PET Test

Dear Dori:

Thank you for the link to the PET test article; it was very interesting. I shared the high points with my dad and he asked me to request this test from his dr., which I did. The dr. told me that his dept. does these tests regularly and then said that my dad is a high-average transporter. How would he know that without having done the test?

When my dad talked with his nurse yesterday, she didn’t even know that the dr. had told my dad to dialyze 6x daily and told him that he should only do that for 48 hours. The dr. told him to continue until he loses 4-5 lbs. It is a really tricky tightrope to walk between this doctor and nurse as the communication between the two of them seems to be missing. The dr. has also done a complete 180 on the possibility of using the cycler and says that it might be the way to go; this is after he said absolutely not last Wednesday. We need a scorecard to keep up!! :slight_smile:

When I emailed the dr. this morning, I advised him that my dad would like to schedule the test. Am waiting for a reply…

Eileen

Eileen

Hi Eileen,

The ONLY way to tell what type of a transporter your dad is is to DO the PET. Guessing is not good medical care.

Dear Dori:

I have not been satisfied with the level of care my dad has gotten since the beginning of his dialysis experience. My dad has off and on been providing the PD dept. with a 24-hour fluid sample; I asked the dr. if the findings derived from this sample provide the same information derived from the PET. He said, “We use the information from the 24 hour collections which is essentially the same as what a PET does–the vast majority of centers no longer use a PET since most patients do not want to sit around for 4 hours.” This response came directly after the following response from an email he wrote to me yesterday about the use of PET testing at his clinic: “We do these routinely.”

What do you think about his reply? My dad would do whatever it takes to get the most information possible to ensure the best treatment possible. The dr. is assuming that my dad would not want the PET rather than asking him. I’m going to wait for your reply but I am ready to contact him and ask him to do the PET anyway…

Eileen

Eileen, since your dad’s CAPD regimen is so impossible (6 exchanges a day?! He has no time to do anything but think about dialysis!), if he is willing to get a PET test, he should be offered the opportunity to have one. It sounds as if your dad would happily go along with it–and it may well turn out that he could be a candidate for a cycler, which would provide a lot more flexibility for him.

Dori,

I talked with my dad this evening and he would like the test. So I just emailed his doctor back and asked him to set it up. In his latest email, he said that he uses the creatinine and dextrose figures from the 24-hour collections to determine the condition of my dad’s peritoneal membrane. Will see what the dr. replies back.

Meanwhile, my dad’s nurse told my dad to go back to 4 dialysis treatments daily and to increase the number of 4.25% bags to 3 along with one 2.5% tomorrow. She told him to keep a close eye on his BP so that it didn’t sink too low. When I was speaking with him, his BP was 87/49. He and I discussed this advised increase in 4.25% bags and he expressed a fear of going into shock due to taking off too much fluid too fast; he has decided to use two 4.25% and two 2.5% bags tomorrow. I think that is a wise decision.

Thank you again for the information.

Eileen

Dori,

Just heard back from the dr. and he says that his department does not administer the PET test. Again, he reiterated that he gets all the information he needs from the 24-hour drain collection. He was unaware that my dad had gone back to 4x/day exchanges today–at the nurse’s advisement–but said that he was waiting to see what happened with the 6x/daily regimen to determine if my dad is a candidate for the cycler.

Relating to the nighttime cycler, my dad asked me a question tonight. Would he have to sleep on his back in order to avoid kinking the catheter? He is not a back sleeper.

Thanks so much for your support and help.

Eileen

Other folks here who use a cycler for PD would be much better sources of information than I am about what position you need to sleep in–I don’t recall anyone ever mentioning it! It would be pretty hard to sleep on your stomach, but it would make sense that sleeping on your side should be possible. You might start a thread asking what position you need to sleep in to use a cycler, in case folks aren’t happening to read this one.

If your dad’s doctor’s office doesn’t do PETs, there should still be somewhere that they can be done. A hospital clinic, perhaps?

Will do.

I emailed the dr. this morning and asked if perhaps the hemo unit at the hospital (his office/clinic is located at the hospital in the city in which my dad lives) does PET tests and brought him up to date on the fact that my dad, at the nurse’s suggestion, has dropped back to 4 exchanges daily and the concentrates he will be using. The dr’s concern with my dad using the cycler is his hypotension. Will see what he says when he replies…

Eileen

Let us know what he says. It seems odd to be worried about hypotension with cycler use, since your dad would be lying down anyway, and presumably once he’s done, his BP would recover. I’d think so, anyway. It’s more of a risk for him to be up and about with low blood pressure–he’d be at risk for falling.