Help! I am one month into nocturnal home hemo after being in-center for 3 years. The monitoring center in Indiana requires BP's every 30 min (just been upgraded to every hour!)This is worse than having a new baby in the house. Every time I just doze off something alarms or it is BP time.
Every one keeps asking if I feel better (my labs are great) but I actually feel worse! Please tell me it is worth it. I made plans to go to work and back to school but I can't function on 2 hours of sleep, divided into 30 minute intervals.

Carol,

Something is definitely wrong. You should not be getting alarms everynight. I do slow nocturnal with my father and we rarely get an alarm. Once in a great while he will lay on a line.

What kind of alarms are you getting. I know it took me about 2 to 3 weeks to know where to tape dads lines so he wouldn't roll on them or get kinks. 1 place most patients have to tape is where the line meets the plastic cuff (if your using a catheter). My father toss and turns all night without alarms.

As far as BP readings go, we are only required to take a BP before we get on and when we get off. We never had to take them periodically through the night.

You should feel alot better on slow nocturnal and you should be able to get a good nights sleep. We run for 8 1/2 hours and get a full 8 hrs sleep a night.

If you want to you can e-mail me at Marty1@infoblvd.net, and tell me what alarms you are getting maybe I can help.

As far as the BP readings, this just must be a requirement of your program. We are only required to take a BP reading when we get on and when we get off. Our program is in Saratoga Springs, NY. You may want to go to the www.lynchburgnephrology.com website and e-mail their nurse and ask if they do hourly BP's with their patients.

Maybe Mike Williams the narrator of this board will jump in and let you know if the Canadian Program required BP readings every hour.

Don't give up these problems are correctable and once they are corrected your life will be what you expected.

Hi Carol:

When I first started home hemo, a BP reading was required every couple of hours, but that lasted only the first week or so.
Gettng used to the sound of the machine and other minor adjustments meant some sleepless nights.
However, the dialysis program changed the recording of BPs to one night a month.
As for the alarms, I believe the machines can be set to certain levels of sensitivity. Kinking a line, of course, is going to set off the alarm, but, as Marty says, determining where to secure the tubing should help in that department.
If the machine is alarming for other reasons, discuss with the technician and he may be able to make adjustments.
Either way, it will take time getting used to it, but I'm confident that after a while, not only will your labs be great, but you'll be feeling better as well.
Mike

Marty and Mike,
Thanks for your words of encouragement.
Most of my alarms are for low BP (if I manage to sleep through a BP check)-- it seems my BP naturally drops when I am asleep (pulse stays normal)to 110/50. They don't want me to set the alarm limits any lower.
In two weeks i get to go to pre and post dialysis BP checks.
The other two are TMP and heparin pump alarm. I hardly ever have a high pressure alarm. The tech just left after changing the heparin pump again. Keep your fingers crossed for me!

Carol,

It sounds like you are going to get these problems resolved and I am sure once you do; you'll really be glad you went to slow nocturnal.

When my dad was in-center in seemed like dialysis was on my mind all the time. All ways having to schedule things around it.
Reminding him of fluid restriction, cooking for the renal diet.
With slow nocturnal I hardly think about it and it doesn't interfer with our lives at all. My dad is 76 and he goes all day long doing everything he used to. When he was going in-center he didn't do much of anything but sit around and rest.

Let us know how you make out.