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Author Topic: I hate dialysis!!! Oh wait, where have I heard that before?  (Read 3008 times)
paddbear0000
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« on: February 17, 2009, 10:50:15 PM »

Yes, day one of dialysis went fairly well. It turned out to be a big tease! Day two included weird pressure in my head, a headache, nausea and a weird taste in my mouth. Day three was even worse. All the same things, only with vomiting added. Plus a massive headache  :banghead; afterward for the rest of the day, that was so bad, I was vomiting. They finally figured out what (most of) the causes were. They have to leave the speed at 250, or I get that weird pressure and a headache, and they have to keep the dialysate rate at 600 or I vomit. At these rates, i'm going to need to start going for 4 or 5 hours! I'm still getting a massive headache afterward for the rest of the day that Tylenol won't even help. I tried drinking a bunch after Saturday's treatment, but that didn't work. Today, they had to take off almost 3 pounds and I still have fluid. Only my vicoden helps. It's 12 hours later and I'm still in pain. And it's not from taking too much fluid off because my bp is still slightly high when done, and I still have some fluid weight on. We're still trying to figure out my dry weight.

Does anyone have any other ideas?
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circleNthedrain
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« Reply #1 on: February 18, 2009, 01:04:53 AM »

Sorry you are having so much trouble.  Dialysis DOES take some adjustment time in the beginning.  Slowing the pump and dialysate speeds should help.  They should be able to adjust speeds up as time goes on (week or two).  Hang in there paddbear...things will improve.
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1979 Diagnosed with kidney failure
1979 Right arm fistula
1979 Start hemodialysis
1980 CAPD catheter
1980 Start CAPD
1989 Cadaveric kidney transplant
1995 2nd cadaveric  kidney transplant
2007 Start hemodialysis
2010 Still drawin' wind
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« Reply #2 on: February 18, 2009, 02:39:34 AM »

I had more problems at first and things do get better  -- sorry it has been like this for you---- I hate dialysis also --- four years now --- :-*
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jbeany
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« Reply #3 on: February 18, 2009, 09:59:46 AM »

That fact that you have fluid on doesn't mean it will necessarily come off easily.  I doesn't matter how much fluid I have on, I can't take off more than 2.5 without crashing.
 Honestly, it's going to take the first month before it settles into some sort of routine.  The nasty taste fades out, and you reach some sort of dry weight that works for you.  I hate in-center, but if it was all like the first month, I would have quit already.  I'm sorry you are having a rough time right now - just try and stick it out for a few more weeks, and keep trying different setting on the machine to see if you can get something that works for you.
 :grouphug;
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Rerun
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« Reply #4 on: February 18, 2009, 10:38:47 AM »

Keep taking the drugs to get you through this rough time.  Sleep as much as you can for escape.  Things will get better when you realize your head doesn't hurt anymore.

                 :cuddle;
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MandaMe1986
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« Reply #5 on: February 18, 2009, 11:09:41 AM »

Sorry it has been so hard for you.  I hope it gets better as time goes.  :grouphug;
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« Reply #6 on: February 18, 2009, 11:18:50 AM »

 :grouphug; Sorry and I hope things get better soon
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Tina
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Joe Paul
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« Reply #7 on: February 18, 2009, 12:02:42 PM »

Hang in there Paddbear, things will get better with time  :grouphug;
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Bub
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« Reply #8 on: February 18, 2009, 12:39:19 PM »

I also had a rough time at first.  They did eventually crank the machine down a bit and I had to stay on a bit longer, but it was well worth it.  No more headaches, vomiting and cramps.  I have to spend an extra 30 minutes on each session but the sessions were then much easier. Good trade.  Hang in.  It does get better!
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paul.karen
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« Reply #9 on: February 18, 2009, 01:27:12 PM »

:-(

Hope things get figured out soon for you.
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« Reply #10 on: February 18, 2009, 02:36:07 PM »

Sorry it's so hard at first. I think it will probably get better. It must, or why would be continue with dialysis. Hang in there and make the changes needed to feel better. Good luck.You can do it.
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« Reply #11 on: February 18, 2009, 04:17:58 PM »

 :grouphug;
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As for me, I'll borrow this thought: "Having never experienced kidney disease, I had no idea how crucial kidney function is to the rest of the body." - KD
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« Reply #12 on: February 18, 2009, 04:26:44 PM »

Give it time things will settle down. Remember your body is adjusting to  having a lot done to it at once.   Then it will get better, then worse, then better, then...
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Take it one day, one hour, one minute, one second at a time.

