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Ladybag
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« on: March 17, 2011, 09:49:18 AM »

Well today was clinic and I told them about my cramping and that I am so tired then the doc asked me if my hands were shaking I said yes but what does that have to do with anything. Then he told me he didn't think I was dialysising correctly if at all. I only take 1500 off and that is what I put in. I don't know if this makes sense but I feel like I am dying. My face is all big from holding in fluid and I just feel so drained like there is no fight left I just feel done and beaten. I have no one to talk to my mom freaks out, my dad has enough to worry about (Thyroid Cancer), my fiance is just getting tired of hearing about all of it and for the first time on dialysis I am scared.  :'(
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IGA Nephropahty Dec. 2007
ESRD May 2010
PD Cathiter May 2010
Dialysis June 2010
Kidney Transplant April 13, 2011
jeannea
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« Reply #1 on: March 17, 2011, 10:50:13 AM »

You're on PD? Have you done a kt/v lately? When you say 1500 is that your UF? Because for me 1500 is a great UF but everyone is different. It's possible that you need to be using stronger bags (red if you've been using green). It's okay to be scared. We all are at some point. Keep talking to your doctor and PD nurse until they figure out what's wrong and help you. We're here for you if your fiance doesn't want to talk about it. :grouphug;
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billybags
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« Reply #2 on: March 17, 2011, 12:41:05 PM »

Ladybag, are you on manual bags all day or are you on an over night machine. You should take more fluid off than you put in. What color bags are you using? You sound like you are retaining a lot of fluid. We have a kt/v l test every 6 months and my husband has been told he is border line with his dialysis and he now has to  add another bag. Have you cut down on your fluid intake? You must get on to your nurse or neph about this.
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Ladybag
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« Reply #3 on: March 17, 2011, 02:01:50 PM »

I use 1.5 and 2.5 bags and I do 4 exchanges a day. I have not had a kt/v but will be getting one next week. Since I only put 1500 in I am only getting out what I put in. This is all just very frustrating and I don't know if it is all worth it. I work at a place that is a complete pain in the ass when it comes to this. I get lectured for having doctor apts and if I don't come to work or want to go home because I am not feeling right they start taking work away or tell me maybe it would be better if I went on disability. I have only called in twice since I started dialysis and my apts take all of 1-2 hours. I hate dialysis I hate the way I look now with the catheter I hate the way I feel I hate it all and I am tired! I just want to go home and curl up in a ball and be alone.
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IGA Nephropahty Dec. 2007
ESRD May 2010
PD Cathiter May 2010
Dialysis June 2010
Kidney Transplant April 13, 2011
rsudock
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will of the healthy makes up the fate of the sick.

« Reply #4 on: March 17, 2011, 10:35:33 PM »

LadyBag hang tough I know how hard it is dealing with this crappy dialysis stuff....tell your employer you are going to sue them if they don't start accomodating you and your Dr. appts!! Have you thought about an antidepressant? Dialysis can be a lot to deal with...sometimes we just need a little extra help.

Thinking of you...
ox,
R
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Born with autosomal recessive polycystic kidney disease
1995 - AV Fistula placed
Dec 7, 1999 cadaver transplant saved me from childhood dialysis!
10 transplant years = spleenectomy, gall bladder removed, liver biopsy, bone marrow aspiration.
July 27, 2010 Started dialysis for the first time ever.
June 21, 2011 2nd kidney nonrelated living donor
September 2013 Liver Cancer tumor.
October 2013 Ablation of liver tumor.
Now scans every 3 months to watch for new tumors.
Now Status 7 on the wait list for a liver.
How about another decade of solid health?
willowtreewren
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My two beautifull granddaughters

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« Reply #5 on: March 18, 2011, 06:30:04 AM »

Oh, dear sweet Ladybug!

