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Author Topic: Whats going on with me  (Read 3287 times)
SweetyPie
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« on: February 19, 2019, 06:50:37 PM »

Wow, I have no words. I have no idea what happened today. I started off dialysis okay. But my nurse asked me why my face looked pale 10 min in to dialyais I just said I dont know. As treatment went on the back of my eyes started to hurt I thought maybe I need to rest so I napped I wake up and theres 20 or so min left of dialysis but I felt like I was going to die. The room was moving but I was still the techs quickly ended treatment but I kept getting worse and worse. I know I have complained about treatment in the past but I have never experienced something like this before. My legs wete giving out and I wasnt getting any better. I also had stress on me to make it outside because my dad had to get to work but I was in so shape to walk. Despite the extra fluid at the end I still seemed to get worse that my lips, hands and face were pale and dry. The nurse had to reopen my cath and pump more fluids into me.  I left dialysis the same weight. I am terrified to go again Thursday... i never felt like this in my life I was debating whether to go to the er or not. I slept for 3 hours when i came home and i feel out of energy. Pray for me everyone I feel upset.  :'(
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Cowdog
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« Reply #1 on: February 20, 2019, 07:44:00 AM »

What is your dry weight and how much were you trying to pull on Monday? Could you have gained some real weight and not just fluid weight so you are trying to go too low?
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Hemo in Center since 11/2008
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Riki
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« Reply #2 on: February 20, 2019, 08:36:38 AM »

Sounds like they pulled too much.  Do you have a limit?  I know I do.  I can't take more than 3kgs off per treatment, no matter what my weight is when coming in.  If I'm up more than 3, all that comes off is 3.  We tested that theory a few times, and one time I had to go straight to ER from dialysis because my bp dropped and I wasn't able to stand without getting lightheaded.
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Dialysis - Feb 1991-Oct 1992
transplant - Oct 1, 1992- Apr 2001
dialysis - April 2001-May 2001
transplant - May 22, 2001- May 2004
dialysis - May 2004-present
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HD - Dec 2008-present
cassandra
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When all else fails run in circles, shout loudly

« Reply #3 on: February 20, 2019, 10:41:12 AM »

Hi Aaisha I agree with Cowdog and Riki, you are very most likely way too dry. I hope the next session you won't take off anything, not even the washback.


Good luck honey, keep strong, Cas
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96

       still on waitinglist, still ok I think
SweetyPie
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« Reply #4 on: February 20, 2019, 01:07:12 PM »

So, I have noy been eating as much because my stomach has been feeling a bit off lately. Also, I have been constipated. I can not pull more than 2 kilos. I was trying to pull 1.7.
Riki you know the feeling except I was lightheaded sitting down... when they would even move the recliner I felt like I was spinning. It is very scary.
Another thing is, I am sooo bloated and swollen today because of the extra fluid and my stomach feels quite full. How much do you guys think I should try to pull tomorrow. I am a bit scared to go tomorrow.
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Cowdog
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« Reply #5 on: February 20, 2019, 01:48:37 PM »

If you are constipated then they are also weighing, well you know. It wont come off as fluid!!!!
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Cupcake
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a good year for Chevys

« Reply #6 on: February 20, 2019, 02:28:24 PM »

Not to scare anyone, but once in a while my mother would have a bad reaction to dialysis and I suspect that they hadn't gotten all the disinfectant cleared out when they cleaned the filters. It was Davita. Have they since (that was 8 years ago) stopped reusing filters?
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PD for 2 years then living donor transplant October 2018.
SweetyPie
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« Reply #7 on: February 20, 2019, 02:51:34 PM »

Not sure what you mean about reusing filters but I know when they set up they take out new things from packaged bags.
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Riki
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« Reply #8 on: February 21, 2019, 10:27:35 AM »

Not to scare anyone, but once in a while my mother would have a bad reaction to dialysis and I suspect that they hadn't gotten all the disinfectant cleared out when they cleaned the filters. It was Davita. Have they since (that was 8 years ago) stopped reusing filters?

I don't think there are many who reuse the dialyzers anymore.  I know that at one time it was common practice, used as a money saver, but I think the infection risk became too great
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Dialysis - Feb 1991-Oct 1992
transplant - Oct 1, 1992- Apr 2001
dialysis - April 2001-May 2001
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Paul
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That's another fine TARDIS you got me into Stanley

« Reply #9 on: February 21, 2019, 03:52:04 PM »


Not sure what you mean about reusing filters but I know when they set up they take out new things from packaged bags.

