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Stacy Without An E
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« on: February 10, 2012, 10:37:21 AM »

I am about to begin my eighth year of Dialysis, and I must admit, my body has started to cave in on itself.  For the last few months I am incredibly weak, constantly dizzy, and I'm having increasing difficulty making it through the workday.

I've asked Doctor Goddess, my nephorologist about this, but since my labs are always within normal parameters, she recommends a I see primary physician.  I make an appointment, and the doctor asks why I'm not seeing my nephrologist and won't accept me as a patient.  I'm drowning in the Medical Circle of Hell, and yet, I continue to get worse.  I'm at the verge where I'm considering quitting my job, simply because I can't complete my tasks to the best of my ability.

Does anyone know what could be happening to me?  Is my body just giving in from year after year of endless Dialysis?

Any help or guidance is greatly appreciated.
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Stacy Without An E

1st Kidney Transplant: May 1983
2nd Kidney Transplant: January 1996
3rd Kidney Transplant: Any day now.

The Adventures of Stacy Without An E
stacywithoutane.blogspot.com

Dialysis.  Two needles.  One machine.  No compassion.
billybags
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« Reply #1 on: February 10, 2012, 10:48:32 AM »

Stacy, that is a hard one. I think dialysis must or does take a toll on your body after a while. We have the same problem with our GP he is scared of doing or giving my husband something that might up set our neph. He seems to throw him back to the neph at every which way.We are very lucky that our neph is a wonderful person and he deals with us. What kind of work do you do? could you go part time? Is your boss understanding? I really do feel for you, going to work with all this going on can not be easy.
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Tracy
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« Reply #2 on: February 10, 2012, 10:52:30 AM »

Hi,
I've only been on D for 1 1/2 years so far and I haven't been the best at watching my fluids.  So, I decided I'd better get to watching my fluids and have done very well for one day.  That one day, I feel awful.  I work full time and do D after work, but I was trying to only drink 16 oz during the work day and 16 oz after work and at night.  I felt weak, out of it, I couldn't function properly at work and just wanted to sleep.  I felt awful.  I thought, wow, it is almost a good thing I haven't felt this way the whole time or I would think I would need to quit too.  So, I just wonder if you might be a little dehydrated (all that just to say that).  Just a thought.

Good Luck!  Tracy :)
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9/1990 Found out I have Type 1 Diabetes
7/2008 Told I have GFR 30
2/2009 Kidney/Pancreas Transplant
5 days later, both removed due to massive rejection
Back on List
2/26/10 Fistula placed
3/11/10 Told GFR 9
5/14/10 Started in center Hemo
Waiting on another Transplant
Stacy Without An E
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« Reply #3 on: February 10, 2012, 11:15:53 AM »

You bring up a good point Tracy, but for quite some time I've had trouble getting all the available fluid off my body.  I wake up the next morning and my eyes are still swollen.  We've been having difficulty at Dialysis because I start to cramp even though all the fluid isn't removed.  Its really annoying actually; I look horrible all the time.
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Stacy Without An E

1st Kidney Transplant: May 1983
2nd Kidney Transplant: January 1996
3rd Kidney Transplant: Any day now.

The Adventures of Stacy Without An E
stacywithoutane.blogspot.com

Dialysis.  Two needles.  One machine.  No compassion.
monrein
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« Reply #4 on: February 10, 2012, 11:39:56 AM »

Stacey, is nocturnal a possibility for you?  I just wonder whether things would be better controlled (hidden fluid for example) and whether you'd feel better with longer, slower dialysis?  Five years is the longest I've ever done at a stretch and I was doing 5 hours three times a week...but 5 times a week would have left me feeling better.  It takes its toll, no doubt about it and the weakness and fatigue can be debilitating.   :grouphug;
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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
Second trx doing great so far...all lab values in normal ranges
Brightsky69
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« Reply #5 on: February 10, 2012, 11:42:38 AM »

Stacy - I feel for you. I had a rough time on dialysis my 2nd go around. I was bad when it came to phosphorus. I loved my cheese.  :urcrazy;
 So I am sure that didn't help. Plus I was on PD and I don't think I was getting the right amount of dialysis. They were forever messing with my perscription.
Thankfully I don't have that problem with my primary care doc. If I go to her with a problem....I couldn't sleep while on dialysis. She had no problem giving me something to help me sleep. Plus she always kept an eye on me for depression while I was on dialysis. and she always takes the time to listen.

