Thinking of returning to manual exchanges

[joyfulmother]

I have been feeling awful for awhile now and yesterday I asked my nurse if switching back to manuals could help me.  She told me yes, because I was a "low-transporter".  She also told me that my doctor didn't like low transporters to do the cycler but would let them try.  I remember feeling pretty good on manuals and I've about decided to do it.

[Darthvadar]

Hi Joyful....

They tried my mum on the cycler, but it just didn't drain off the fluid... In fact, it put a litre and a half of fluid onto her overnight... Thankfully she was in hospital at the time... Took them three days to get the excess fluid off her!... Were you four  manual exchanges per day???... Mum was on four exchanges (Three Physioneal 1.36%, and one Extraneal at night)... And it's very disruptive, and time consuming... They've changed Mum's routine now and she's doing MUCH better... She's now doing three exchanges per day (One Physioneal 1.36%, one Physioneal 2.27%, and one Extraneal)... It could be worth asking your Neph. team if you could do fewer exchanges per day than before... Mum's doing very well now, after two very bad bouts of peretonitis...

It's a pity that you find the machine doesn't work for you... Mum was very disappointed too, but at least on manual exchanges, three times a day, she's doing very well, thank God... Eating anything that doesn't eat her first!!!...

May I wish you all the very best in whatever decision you come to...

May God bless and protect you...

Darth...

[peleroja]

It's your body, joyful, and you have to do what makes you feel comfortable.   

[KICKSTART]

If it feels right for you then do it. I am having the same problem at the moment but i am a high transporter, so it should be great for me , but ive never felt as bloated and lethargic as i have since i started on the cycler , although im pulling plenty off , i think its a bit much doing all my dialysis  once rather than spaced out over the day. By the time night comes i feel like a beached whale! Trouble is ive just had my delivery so im stuck with it for another month now ! Let us know how you go on .

[rookiegirl]

I have been feeling awful for awhile now and yesterday I asked my nurse if switching back to manuals could help me.  She told me yes, because I was a "low-transporter".  She also told me that my doctor didn't like low transporters to do the cycler but would let them try.  I remember feeling pretty good on manuals and I've about decided to do it.

Joy - I was like you, low transporter.  When I was on PD they started me on CCPD (cycler), but I only lasted 4 nights because I couldn't sleep because of the end drain pain.  I begged to be on CAPD (manual).  I did manual exchanges twice/day for 1.5 years.  It was so much better for me especially, I had control of closing my port when the drain pain hit.  You have to do what feels right for you.  Best of luck.

[CCStan]

Rookie Girl, I think you are just the "gal" I need to talk too.  I have read many of your post stating you where on 2 exchanges a day one of them being Extraneal.  In this post you state you were a low transporter.  How and why did your neph put you on Extraneal ?  VERY interesting   Below is a copy of another post I answered and asked that same question.  Since that post we have been told Stan will have to have another PET and if it comes back as low transporter there is no chance of even trying Extraneal.  He been having good UF with the cycler and 4.25% but that can be very hard on the membrane.   

Here is copy of previous post:

Posts: 16

    Re: Congestive Heart Failure and PD
« Reply #10 on: June 28, 2009, 08:13:17 PM »   

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Quote from: mjclark on June 28, 2009, 05:34:03 PM
Hello everyone.  I've been on PD for a year now.  It has been a fast year.  Life is a little different but I feel blessed to be able to do the CAPD.  My pet tests did NOT say I should be able to do it but my nurse says I'm mind over matter!     I feel real good and they watch me very closely at the dialysis clinic.  I am getting ready to have the "work up done" for a transplant but I'm really OK with CAPD so long as it works.  I'm 57 years old and most nights I've fine with being in bed by 10 pm and up at 8 am.  I am a foster parents and fortunately am able to "SET MY SCHEDULE" to suit myself most of the time and I don't do 8 am appts.  I've done forsenious and due to insurance (while my husband was still working) I changed to Baxter which worked out great because of the icodextrin solution they have .  I am also a very slow transporter....Just wanted to say HELLO....


MJ, You say you are on CAPD.  What type of solution are you using ?  Are you using the icodextrin(Extraneal) ?  Extraneal is used for the long dwell and according to info for HIGH transporters?

My husband after 2 bouts of fluid overload and being in hospital for several days each time( within the last month),  finally is in the process of possibily trying Extraneal.   We have been asking to "try" icodextrtrin for months !!!  It has taken (it seems like) an act of congress to get the process going to get icodextrin.     Might have more news if he will be able to get it, tomm.(Monday).

Reason given for stalling on icodextrin have been,"very expensive "low transporter".  Neph actually trying to push him off to a different clinic for home hemo.!!!  His lab work has been coming back very good,the only problem is his problem with fluid overload.  Right now have been able to get some of fluid  off  is with short dwells of 4.25%.

