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Author Topic: Having a hard time on PD  (Read 7129 times)
CW
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« on: June 12, 2008, 11:56:56 PM »

Since starting pd I have been having some issues.
 
Chest and abdomen pain
Less fluid coming out then going in.
I am having a hard time managing my time (missing exchanges, oversleeping, late for work etc.)

and plenty of other issues.... any suggestions
I am starting to get frustrated and depressed. I am wondering if pd is right for me.
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To all of my kidney brothers and sisters who have left too soon -
Where you used to be, there is a hole in the world, which I find myself constantly walking around in the daytime, and falling in at night.  I miss you like hell.  ~Edna St Vincent Millay
MyssAnne
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« Reply #1 on: June 13, 2008, 05:50:06 AM »

CW. Are you manual? That's explaining the chest pain, an air bubble, perhaps.  As for less fluid coming in, are you waiting too long, it will start to absorb if it does, you may be a fast absorber.  If not, you may need a higher number. What number are you using right now? 

Abdomen pain, constant? When draining? When filling? 

It's a pain, for the first month or so, then you do adjust. The cycler is so much better, for some reason.

Only you can decide if PD is right for you or not, some people just don't like it. I'm one of those who do
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KICKSTART
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« Reply #2 on: June 13, 2008, 05:54:05 AM »

Sorry to hear your having problems , i have been doing capd fpr over 4 years now. You really do need to get into a routine with your exchanges , think breakfast , dinner, tea, supper, missing exchanges is not good!! This is why you are getting less fluid out than goes in! , if you leave it to dwell and miss an exchange you start to asborb the pd fluid back into your system. Set a routine out , how long have you been doing pd ? not long? You will find you can get done in about 30 mins once you have been doing it for a while , just just need to disipline yourself into doing it. Oversleeping and late for work has nothing to do with dialysis ! set your alarm earlier! Stomach pain may be you getting used to the fluid in you. Any questions you have , just ask away !
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OH NO!!! I have Furniture Disease as well ! My chest has dropped into my drawers !
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« Reply #3 on: June 13, 2008, 06:04:21 AM »

CW, I am new to PD also, and also have had the abdomen pain ... I am into the start of my second month and just in the past day  I have found that the pain is easing... the only thoing I can think of is that the weight brused my stomach somehow...

I know I was doubting my decision also, but I do think it gets easier.

I also find that if I go over 4 hours I start to absorb fluid, you really have to try to get on a schedual

Good Luck
Please keep me posted :)

Kim
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« Reply #4 on: June 13, 2008, 09:42:47 AM »

kimcanada ..just to let you know it takes between 6-8 weeks to heal internally after having the catheter fitted , so this is why you were probably sore and why its now getting better !
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OH NO!!! I have Furniture Disease as well ! My chest has dropped into my drawers !
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« Reply #5 on: June 13, 2008, 09:46:05 AM »

its hard to believe that it would take that long...  Kickstart you have been wonderful helping me through this  thanks :)
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« Reply #6 on: June 13, 2008, 10:27:48 AM »

hope things get better for you :secret;
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CW
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« Reply #7 on: June 13, 2008, 06:32:40 PM »

Thank you all for your input it is greatly appreciated  :thumbup;


CW. Are you manual?  What number are you using right now? 

Abdomen pain, constant? When draining? When filling? 



I am doing manual exchanges and I hope to get a cycler soon
I am using 2.5%
My pain is worse when draining but it hurts when filling and when walking around

I started about a week ago

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20 years navigating ESRD
Had a transplant but it rejected

To all of my kidney brothers and sisters who have left too soon -
Where you used to be, there is a hole in the world, which I find myself constantly walking around in the daytime, and falling in at night.  I miss you like hell.  ~Edna St Vincent Millay
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« Reply #8 on: June 13, 2008, 06:34:45 PM »


So sorry you're having discomfort CW - I hope it improves soon.  :cuddle;
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« Reply #9 on: June 14, 2008, 12:39:42 AM »

Sorry you are having troubles CW. I recommend calling your CAPD nurses. In my experience, they know much more than the nephrologist about PD and how to fix problems. Good Luck.