When you say you just want to curl up in a ball and forget it all, tells me that depression is taking its toll on you.  :cuddle;

Because your body is not getting rid of fluid like it used to, you must take off more than you put on. This is why you are having all the fluid build up. And that is going o make you feel terrible.

Please talk with your neph about this. Or the nurse, but insist that you get this sorted out. Don't let them put you off.

Thinking of you...hugs...and more hugs....and a shoulder to cry on.

Aleta
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Wife to Carl, who has PKD.
Mother to Meagan, who has PKD.
Partner for NxStage HD August 2008 - February 2011.
Carl transplanted with cadaveric kidney, February 3, 2011. :)
billybags
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« Reply #6 on: March 18, 2011, 07:52:13 AM »

OK, so you do 4 exchanges a day. Are you doing  1.5 morning- 2.5 dinner- 1.5 tea and 2.5 night ? are you weighing the bags after each exchange, you must be taking more off than you think. Have you been told about the renal diet,what you can eat and what you should not, how to cut your fluid in take down if you are retaining it. I know this is a crappy disease and I know it is not nice to have some thing dangling from your body, the whole thing is sh*t but it is going to keep you alive. You just have to give it time and it does take time to get sorted out. Once sorted you will go through the day alright. Doing manual bags is a good option, it is gentler on the system. The fluid build up will make you feel lousy it is all the toxins in the body, hope your kt test goes alright. Thinking about you.
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billybags
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« Reply #7 on: March 19, 2011, 09:17:37 AM »

ladybag how did you go on at the clinic?
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Ladybag
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« Reply #8 on: March 19, 2011, 10:19:01 PM »

They will be scheduling the kt/v next week so won't know anything till than. Today I just slept and only got up to do my transfers. Tomorrow same thing. I am not even sure why I am awake now. Now food is starting to not sound good I would rather drink ice cold water, I know I need to eat but I just don't have much energy to do anything. I will let you all know how the test goes. Also my uncle comes back for more testing April 5. Fingers crossed but I am not going to get my hopes up since I have had so many denied. I just can't keep getting my hopes up and getting shot down. Don't get me wrong I wouldn't want anyone who wasn't healthy enough to do it but it is just hard. Well I need to go lay down. Night all.
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IGA Nephropahty Dec. 2007
ESRD May 2010
PD Cathiter May 2010
Dialysis June 2010
Kidney Transplant April 13, 2011
rsudock
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will of the healthy makes up the fate of the sick.

« Reply #9 on: March 31, 2011, 11:31:15 PM »

ladybag thinking of you....
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Born with autosomal recessive polycystic kidney disease
1995 - AV Fistula placed
Dec 7, 1999 cadaver transplant saved me from childhood dialysis!
10 transplant years = spleenectomy, gall bladder removed, liver biopsy, bone marrow aspiration.
July 27, 2010 Started dialysis for the first time ever.
June 21, 2011 2nd kidney nonrelated living donor
September 2013 Liver Cancer tumor.
October 2013 Ablation of liver tumor.
Now scans every 3 months to watch for new tumors.
Now Status 7 on the wait list for a liver.
How about another decade of solid health?
paul.karen
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« Reply #10 on: April 01, 2011, 09:25:35 AM »

From what you are saying it sounds like your Hemoglobin and or Iron levels may be low.
_Please check them and if your not sure what to look at ask your neph what your HG and iron lvls are.  Make sure they are in range of what they should be.
Sadly we need to look out for ourselves because sometimes docs may miss what to them is a small issue but for us cold be a large issue.

Try to get on the machine if you can.  It would make work much easier to deal with and you will get to know exactly how much UF you are pulling.  I stopped using yellow bags and only use green bags.  My UF is around 1600/1700 a night. (but we are all different)

Wishing the best for you.  Hopefully they will get your KT/V soon.
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Curiosity killed the cat
Satisfaction brought it back

Operation for PD placement 7-14-09
Training for cycler 7-28-09

Started home dialysis using Baxter homechoice
8-7-09
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