Very interested in your posts. I have a question, does your wife go empty or have fluid in during the day? My husband is on a Fresenius machine and only does 1.5% solution exchanges during the night - 4 of them and remains empty during the day. It was really suiting him but just recently the renal nurse said his blood results were not as good as they should be and he needs to consider maybe going on to noctural H.D. This he does not want to do. He still has some kidney function and we were told once he goes on H.D. his kidney function will cease completely and he can never go back to PD. Is that correct? Actuallt it was the nurse who mentioned all this - the renal specialist said he is going fine.
Who do we believe?
Elaine
Hi Elaine,
It’s true that standard, in-center HD tends to destroy remaining kidney function, but there is no evidence that this is the case with nocturnal home HD, which is much more like having healthy kidneys–it’s truly Cadillac dialysis; the most dialysis a person can get.
If your husband really likes PD and would like to continue it as long as he can, please read our article about fine-tuning the cycler prescription. It may be possible for him to get more PD. That article is at: http://www.homedialysis.org/resources/tom/200805/.
Please do keep in mind, though, that if his “numbers” aren’t good, the nurse is likely talking about his Kt/V, or “urea kinetics.” Urea is a very small molecule that is very easily removed by dialysis. Urea is a sort of “canary in the mine.” If Kt/V numbers are low, he really isn’t getting enough treatment, since phosphorus, p-cresol, beta-2 microglobulin, and other, more important molecules that aren’t measured are not being removed in large enough numbers to protect his heart, joints, and bones. (If Kt/V is high, it doesn’t necessarily mean good dialysis, though).
Hi Dori,
Thank you for your reply. I did print off a copy of the information about fine-tuning PD prescription previously. I gave a copy to the renal nurse - I don’t know whether she read it or not, she has not mentioned it. Would having fluid in during the day help his readings? The Nephrologist is always so happy that my husband does not have a stronger fluid than 1.5% - he says he could go on like this for years. The trouble is he has his blood tests monthly he only sees the Nephrologist three monthly, so if there is to be any changes it can go on for weeks before they happen.
Do many patients go onto HD and then go back to PD and can they do PD with no kidney function at all?
elaine
Hi Guys,
Been a while - My wife now on Two Green Bags and one Yellow EVERY NIGHT. On this the PD Unit are very happy with her total UF which is now up around 900-1000 every night. This coupled with the simple thing of drinking more water during the day seems to have done most of the trick.
For one reason or another in the past if she was on two green bags she used to get alot of cramps during the night, but by simply drinking more water during the day has helped. It would appear that she was being TOO dried out, hence the cramps?
Heres what she does:
home from work, hitches up - a drain of the day fill, then a small fill. Then unhooks. She can stay unhooked then for about 6 hours. Then at 11:30pm she hooks up again for a further 8 hours while asleep. A small fill is left in during the following day.
They came up with this program because she complained out right that doing 10 hours straight was not on. Said she was back to HD in the hospital if they didnt get a solution. Amazing - they did - what you just read.
One thing that still exists - THE ITCH, particularly on her back. They reckon its either a seperate thing OR a side effect of the kidney disease. A specialist now has her on LYRICA 50mgs - twice daily. Straight away ITCH vastly improved, next to gone. She recently stopped them for a day with the thought of stopping them all together - Itch back. They have these effects on her:
- feeling of happiness or wellness
- weight gain
- dizziness
- sleepiness/drowsiness
- increased appetite
( official symptoms from list )
Now she is just going to try one in the evening before bed.
So theirs an update. Interested in any further thoughts with these new nuggets of info
Cheers
Aidan