I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Nocturnal => Topic started by: kitkatz on July 16, 2008, 10:30:23 PM
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Well I have information a clinic doing nocturnal dialysis is in Riverside. I have asked the social worker to look into this for me. I figure after almost ten years of regular dialysis three times a week, maybe it is time to try another modality. I am going to push him to really look at it for me. It might give me better outcomes on my dry weight, fluid and weight gain. Also phosphorous is slowly becoming a real problem. Also school stuff needs more work after school now and I need that extra hour after school three days a week. I am hoping for reasonable hours.
EDITED:Moved to nocturnal section-kitkatz, Moderator
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good luck, keep pushing...Boxman
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Rerun loves it. Good luck. :grouphug;
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Good luck with that, Kit!! You sure do need a break, that's for sure!!
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Hubby has been doing nocturnal at home for almost 2 years now and it has been fantastic!!! Will you be doing it at home or in center kitkatz. Phos is not even an issue for him anymore!! He eats whatever he wants. Go for it if you can!!! :beer1;
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allright I too am fixin to embark on that quest. best of luck. here`s to feelin much better.
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i have always loved the idea of nocturnal in-centre dialysis. Hope you get it done, Kitkatz!
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good luck
and I am here for you
however I can help
my center will not offer noctural
but I would do it in a minute
am thinking about you
remembering teaching all day and diaysis three times a week on the last shift
it was difficult
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Kitkatz, I hope if all works out great for you.
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good luck
and I am here for you
however I can help
my center will not offer noctural
but I would do it in a minute
am thinking about you
remembering teaching all day and diaysis three times a week on the last shift
it was difficult
Want to come over and catch the free floating cat and dog hair around here?
No seriously, thanks. The social worker is making phone calls next week for me. Dialysis is killing me slowly and I can feel it now. Got to change something. my blood pressure is dropping regularly with no outward signs of it two and half hours into a four hour run. I get the sweats too. Then the weird low blood pressure feeling hits three hours into it. I am always over my dry weight, too, no matter how much they raise it.
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I got a phone call tonight at 9:30 from the nocturnal dialysis center. I am to visit them on Wednesday. It is run by Davita. I am going to go take a look at the nocturnal set up at the center. She says they have chairs, but I can sleep anywhere at anytime so a chair is no big deal. Hope they are comfy ones. They have space for me and will take me anytime I want to come. I guess I better let the doc know what I am doing, Hehehe.
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I really struggle with the chairs. By the time my 3 hours are up, I'm really squirming and uncomfortabe. No way I could do it all night.
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It is a go for nocturnal. The paperwork ad approval are being done now and hopefully Kaiser will approve and I can move on Monday to the new center. Wish me luck!
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Good luck Kit :thumbup;
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Good Luck! I can't wait to hear more about it!
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Best of luck Kitkatz. Let us know how it goes for you. Hope you feel the improvement quickly.
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:yahoo; So glad to hear it is working out. I will try to control my jealousy. I am happy for you :cuddle; (boohoo boohoo)
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:2thumbsup; Great news kitkatz. Let us know how it works out. I'm sure you will start to feel better soon. :beer1;
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Kaiser approved it today and I make the move after I sign paperwork on Tuesday at the clinic, on Wednesday, so Monday will be my last day at Fresenius. I will tell you what Davita is like from the chair. My tech is moody at me today when she found out I was leaving. I have to do something about this blood pressure and if nocturnal will knock it down and keep it down, good for me. The con of the place is it is a half hour to forty minute drive each way. I am going to find the overland without freeway routes in case the freeway gets crazy. I am also going to go the 15 to the 91 and see if it is shorter or longer than the 215 to the 91 to Tyler.
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:yahoo;
Go to Target or WalMart and get a cheap eggshell pad twin size. That really helps. I put that on the chair and tuck the top down behind that bar on the top of the chair (most dialysis chairs) then I put a fitted sheet over that and jump in with my blankey and pillow. You may want ear plugs. I don't, but it is a thought.
I'm so excited to see how you like it.
