Just been told it's time for dialysis....

[tsengyu1943]

Hi there,

I'm new here, been reading the posts for awhile.... my mil's neph just told us that she need to start dialysis soon, her eGFR is currently at 6.  The dialysis center just called and ask for insurance information and nothing more.  What is going to happen next?  I was told that we need to have a training for PD and a surgery for catheter placement... are they going to give her surgery first or training first?? And how long does the training take??  I'll be taking the training for her since she is blind and cannot do this herself.  I'm curious and at the same time scared for her.....



PK

[obsidianom]

My first question is , are you going to be available EVERY DAY to do the work for her as she is blind?  I cant imagine she will be able to help at all so you are going to have to be the one doing the exchanges and /or running the cycler every day. Do you live with her? If you dont then someone who lives with her will need to be trained as there could be emergencies that her blindness and untrained people around her cant handle.
 The catheter needs to be in place to actually do any PD so I would think she needs that as soon as possible.  Is she prepared for PD? Does she understand what it will entail at home? Do you?  That info would be helpful. 

[Shaks24]

You have to have the PD Catheter in place to even do the training as it is hands on and you do exchanges throughout the training. Once the catheter is in place the exit site usually has to heal for at least two weeks before it can be used. Initially the training is typically done for manual exchanges and then you proceed to training on the cycler. In my case, I started training on September 27th, 2013 on manual exchanges and moved to the cycler  in October 2013. The Catheter surgery is straight forward and typically is done in an outpatient surgical setting. I had an AV Fistula placed in my left arm at the same time in case PD did not work or had to be stopped for any reason. The Fistula serves as back up and by having it done at the same time as the catheter I avoid having to be put under a second time for possible Hemo access. I wish you the best of luck with this situation. If you have any more questions please ask. Your situation may be different as you are a care giver.

[Bill Peckham]

Is your MIL independent minded? People who are blind are able to preform routine PD treatments.
https://nfb.org/images/nfb/publications/vod/vodsum0112.htm the more your MIL can do the easier it will be for all.

It sounds like your unit is being less than helpful, checkout www.kidneyschool.org to get up to speed on the basics and there is a book available too http://lifeoptions.org/help_book

Not all units are the same if you are in an area with options check in with some of the other dialysis providers.

[Jean]

 How old is your MIL? Seems to me the neph you have should have started her earlier. Was she feeling ill all this time, or was it relatively sudden. Boy, we ask a lot of questions, don't we and here you are looking for answers. Read all you can on this site and others if you can and hang tough!!! We are always here for you.

[tsengyu1943]

My first question is , are you going to be available EVERY DAY to do the work for her as she is blind?  I cant imagine she will be able to help at all so you are going to have to be the one doing the exchanges and /or running the cycler every day. Do you live with her? If you dont then someone who lives with her will need to be trained as there could be emergencies that her blindness and untrained people around her cant handle.
 The catheter needs to be in place to actually do any PD so I would think she needs that as soon as possible.  Is she prepared for PD? Does she understand what it will entail at home? Do you?  That info would be helpful.

I'm living with her, and so far we are hoping to do the PD with the cycler at night so she doesn't need someone to help her to change the fluid every couple of hours.  But currently we don't know if her body condition can take the cycler or not.  We were told once she has the catheter in, we'll need to do the manual few times to know what kind of solution she needs and if her tummy is ably to take the cycler.  As far as I know, she's very independent but because of her age (she's 70 yr.), she's afraid of change and reluctant to learn new things especially it's machine related.  It would be great if she can learn to do it herself, but I'm afraid she would get infection if she's not careful enough.


PK

[tsengyu1943]

You have to have the PD Catheter in place to even do the training as it is hands on and you do exchanges throughout the training. Once the catheter is in place the exit site usually has to heal for at least two weeks before it can be used. Initially the training is typically done for manual exchanges and then you proceed to training on the cycler. In my case, I started training on September 27th, 2013 on manual exchanges and moved to the cycler  in October 2013. The Catheter surgery is straight forward and typically is done in an outpatient surgical setting. I had an AV Fistula placed in my left arm at the same time in case PD did not work or had to be stopped for any reason. The Fistula serves as back up and by having it done at the same time as the catheter I avoid having to be put under a second time for possible Hemo access. I wish you the best of luck with this situation. If you have any more questions please ask. Your situation may be different as you are a care giver.