If they come out of a fresh package you can be certain they are NOT reused ones. Another clue is to watch what happens to them after your session. My clinic dumps them in a "contaminated waste" bin when they clean the machine.

However, even without this, as Riki says, reuse is rarely done these days. Strong risk of infection, and when that happens an even stronger risk that the infected patient will sue. It is just not worth their while risking bankrupting the clinic to save a few dollars on a filter.
« Last Edit: February 21, 2019, 03:53:07 PM by Paul » Logged

Whoever said "God does not make mistakes" has obviously never seen the complete bog up he made of my kidneys!
SweetyPie
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« Reply #10 on: February 21, 2019, 06:43:35 PM »

I see them cleaning the machine everything goes straight in the trash. Btw... treatment was so much better today. I didnt remove everything off I wanted to give my body a break. But i can finally see my jaw line!! Lol
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KatieV
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« Reply #11 on: February 22, 2019, 07:17:55 AM »

I see them cleaning the machine everything goes straight in the trash. Btw... treatment was so much better today. I didnt remove everything off I wanted to give my body a break. But i can finally see my jaw line!! Lol

Glad it went better!

If you'd been having difficulty removing fluid, could you arrange an extra dialysis session?  I do NxStage at home, but had some unusually bad cramping a few weeks ago with a couple treatments.  I was nowhere near my dry weight either!  I had some "extra" time on a Sunday and did an extra long, slow treatment taking only 0.5 liters/hour (normally 0.75 or 0.8).

It might help if you could get an extra session in with a slow rate of fluid removal, just to take some of the extra fluid off.
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~~~~~~~~~~~~
March 2007 - Brother diagnosed with ESRD, started dialysis 3 days later
April 2007 - Myself and sister also diagnosed with Senior-Loken Syndrome (Juvenile Nephronophthisis and Retintis Pigmentosa)

Since then, I've tried PD three times unsuccessfully, done In-Center hemo, NxStage short daily, Nocturnal NxStage, and had two transplants.  Currently doing NxStage short daily while waiting for a third transplant.

Married Sept. 2011 to my wonderful husband, James, who jumped into NxStage training only 51 days after our wedding!
~~~~~~~~~~~~
SweetyPie
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« Reply #12 on: February 23, 2019, 01:00:54 PM »

Hi again,
So treatment didn’t go well again. During treatment I started to feel like I was gonna pass out again and despite how much fluid they would give me it felt like i was getting more and more dizzy. I am upset and don’t want to go to dialysis. Why is this happening? I let dialysis the same weight I came in
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iolaire
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« Reply #13 on: February 23, 2019, 04:58:38 PM »

Why is this happening? I let dialysis the same weight I came in

Did you talk this over with the dialysis center nurse?  That person should have some ideas and can escalate your needs to the nephrologist.
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Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
SweetyPie
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« Reply #14 on: February 23, 2019, 06:50:20 PM »

I did talk with the nurse today. I told her I have been constipated for about a week meaning I have not gone number 2 in a week. She said start miralax. I really hate this feeling. Do you guys think it could do with no eating enough? I ate at 7 last night then had treatment at 6am. That is a long gap but I wasnt hungry
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GA_DAWG
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« Reply #15 on: February 24, 2019, 09:38:50 AM »

I go through different stages. Sometimes I want to eat everything I see, and others I really don't want anything. During those times I have to make my self eat anyway. From the get  go they told me it was important to eat before dialysis. In the hospital once they came and got me for a session just as my meal was getting there, and they had previously told me they did not allow eating in the dialysis ward, so I skipped that meal. I blacked out when I stood up after the session, fell against the machine, hit my head, and cut my arm. The doctor told me never to skip the meal before dialysis again and if they came to get me, tell them either they waited or allowed me to take the food with me.
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SweetyPie
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« Reply #16 on: February 24, 2019, 11:17:32 AM »

What are some thing I should eat before dialysis? I think maybe ai should. Dialysis is already rough on the body maybe it will help
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Riki
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« Reply #17 on: February 24, 2019, 08:18:06 PM »

I think your priority should be getting the poo out.  That adds weight on, making to seem heavier than you really are.  What you are weighting in at is false, so they are taking fluid that isn't really there.  That is why you are feeling so..... crappy.... during treatment.  Make sure they replace everything they take until you get the poo out

I can understand you not being hungry.  Your guts are full already
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Dialysis - Feb 1991-Oct 1992
transplant - Oct 1, 1992- Apr 2001
dialysis - April 2001-May 2001
transplant - May 22, 2001- May 2004
dialysis - May 2004-present
PD - May 2004-Dec 2008
HD - Dec 2008-present
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