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| | |-+  Tired, in mega pain and dizzy spells .... help?
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Author Topic: Tired, in mega pain and dizzy spells .... help?  (Read 2337 times)
nanadar
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« on: June 11, 2012, 09:41:57 AM »

I only started  P dialysis 2 weeks ago so am a total newbie. I am in mega pain some days... stomach cramps and neck and shoulder pain. I also am hugely short of breath... can't walk from one room to the next without gasping for breath.... sometimes just sitting I start to gasp. I am constantly dizzy and almost faint just standing at the sink. I am still vomiting daily despite anti nausea pills. Please tell me there is relief in site and I will start feeling better soon.
Hubby says it will go away soon.  Any sugestions for pain relief ?
Any one else experience this stuff at the begining ?
 :banghead;
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jbeany
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« Reply #1 on: June 11, 2012, 10:44:27 AM »

 :grouphug;

Never did PD, so I'm no help - but I hope one of our PD people has some helpful suggestions for you soon!

 :grouphug; :grouphug; :grouphug;
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"Asbestos Gelos"  (As-bes-tos yay-lohs) Greek. Literally, "fireproof laughter".  A term used by Homer for invincible laughter in the face of death and mortality.

okarol
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« Reply #2 on: June 11, 2012, 11:11:00 AM »

Oh man that's awful. I have no PD experience but if that were my daughter's symptoms I would call the clinic or doctor and get some answers. it doesn't sound like it is working. When did you last have labs? I'd get labs done to see if your numbers, and also be seen to find out if you have fluid or a leak. Please call today.  :cuddle;
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
Now needs a new kidney, 7 yr transplant lost due to rejection.
She started PD Sept. 2013
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Jenna is an artist, she loves music, is a fan of ComicCon, and has been writing stories since she was little.
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
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JLM
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« Reply #3 on: June 11, 2012, 11:21:56 AM »

First of all, call your nurse.  Do not be concerned that you are bothering them.  They are there to HELP you.  Second, your shoulder pain could be from not flushing the line before you fill.  THAT will cause mega pain in your shoulder/neck.  Never forget the FLUSH, there is air in the plastic tubing and when it get into your body cavity it HURTS.  AGAIN if you have problems, call your nurse, don't suffer......
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I'm just where God wants me to be, not one step ahead nor one step behind.
Grumpy-1
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« Reply #4 on: June 11, 2012, 12:02:48 PM »

Repeat JLM's reply - call a nurse NOW.  You should have a 24hr phone number.  Call it.  Grumpy
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Make me the person my dog thinks I am
nanadar
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« Reply #5 on: June 11, 2012, 03:37:35 PM »

I called the nurse and I have an appointment to go in tomorrow morning. She also suggested that we might not be heating the fluid up enough so my last batch was slightly warmer and so far minimal pain. Will keep you p[osted as to tomorrow's outcome.
nanadar
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adairpete
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« Reply #6 on: June 12, 2012, 07:29:27 PM »

I'm on pd and maybe can help. Definitely heat the bags-it hurts if the solution is too warm or cold. The shoulder pain could be from air bubbles when you fill. It happens from time to time. Its referred pain from the diaphragm-the nerves are connected. The cramping for me went away as my body adjusted to the fluid volume constantly in there. Took maybe 2 weeks for it to stop cramping regularly. The shortness of breath sounds like fluid overload. Might try a higher percentage bag to pull more off.  Has your weight been creeping up? Took a little tweaking for me when switching to pd to hit my dry weight. Hope this helps and hope  you get some help tomorrow!
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Diagnosis: distal renal tubular acidosis with medullary sponge kidney
3/4/2010 started hemo via sub-clavian catheter
6/15/2010 listed for kidney (on hold)
8/2/2010 started CAPD
3/20/12 on active wait list for kidney
nanadar
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« Reply #7 on: June 14, 2012, 09:34:08 PM »