Shaks24

How long is the training to do the manual exchange?  I already took the class where they show us different selections for the dialysis, and CAPD seems very straight forward to me, that I probably don't need to much time to remember the steps. I think having fistula and catheter schedule at the same time is a great idea but b/c of her age, I think it's best to give her just one at the time.

PK

[tsengyu1943]

Is your MIL independent minded? People who are blind are able to preform routine PD treatments.
https://nfb.org/images/nfb/publications/vod/vodsum0112.htm the more your MIL can do the easier it will be for all.

It sounds like your unit is being less than helpful, checkout www.kidneyschool.org to get up to speed on the basics and there is a book available too http://lifeoptions.org/help_book

Not all units are the same if you are in an area with options check in with some of the other dialysis providers.

Hi Bill,

Thanx for the info, I'll read them up and to get my knowledge up to the speed before going thru the process.  My MIL is typically very independent but b/c of language barrier and lack of common sense knowledge, it might be harder to train her to do it herself.  Plus she drop things all the time, and we're afraid she could get infection easily like that..


PK

[tsengyu1943]

How old is your MIL? Seems to me the neph you have should have started her earlier. Was she feeling ill all this time, or was it relatively sudden. Boy, we ask a lot of questions, don't we and here you are looking for answers. Read all you can on this site and others if you can and hang tough!!! We are always here for you.

Hi Jean,

My mil is 70.  You know what's surprising is that she's not ill at all.  She doesn't have any discomfort, still eat a lot every meal, sleep well, still urinate and no itching anywhere.  Basically the only hold up is her insurance, and now, with all the ducks in a row, they were able to proceed to get her process going.  My mil wish to live without dialysis until she get's ill but since she just had a severe sepsis few months ago, our neph feels that she shouldn't wait any longer. And thanx for the encouragement!!!!


PK

[Shaks24]

If I recall correctly, it was about 2 weeks doing manual exchanges.

[obsidianom]

If she had a fistula surgically created now it could be ready in about 2 months if needed in case of issues with PD. There is nothing she really has to do after the surgery as it will mature on its own. Some simple hand exercises can help but arent a big deal. Obviosly PD will be much easier if that works out for you but its a good idea to be prepared .     Good luck.

[Simon Dog]

If I recall correctly, it was about 2 weeks doing manual exchanges.

My PD training was 2 or 3 days, followed by two weeks of manual exchanges before being brought back for a couple of days of cycler training.

[tsengyu1943]

If I recall correctly, it was about 2 weeks doing manual exchanges.

Shaks24, so manual is about two weeks, like 5 days a week and half day each time? I wonder how long is the training for the cycler.  We are still waiting for the nurse to call to schedule the surgery for the catheter, I hope won't take too long...

[tsengyu1943]

If I recall correctly, it was about 2 weeks doing manual exchanges.

My PD training was 2 or 3 days, followed by two weeks of manual exchanges before being brought back for a couple of days of cycler training.

Simon Dog, so most dr usually put patients on manual exchange for several weeks before they start on the cycler.  Is it b/c they need to do all sort of tests before they know the patient's body can take cycler?

[Joe]

My cycler training took a week, and this after I had been doing manuals for a month to get a full cycle through with labs and everything.

[tsengyu1943]

My cycler training took a week, and this after I had been doing manuals for a month to get a full cycle through with labs and everything.

Thanx Joe, so I'll take that most people will have to do the manual for weeks before progress to the cycler.  I'm trying to get a sense of the timeline so I have a better idea, since I'll need to take a trip back to CA for a month in April.  Just want to get her on cycler before I take off so my hubby can hook her up at night and take her off before he heads out to work.

PK

[Shaks24]

If I recall correctly, it was about 2 weeks doing manual exchanges.

Shaks24, so manual is about two weeks, like 5 days a week and half day each time? I wonder how long is the training for the cycler.  We are still waiting for the nurse to call to schedule the surgery for the catheter, I hope won't take too long...

That sounds about right for me. Keep in mind that while she is on cycler at night things can happen. Lines can crimp causing alarms, she can have issues filling or draining and etc. Probably someone should be nearby in the event of issues like this. I am sure they give guidance for care givers in training.