Travel times are evening and early morning, so traffic should not be an issue, but in So. Cal it may be.
I feel lots better Kit, I really do. They will have 8 hours to get your fluid off. That doesn't mean you can tank up, but if you are having problems with getting fluid off this will help.
Best of luck and I'll be saying lots of prayers.
:cuddle;
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Best of luck kit! Hope this helps with the bp. Keep us posted.
Rerun, I've been reading your 'nocturnal tips'...sounds downright dirty, doesn't it?? Seriously, the tips are very helpful for those of us considering it. Thanks, and keep 'um coming!
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I start tomorrow 7p.m. to 3p.m. This means more time at school and five hours in the evening for me. Time I have not had before. I will sleep well I am sure after a full day of work then dinner. I signed the paperwork today.
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Kitkatz, I am excited for you. Lots of prayers that this works out well and the blood pressure goes down. :2thumbsup;
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Me too. The blood pressure will kill me first before dialysis does.
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Hey Kit. I am going to be doing nocturnal at home because they say it is one of the better options. The plumber just came to see about putting a drain and tap in the spare bedroom.....wait for it.....he told me I would be BETTER off if I just did my dialysis in the bathtub. The scary thing is he was serious and he then he charged me $250.00 for that opinion. I'm borrowing you stick again........gee it comes in handy!!!! :Kit n Stik;
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Use the stick well on stupid people. :Kit n Stik;
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Good Luck tonight, Kit. I can't wait to hear about your first night. :clap;
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Good luck , Kit :flower; :flower;
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I hope it works out. I cannot imagine getting any sleep at 7PM - or driving home at 3 AM - but if it makes you feel better then it's gonna be worth it! :waving; Good Luck!
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All the best!
:-*
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We need a crossed fingers icon. Hope it goes well for you!
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I may try some nocturnal when I get my NxStage but I still worry about tossing and turning with needles in my arm.
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Hope nocturnal works out better for you. I'm curious to hear about it.
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Crossed fingers!
:2thumbsup;
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I had about four hours sleep in addition to the two at home this morning. When I got off the machine I did not feel as rugged as I usually do. A little headache and I was down to dry weight first time in a month! No pressure drops, no cramping, just gentle cleaning. We shall see how this sleeping thing works out. I need to bring a large pillow to wrap my arm around when I turn in the chair to sleep and maybe one for my back. I shall end up looking like to goodyear guy all pillows. Hehehehe.
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:clap; so glad it's working for you kit
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Glad the first night went pretty well. You can ask them for something to sleep, but only take a half dose. Just enough to get you to sleep.
I'm glad you are down on your dry weight. Don't be thinking you can drink all you want. The huge fluid shifts are very hard on your heart.
:yahoo;
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Too bad you can't borrow Rerun's inflatable mattress. She looks so comfy in it. :rofl;
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:clap; I glad it went well.
I had my doctor visit today and apparently my creatinine came down a little (from 8.32 to 7.71 or something like that) and he says I don't have to start dialysis yet. I have another blood draw on the 21st and a doctor visit on the 27th. Hopefully my creatinine will not be back up.
So I dodged the bullet once more! :boxing; :sir ken;
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Consider yourself lucky, Kelly. Mine was much lower than that when I started dialysis.
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You know, I've read on here where people were starting dialysis when their creatinine hit 6+ and/or their GFR was 10. My GFR is at 6.6. Other than fatigue and muscle weakness I feel fine. My ammonia breath has gone away and I have never had nausea or vomiting. I consider my self real lucky! He said if my creatinine had stayed at 8 he would have started me even though I feel okay. But now that's it's lowered a bit he said he will wait until I want to start. Hell no!
I feel like the "Boy Who Called Wolf". I keep telling everyone that I may start in the next week or so and then I don't. I've been saying this since April! I'm happy about it, but I think my friends and family are getting bored with my excuses for not wanting to commit to anything like babysitting. My brother had his kids the entire month of July and he went ahead and hired a daytime babysitter because I told him I'd probably be on dialysis. Oops. I'll hang on as long as I can!
