Worst Clinic Visit Ever Today!!!!

[Ricksters]

Had the worst clinic visit today I have had since I started dialysis! I hate being treated like I am stupid! I have had low uf for the last 4 days....was told today it was because I either don't realize that I am either a) constipated or b) have fibrin. Don't see any fibrin, and I definately am NOT constipated! So we will be getting a call from the PD nurse later on to reset my machine yet again.....told me I have low drain volume because of something I am doing.....could not have anything to do with the extra long drain & fill times that I have had since they changed me to exaneal! Had to vent...sorry!

[WishIKnew]

Grrrrrr  It's always our fault somehow!  Hang in there!

[drgirlfriend]

I hate when they try to turn things back on you! Sooooooooo irritating! It's such a relief when you find a Dr or nurse who respects what you have to say about your own body and life.

[laphoenix]

Just a thought....if they have put you on the extraneal you must be a higher than lower transporter.  If that is the case,  then your dwells should be shorter not longer.  What strength solutions are you using? How much water / fluids are you taking in?  Even if your UF is low, as long as you are not getting edema, then what's the problem?

[MaryD]

I'm on extraneal and I'm a low transporter, so it mightn't be that.  I do CAPD - two 1.5% and one extraneal a day.

Hope you get sorted soon.

[Ricksters]

Grrrrrr  It's always our fault somehow!  Hang in there!

Thanks for the words of support!  Just so frustrating!

[JLM]

I, too, have low UF and it's because I don't usually carry any extra fluids.  I am now, but that requires a new thread.

[billybags]

Ricksters, are you also doing a manual at tea time?  The reason I ask is that my husbands last fill on the machine is extraneal. That stays in from 5.30am till 6pm and then he does a manual green, he always gets a good drain with this. He goes on the machine about 10pm. 3x5000 bags, last fill extraneal, 5 cycles, 7 hours. I know every one is different, perhaps your nurse should do some adjustments.

[Ricksters]

Ricksters, are you also doing a manual at tea time?  The reason I ask is that my husbands last fill on the machine is extraneal. That stays in from 5.30am till 6pm and then he does a manual green, he always gets a good drain with this. He goes on the machine about 10pm. 3x5000 bags, last fill extraneal, 5 cycles, 7 hours. I know every one is different, perhaps your nurse should do some adjustments.

I don't do any manuals at this time.  One thing that I did start doing is a manual drain on the cycler before the last fill with extraneal.....that, plus using the extraneal, seems to be doing the trick.  I actually lost weight instead of gaining!

[Grumpy-1]

been on PD for 3 years and this is new to me.  what is  "extraneal"   Grumpy

[PatDowns]

been on PD for 3 years and this is new to me.  what is  "extraneal"   Grumpy

From Baxter (http://www.baxter.com/patients_and_caregivers/products/extraneal.html)

Your doctor may prescribe Extraneal (icodextrin) PD solution as one of your solutions for Peritoneal Dialysis (PD). Extraneal PD solution is different from other solutions because it's used just once per day and it stays in your peritoneal cavity for 8 to 16 hours - otherwise known as the "long dwell."

Helps reduce fluid overload

Compatible with both the HomeChoice and Ultrabag systems

Can be an alternative if you have fluid management challenges

An option for patients requiring increased ultrafiltration. Extraneal PD solution impoves ultrafiltration and clearance of creatinine and urea nitrogen in patients with high-average or greater transport characteristics.

From the FDA (http://www.fda.gov/downloads/Drugs/DrugSafety/UCM135933.pdf)

What is EXTRANEAL?

EXTRANEAL is a prescription peritoneal dialysis solution. EXTRANEAL draws fluid and wastes from your bloodstream into your peritoneal cavity (the space inside your abdomen). The fluids and wastes are removed from your body when the EXTRANEAL solution is drained.
EXTRANEAL is for the long dwell exchange (8 hours to 16 hours) in peritoneal dialysis. The long dwell is the exchange that lasts 8 hours or more:

• the nighttime exchange if you are on continuous ambulatory peritoneal dialysis (CAPD)
• the daytime exchange if you are using a cycler

Do not use EXTRANEAL if:

•you have a glycogen storage disease
•you do not tolerate maltose or isomaltose
•you have severe lactic acidosis
•you are allergic to cornstarch or icodextrin

EXTRANEAL may not be right for you. Before using EXTRANEAL, tell your doctor
about all your medical conditions, including if you:

•have a condition that affects your nutrition, or you are not able to eat well
•have a lung or breathing problem
•have low potassium levels in your blood
•have high calcium levels in your blood
•have low magnesium levels in your blood
•have had recent aortic graft surgery
•have had stomach area (abdomen) surgery in the past 30 days
•have tumors, open wounds, hernia, infection
•have certain bowel conditions, including: a colostomy or ileostomy, frequent episodes of diverticulitis
  inflammatory bowel disease

Product Info Sheet from Baxter - http://www.baxter.com/downloads/patients_and_caregivers/products/extraneal_pi.pdf

[Ricksters]

Gotta say I am glad that I am on extraneal!  I have actually lost a pound this week, rather than seeing my weight go up after exercise! I am a happy camper!