[tsengyu1943]

If I recall correctly, it was about 2 weeks doing manual exchanges.

Shaks24, so manual is about two weeks, like 5 days a week and half day each time? I wonder how long is the training for the cycler.  We are still waiting for the nurse to call to schedule the surgery for the catheter, I hope won't take too long...

That sounds about right for me. Keep in mind that while she is on cycler at night things can happen. Lines can crimp causing alarms, she can have issues filling or draining and etc. Probably someone should be nearby in the event of issues like this. I am sure they give guidance for care givers in training.

there's always someone in the house at night, if i'm not around, my hubby would so it should be fine.  But I guess cycler have it's own pro/cons., and some how I'm not that excited to find out.  I hope we don't run into those problem too often. 

[Shaks24]

In my case it was a rocky start on the cycler. Now it has become routine after switching to Tidal program and learning little tricks about sleeping while hooked up. I remember one night in the early stages where I had 17 alarms. Now I rarely have them.

[Simon Dog]

Simon Dog, so most dr usually put patients on manual exchange for several weeks before they start on the cycler.  Is it b/c they need to do all sort of tests before they know the patient's body can take cycler?

There isn't any extra stress on the body from the cycler.   The test (PET) is to determine the quantity and concentration of exchanges needed to get proper clearance.

The reason for the weeks on manual exchange is to give the patient time to develop full competence and habits with the manual exchange, as this is a skill that is needed if there is ever a cycler problem, or if the doc orders a daytime exchange in addition to the cycler.  Even though you will leave training with all the necessary skills, nothing beats a few weeks of practice to turn recently learned skills into fully mastered habits.   Anyone who has aced a final in college and then promptly forgot half the subject material by the next morning will understand.

[tsengyu1943]

In my case it was a rocky start on the cycler. Now it has become routine after switching to Tidal program and learning little tricks about sleeping while hooked up. I remember one night in the early stages where I had 17 alarms. Now I rarely have them.

Shaks24
I think my main concern is the toilet run in the middle of the night, my mil is blind, and I don't think she can put the machine on pause and put on the opti-cap and go to the loo then hook herself back afterward.  She still urinate every 2 hrs during night time....  just thinking about this makes my head hurt..  =(

[tsengyu1943]

Simon Dog, so most dr usually put patients on manual exchange for several weeks before they start on the cycler.  Is it b/c they need to do all sort of tests before they know the patient's body can take cycler?

There isn't any extra stress on the body from the cycler.   The test (PET) is to determine the quantity and concentration of exchanges needed to get proper clearance.

The reason for the weeks on manual exchange is to give the patient time to develop full competence and habits with the manual exchange, as this is a skill that is needed if there is ever a cycler problem, or if the doc orders a daytime exchange in addition to the cycler.  Even though you will leave training with all the necessary skills, nothing beats a few weeks of practice to turn recently learned skills into fully mastered habits.   Anyone who has aced a final in college and then promptly forgot half the subject material by the next morning will understand.

Simon Dog, that's strange, then how come the dr said not everyone can use the cycler... i guess that's one question I need to ask the nurse after the surgery.  It's overwhelming just to go thru the training video online..but i'm sure after doing it a few weeks, it will be like driving... 

[Simon Dog]

Simon Dog, that's strange, then how come the dr said not everyone can use the cycler... i guess that's one question I need to ask the nurse after the surgery.  It's overwhelming just to go thru the training video online..but i'm sure after doing it a few weeks, it will be like driving... 

Guess my doc didn't tell me everything 

Where I was on PD I ordered the 20 ft lines (FMC Liberty cycler) which enabled toilet runs without unhooking.

[tsengyu1943]

Simon Dog, that's strange, then how come the dr said not everyone can use the cycler... i guess that's one question I need to ask the nurse after the surgery.  It's overwhelming just to go thru the training video online..but i'm sure after doing it a few weeks, it will be like driving... 

Guess my doc didn't tell me everything 

Where I was on PD I ordered the 20 ft lines (FMC Liberty cycler) which enabled toilet runs without unhooking.

Simon Dog,
Ahh... good idea, but I hope she won't tripped over on the line..

[Shaks24]

They make a cassette with a 20' patient line??? I know about the 20' drain line but did not know they had a 20' patient line. I think the ones I use are 10' or maybe 15'.