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Hi Kellyt. I had my graft put in nearly two years ago and they told me then I would be on dialysis within a couple of months. I went to my neph and she said my creatnine is slowly creeping up but it is still only 5.5. She wants me to start regardless by September. I have been unwell but since I started exercising I am feeling really well and have no nausea, itching or any symptoms really whatsoever at the moment - but I have had in the past. I am not going to start on dialysis prematurely if I don't need to. We are just lucky that we have had some notice so we can get organised. I feel really sorry for those who have had to start without any preparation. My sister and husband are thrilled when I tell them I don't need to start after an appointment with the neph. I am ready to start but I am certainly not worried about what my family or friends think if I don't start. You are allowed to be selfish right now. Think about yourself first. Your friends and family are not the ones who are going to be living with this the rest of their lives.
Hey Kit......Well done with your first night of nocturnal. My neph told me that starting nocturnal whether at home or in the clinic is like having a new baby in the house. It is an adjustment with your sleep pattern but you do get use to it. I hope it all goes well for you. xxx
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I figure the body will begin to associate the chair at dialysis with night night time, sleeping time and I will adjust. I made it to work today and stayed on my feet and even went to the chiropractor after work. Then came home and crashed until the phone woke me up about an hour. I feel okay today.
I need a book light to read by when the lights go out and pillows.
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When I do start I'm going to do in-center nocturnal. My neph it's the best he can do for me until transplant. He said (and I don't really know how to take it, but it sounded good) that with nocturnal dialysis he is losing more patients to "transplant" than to "death". Sounds good to me.
I want to get a sleeping mask and ear plugs. The ear plugs really just muffle the sound, but if someone comes to talk to me I will hear them. I love watching TV in bed, so I plan on doing just that.
How far is your clinic from your home, kitkatz? Mine will be roughly 20-25 minutes. However, it's near the city jail. I hope they have someone walk us to our cars. There's usually a bunch of degenerates that hang out near the jail. It's also near a few hospitals. I think that's why they hang out there - they're near a hospital.
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The dialysis clinic is 24 miles from the house. Not bad, but still... I am off to get my stuff together. I bought a king size pillow to hold onto and a small one for my back. I also bought covers for them and pillow cases. I will see what happens tonight. Got to sleep tonight. I have inservice at work tomorrow.
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get a good night's sleep and make sure the lines are taped securely.
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I'm only 5 minutes from my clinic. When I decided to move from Sacramento back to Spokane to be closer to family and start in center Nocturnal, I just went on line and found an apartment close to the clinic that accepted pets.
Good Night Kit and sleep tight don't let the bed bugs bite your lines.
:rofl;
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Hi Kit.....did yoiu manage to sleep better??
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Holey moley! I had little sleep last night. It is going to take a little while to get used to a new place and new sleeping arrangements. I came home and slept 4 to 11 this morning. At least it is Saturday and I can do it. Unfortunately I did not make the school's inservice today.
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Wow, I was gone for a week and so much has happened for you Kit. Here's hoping the nocturnal will bring you to a new level of well-being :beer1;. I am a big fan of earplugs and eye masks. I can sleep in any hotel if I have those. Might be worth a try.
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It was the chair last night. I felt like I was sliding down out of it. Got to figure something out soon. I think I am going to get an eggshell mattress like Rerun uses. Where did you get yours Rerun? Then maybe I will not feel the chair under me so much. I am also going to down a Benadryl and two Tylenol on Monday night and let them work on the sleep aspect of the night. Maybe then I can sleep for the night
:rant; If my family asks me one more time how I feel or of I am adjusting to it I may scream. I have been twice! It takes 20 to 30 days to make a change work for your life. Give it and me time please folks. I have to see if this will work for me. :rant;
One of the pillows I bought worked last night. The king sized pillow was too big so it stays home in the future. I knocked everything off of the table and almost the machine with it last night. Not a good idea to fling my glasses to the floor. The tech was cool. He picked everything up for me and even popped the lenses back into the glasses for me. He even cleaned my glasses. I put them on in the morning and wow I could see! I am going to ask if I can change my time to be from 8 to 4 instead of 7 to 3. I think I would sleep better. I could watch TV 8 to 10, then sleep 10 to 4. Then come home and get ready for work slowly in the morning. Maybe have a breakfast out in the morning.