Went to see my PD nurse, she sent me by ambulance to the ER. Spent 17 grueling hours in there, no food, only water and the most incompentent bunch of boobs I've ever come across. They had no idea as to how to do PD. Hubby had to go to their supply closet and get the supplies and heat the fluid for me cause they were clueless. hours of prodding, and poking, and chest xrays, and altra sounds and still no closer to a solution. "perhaps it's your Blood Pressure" stop taking your meds and we'll see if that rules it out.
So I've stopped and the pain / gasping / fainting hasn't slacked off one bit. love our healthcare system.... NOT !!!
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billybags
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« Reply #8 on: June 15, 2012, 03:50:13 AM »

That is so bad sending you to ER, doesn't  your unit know what they are doing. it sounds like it is fluid over load Your experience of PD is not good and it should not be like this. Have they done a Scan to see if the catheter is in the right position.Are you draining OK?  Do you have a temperature, it could be an infection? You might be new to this but you have got to stand up and ask questions. Lots of questions. PD is a doddle, well sort of, so don't be put off. Hope things are settling down for you to-day.
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komomai
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« Reply #9 on: June 16, 2012, 06:45:51 AM »

Agree call your PD nurse.  Yes, always warm your bags I bought PD warmers from Stickman Industries, I have both the softside for travel and the hardcase to use at home.

http://www.kidneystuff.com/index2.html

When I first started PD I also retained a lot of fluid, my weight shot up and my blood pressure went up.  I ended up in the hospital ICU with pneumonia and heart problems.  They hooked me up to do hemodialysis for a week to take out all the excess water.  I've now been doing PD for a year and half and everything is okay as much as it can be.  Hang in there. :boxing;
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KAF454
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It is what it is today.

« Reply #10 on: June 16, 2012, 06:30:00 PM »

Been there recently with chest, neck & shoulder pains. My PD nurse warned me about that in training but I had no idea it would be so intense. And since it was on my left side I did the ER thing, which led to 30 hours in-patient and seemingly never-ending tests to find out it was essentially a gas pain.

On the bright side I found out my 58 year old heart is healthy and strong.

The cardiologist hinted I'm getting older and could stand to lose some weight. He can hide behind a fence post and I.............. cannot.
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PD catheter inserted 11/2011
CCPD begun 12/2011
Activated on transplant list 01/27/2012
PD efficacy tanked 12/2012. CVC inserted for hemo.
Elected to stay on hemo 01/2013. (10.5 hours per week instead of 8 hours every night? No contest!)

Today I will not worry unless the animals start lining up 2 by 2.
nanadar
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« Reply #11 on: June 25, 2012, 05:28:22 PM »

Nurses and doctors still cannot figure out what is going wrong. I'm still in pain most days but occasionally get a few hours off from it. They've checked for everything including Gaul Bladder problems. I've now started to retain water so they have changed my fluid concentrations and are trying that for a few days. I have an appointment with my Neuphrologiet on Tues. so I'll see what he says.  Good news... the vomiting has stopped. Yeah !
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JLM
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« Reply #12 on: June 25, 2012, 11:25:05 PM »

Mayhaps they can add a little brandy to your solution and then, at least, you won't care.  Just a little humor, ya, I know, very little.  Hoping you will come to resolve the problems you are having.
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I'm just where God wants me to be, not one step ahead nor one step behind.
nanadar
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« Reply #13 on: July 19, 2012, 10:05:27 AM »

Lots of tests completed and I guess that i am headed for Hemo. my body just doesn't like PD I guess. Putting a line in within the next 2 weeks. I am NOT looking forward to this. :(
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gothiclovemonkey
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« Reply #14 on: July 19, 2012, 06:00:36 PM »

 :cuddle;
I was there not too long ago...
The only thing they could come up with was either that my body is rejecting the tubing, im allergic, or im just too fat for pd... i was in the hospital for 5 days fighting an infection.
The first time id tried, was much worse, i went a month with 54 lbs of fluid on me, because my dr wouldnt listen to me...
My body doesnt dig pd either!

 :cuddle; :cuddle;
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