As the subject says, I’m going back from 5 to 6 nights per week, with my neph’s approval. No lab result reason, as my labs remain outstanding.
A few months ago, I thought I would like the extra night off nocturnal hemo mid-week. I do, but I don’t like the extra two days it means I have to watch my diet and fluid intake more. Plus, I find that I’m just not feeling as good as I did before the change. For every day off dialysis, it means 2 days of not eating and drinking normally: the first day after treatment, and the second day up to the following treatment. So, if you take 2 nights off, there are 4 days a week out of 7 that you have to watch your intake more. It may not make any difference to someone with more residual kidney function, but it does seem to affect me.
Also, I’m extending my treatments to 8 hours. This is just so I can get on an hour earlier without having to get up earlier in the morning (before I get too sleepy). I can even do 9 hours if I want.
I am sorry to hear that, for purely selfish reasons, as it obviously doesn’t really worry you doing an extra night. At this stage I think if and when my labs aren’t so good and I have to watch fluid and diet and I still couldn’t face doing more than 3 x 8hours (+ 1x5) I will consider doing another 5 hour one evening. You are a very patient man, my body starts to feel stiff and I lie awake and squirm in the early hours. Having said that, last night went pretty well with around 6 hours sleep. I raised my dry weight by 500ml, managed to get a bood pressure reading when I came off 100/71, had a BIG cuppa and a lovely walk feeling good!
Now I am definitely NOT whinging and I would not give up Nocturnal because of the freedom during the days and maybe down the track things will get easier. The labs prove how great this tx is. I just think you are amazing for managing it so well.
LOL. Poor Beachy, don’t worry, I promise never to mention anything about whining ever again
… not that I ever meant it for you anyway. I really didn’t.
I’m actually looking forward to getting dialysis tonight (it would otherwise have been my night off). I’ve already eaten a whole bag of big, salty cheddar cheese curds, a huge cheeseburger and big plate of fries for lunch with lots of ketchup and salt, and I paid no attention whatever to what I’ve been drinking. Right now, I’m working on a litre of Coca Cola in a big tall glass with lots of ice
And I don’t even remember what I had for breakfast. I think it was a BLT with probably a quarter pound of bacon on it.
Later, I plan on snacking on a bag of chips and a whole container of dill pickle chip dip. I guess I should eat some of that healthy salad my wife made too. Now, I better hope my machine doesn’t conk out tonight.
It seems paradoxical, but I’ve found that I actually slept better when doing it 6 nights rather than 5. I was one of those with very bad “restless legs syndrome” at night when I was pre-dialysis and on conventional hemo. Daily nocturnal seems to improve that for me a lot. The decision to go back to 6 nights was purely my own. I just think I felt better when I was doing that. I feel like I had more exercise endurance too.
I’m glad your pressure is measurable now. Too low to measure is not good! It’s still kinda low though. I know I wouldn’t be comfortable that low. Have you ever measured your BP during those times when you’re lying awake squirming? Maybe it’s your body telling you, “Hey, my blood pressure is too low”.
There have been some studies which suggest it’s better to have higher than normal BP when you’re a dialysis patient. I like to see mine about 130/80 or higher sitting before treatment. Then I know it’s not going to go down too low while I’m sleeping. I sit for a couple of minutes before I measure it too.
Somehow, we’ve got to get you to sleep on dialysis
So far so good. The extra night and the extra hour seem to be making me feel better, more like most of last year until I went from 6 to 5 nights. The past few mornings, I’ve been out walking the dog for a few blocks even before my machine finished its heat disinfect. I went out almost right away after my needles were out and sites bandaged. I only had to wait the 15 minutes it takes for the acid clean to complete so I could put the machine in heat disinfect before going out. Heat disinfect itself takes about 45 minutes, but it’s unattended, and the dialysis machine turns itself off after.
Last night, I was 2.2 litres overweight, but over 8 hours, that makes for a UF rate of only 340 ml (my UF goal includes 500ml for rinseback). With the blood pump set at 275 (I can have it as high as 300, but 275 is plenty), the treatment ran 126.9 litres of blood through the dialyzer. I think that 6 nights a week keeps me more on an even keel, with fewer ups and downs, more like natural kidney function. Let me tell you that, with a blood pump speed of 300 or less, and a UF rate under 400, you don’t even feel like you’re on dialysis at all, except for having the needles in your arm.
I sleep just fine. In fact, the more dialysis I get, the better I seem to sleep.
"I’ve already eaten a whole bag of big, salty cheddar cheese curds, a huge cheeseburger and big plate of fries for lunch with lots of ketchup and salt, and I paid no attention whatever to what I’ve been drinking. Right now, I’m working on a litre of Coca Cola in a big tall glass with lots of ice
And I don’t even remember what I had for breakfast. I think it was a BLT with probably a quarter pound of bacon on it.