Mikey and Her Royal Highness Queen Ruth.
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06/85 Diagnosed with type 1 Diabetes
10/04 Radical Nephrectomy (Kidney Cancer or renal cell carcinoma)
02/08 Started Hemodialysis
04/08 Started Peritoneal Dialysis (CAPD)
05/08 Started CCPD (my cycler: The little box of alarms)
07/09 AV Fistula and Permacath added, PD catheter removed. PD discontinued and Hemodialysis resumed
08/09 AV Fistula redone higher up on arm, first one did not work
07/11 Mass found on remaining kidney
08/11 Radical Nephrectomy, confirmed that mass was renal cell carcinoma
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« Reply #10 on: June 14, 2008, 02:14:39 AM »

CW   A week on pd is still early days , as i said earlier it takes about 6-8 weeks to heal internally and you will find it uncomfortable at first . Most people get that 'pain' when coming to the end of a drain , so you tend to stop the drain at that point ,(dont let it tug) you are mostly empty when it starts to do that anyway. You will feel sore when filling and walking round for a few weeks , but you do get used to it , just give it time. I was very fit when i had mine done , but for the first couple of weeks walked round bent over like and old woman ! Now apart from the 'pregnant' look its fine , you get used to the fluid over time , like i said a week is far to early to feel good! , but it will improve!
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OH NO!!! I have Furniture Disease as well ! My chest has dropped into my drawers !
Joe Paul
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« Reply #11 on: June 23, 2008, 03:16:46 PM »

CW, how are things going?
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« Reply #12 on: June 26, 2008, 02:05:34 PM »

CW,

The first few months are always the hardest, but it will get better as you and your body become accustom to the routine.  I too had difficulty in everything you mentioned.  I've been on CAPD for 9 months now and the only issue I really have is the drain at the end.  But, I've become an expert on timing it just right on when I can stop the drain before that pinching start.

Don't loose hope because after while, PD will give you so much freedom.  Sometimes I forget I'm even on dialysis.

Also, PD affects individual different and it also depends on your prescription.  Right now I've been doing 2 exchanges a day (7.5% Ico in the morning/ 2.5% at bedtime).

Best of Luck to you my friend.
RG
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03/2008-Transplant team meeting
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CW
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« Reply #13 on: June 27, 2008, 12:04:52 AM »

CW,

The first few months are always the hardest, but it will get better as you and your body become accustom to the routine.  I too had difficulty in everything you mentioned.  I've been on CAPD for 9 months now and the only issue I really have is the drain at the end.  But, I've become an expert on timing it just right on when I can stop the drain before that pinching start.

Don't loose hope because after while, PD will give you so much freedom.  Sometimes I forget I'm even on dialysis.

Also, PD affects individual different and it also depends on your prescription.  Right now I've been doing 2 exchanges a day (7.5% Ico in the morning/ 2.5% at bedtime).

Best of Luck to you my friend.
RG

Thanks for the kind words and advice Rookiegirl.

Much appreciated!!
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*Common Sense is an uncommon thing


20 years navigating ESRD
Had a transplant but it rejected

To all of my kidney brothers and sisters who have left too soon -
Where you used to be, there is a hole in the world, which I find myself constantly walking around in the daytime, and falling in at night.  I miss you like hell.  ~Edna St Vincent Millay
Ken Shelmerdine
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« Reply #14 on: July 24, 2008, 03:47:26 AM »

If you are finding it hard to stick to the routine then I think you would be far better off doing Cycler PD. The drain pain may within  a few weeks become less or even disappear alltogether as it did for me. There are in most cases lots of niggling problems when starting PD but for most people it gets easier after a few weeks. Hope  you will be one of them.
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Ken
CW
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« Reply #15 on: July 24, 2008, 10:39:32 PM »

I had forgotten all about this thread (absent mindedness!)
Thanks for the reminder Ken  :thumbup;
I have started on the cycler and the pain has subsided I have told my clinic I want to go back to hemo but there was a scheduling issue so I am waiting to see if they can work it out.

