Nocturnal txs tasks a.m./p.m

Does it feel uncomfortable in anyway to have to deal with removing your needles when you first wake up in the a.m. and are half asleep, weak, thirsty, needing to go to the potti?

Likewise, do you feel stressed starting the tx when it’s bedtime and you are at your lowest point in the day, sleepy, tired and ready to go to bed?

The answer is " generally no", but “maybe sometimes”.

Usually I’m not alone, and I can call on help to fetch things if I have to. But I try to remember to always have a good-sized glass of water nearby when I dialyze. Nothing worse than waking up thirsty in the middle of the night and not being able to do a thing about it. Usually, I’m thirsty in the morning, and that’s when I drink it. I wake up thirsty a little sometimes, but I never wake up feeling weak. That shouldn’t happen on dailynocturnal unless your dry weight needs to be increased (and if you keep a close eye on your pre and post BP’s and how dry you feel, you will gradually adjust that up and down as needed by a few hundred mils at a time).

In the morning, I try to make sure I’m fully awake if the treatment happens to end when I’m still sleeping (usually, I seem to wake up at least a few minutes before). I take time to tell myself, “Don’t forget any clamps, stupid!”. Taking out the needles is child’s play, and I can do that even when half asleep :slight_smile:

When the treatment ends, there’s no big rush. It’s not like an emergency. You can take the time you need to wake up. All that will happen until you reset and pause the dialysis is that the UF will continue to take a few millilitres of fluid off. You can just turn the blood pump speed down.

There is no law that says needles have to come out right away once you disconnect. Theoretically, you could leave them in for hours as long as they are still taped and the ends secured (preferably with a saline syringe attached).

On the rare occasion that I need to go to the bathroom urgently when discontinuing, I simply disconnect the bloodlines from the needle lines, go, and take the needles out after. No problem.

Yes, sometimes it’s a pain to put myself on if I leave it too late until I’m too sleepy to do it. I’ve put myself on as late as 1 in the morning a few times, but generally, I try to keep it no later than 11. This is one reason I do 8 hours now rather than 6 or 7 hours. I can be on a whole hour earlier and still finish at the same time in the morning.

Pierre

Usually very happy to deal with needles even if I have been woken by finish alarms. Just take the time i need to adjust to the light etc while leaving the pump on. If I need to go to the loo in a hurry, I disconnect but leave needles in until I am ready.
Try to get on early enough so as not to be tired. Hate rushing it because sure as eggs they are the nights the buttonhole scabs take ages to get off cleanly or the needles take a bit of extra time to go in smoothly. Some nights I get sick of stuffing around setting everything up which is where hubby comes in handy as we seem to take it in turns. The nights I have had a glass or two of good Aussie wine definitely make me feel sleepier than usual. 8)

Im getting really tired of it lately. Im feeling really run down and when it comes to dialysis nights I just dont even want to go on the machine. Ive asked to go incentre for a break but not sure if there are any spots.
Im not really a morning person, so I am bothered by waking up to come off. Lately I have been setting my alarm to go off an hour before the machine finishes, so I can wake up and check BP. I just watch TV until machine finishes.

Amba… Is there any reason why you couldn’t do a conventional 3-4 hour treatment at home during the daytime every other day for a while?

I like nocturnal, but a number of the home hemo patients here prefer short daily treatments during the daytime or early evening. Of course, if your program doesn’t allow for daily due to cost factors, that wouldn’t be an option… but there’s still conventional length treatments every other day or 3 times per week.

Good luck.

Pierre

Are you feeling run down because you’re anemic? How are your hemoglobin and hematocrit? Are you feeling run down because you don’t get enough sleep? Have you been feeling more run down since you started setting your clock an hour early? Instead, could you do nocturnal longer so you don’t have to get up as early? Are you getting enough exercise and eating nourishing meals? If not, these things could make you feel run down. Finally, being a social worker, I have to ask if you think you’re depressed. This is a common concern for people on dialysis. This happens even more if patients focus their whole life around their dialysis treatment. What else are you doing or could you be doing for fun? What did you do before you started on dialysis? Could you do more of those things now? How much are you getting out with friends or relatives? Could you do this more? Remember, you’re doing dialysis to live, not the other way around. If you need help, ask for it. I’m sure your social worker, doctor, and home training nurse want to help you.

Pierre, if I do short treatments my potassium and BP rebound. We cant do daily treatments here as far as I know.

Beth, my last hemaglobin was 96, not sure about hemaocrit. I dont think Im getting enough sleep. On the machine Im getting about 7 hours which for me isnt enough but thats just how it works out. I have had alot of appointments the past week so Ive had to get up early, or get up before I was ready to wake up.
I already do 10hrs on the machine which is as long as we are aloud to do. I have been walking almost every day in the last week, getting the bus to appointments. Im probly not eating eating enough. I cant afford much fresh fruit, plus theres not really any nice fruit out at the moment. I usually buy bananas but they are $12 a kilo and will probly stay that was until next banana season. I am trying to eat a bit more vegetables when I feel up to cooking, and some protein too. I certainly eat enough tomato though, eat it almost every day :smiley:
I am a bit depressed, I have been diagnosed with depression before, but I am no where near as bad now as what I was then. Ive had a onld school friend pass away a couple of weeks ago which has been hard, but I hadnt seen him in years so I guess that made it a bit easier to deal with.
Ive also had problems with not talking to my sister, and well the whole family is having problems with her, which I wont go into as its a long story. We are talking, but she doesnt talk about the thing that we are having a problem with.
I guess my life is focused around dialysis as Im quite worried about it at the moment. With water problems and BP problems Ive had recently, Im half awake all night worrying about it.
I try to meet up with friends every month, but it doesnt always happen that regularly.
Ive asked for some time in-centre and waiting to hear back.

