When I first started PD (after surgery healed from inserting the catheter) I was told (by a dialysis center) there would have to be CAPD training in case for some reason you could not use the cycler (power outage, etc.). I totally understand why.
How long should this training be? It’s a very easy procedure to learn. I was told this “training” would last for 2 months. I was shocked!
Also, how long does a PET test take to do? Should you do it twice to ensure the proper information is given? I was told the PET test takes several weeks!
Something just does not seem right about these lengths of time. Not from what I have been researching.
I started the CAPD but found the pain from the catheter was excruciating so I am going to get a 2nd opinion from a surgeon @ the Cleveland clinic on the 28th (I had to go back to hemo for now). That is a big deal. I asked if I could get the PET test done before I went to see this big deal surgeon, the main reason being I want to see if I am still going to have the same amount of pain before I go and not waste anyone’s time, it’s been about a month I stopped CAPD. Who knows! The pain may not be there anymore at this time…That’s when I was told that the PET test took SEVERAL weeks. I’m trying to be pro-active here!
Kind Regards
Dear Judith Bernardini, I realize I had my 1st post just a couple of days ago, but unfortunately time is of the essence.
Thank you kindly
Cynthia
Never mind, I went to another forum and asked a PD nurse on that site and got my questions answered.
Thank You
PD clinics vary on how they approach training for patients on the cycler who occasionally need to perform CAPD. Some teach all patients CAPD first, usually takes a few days, then the cycler, another day or two. Studies have shown total training time to average 5 days,but obviously some people need 10 days until the patient can safely perform exchanges. As you noted, CAPD is fairly simple compared to the cycler. Some require the patient to go home on CAPD for a period of days or weeks and then return to the clinic for cycler training. Others train for the cycler only, adding CAPD training later if needed, and this usually takes an hour or two for an experience cycler patient. And some clinics say a person is still “in training” to describe a long period of weeks or months when they are new to home therapy. The standard definition of training is a one-to-one nurse patient either in the clinic, the hospital or the patient’s home.
As to the PET, the standard test is over a 4 hour period. Studies have been published, however, that the “short PET” is as accurate as the standard. The short PET requires the patient to infuse a 2L exchange as the last fill on the cycler, allowing it to dwell for 4 hours. The patient presents to the clinic before the 4 hours to have the nurse drain the exchange, take a sample, and draw the patient’s blood. There is no need to repeat the PET to veryify the results unless there has been a violation of the protocol. Results of the PET (standard or short) are usually known the next day. The PET is usually done after the patient has been home for a month on PD, giving the membrane a period of time to adjust to PD.
Here is a recent reference on the Short PET which you can share with your clinic:
THE SHORT PET IN PEDIATRICS
Bradley A. Warady and Janelle Jennings
Perit Dial Int July/August 2007 27:441-445
And now, finally, concerning your PD pain. I’m sorry to hear about this as no one should have pain from dialysis, The position of the catheter can definitely cause pain if the tip is against part of the gut, especially if near the rectum. I don’t know what size person you are, but surgeons can implant different sizes of catheters based on the general length of your torso. Sometimes though the catheter may migrate after implant and likely need to be replaced with a shorter catheter to relieve pain. Do not think you need PET before replacement in any case.
I hope this information helps. Send me another note if it is not clear or helpful.
Judy Bernardini
Thank you SO much. There is great info that you have given.