I feel good. So we shall see. I am actually at my dry weight when I come off of the machine. That has not happened in months. I am usually a kilo over when I come off of the machine. We shall see how the blood pressure reacts to all of this stuff.
The funny thing was, Dr. Lee, the nephrologist who works at this center, actually came over and talked with me for about 20 minutes. He even used his stethoscope on me to listen to my heart and then palpitated my abdomen. I have ever had a dialysis center doctor do more than talk to me for five minutes. That was really unusual. He even gave me his home phone number so I can call him if I am having any unusual problems. He seemed pleased I had come there for treatment. He even said he had read my records! Wow! Coolio!
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My center has a number of hospital beds for the patients who aren't ambulatory. Why can't you use those for noctural?
My recipe for a good nights sleep.....an Ativan and two Tylenol PM.
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That sounds very promising, Kit! I look forward to hearing more as you go. I saw those eggshell bed pads at Linens and Things. I think the twin was 9.99.
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I just saw the eggcrate mattress pads at our Walmart today. They are stocked up on twin size stuff for the kids going off to college.
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Yes, I got one today at Wallyworld. It looks funny but should work.
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Kit, you might have to trim the twin size down to fit in the dialysis chairs. I used a kitchen knife and it cut it like butter. Hope it helps your comfort. :cuddle;
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Hey! I feel better. I mean I really feel better. Even with no sleep on Tuesday, I felt better. :cheer:
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Wonderful! Hopefully nocturnal will keep getting better. :flower;
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Hey! I feel better. I mean I really feel better. Even with no sleep on Tuesday, I felt better. :cheer:
That's GREAT kit! :yahoo;
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that is absolutely, positively, utterly, fantabulous :yahoo; :cheer: :yahoo;
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Hey! I feel better. I mean I really feel better. Even with no sleep on Tuesday, I felt better. :cheer:
So happy for you, kitkatz! :cheer:
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:clap; :yahoo; :clap; Keep up the feeling better Kit.
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:clap; So glad you are feeling better!! hubby said that after he started nocturnal his brain didn't feel "fuzzy" anymore!!
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Very Cool.
:beer1;
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:clap; So glad you are feeling better!! hubby said that after he started nocturnal his brain didn't feel "fuzzy" anymore!!
Yes, yes, and YES! It is so true. When I went on a trip and was back to 3 hours I had the fuzzy thinking again.
Kit, you will find that the doctors that are the head of Nocturnal are very dedicated. They would have to be to take on yet one more shift.
Maybe you could share Dr. Lee's HOME phone number with us! I'm sure he wouldn't mind! :rofl;
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Great news, glad you are feeling better!
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Kit, how did you do last night? Did you sleep anybetter?
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Benadryl is a wonderful sleep aide. They zapped me with some in the lines and a half an hour later zonked. So I slept about 5 hours Wednesday night. I made them put the fan directly on me.
I am sweating like a pig during treatment. I changed my hours to be 8 to 4 tonight. We shall see how it works.
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Maybe if you wore your Teddy it would be cooler! ONLY it would make the men HOT!!!!
:yahoo;
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JUst what I need more hot men in my life! :rofl; I would probably frighten them to death in a teddy!
I got to talk to the tech who does home hemo in REdlands. He is going to get me an invite to the orientation class for home hemo. This nocturnal thing may have been a good move.
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I am sweating like a pig during treatment.
I have been doing this too. My doctor said it was because i was shifting from a too high concentration of electrolytes in my cells to a normal, lower level, and my body was pushing out the extra water. In the last week, my dry weight has dropped over a kilo.\
Short dialysis normally gets a better electrolyte balance in t he blood, but doesn't lat long enough for the electrolytes in the cells to leach into the bloodstream. The same thing is happening to all the other toxins in your system. It keeps your blood clean long enough to really clean out your other cells.