Hi y’all,

Amber wrote:

Beth, my last hemaglobin was 96, not sure about hemaocrit.

A “normal” hemoglobin in an adult woman would be about 12-16 mg/dL. The target (in the U.S.) for dialysis is 11-13 mg/dL. 96 isn’t a valid number for hemoglobin. If yours is 9.6, it’s well below the target level, which could contribute to your feeling tired and even depressed. If you have anemia, it’s important to get it properly treated.

It sounds as if you have a lot of things going on in your life and a lot of sources of stress. You might try going through the Coping module of Kidney School (http://www.kidneyschool.org), which is a free way to get some perspective about how you’re feeling and what you’re dealing with. Some people benefit from stress reduction classes, biofeedback (if you can find it), meditation, Tai Chi (sort of a walking meditation), etc. You can learn more about some of these options in the Alternative Therapies module. It may be helpful to seek professional counseling if there are resources in your area that you can afford.

Bananas at $12/Kilo?! Wow!!

Hi Dori, Amber

They probably measure Hg the same way in Australia as they do here in Canada. The normal range is 130-170 g/L, which I believe 110 being the minimum goal for dialysis patients. So 96 would be a little low, for sure. In my own experience, that would almost certainly trigger some action (probably an increase of my Eprex dose).

My last one was 137! I have to skip this week’s dose of Eprex and reduce my dose from 3000 units to 2000 weekly (and it may end up bi-weekly). This is a very low dose. When I was dialyzing in-centre 3 times per week, my Hg hovered around 109-115, so we can see how much better it is with daily nocturnal. I can certainly tell the difference in how I feel.

I very much sympathize with you wanting a break though, Amber. To be honest, I felt kind of like that a couple of months after I was doing it at home. It felt like a huge load on my shoulders, without much in the way of family support. At about that same time, I started to gradually increase my daily exercise level, mainly by walking, and as I got stronger, a little cycling. It really improved my outlook. Eating and drinking better helped too. Now, I have to say that if I was on 10 hours, I would feel like I was awake much of that time. I’m on for 8, and I sleep 6-7 hours usually. I like to watch a little TV the first 30-60 minutes after I’m on, and then, I usually wake up a few minutes before the end of treatment. Those 6-7 hours seem to be plenty for me, but I don’t mind having a daytime nap if I have to (which is rare nowadays). I don’t do much else, like travel or hobbies, simply because I can’t afford it on my pension, but those daily walks are very important to me. Before, I could hardly walk around the block. Now I get upset if I can’t manage more than 20 times that. But I did have to work up to it very gradually over the past year and a half.

Don’t feel bad. I think it makes perfect sense to take a break by going in-centre for a while. I never talk too negatively about in-centre on here, because I can’t say my 2-1/2 years there were that bad. Taking a break and coming back home refreshed can make a lot of sense.

Take care,

Pierre

Hi amba
I am sorry you aren’t travelling all that well at the moment. I wish we were a bit closer so we could meet for a chat and a cuppa.I find a support group I go to at Robina with an assortment of kidney types really helpful, I used to feel quite isolated down here. It is great to have other people to bounce off that know what you are going through. I know I would be finding it very difficult doing everything by myself like you do and those trips to PA must be a killer. I have only been there once and it took us an hour to park! Going there again for the next transplant seminar in August/Sept I think. Maybe we can catch up then?
Hang in there matey!
8)

I’d suggest that you talk with your dietitian about what you’re eating and how you’re feeling. You say you’re eating fruits and vegetables, including tomatoes, and “some meat.” Find out your albumin level. If it’s low, you need more protein. A low albumin level can make you feel weak and tired.

Is your potassium level in the healthy range. If not, that could make your muscles weak. Nocturnal dialysis may be able to compensate for the amount of potassium you’re eating. However, if you go incenter and do dialysis 3 times a week for fewer hours, be sure to ask about diet and fluid limits. I’ve heard of a patient on nocturnal who went on a trip and dialyzed in-center. No one bothered to tell the patient what to watch and the patient ate as usual and died from high potassium. I don’t want that to happen to you!

OK, now to the social worker in me…I’m really sorry to hear about the death of your friend. Even if you haven’t seen your friend for a while, I’m sure it’s upsetting. Tell your doctor that you’re depressed. If you have a social worker, ask to talk with him/her to see if that helps. Ask if there are other patients nearby that you could get to know to form a social network if you’re having problems getting together with friends and family. Visiting with friends once a month or less wouldn’t be enough for me. If you can’t get together, perhaps you can talk by phone or email.

