Cycler Questions

[Charlie B53]

Wanting to know more about the Cycler.

Am I a good candidate?  Is it capable of using three different solutions?  If not, will it use two different solutions and then I do only one manual?

I ask because I currently do 4 manual changes every day.

9a.m. drain out the overnight ICO and refill with 1 1/2%
Noon drain out the 1 1/2 and refill with 2 1/2%
4p.m. drain out 2 1/2 and refill with 1 1/2%
7p.m. drain out 1 1/2 and refill with ICO for the long over-night dwell

I am wondering if I can use the cycler to do the 1 1/2 and 2 1/2 changes during the night, fill with the ICO and dwell all day. leaving me free to go fishing, or maybe even get a job.  To have all day to do most anything other than have to keep doing exchanges.

I spend way too much time sitting here and not getting much done.

Don't get me wrong, I do enjoy the time that I get to browse and read, but it isn't watering the garden, or making me any money.

My big (butt) can get big(er) if I continue to sit here not really burning much calories.

Since I started PD I am not sick.  Seriously weak mostly due to lack of most any real physical exertion.

Work of most any sort should be good for the body, and might help my mind to make me feel somewhat productive again.

I won't see my Neph and team again til mid July, but I want to know enough by then that I can ask intelligent questions.

Is the cycler a good option, can I switch my day/night swells around so to carry ICO by day and not have to take time to do exchanges at work, or play?

Edit: Next appt is mid AUG, not July.  Already saw them this month.

[cassandra]

Hi Charlie its been a while I did the cycler, but at the time (15 yrs ago) I used 1 type on the cycler over night, and an extraneal bag during the day, so I could keep my job. There's also a tidal program on it which made it more comfy. I'm sure you'll get more up-to-date answers soon, but didn't want you to have no answers at all at your app. (Just in case)

[Charlie B53]

Thanks Cassandra

I' thinking the Cycler will handle the two solutions and that I can set the dwell time for each seperately. Then I can just fill with the ICO in the morning and be free of exchanges til bedtime.

That would be great to have my days open again.

I doubt if I would reopen my shop full time, but even part time would get me out of the house and on my feet and moving.  I might even burn of a calorie or two!

Take the G'kid fishing and not have to worry about making a change.  We don't go now as I won't leave him alone near the water so I can make an exchange in the truck.  And no way will he hold still for a minute, he's a kid and constantly going.  I need that, him, to make me do more.  I bet he is THE most important reason that I am still here.  Mom and Dad are both next to worthless.  I've had him since less than a month old.  Will be 8 Nov 20, just the last two years he has stayed home with Mom a few nights a week so he can ride the bus to school.  No school, he's with me.  We do things together, go out to the barn and take something apart just so we can clean it and put it back together again.  He knows wrench sizes, fractions, and which way to turn a bolt.  He is scary smart and figures things out very quickly.  Got his Grampa's brain.

[Bambino_Bear]

Hi Charlie!

My husband uses the Liberty cycler.  He does 2 bags (I think it can do more) of 5000ml.  You can mix the different strengths.  He is on for 9.5 hours a night.  The line from him to the machine is 20 feet so he can get to the bathroom and to our TV room.  He really likes being able to do things during the day and be hooked up while he is sleeping. 

Hope that helps!

 

[amanda100wilson]

The first fill we be from whatever strength bag is on the cycler.  After that it will be a mix of whatever is remaining in the bag on the cyclet, and whatever strength the feeder bags are.  Then the last fill can be set for extra eval (icodextrin). To do this, it pumps the bag on the cycler empty and then fill it with icodextrin.

[Charlie B53]

I used to do 3 exchanges all 2 1/2% then the Ico for over-night.  After starting insulin with meals my sugars dropped to near normal and 3 2's pulled off too much water.  My weight went down over 11 pounds and my blood pressures started falling way too low.  So we switch the first and third changes to 1 1/2 and shortened the dwell time on those to 3 hours.  4 hours my drain would start to be under 2 liters, I was re-absorbing fluid.  3 hour drains are right at 2000 to 2100, just right. My midday, noon fill with 2 1/2% and a 4 hour dwell averages almost 2300 drain.  Over night Ico anywhere from 2300 to 2500, depending on how much I've sweated and drank during the day.

If I could set and load the machine for 2 three hour cycles of 1 1/2 and one 4 hour dwell of 2 1/2, hook up at 9 p.m., disconnect empty at 7 a.m. and manually fill with Ico for the day, I'd be set.

I would have to adjust my insulin a bit.  The Ico doesn't affect my sugars so I would have to cut back  during the day and increase my dose at night as the exchanges do add sugar to my system 30 to 40 points depending on the solution.  I could take a small shot at bedtime for the first exchange, but the next two I would have to wait til morning and take a shot to bring it back down.  I wouldn't want to take it all to early as it could drop my sugar too much long before the exchanges happened.  It's not a good thing when you slightly O.D. and your sugar goes too low.

I'm sure I can make this work.  I just have to talk to my team, get them to OK it then go to another round of train for the machine.  To bad that won't start today.  I won't see them til mid-Aug.  Still, it's far better a bit late then never.  So I shouldn't complain too much.

