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Author Topic: Do you prefer using the cycler?  (Read 1288 times)
Angiepkd
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« on: January 15, 2017, 08:29:18 PM »

Working on getting my PD catheter placed and was curious about what method you all prefer. I have heard the cycler is harder on your peritoneum.  It is a tempting option for me, so I can have my days free. I can do the CAPD, and certainly will if it allows me to stay on PD longer. Another transplant is not in the cards any time soon.  Any thoughts are greatly appreciated!  Thanks.
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PKD diagnosis at 17
Cancer May 2011, surgery and no further treatment but placed on 2 year wait for transplant
October 2011 first fistula in left wrist
April 2012 second fistula in upper arm, disconnect of wrist
January 2013, stage 5 ESRD
March 2013 training with NxStage home hemo
April 2013 at home with NxStage
April 2013 fistula revision to reduce flow
May 2013 advised to have double nephrectomy, liver cyst ablation and hernia repair. Awaiting insurance approval to begin transplant testing. Surgery in June.
June 2013 bilateral nephrectomy.
August 2013 finishing testing for transplant, 4 potential donors being tissue typed.
January 2014 husband approved to donate kidney for me
March 4th 2014 received transplant from awesome hubby. Named the new bean FK (fat kidney) lol!  So far we are doing great!
cassandra
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When all else fails run in circles, shout loudly

« Reply #1 on: January 16, 2017, 12:41:09 AM »

Hi Angie, I was nowhere near as informed as you are now. When I lost dad's kidney I was informed that I had to do hemo again. The fistula that was created infiltrated so badly that hemo was not poss anymore. PD had been excluded before because of all the abdominal surgeries I had had in a previous life  ;D
But turned out it worked smoothly.
I started with capd as there was no choice back than. As I was still working, and young I was offered APD Baxter.

Pro CAPD: 1. you can do exchanges anywhere where there's a socket, and hand-wash/cleaning facilities.
Con.           1. It's hassle to exchange on a schedule 3/4/5/6 times a day.

Pro APD. 1. Your days are free whether 'dry' or 'wet'.
                2. You can always do some emergency CAPD exchanges in case you don't/can't sleep next to your machine.
Con.         1. Your nights will be connected to a filling emptying machine which I had to get used to, and had to start using Diazepam to actually sleep so I could                           function during the day. Hubby never had a problem with his sleep.

Thinking about it again (long time ago) I preferred APD

Luck and wisdom on your choice, love, Cas
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
       still on waitinglist, still ok I think
kickingandscreaming
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« Reply #2 on: January 16, 2017, 04:44:52 AM »

No one ever mentioned that the cycler was harder on my peritoneum.  I hope you're wrong about that.  The cycler is infinitely more freeing to your lifestyle than doing manual exchanges all day long.  In my case, because of the nature of my peritoneum, I need to do many short exchanges (1.5 hours each).  When I had to do that manually, I was a prisoner to the process and constantly interuping everything.  Now, it does its thing while I sleep.  The other thing about the cycler is that it requires many fewer hookups and hence less exposure to the danger points for infection.  That's important to the peritoneum too.
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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 #3 on: January 16, 2017, 06:03:46 AM »


K&S makes a great point about the number of connections increasing the chances for error and infection.

I did manuals for my first year on PD.  We had three dogs and two cats inside the house and they all thought I was the designated door opener.  When each one wanted out they came to me..I wished they would agree on times and all go together, but it worked that way.

Being sort of active and getting outside daily, I stayed busy getting my hands dirty constantly.  Stopping, cleaning up, coming in doing and exchange interrupted my work greatly.  Only after losing two dogs and a cat to old age and infirmities I switched to using the Cycler.  It was a major change NOT being interupted during the day.  Granted, an 11 hour program did shorten my evenings considerabley.  But I soon learned I could cap off, roam free, and return to connect before my Dwell time expired.  My Nurse wasn't too happy with this arrangement, telling me I was increasing my risk of infection.  But I remained quite careful and thought I was doing fine.

Until I became infected.  But 3 1/2 years clean, I don't think it was my disconnects.  I am SURE I made contact during set-up, causing a 'dry contamination'.  So much for hurrying to get set up.   That ain't ever going to happen again.

As for damage to the membrane.  I never heard of this except as a result of using the red bags with the highest concentration of sugar.  As long as you are able to use only green and Yellow you should remain fine.  Unless you are that rare person that has tumerous growths caused by PD.  These may be tested for with an ultrasound.  Perhaps you should voice that concern with your Neph and decide an an annual test.

PD works best while the sugar concentration is higher than the blood sugar.  Dwell time can be dependant on the concentration ised, a lower concentration should not be swelled too long as the sugar tends to balance out then re absorption is possible.  Dwell times up to one and a half hour prevent this.

4 hour manual drains may be too long using Yello bags.  Fine with Green.  Be aware of this if doing manuals.  If using Yellow and your drains are NOT measuring much of a positive uF perhaps those dwells are too long and need to be shortened to only 2 hours.

Hope this all makes sense.  It can be a lot of information for a beginner.