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kitkatz first when hubby came home on nocturnal he would sweat like a pig!! Wake up in the night and he would be soaked. Started turning the temp on the machine down from 37 celcius to 36.5 and no problems since. Of course we checked with the dialysis nurse first.
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kitkatz, so glad you are feeling better, hope it keeps getting better and better! Thank you for posting your experiences, it is a real benefit for those of us considering nocturnal. As for sweating, I run the machine temp at 36 instead of 37, and it keeps the sweats at bay.
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Kit, just remember with home hemo you have to set up the machine and tear it down and do monthly maintenance. You have to order supplies and make sure you have room for all of it. You also live with the machine 24/7. A constant reminder. I didn't like it.
I want to go and get in my chair and get up and go home.
Just keep this in mind when you go to the "sales" meeting.
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I will. But I would like to see if it will work for me. I want tot ravel. NxStage seems to be more conducive to it than in center hemo. At least I can say I tried it.
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That's true and it may suit you just fine. Best of luck and keep us posted. I know you will!
:cuddle;
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Kit, just remember with home hemo you have to set up the machine and tear it down and do monthly maintenance. You have to order supplies and make sure you have room for all of it. You also live with the machine 24/7. A constant reminder. I didn't like it.
I want to go and get in my chair and get up and go home.
Just keep this in mind when you go to the "sales" meeting.
It never occured to me the "set up and tear down" and "mainteance" of the equipment, but the #1 and #2 reasons I haven't considered home hemo was 1) I don't know if I or my husband could stick me and 2) I don't want to have to see it all everyday. Nor do I want my husband to have to see it all everyday. I would prefer he just know that I go away and come home hopefully feeling better. When/If I should die during all of this I don't want him to dwell on what I went through on dialysis.
Now, I haven't started dialysis yet and I have nothing to compare it to, but just from what all have said here at IHD I think incenter regular or preferably nocturnal would be best for me.
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Kitkatz, I am so glad nocturnal is allowing you to feel better. You deserve a break!
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The doc says the sweating is my body's way of getting together and pushing more toxins out through the skin. He says it is a very good thing. I need this T-shirt now.
Nocturnal Dialysis
It is not the toxins anymore..
I really am a bitch!
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don't go talking about being hot and sweaty and hooked up to a machine
you know what that does to RichardMel
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Holey schlamolies! I got blood work results after one night on nocturnal my 1.4 Kt/v went to 2.8. No wonder I feel better! I have to cut down on one more blood pressure med because my blood pressure whacked out last night. I was waiting for a signal before I took the Atenelol out of my daily routine. I have already dropped the Plendil out. I do not like it when the blood pressure plays hide and seek while on a long dialysis run. They also poked a nerve last night and had to poke me again for a new spot. I was pretty miserable last night between ten and two then I fell asleep and was sleepy when I left the premises. Tried to sleep today but ten oclock was it. Body wants up. Hubby is not sleeping well these days.
November is training month for NX stage for me!
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:2thumbsup; :clap; Great that your bloodwork was better Kit!!! Nocturnal or short daily treatments are a LOT better than 3 times a week.
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Love reading these posts. It is so exciting to hear about how well it is going. Thanks for sharing it with us. :yahoo;
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:beer1;
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Glad everything is going so well for you Kit, especially the numbers. That benadryl will
work everytime. Hope things continue to go good.
Love, Mimi
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Kit glad things are going good for you :flower;
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kitkatz
how do you feel after waking and then having a full day at school?
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Some days I am a little sleepy but I feel good all day at school and all the way into the next day. Wow! I am nicer and less moody. I am able to do more things and am not stressing over all of the extra work this year.
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November = NxStage! How exciting. You have worked hard to make this happen. Epoman would be very excited.
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Hey Kitty Kitty Kitty! I attended an In-Center Nocturnal Introduction tonight...and I was trying to remember all the things you have brought up as you have shared your experiences. I have done 8 hour treatments before-- but during the day, so other than chair issues, I couldn't really think of other problems I might encounter.