[Joe]

Charlie, as Amanda said, on the cycler you will fill for the first time from the highest strength bag that is on the heater. After that, the machine will mix the 2.5 and 1.5 solutions as it tops the heater bag off after every fill.

You are correct in checking with your PD team and Neph and seeing what they have to say about going on CCPD. Wish you the best of luck as you continue on your journey.

[JLM]

I do 5 dwells a night then a 500 ml fill at the end.  I don't have to think about dialysis until I hook up before I go the bed.  My treatment takes appox. 8.5 hours.

[Charlie B53]

I still have a LOT to learn.  I didn't know that dwells could be so much shorter than 3 or 4 hours each.

I originally was doing 4 manuals daily then draining and staying dry at night.

Evidently my 'adequacy' wasn't enough so we changed the schedule to 3 four hour dwells by day then Ico for 12 hours over night.

All's been well since.

I haven't felt the least bit 'sick' since we started, before that, we, I'm sure you all know that feeling.

It's really hard to 'hate' dialysis when it has made such a major difference in my life.

Now if we can just get my days and nights reversed, I'd be pickled tink. Must have been drinking too much of that cherry juice from the fruit salad I made.

[JLM]

It's a "love/hate" thing.  We all love the fact that dialysis keeps us alive, but we hate to be so locked in the routine.  I think of it as "my job".

[Tío Riñon]

You should definitely talk to your medical team about using a cycler.  There will probably have to be some experimentation to determine the best combination, but you should be able to switch if you choose.  I presently use the Baxter cycler.  Currently I use a 4 prong cassette with a 5-prong manifold which allows me to use 3 bags of 2.5, 1 of 1.5 and I end with extraneal.  If necessary, I could add two more bags.  I spend approximately 9.5 hours each night.  Sometime I do an extra manual during the day.

We arrived at this prescription after months of trial.  Be responsible about monitoring your results and discuss options with your team.  I'm quite happy now that I have found the right combination!

Good luck.

[Charlie B53]

Will be sure to ask questions when my monthly check-in come up.

Thanks everyone!

[Charlie B53]

Saw my D Team Wed.  A O K with them.  Dr says the machine can do all three solutions, I just need to go in a couple of days for training once they get the machine.

I'm excited.  Now that the fentenyal patches are making a difference and finally reducing the constant pain in all my joints, I am actually getting up and MOVING.  Outside, around the barn and yard, doing things that I have wanted to do for years but just couldn't, or wouldn't even attempt because of the pain.  My mailbox is straight, and solid, not all wobbly and about to fall off the post.  I pulled the transmission and changed third gear,  I've only had the new gear on the shelf at least 3 years.  But how time flies it really could be more like five.  I did have a sort of relapse for three days this week and haven't put the trans back IN the bike, but I will very soon.  Then TEST RIDE!!!

I am going to have my days free soon.  I even bought my lifetime fishing license.  Don't know where I'm going, but I'm gonna go somewhere, and not have to worry about being home in a couple of hours, or have to take a bag with me in the truck.

I could even just get out and ride along some of the river roads.  Enjoy the winding roads and the greenery, which should start changing colors pretty soon.

I'm thrilled.

[cassandra]

Very good news Charlie53

     

[PrimeTimer]

Thanks Cassandra

I' thinking the Cycler will handle the two solutions and that I can set the dwell time for each seperately. Then I can just fill with the ICO in the morning and be free of exchanges til bedtime.

That would be great to have my days open again.

I doubt if I would reopen my shop full time, but even part time would get me out of the house and on my feet and moving.  I might even burn of a calorie or two!

Take the G'kid fishing and not have to worry about making a change.  We don't go now as I won't leave him alone near the water so I can make an exchange in the truck.  And no way will he hold still for a minute, he's a kid and constantly going.  I need that, him, to make me do more.  I bet he is THE most important reason that I am still here.  Mom and Dad are both next to worthless.  I've had him since less than a month old.  Will be 8 Nov 20, just the last two years he has stayed home with Mom a few nights a week so he can ride the bus to school.  No school, he's with me.  We do things together, go out to the barn and take something apart just so we can clean it and put it back together again.  He knows wrench sizes, fractions, and which way to turn a bolt.  He is scary smart and figures things out very quickly.  Got his Grampa's brain.

Sounds like the G'kid has a wonderful grampa/mentor/teacher! What you are doing for him not only helps him but helps society...We need more grampa's (people) like you, Charlie B53! Believe me, everything you are doing with him today will stick and be there for him tomorrow. You should be thanked for teaching him to be strong, to love and enjoy the pure and simple things in life, such as fishing and to appreciate hard work and being self-sufficient (using tools, etc). Kudos!

[Charlie B53]

lol

One of my Dr's tell me I am a Saint.  I don't think so.  He didn't know me BG (Before Grandkids).  I'm pretty sure that I am going to burn in Hell for my past.  Lets just say I wasn't always such aniceguy.  Which has always been much sorta nickname, even before the web and email came to be.  It is a play on words.  an ice guy,  I've done some pretty cold things.  G'kids have changed me, a lot.  I have to teach them how to be, without a clue to how I was.   And sorta hope they never find out.  If/when they do I'll just have to have a talk with them about making better decisions.