Take Care,

Charlie B53
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Tío Riñon
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« Reply #4 on: January 25, 2017, 07:32:08 AM »

I prefer using the cycler for dialysis.  It provides me with more freedom and flexibility.  As others have stated above, you connect before bed and disconnect the following morning.  I have used this technique for 5.5 years and will continue to do so as long as possible.  Yes, I have heard that the peritoneum can wear out, but I will take my chances.

Due to the cycler, I was able to work for a number of years.  I have also studied at a university in another state and traveled extensively around the US and other countries (including a cruise).  I am not limited in living my life as I choose.  I can visit friends and family and have the solution shipped to the location where I am staying for free in the US.  The machine is portable enough to carry in a car or via a bus, train, plane, or ship.  If I were on HD, I would need to contact facilities in advance to request a spot and schedule my trip around their availability.

Manual bags are always available as a back-up.  However, if there is a problem with my cycler, Baxter usually gets a replacement to me in 24 hours.

If you have further questions or concerns, please feel free to ask.

 
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Simon Dog
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« Reply #5 on: January 25, 2017, 12:02:41 PM »

Quote
I never heard of this except as a result of using the red bags with the highest concentration of sugar
It is common over a number of years, even with the yellow and green bags.
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OneForTheBirds
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« Reply #6 on: January 25, 2017, 05:00:10 PM »

I decided to return to CAPD after 2 months on the cycler.

I like to go to sleep and wake up when I feel like it and the cycler was really cramping my style.

I don't think the cycler does that good a job draining.  Whenever I hear the drain sounds I wake up, and sit up, otherwise the drain is incomplete.

I also don't like to spend 14 hours a day with the Extraneal, I am not as comfortable with it as I am with the Physioneal.

I don't mind the exchanges after lunch and supper, my hook is right next to the computer so time passes quickly.
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Angiepkd
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« Reply #7 on: January 30, 2017, 08:11:13 AM »

Wow!  Thanks everyone. It is a lot to think about. I guess I will see what the doc recommends and go from there. Thanks again!
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PKD diagnosis at 17
Cancer May 2011, surgery and no further treatment but placed on 2 year wait for transplant
October 2011 first fistula in left wrist
April 2012 second fistula in upper arm, disconnect of wrist
January 2013, stage 5 ESRD
March 2013 training with NxStage home hemo
April 2013 at home with NxStage
April 2013 fistula revision to reduce flow
May 2013 advised to have double nephrectomy, liver cyst ablation and hernia repair. Awaiting insurance approval to begin transplant testing. Surgery in June.
June 2013 bilateral nephrectomy.
August 2013 finishing testing for transplant, 4 potential donors being tissue typed.
January 2014 husband approved to donate kidney for me
March 4th 2014 received transplant from awesome hubby. Named the new bean FK (fat kidney) lol!  So far we are doing great!
KBC300
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« Reply #8 on: March 13, 2017, 03:07:27 PM »

I have been using the Liberty Cycler since November. I should say I am now using my 4th Liberty Cycler since November. I am quite frustrated with not being able to trust that the machine will work consistently & correctly for more than a month at a time. The last one only lasted two weeks!  Otherwise, I enjoy the freedom that using the Cycler gives me.  Has anyone elated had this kind of luck with Fresenius?
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KBC300😽
SKS
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« Reply #9 on: July 30, 2017, 08:46:35 PM »

Adding a fresh post to this as I'm looking for as much input as possible.  He's been on PD cycler now for 9 days.  Fair amount of problems with drain but otherwise other than the large amount of "stuff" to dispose of - thank heaven for a trash compactor - seems to be a vast improvement over the hemo we had to use in FL in the winter as snowbirds.  Looking for additional input on CPAP patients on cycler.
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Simon Dog
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« Reply #10 on: July 30, 2017, 10:35:42 PM »

I was a CAPD patient on cycler, then I was on cycler with one mid-day exchange, and finally was evicted from the PD program due to low clearance.   I definitely liked the cycler and didn't have any problems with it other than an occasional alarm.
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solid98
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« Reply #11 on: July 31, 2017, 04:45:32 PM »

I had problems with insufficient drains until I figured out I had to sleep on my right side exclusively. It also took a few tries before I found a way to tape up my line so it wouldn't pinch off in the night. I also make a point of setting my alarm to wake me up just when my last drain starts, so I can sit up on the edge of the bed or stand up to drain totally. I start my set up at 9, get it running by 9:30, and by 5:30 the next morning my final drain starts.

Any specific concerns you have about cycler?
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SKS
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« Reply #12 on: August 09, 2017, 09:35:08 AM »

19 days and counting - Tomorrow we go AGAIN for what the PD nurse calls a PET test - went on Monday but sent home because I wasn't paying enough attention and some of the manual bag drained into the drain bag - I didn't realize how much until I weighed it and there was 700.  SO 1300 went in and the next day at +11 hours only 1,000 came out.  After numerous calls they sent us home to come back tomorrow.  I'll make DARN sure 2000 goes in tonight.