[KICKSTART]

Hi i have been on Extraneal for years now and as far as i know it doesnt matter if you are a high or low transporter. When i did CAPD i used extraneal through the night, now im doing APD i use it as my daytime fill. I dont know if you know this or not but extraneal ONLY pulls of fluid , it DOES NOT remove toxins. Also can i ask why you are only doing short dwells with 4.25% , if you are a low transporter you can and usually do longer dwells (because it takes more time to pull fluid off) thats why high transporters are better on a cycler because the turn around between exchanges is faster , otherwise high transporters start to absorb the dialysis fluid back into their system. You would be better to come down a strength to 3.36 and do an extra exchange to pull that fluid off, like you say 4.25's are not so good on the body (3.36's arent great)  When i have had extra fluid on me i have added an extra exchange or two , till the fluid is off , rather than go for a stronger bag.  Hope this helps ?

[CCStan]

Kickstart, thanks for reply.  The Extraneal removing the fluids is what we need.  That is why Stan landed in hospital twice in one month for fluid overload.  His othe blood shows that PD is working !!  In order to remove fluid in hosp. they resorted to doing 4.25 every hour.  Since then we have been using the 4.25 via cycler and it giving him positive UF's.  With the lighter doese
 i.e. 2.5% he starts retaining fluids.  We were told that his PET shows him to be a low/average transporter. The neph WILL NOT ok Extraneal, although we have been asking about it for months !! So he will have another PET. If it shows low/average we are 

As I said previously, the excuses are that it is to expensive and WILL NOT precribe if he is low/average transporter.  Instead he is telling us to go to home hemo.....this is something Stan does not want to do.  PD is working which is obvious by blood tests, the problem is fluid overload.  Needless to say we are quite frustrated !!  It seems that the neph just does not want to deal with us anymore, since he suggested home hemo via a different clinic.  I think for reasons that we keep asking about the possibly of trying Extraneal.  We would just what to see if it will work.  Maybe it will not, but certainly less aggressive than doing hemo.

[KICKSTART]

Yes i understand now what you are sayng and to be honest it sounds like it all comes down to money! Im not too bad in that respect ,that if i start to retain fluid i can just up the strength of a bag eg .use 1 2.27 and 3 3.36 on my cycler instead of the usual 2 +2  and just 1 or 2 extra stronger bags does it for me. What you are saying is as soon as you stop using stronger bags he puts the fluid on. Do you not have 3.36 bags over there ? Im just thinking it might be worth doing half 2.5 and half 3.36 , it wont come off all in one day (or night) but it should pull more off each night. You really need to get off the 4.25 bags. But to be honest Extraneal isnt really a miracle for pulling fluid off , i get just as good results by just upping the strength of 1 bag per night. I dont know why , i guess we are lucky over here , using Extraneal is pretty standard for long dwells.

[CCStan]

Thanks Kickstart,  We  have 1.5% dextrose, 2.5 and 4.25%. Right now we have been using 6000ml's (2) 4.25% per night on cycler.  He has finally come down to dry weight so I think tonight we will try one 2.5 and 4.25 and see if we get any UF.  Believe me after 2 episodes of fluid overload in one month have us a little antsy to try.  As it just seems so difficult to get the fluid off, after he absorbs it.

We are just so upset with neph's attitude about his whole thing.  I also feel part of the problem is that Extraneal if fairly new in USA, I believe it was approved by FDA in 2002.  So for most neph's here it does not fit into cookie cutter treatment.

Actually we feel we are at an impasse.....either play the game and potenially injure his membrane with 4.25"s or get off this neph's back and go to hemo (horrors)  It is so frustrating knowing that there might be something out there that possibly could solve this problem, but our hands are tied and we have no where to turn.

[rookiegirl]

CCStan - Where are you located?  I'm in NC.  When I was on PD, my normal manual exchanges were 2000mls 2.5%(green cap) @ night dwell for 7-8 hrs.  2000mls 7.5%(purple cap Icodextrin) in the morning which I carried all day until my evening exchange to 2.5% and so forth.  I sometimes use 2000mls 1.5%(yellow cap) when my blood pressure is too low.  The only time I use 4.25%(red cap) is if my weight is up or I see swelling in my ankles, etc..  I average about 2-3 times a month I use 4.25%.  Also, just to remind you, I still had some kidney function where I still pee, not much as before.

Are they sure that Stan is a low transporter?  I don't understand if he is a low transporter, how is it that he absorbs so much fluid?  How long does he dwell with the solution?

Here in NC, my Neph never mentioned anything about the complexity on getting on Icodextrin.  I wish you guys the best.

[CCStan]

  First of all my apoligies to Joyful Mother for hijacking her original post.  I do hope the some of the replies here have helped you.  I am so hoping you (joyful Mother) are able to get your problems resolved.  They seem to be in a similar path.