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paddbear0000
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« Reply #13 on: February 18, 2009, 06:14:40 PM »

I think tomorrow I am definitely asking if I can have longer sessions. I have  spent the entire (non) dialysis day with a headache, vomiting and a very bitter taste in my mouth (not the same taste as the one I get while I'm on the machine). I don't think I'm getting nearly enough dialysis. I tried to go food shopping during a period when I was feeling a little better. I was feeling sicker and sicker as I went through the store and ended up bolting for the bathroom to throw up. I feel so bad, because I abandoned a cart full of frozen amd refrigerated food in the middle of the store because I had to go home.  :(
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Diagnosed type 1 diabetic at age 6, CKD (stage 3) diagnosed at 28 after hospital error a year before, started dialysis February '09. Listed for kidney/pancreas transplant at Ohio State & Univ. of Cincinnati.
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« Reply #14 on: February 18, 2009, 06:17:44 PM »

Some of what you are tasting when you are on may be the saline - I get a blast of that every time I start.  The funny taste the rest of the time is related to being under-dialized, though.
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« Reply #15 on: February 18, 2009, 06:28:33 PM »

Sorry to hear about your bad experience at the store.
Don't worry about the store, it happens every now and then. I have had a severe hypo while shopping after dialyisis, I'm sure they found my cart with frozen veggiesat some point. Just hope you don't get the hypo unawareness.

Hope you feel a little bit better right now.
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Diabetes -  age 7

Neuropathy in legs age 10

Eye impairments and blindness in one eye began in 95, major one during visit to the Indy 500 race of that year
   -glaucoma and surgery for that
     -cataract surgery twice on same eye (2000 - 2002). another one growing in good eye
     - vitrectomy in good eye post tx November 2003, totally blind for 4 months due to complications with meds and infection

Diagnosed with ESRD June 29, 1999
1st Dialysis - July 4, 1999
Last Dialysis - December 2, 2000

Kidney and Pancreas Transplant - December 3, 2000

Cataract Surgery on good eye - June 24, 2009
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Guide Dog Training begins July 2, 2012 in NY
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Next eye surgery late 2012 or 2013 if I feel like it
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« Reply #16 on: February 26, 2009, 08:30:46 AM »

Asking for longer sessions certainly helped me, but you are reporting vomiting and headaches, and I think they may need to adjust your dry weight up a little also.  I had mine adjusted up by just 1.5 kg and it made a world of difference for me.  I had lost a lot of weight while in hospital but gained a little back once I was home.  You are probable so tired of people saying "Hang in there it gets better!" but really it does.  My first two months were awful, but things are indeed much better now.  Your body will slowly adjust to dialsys and it will become routine.
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« Reply #17 on: February 26, 2009, 09:03:51 AM »

Yes, I have to say it too ' It will get better'.  When you and your body get accustomed to it, and they really figure out your dry weight (I am not convinced that they have it right as yet), you will see.
Though my first dialysis session went well, I used to feel absolutely drained (of course, that is what they did!) and totally lethargic after sessions.  I could not think of doing anything but just lying down til next morning.
Now, I do all kinds of stuff after dialysis (tutoring high school students, no less!)
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paddbear0000
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« Reply #18 on: February 26, 2009, 12:37:56 PM »

Things have gotten much better. The only times I vomit now, are on Monday nights and Tuesday mornings, when I've had 2 days off dialysis. Since lowering my speed and dialysate rate, things are much better. The headaches I got during dialysis are gone now too. I still get the massive headaches afterward and very tired, but neither my nurses, my neph nor I think it's because they are taking off too much fluid. They tried raising my dry weight by .5 kilos, but it didn't make a difference. Plus, I still leave with some fluid in my hands. If they took off 1.5 kilos, they wouldn't be taking off any fluid at all!
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I HAVE DESIGNED CKD RELATED PRODUCTS FOR SALE TO BENEFIT THE NKF'S 2009 DAYTON KIDNEY WALK (I'M A TEAM CAPTAIN)! CHECK IT OUT @ www.cafepress.com/RetroDogDesigns!!

...or sponsor me at http://walk.kidney.org/goto/janetschnittger
********************************************************
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www.facebook.com/profile.php?id=1659267443&ref=nf 
www.caringbridge.org/visit/janetschnittger

Diagnosed type 1 diabetic at age 6, CKD (stage 3) diagnosed at 28 after hospital error a year before, started dialysis February '09. Listed for kidney/pancreas transplant at Ohio State & Univ. of Cincinnati.
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« Reply #19 on: February 26, 2009, 03:48:20 PM »


Sounds like you're making progress!
I hope it gets better and better!  :cuddle;
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« Reply #20 on: February 26, 2009, 04:07:54 PM »

Your body is adjusting Padd...hope you feel better each day!

 :cuddle;
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Right nephrectomy 1963
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