If you had to do it all over again, what would you have changed about your nocturnal sessions?
I'd also like to get an idea of all the places everryone knows about that offer In-Center Noct...
:flower;
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Some days I am a little sleepy but I feel good all day at school and all the way into the next day. Wow! I am nicer and less moody. I am able to do more things and am not stressing over all of the extra work this year.
so will we soon see flowers again
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No, the stick is back for the seventh graders I am teaching this year! :rofl;
What would I change about nocturnal... The chair is not the most comfortable thing to sleep in. I bought an egg crate mattress cover to go on it and that helps. Thanks to Rerun for the idea. I am still adjusting to it all. But I feel better and it got me onto the home hemo list for training. God does work in mysterious ways, even if I throw rocks his way.
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No, the stick is back for the seventh graders I am teaching this year! :rofl;
What would I change about nocturnal... The chair is not the most comfortable thing to sleep in. I bought an egg crate mattress cover to go on it and that helps. Thanks to Rerun for the idea. I am still adjusting to it all. But I feel better and it got me onto the home hemo list for training. God does work in mysterious ways, even if I throw rocks his way.
Amen! I'm happy for you, Kit! :yahoo;
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:2thumbsup;
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I am hitting my dry weight target regularly now. I have also come off of three blood pressure pills. I am no longer taking Minoxidil, plendil or atenelol. Hurray. I am just on Cozaar for the heart. It is supposed to be good for the heart. My blood pressure seldom crashes during dialysis now. I do not have the worn out headache after dialysis. I feel pretty good, sleepy but pretty good.
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Makes you wonder how much longer we're all going to have to beat the docs over the head with the big stick to make them see that standard 3 day a week dialysis is just not enough!
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Kit, when you get off the machine do you go home for a few hours before going to work and if so do you lay down and nap/sleep or do you feel awake and functioning right away?
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I go home and nap from 4:45 to 5:45 then get up and start the day.
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The blood work for my first month on nocturnal is back!
The KT/V is 3.09. I have never had it so high!
The phosphorous is 5.1 with me forgetting binders quite a bit. SHHH. Don't tell.
Calcium is 9.7. Up a little. I thin it is the tums.
PTH is 321. Up a little from six months ago.
Albumin is 4.1
nPCR 1.36
Hemoglobin is 11.3
Iron saturation is 23%
Ferritin is 545
CAxPhos corrected is 49.5
Potassium is 5.2
My water weight gains are okay. I was came off two kilos heavy the other day and am fighting to get those plus off now.
So nocturnal is helping me feel better. Hurray!
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Yay Kitkatz! I know it has been an adjustment for you, but it truly seems to be worth it! Congratulations! :yahoo;
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The numbers look real good, Kit. Although at my center, if your hemoglobin drops under 12, you have to take the epo shots until it comes back up.
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This is wonderful :2thumbsup;
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Yay to feeling better! That's very good news Kit! :yahoo;
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It was as low as 9 at one time.
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I have decided to keep my nocturnal schedule for now instead of going to home dialysis. My husband and I discussed to pros and cons of it and decided together we just could not do it. He did not want it in the house and was worried we would do something wrong and hurt me. If the partner cannot or is unwilling why drag him into it? Plus I am not technologically oriented and would probably throw the machine through a window when it acted up. (See school laptop!) It looks like I am going to the other Nocturnal Babe on this sight.
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Sounds like the best choice for you and Victor and that's great Kit. All the best.
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Kit, I am so proud of you. You and Victor are such an inspiration on so many levels.
xoxo
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Night Stalker - with a big stick!
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I am locking my doors...Boxman
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I'm all for home hemo - but I do know it doesn't work for everyone. It sounds to me like nocturnal is working pretty well for you, and that's the important thing. :cuddle;
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Am I the other Nocturnal Babe on this site??
???
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Am I the other Nocturnal Babe on this site??
???
YES BABE, YOU ARE!