Later, I plan on snacking on a bag of chips and a whole container of dill pickle chip dip. I guess I should eat some of that healthy salad my wife made too. Now, I better hope my machine doesn’t conk out tonight"
:lol: :lol: Good golly, Pierre, did you say you weren’t a very big guy?? Glad to see the missus has you on the salads as well! I have become so used to eating low salt /fat /protein foods and having high blood pressure over the years I find it really weird to be now doing things in reverse! I am trying to visualise what the heck a big, salty cheddar cheese curd might be ?
Last night I did a shorter, faster (for me) 5 hour run and had to take off around 600ml/hour. Boy, you sure can feel the difference when you come off, felt totally wiped out. Doing another short one tonight with hopefully less fluid to remove. I want to get a good nights sleep as tomorrow I am going to a huge blues music festival and will need every bit of energy / stamina to last til the early hours of Monday morning. Masses of people standing around dancing for hours. Great international acts, good vibes and heaps of yummy food. I think I am getting too old for this now but have so much more energy than this time last year I have to give it one last try.
:lol: One good thing about going to the festival this year is I won’t have to line up at those horrible big toilet vans for hours on end anymore!! Dialysis does have some advantages. 8)
Sounds like a fun festival. We have a number of various types of music festivals in my city. I never go because I don’t like standing around for hours. But, one night, when I was still on in-centre hemo, there was a folk festival in a park not too far from where I lived at the time. Anyway, I came home from dialysis at about 10pm and I rode my bike on a completely dark bikepath to the park hoping to see Arlo Guthrie perform. I was kind of weak and shaky after dialysis, but I did get to see him sing “City of New Orleans” and “Alice’s Restaurant”. It was great.
Pierre
It has been fun hearing about everyone’s interests and pastimes. I mean not everyone can say they know an Aussie Samba drummer And, Pierre, I never was so excited as I was to hear about that mack truck load of gorgeous food you consumed the other day- man did that sound good to a renal diet starved person like myself (hopefully not for long)…you ARE watching out for coronary artery disease aren’t you :?:
I noticed the part about the liter of Coca Cola. I don’t know about anyone else, but having been deprived of normal amounts of fluid as an in-center patient, it’s made me want to drink every kind of bevarage on the face of the earth, albeit in small amounts. I love variety, definitely not a plain vanilla type, and I think I have discovered every beverage known to man(well not every…probably never tried what Aussie Samba drummers drink lol). But lately, I have been on a straight water kick as my main drink. It’s a lot easier not to have to figure out what I’m going to drink, not to mention a lot healthier. Has anyone else gone through this or am I the only one? I still have my treats of good coffee, smoothies and tea-just said goodbye to the sugar laden sodas.
Pierre, I must say–that was an ultra kool experience riding your bike after dialysis, weak and wobbly (can relate lol), to the folk concert in the park and happening upon 2 classics by Arlo Guthrie (I always dug the folk singers). Really makes a statement about what livin is all about - yeah with a disease like this, one must try harder and be creative, but good moments still happen
LOL, no, I don’t indulge in litres of Coke every day
It’s a treat I allow myself maybe once a week. Usually, I just savour nice, ice-cold water. It seems unbelievable to me now, but since I’ve been on daily nocturnal hemo, I find I actually have to watch the calories, because I gain weight so easily now. The cheeseburger doesn’t hurt though. For me, it’s a great way to get protein. I can easily and joyfully get 4-5 ounces of meat in one shot that way. I’m mostly a vegetarian, believe it or not, but for some reason, I learned to love cheeseburgers eons ago. I know, it’s a paradox, but what can I tell you.
Arlo Guthrie played at the festival I have just been to, a couple of years ago. He was great and everyone over the age of around 40 were singing their hearts out to Alice while all the under 40s didn’t know what the heck to think!
I survived the 12 hours of music and bopped the hours away no worries.(must be the EPO!) We always take fold away chairs for when we can’t stand anymore.
Pierre, 2 notable Canadian musicians were there. David Lanois and Harry Manx who is one of my favourites.Bliss.
Another good easter festival then Beachy…I suppose I’ll have to wait several weeks before it gets onto the telly.
I don’t think we’ll have to go to 6 nights, as long as our clearances are O.K…like you the 3 and 3/4 sessions I do are giving great results, but I do like the ‘nights off’ to go to bed!
And, Pierre, I never was so excited as I was to hear about that mack truck load of gorgeous food you consumed the other day- man did that sound good to a renal diet starved person like myself (hopefully not for long)…you ARE watching out for coronary artery disease aren’t you :?: