he did fine for probably ten years.  Eventually, for some reason, he had to go to machine dialysis.

I had an older friend in his mid-80s who had CKD.  When he was at the threshhold of stage 5, he decided he wanted nothing to do with dialysis and opted instead for assisted suicide. 

Edited March 10, 2023 by Rudynate
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[Rod Hagen]

11 hours ago, Rudynate said:

I agree with all of the above.  My father developed end-stage kidney disease at age 70 as a result of years of persistent hypertension, several heart attacks and severe CHF.  When his kidneys failed, they put him on machine dialysis.   The machine dialysis was problematic from the start.  His heart was so weak that it couldn't tolerate the sudden shift in fluid volume that a dialysis session entailed.   They tried doing sessions in which they didn't take off so much fluid, which he was able to tolerate.  I don't know if anything has changed, but at that time (late '80s) they absolutely wouldn't dialise somebody more than 3 times in a week.  When they tried the reduced volume, he was able to tolerate it, but but he couldn't make it through to another dialysis session, but, for whatever reason, they couldn't just slip in another dialysis session.  I always suspected it was more of a utilization problem than a medical problem.

Eventually, they decided he was going to have to go to peritoneal dialysis.  I sat through the training with him, and I know the dialysis nurse had her doubts, because a couple of time she asked me if I was sure he could do it.   For a couple of weeks, I supervised as he was doing his fluid exchanges and everything seemed fine, so I left him on his own.  This was the start of a succession of hospitalizations to treat him for peritonitis probably as result of breaks in technique, although he insisted he was doing everything perfectly.  At one point, they had to replace the catheter, during which time he was back on machine dialysis with all of its problems.   Ultimately he died from complications related to the peritoneal dialysis.  He had to be hopitalized to treat a severe diarrhea, probably brought on by the antibiotics they had just used to treat his most recent bout of peritonitis and he had a cardiac arrest the day before he was to be discharged.  It was a 2-year nightmare.

I had a neighbor who was on peritoneal dialysis, and he did fine for probably ten years.  Eventually, for some reason, he had to go to machine dialysis.

I had an older friend in his mid-80s who had CKD.  When he was at the threshhold of stage 5, he decided he wanted nothing to do with dialysis and opted instead for assisted suicide. 

Thank you.

[Rod Hagen]

Thank you again, all of you.  After reviewing this information, and beginning his Peritoneal Dialysis training, he decided that it was too dangerous, and entered home hospice.  He died, in his house in his bed with me there, a few weeks later.

[+ nycman]

1 hour ago, Rod Hagen said:

Thank you again, all of you.  After reviewing this information, and beginning his Peritoneal Dialysis training, he decided that it was too dangerous, and entered home hospice.  He died, in his house in his bed with me there, a few weeks later.

I’m sorry for your loss.

[Rod Hagen]

3 hours ago, nycman said:

I’m sorry for your loss.

Thank you.

[Rudynate]

17 hours ago, Rod Hagen said:

Thank you again, all of you.  After reviewing this information, and beginning his Peritoneal Dialysis training, he decided that it was too dangerous, and entered home hospice.  He died, in his house in his bed with me there, a few weeks later.

He was  lucky to have such a devoted friend.  Very sorry for your loss.