I wish I could say something to help. I know it's hard to quit working.
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Transplant June 11, 1991 (1st time) my mom's kidney
Received my 2nd kidney transplant Oct. 19th 2010.
jeannea
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« Reply #6 on: February 10, 2012, 11:55:47 AM »

I suspect 8 years of dialysis is just catching up with you. It sucks. Can you take a few days off and rest and see if that helps? That may help you make a decision. But it's not shameful to not be able to work full time after this many years. Personally I'm impressed. Take care of yourself. No one else will.
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amanda100wilson
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« Reply #7 on: February 10, 2012, 02:17:54 PM »

Surely your nephrologist should be seeing you once a month?  I thought that  part of Medicare bundling was for you to see your nephrologist once a month?  Maybe someone else can advise?  Sounds to me like your neph. Is trying to shirk their responsibilities.  How about doing NxStage nocturnal?  I"m doing short daily on NxStage and feel like a new person so if you could get on nocturnal, I am sure that you would too.
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ESRD 22 years
  -PD for 18 months
  -Transplant 10 years
  -PD for 8 years
  -NxStage since October 2011
Healthy people may look upon me as weak because of my illness, but my illness has given me strength that they can't begin to imagine.

Always look on the bright side of life...
lmunchkin
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« Reply #8 on: February 10, 2012, 03:02:59 PM »

That is exactly what I was going to recommend, Amanda!  I think if you could do the short daily or extended on NxStage you would feel alot better.  My J has been dialysising a little over 7 years and he worked up till last year.  It just wore him down with the stress of the job and all.  I was proud that he was able to work that long!

Stacy, I would definately look into NxStage. I come home and D. him in the evenings after work, and it really seems to be doing a really good job for us both!

So sorry you are so wore out. But as someone posted above, take a couple days off and rest, see if giving work up will help!
Keep us posted ok?

God Bless,
lmunchkin
 :kickstart;
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11/2004 Hubby diag. ESRD, Diabeties, Vascular Disease & High BP
12/2004 to 6/2009 Home PD
6/2009 Peritonitis , PD Cath removed
7/2009 Hemo Dialysis In-Center
2/2010 BKA rt leg & lt foot (all toes) amputated
6/2010 to present.  NxStage at home
ToddB0130
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« Reply #9 on: February 10, 2012, 06:59:35 PM »

So sorry that you're not feeling well.  Eight years is a long time and as others have recommended,  maybe a change in your modality might help.  The good news is that your labs are good.  You just need to figure out why your feelling ill overall.  Do you have other doctors on your team besides your nephro and GP ??  Maybe seeing one of them (like a cardiologist or pulmonologist, etc) and having other things checked out (heart, lungs, etc) will help you a bit and put your mind at ease.  I am SURE it is frustrating to have doctors saying 'your labs all say you're doing well' when YOU know how you are feeling.   Don't let them stop you from exploring whatever options you need to in order to get the answers you need to feel better.  Good luck.
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No day but today
YLGuy
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« Reply #10 on: February 10, 2012, 07:17:00 PM »

With you saying that you are having trouble getting the fluid off I immediately wonder what your sodium intake is?  Too much sodium can make the cells swell with fluid and I believe make it much harder for it to be pulled off during dialysis.  Just a guess.  I hope you find the answer.
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Traveller1947
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« Reply #11 on: February 11, 2012, 02:55:11 AM »

I'm so sorry to hear that this is happening to you, Stacy.  Your current PCP is useless to you if he won't even see you--get a new one right away.  That's the necessary first step to figuring out what's going on.  If nothing else,  He or she can direct you to the specialist you may need to see.  Why not take some vacation time or a leave of absence, if that's available to you, until you find out more about what's causing all this?  Then if it's fixable, you'll still have your job.  As for Dr. Goddess, she was right to refer to back to your primary care physician--nephrologists know kidneys, but have forgotten much of what they learned about everything else, to paraphrase my own nephrologist.  All the best to you, Stacy.  Let us know how things progress for you.
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woodsman
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« Reply #12 on: February 11, 2012, 12:51:39 PM »

I say STOP working and take care of YOU. I only worked for a few months and called it quits because i know doing both would just wear me out and then i'd be even more miserable.. Take it easy dude and recover, relax..............
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del
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« Reply #13 on: February 11, 2012, 12:52:20 PM »

Stacy I think you really need to get things checked out to see why this is happening.  Hubby has been on dialysis for 15 1/2 years and he does not feel like this.  He has been doing nocturnal at home for over 5 years now.  Is it possible for you to do nocturnal in center or at home.  It is much gentler on your body.
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tbarrett2533
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« Reply #14 on: February 16, 2012, 07:07:59 PM »

I say STOP working and take care of YOU. I only worked for a few months and called it quits because i know doing both would just wear me out and then i'd be even more miserable.. Take it easy dude and recover, relax..............

AMEN!!!