RE: concerns on cycler - I asked Baxter if the pumping action can be defective and was told explicitly "No"   Input????   I check lines, for kinks, make him move, etc etc.  so far no consistency in problem.  We have the Home Choice Pro.  I do the "Stop" then "go"  then arrow to watch what is happening. 

I "think" he's reabsorbing in addition to other issues for 2 reasons:  1. the first fill when dwell is 2:22 is always the smallest drain usually about -270 and the last fill which normally is only about 1:15-1:30 is normally a + 500 give or take.  This is using 2 green bags and fluid is building even though he's being careful. and 2: his Blood sugar (insulin diabetic) is running higher in AM which it didn't do before PD.  His program is 8 1/2 hours; 3 fills and a final all 2000 as he did not tolerate above that level.  The blood work so far seems to be in desirable range. 

On hemo the fluid retention in feet (which had been a severe problem before hemo for about 3-4 years) was not an issue - we got explanation from Drs  (multiple) and nurse that make sense - that hemo over pulls from the blood so the blood circulating pulls fluid from the tissue. PD relies on the system pulling - he has limited mobility which also reduces the effectiveness of the system pulling fluid.

I'm hoping to get to a full nights sleep with only my old dogs and myself to wake up for bathroom :)  Not complaining though sure beats what we went thru in Florida on hemo at the center there.

« Last Edit: August 09, 2017, 09:46:12 AM by SKS » Logged
SKS
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« Reply #13 on: August 09, 2017, 09:36:56 AM »

Solid98: is your catheter entry on the right side or the left side?
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solid98
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« Reply #14 on: August 09, 2017, 04:18:28 PM »

Solid98: is your catheter entry on the right side or the left side?

Cath exits on the left side but the internal end of the tube is definitely on my right side. There have been nights I unknowingly roll over on my left side and the dang machine spends 2 hours trying to drain and usually stops at -500ml. With a 2200ml fill, that usually means I get woke up with over 3L loaded up.
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SKS
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« Reply #15 on: August 10, 2017, 06:12:07 AM »

Solid98: is your catheter entry on the right side or the left side?

Cath exits on the left side but the internal end of the tube is definitely on my right side. There have been nights I unknowingly roll over on my left side and the dang machine spends 2 hours trying to drain and usually stops at -500ml. With a 2200ml fill, that usually means I get woke up with over 3L loaded up.

OK thx - his exits on right so left should be his best side for draining. Sometimes yes sometimes no so far but we'll work on more turns to the left because we'd "thought" it was draining better on right side.  As Russ says "there I go thinking again".  He says it always gets me in trouble because I tend to overthink
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solid98
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« Reply #16 on: August 10, 2017, 08:16:42 AM »

I also was able to get a case of just drain bags for those times I don't feel like I thoroughly drained. You might try to get your SO to do a manual drain right after the cycle to see if it all got sucked out.

It's easy to get frustrated because sometimes everything works great and sometimes absolutely nothing goes right for absolutely no reason. When the initial drain starts, I'm able, sometimes, to feel the pressure of the suction in my lower abdomen right above my right leg which is how I know where my cath is. When I first started my training, the drain pain was right in the middle above Mr. Winky. That pain was an eye opener! The cath has moved around but I feel, with my consistent right side sleeping, the end has moved to the right and consistently stayed there.

That's the other funny thing. The surgeon didn't even ask where I would prefer the cath exit site to be. I thought he would ask a question or two. I don't know how he made that decision. If I remember, I thought I read a post from a member here who has his cath exit up high in the center of his chest. With my exit site so far on the left, I can't sleep on that side without kinking the line. I also can't sleep on my back or my stomach.
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kickingandscreaming
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« Reply #17 on: August 10, 2017, 10:42:01 AM »

My PD cath exits on the right and that's where I asked for it to go.  I sleep on my back and the catheter drapes over the right side of the bed.  My cycler is also to the right of my bed.  I can't sleep on  my side at all because it's so uncomfortable to squish all the fluid in  my belly. So I sleep semi-reclining and draining works just fine for me.
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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
SKS
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« Reply #18 on: August 14, 2017, 08:27:07 PM »

update - our PD nurse changed program for no last fill but 4 cycles.  - I've tried manual drain after but it after two manual processes I still get from 100-300 with the bag direct connected for gravity drain.  SO I decided to just connect the manual drain bag after the "end of Therapy" message - each time so far gravity drain of 1 full liter.  I have logged all sorts of data cycle by cycle and day by day but I won't bore anyone with all of that here.  Today the PD  nurse and I decided that we need to have a new cycler sent out.  Oh by the way found out that an alarm can trigger and then after 3-4 beeps before I can get up to restart and make him roll or turn or just plain move around some it stops.  That happened for the first time Sat. AM  before that when it alarmed it alarmed - the PD nurse said I'm teaching her all sorts of new problems ;)  I am so grateful for her and that she appreciates my extra attention to detail.  So far since we changed to 4 cycles, I've not had all 4 alarm but at least 2 of the cycles are negative drain each day.
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