Second Thank you , for the comeback Rookie girl.  We are located in the Chicago land area (suburb of)   Stan also was doing OK when he first started manuals, UF's were OK. The troubles started when he went to the cycler and was getting contionous negative UF's.  We tried going back to manuals but he still continued on negative UF's, landing up in the 2 hosptializations.  Stan still has some kidney function, for his last Kt/v his  output was 2000ml / 24 hours.  Rookie, you mentioned that you were a low transporter and Extraneal worked for you ?  Also, Stan is on Medicare and we are being told that medicare requires certain standards ( not sure about this, but as I said before, we just keep hearing "IT"S EXPENSIVE").  Did you have regular insurance?

Stan will have another PET on Monday, if results come back low/average we are     On the cycler his dwell times are @ 1:55.  When doing manuals he was doing every 3 to 4hrs  Now if  he does manuals it is approx. 2hrs. 

I think the worst was when we were dimissed by the neph. attitude and the comment " Talk to the home hemo rep."  So I guess if we continue to question we will be kicked out of the clinic. 

Thanks for you support, if nothing else it help to be able to  with others in the same situation.  Thanks again.

[KICKSTART]

I dont know how things work over there but is there no other doctor you can see? All that you are saying seems to be wrong ( i dont mean what you are actually saying) i mean the regime. Low transporters need longer dwells and you seem to be doing short ones. Im high and do pretty much the same dwells on the cycler , manuals were the same as well. I think this is why you are retaining fluid , it doesnt seem anywhere near a long enough dwell on the cycler for a low transporter. Manuals of 2 hrs as well wont be much use to a low transporter, low really =slow , hence the need for a longer dwell time. First thing you need to do is get the PET test done and find out for sure if you are high or low and if you come back low then its definately longer dwells than the ones you are doing now. Im sorry but your doctor seems to not want to be bothered and if he can pack you off to Hemo he will from the sound of it. It may be you have a fight on your hands with him !

[rookiegirl]

Joyful Mother - I too want to apologies, but I hope some of the thread responses will help in your decision to go back to manual.  I personally loved the manual exchanges vs. the cycler.  I was blessed to have the most wonderful Neph.  His method of practice is to listen to his patients concerns.  After I throughly explained to him how I didn't like the cycler, he had no problem putting me back on CAPD.  Some love the cycler, but for me I couldn't tolerate it.  I was so miserable and tired of interrupted sleep to stop the pump when I started to feel the sharp pinching pain at the end of the drain.  Plus, I still work 40 hrs. from 8-5.

CCStan -
I have 2 primary insurances (my work & my husband's) & 3rd Medicare.  Do you think that maybe the difference?  Can you find another Neph or clinic?  Because I wanted to go to the best Neph, I have to travel 1hr. to visit him & the dialysis clinic.  What KickStart mentioned above about low transporter need longer dwell time is so true.  This is why my dwell time was so long.  8-10 hours at night with the 2.5% & 12-16 hrs on 7.5% (Ico) all day.  But not everyone can dwell for that long.  It really depends on each individual.  I know my clinic watched me closely to make sure.  But, the treatment worked for me & my labs looked good everytime.

[KICKSTART]

Rookiegirl  ..I know its a bit late now but didnt you have a Tidal setting on your cycler? Someone should have told you about that, it STOPS all that drain pain , because it leaves some fluid in !  I know you didnt like the cycler for other reasons , but if that was your main one then the Tidal setting would solve that . 

[rookiegirl]

Rookiegirl  ..I know its a bit late now but didnt you have a Tidal setting on your cycler? Someone should have told you about that, it STOPS all that drain pain , because it leaves some fluid in !  I know you didnt like the cycler for other reasons , but if that was your main one then the Tidal setting would solve that . 

They tired the Tidal setting, it didn't work for me.  I still felt the drain pain.  Even on the manual the pinching never stopped.  I just closed my port as soon as I felt it.  After awhile, I knew exactly how to time it just right & close my port before the pinching pain.  Beside the pain, I didn't like having to setup the cycler so early since I'm a not Owl.  Also didn't like being hooked to a machine, even though I can disconnect while I dwelled.

[KICKSTART]

I know exactly how you feel , but all i can think is they didnt give you enough Tidal. I have been doing CAPD for over 4 years and still get that drain pain , exactly the same as you, so i was put off using the cycler. I had my Tidal set at 80% and although it can be a bit uncomfortable its not bad.

[Darthvadar]

Joyful...

I was wondering how things are going for you???... Did you return to Manual Exchanges???...

God bless...

Darth...

[joyfulmother]

Not yet - they wanted me to use up most of my cycler supplies first.  I am getting a new shipment so I suppose sometime next week.

I'm just wanting to get past the heart cath on Wed. I am soo nervous.

[Darthvadar]

You've been through so much, Joyful...

Machine didn't work for Mum, either... She's about to do her last manual exchange of the day now... She was disappointed about the machine, but it just didn't do the business for her...

Please God all will go well for you on Wed...

You'll be in my thoughts and prayers...

May God bless and protect you...

Darth...