You say worrying is keeping you up nights. Not sleeping is probably adding to your depression. I suspect depression is keeping you from enjoying life. Not enjoying life is probably worrisome and worry keeps you up nights. It sounds to me like a vicious cycle.

You could start with trying to deal with your worries. You say you’re worrying about a problem with your sister. If you’ve tried and she’s not ready to deal with it, write her a letter pouring out your soul about the problem, wad it up, put it in the trash, and see if you can let it go. Maybe later, she will be ready to deal with it. If you’re worried about problems with water and BP, ask your doctor what you can do to control both of those a little better. Worrying about things without knowing how to handle them can make you feel out of control and depressed.

Do something that gets you out of your house occasionally and takes your mind off your worries. Pick up or resume a hobby, exercise, visit with friends or family. A social worker or other counselor from your area could probably suggest other things you could do.

People who have been depressed before are more likely to be depressed again. Medication for depression and/or anxiety might help, but it may take trying different ones and giving them time to act. Sometimes medications can take enough of the edge off the depression that you can begin to have the energy to do things you enjoy. Finding enjoyment in things helps to lift your spirits. Hopefully this will start an upward cycle.

Dori, our blood levels are measured differently here. So 96 would be 9.6 in your way I gather. Lowest range of normal is 110, so it is a little low. I have always had trouble with my hb, its up and down all the time. I just got it to 120, then they dropped my dose of aranesp, and it went down again. Now they have increased it again, so we’ll see what it is next week when I do bloods. Trust me I am being treated for it, we are monitered pretty closely here. We have a psychologist that sees all the dialysis patients. I talk to her on the phone, in person, and via email if I need too or if I run into her at the unit.

I know what you mean about incentre pierre, although its not as good as being at home, it is the best place if you need a break, and in my case, a laugh!! I actually enjoy going to our unit as the staff are usually being silly and making us laugh :smiley:

Beachy, if you were at robina I could probly meet up with you if we pre arranged it. But let me know when your going to the seminar and Ill meet you there. Just send me a PM, not sure if you can email me from here.

Beth, I have seen the dietition numerous times and I know Im not eating enough of anything really, but my albumin is good. My potassium is good most of the time, and I know if I get weak muscles I need to go straight to emergency, as it usually means its up past 6. Have done that a few times now. However nocturnal keeps it under control pretty well, as long as you do your required Dx time and dont pig out too much on high K foods. I try to be sensible. That is awful about the patient that passed away, its almost negligent. When I first started hemo I wasnt really told either, and I wasnt told what could happen if you ate too much potassium until a few months after I had been on hemo. After that I made an appt with the dietition and got her to tell me exactly how much of what I could have. I followed it to a T as best as I knew and my K still went up!!! So it most probly was rebounding from being on short 3/week Dx.
I am pretty sure Im depressed, but I dont think I need medications. I have been on them before and I dont want to take them again. Just talking and getting out helps me.
I am talking to my sister (she is here now), but not talking about “the thing”, so who knows whats going to happen. She has to talk about it eventually as she cant keep her boyfriend hidden forever.

I know what you mean about incentre pierre, although its not as good as being at home, it is the best place if you need a break, and in my case, a laugh!! I actually enjoy going to our unit as the staff are usually being silly and making us laugh

This is exactly like it is at the dialysis centres here. It’s all nurses (no dialysis technicians here at all), and we have a lot of fun. Frankly, when I first started at home, I found I missed that. I’ve never had the miserable experience at dialysis centres that many people describe.

Pierre

Hi Amba
Pm is disabled but would love to catch up with you at the seminar which is on 13th October. Will ask the Bear to give you my email, I would like to catch up with him too if possible.

I have never dialysed in the centre where I trained, but I could see they were laughing and joking all day long. Recently went to visit a wonderful fairly new centre at Tweed Heads to show a group of people around and everyone was blown away by the chatter and friendliness in there. They have dress up days and parties all the time and play card games etc. Never a dull moment! If I had been able to visit a place like that 14 years ago when I was first diagnosed I might not have been so fearful and worried about thinking about dialysis for all these years!!!

Hmmm, I like the idea of the 3 of us meeting up for a coffee & a chat 2 Robina some time! :smiley:
I’ll forward your e-mail addr. to Amba Beachy…

Thanks, Bear. There is a Support group meeting on 4th July (my birthday) at Robina on Self Management /Home dialysis but I expect that is a bit short notice for you guys. Will definitely have to have that coffee before too much longer though. Would be fun to compare needle holes and I need some more stories for my book! :lol:

Hey beachy, how come you never dialysed where you trained? Wouldnt you need to hook yourself up as part of the training process?

Sorry for giving you a bum steer there Amba! The Renal Unit at Ballina is off to the side of the hospital and isn’t very big. The training room is separate (I was it most of the time) so I didn’t really have a chance to see into the workings of “In Centre” dialysis. I could just hear them laughing all day long! :lol:

Although I wish I had gotten into home txs sooner, there have been benefits to seeing how in-center operates. I learned things the hard way. Sometimes that is a good teacher. It would be nice if units had excellent patient education programs.