I have felt a little better but I still get sick in the mornings (nausea vomiting) and I do not have a place to do my midday exchange so I usually miss it. I just cant keep up but if I could it probably would not be bad.
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*Common Sense is an uncommon thing


20 years navigating ESRD
Had a transplant but it rejected

To all of my kidney brothers and sisters who have left too soon -
Where you used to be, there is a hole in the world, which I find myself constantly walking around in the daytime, and falling in at night.  I miss you like hell.  ~Edna St Vincent Millay
Ken Shelmerdine
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« Reply #16 on: July 25, 2008, 03:15:08 AM »

Sorry pd's not working for you CW. It's good that the drain pain subsided but if you are puking every morning it's obviously not giving you an adequate dialysis. Hope you soon feel better when you get back to Haemo.
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Ken
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« Reply #17 on: July 25, 2008, 08:17:46 AM »

So sorry to hear you're having problems.  If you stay with the cycler and still have no place to do a midday exchange, you might ask them about switching to Extraneal, which has a 12 hour dwell and you don't usually do a midday exchange. 
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MiSSis
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« Reply #18 on: July 25, 2008, 11:58:17 AM »

CW, I'm sorry to hear that you're struggling with PD.  I was just wondering how much extra fluid you are pulling off each night.  Could you possibly be taking too much off and are bottoming out with low blood pressure which could make you sick to your stomach?  If your numbers are good and your Kt/v shows that you're getting adequate dialysis, maybe you could forego dialysing during the day.  I do 6 exchanges each night - 1 at 2.5% and 5 at 1.5%.  My dwell is 1 hr 15 min (I'm a slow exchanger) for a total of 13 hrs.  Of those exchanges, 1 or 2 (depending on my schedule) are pause exchanges where I put fluid in and then disconnect and go about my normal activities.  I do a final drain in the morning and then I'm empty all day long.  This has worked really well for me, allows me to wear regular clothes during the day and I'm still getting good clearances.  Maybe this might be an idea to talk to your doctor or PD nurse about. 
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CW
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« Reply #19 on: July 27, 2008, 12:33:10 AM »

So sorry to hear you're having problems. If you stay with the cycler and still have no place to do a midday exchange, you might ask them about switching to Extraneal, which has a 12 hour dwell and you don't usually do a midday exchange.
This was a suggestion I am waiting ti hear back from them

CW, I'm sorry to hear that you're struggling with PD. I was just wondering how much extra fluid you are pulling off each night. Could you possibly be taking too much off and are bottoming out with low blood pressure which could make you sick to your stomach? If your numbers are good and your Kt/v shows that you're getting adequate dialysis, maybe you could forego dialysing during the day. I do 6 exchanges each night - 1 at 2.5% and 5 at 1.5%. My dwell is 1 hr 15 min (I'm a slow exchanger) for a total of 13 hrs. Of those exchanges, 1 or 2 (depending on my schedule) are pause exchanges where I put fluid in and then disconnect and go about my normal activities. I do a final drain in the morning and then I'm empty all day long. This has worked really well for me, allows me to wear regular clothes during the day and I'm still getting good clearances. Maybe this might be an idea to talk to your doctor or PD nurse about.

I haven't been anywhere near my dry weight since I started. I know how to deal with a situation like that, but your schedule is interesting. I would have a problem though as I come in late and leave early so I barely get my 9 hour treatment.
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*Common Sense is an uncommon thing


20 years navigating ESRD
Had a transplant but it rejected

To all of my kidney brothers and sisters who have left too soon -
Where you used to be, there is a hole in the world, which I find myself constantly walking around in the daytime, and falling in at night.  I miss you like hell.  ~Edna St Vincent Millay
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« Reply #20 on: July 27, 2008, 07:21:25 AM »

I like you had cramping when I first started PD it took a few months to finally ease up I tried different postions when I started to cramp, I am on the Baxter and using 1-1.5 and 2-2.5. I usually get on my machine around 8 at nite and done at 7 in the morning, I don't have to do a midday exchange but I am wet all day,I tried going dry a couple of time but I would cramp several time during the day. This is working for me I am free the whole day to do what needs to be done. Hemo for me was ruff,it would take almost 2 days to recover from Hemo, I was wasted and of little use. Hope you find what going to work for you. Good Luck
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