I quit work and I was a workaholic!! worked like a CRAZY person and was so sick the last 8 months and still did it, but I just could not do it anymore so I said the hell with it and quit and used that time to get my SSD which turned out to be a good amount b/c I did in fact work my ass off for a ton of years so get out of there Stacy!!!!! and take care of you girl!!!!
come on over here and watch Dr. Phil and eat Bon-Bons  :lol;
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CKD since: 1981
9.22.10: Catheter surgery
9.23.10: Started in center Hemo
10.06.10: Fistula surgery
12.02.10: Started using right upper arm Fistula (15 gauge)
12.30.10: Catheter Removed
07.01.11: Laparoscopic CAPD Catheter insertion
07.29.11: Started CAPD, 2000ml, 4 exchanges (Baxter)
08.15.11: Started filling with 1500ml (instead of 2000ml), 4 exchanges
08.21.11: Back to 2000ml fills, 4 exchanges (3-2.5% & 1-1.5%)
10.12.11: 2000ml fills, 4 exchanges (3 1.5% & 1-2.5% overnight)
11.08.11: Transplant list

Dialysis works for me, I don't work for dialysis!
It's my body, my health!!
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« Reply #15 on: February 17, 2012, 01:16:22 AM »

Dear Stacy without an e, I hope you start feeling better soon, and am amazed you are still working. However the cramping during D while fluid is still there could be caused by needing to increase your sodium-profiling. I had that problem for a while, and after increasing the 'prescribed natrium' on the dialysate menu with just one point (138 to139) I can get every single drop off without a single cramp.

Goodluck 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
       still on waitinglist, still ok I think
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« Reply #16 on: February 17, 2012, 10:11:01 AM »

Stacy, My nephrologist insists that I also have a GP for routine things.  Maybe you need to find a new GP but there are not alot of GP's that accept Medicare so thus the vicious circle of Medical Hell.  I want you to look for a clinic that does Nocturnal.  If you have 4 liters to take off that is one an hour where you are at and 500 an hour at Nocturnal.  It is a slower and gentler method.  You will feel better and your days are free.  Is your Radio program at night? 

Rerun
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MomoMcSleepy
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« Reply #17 on: March 30, 2012, 12:08:19 PM »

have your nephrologist refer you to your gp, or otherwise write a note?  My PCP and neph are with the same health system.  My PCP is awesome and when I emailed neph asking if I should switch to a different bp med because I thought atenolol was masking hypoglycemia symptoms, he messaged back to talk with PCP.  I forwarded the entire communication, and she is having me monitor my glucose with glucometer (being sent out shortly).  She is very good, but part of it is if one doc says I should see urology or something, I try to get an email or referral so I don't have to play silly games.  You deserve to feel better, and I hope you do very soon!

But, get that stuff in Writing.  And if the gp refuses, get THAT in writing.  If you still don't get help, write a letter and cc department heads.  I did that once in an EXTREME situation where a woman basically forgot to schedule someone to perform my gallbladder operation (it was supposed to happen with my surgery on my ureter).  I was informed of this the Friday before my Monday surgery.  I had already taken time off from work, etc.  The woman said, "you'll have to have the surgery next year,"and I thought to myself "oh no, I won't.". Probably the closest I've ever come to wanting to punch someone's face in, but I digress.  I wrote that email, ready to just about stroke out, and it got resolved within about two hours.  My urologist found a pinch-hitter for me from General surgery.

such measures are only to be taken in dire emergencies, though, or people will think you're difficult, so weigh your pros and cons, and I hope you feel better, Stacy.
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33 years old, first dx w/  chronic renal insufficiency at  28, pre-dialysis

born with persistent cloaca--have you heard of it?  Probably not, that's ok.

lots of surgeries, solitary left kidney (congenital)

chronic uti's/pyelonephritis

AV fistula May 2012
Kidney Transplant from my husband Jan. 16, 2013
Howard the Duck
Stacy Without An E
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« Reply #18 on: March 30, 2012, 01:46:40 PM »

Thanks everybody for your suggestions.  I went to my new primary physician & she was great.  Did an entire blood workup, but when I went for the follow-up, she couldn't find anything wrong with my blood levels.  It turns out part of the issue was the new guidelines for EPO from the FDA.  I checked my hemoglobin and it was ridiculously low.  I brought this up to the nurse and they finall prescribed iron along with the EPO.

I'm feeling a little better, but now I'm angry that NOBODY TOLD ME.  I brought this issue up to doctors and nurses and no one told me the HB was low.  "No, your blood work looks fine."  "No, everything looks great."  I'm really starting to doubt the competency of the people who work there. 

I had sit down with the social worker about CA state disability and SSDI, so at least I have that information available if I need it.  I did the math and I don't think I could cover all my expenses (rent, car payment, insurance etc.) on disability.

So, the frantic, fatigued, ferocious fight continues.
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Stacy Without An E

1st Kidney Transplant: May 1983
2nd Kidney Transplant: January 1996
3rd Kidney Transplant: Any day now.

The Adventures of Stacy Without An E
stacywithoutane.blogspot.com

Dialysis.  Two needles.  One machine.  No compassion.
SugarBear
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« Reply #19 on: March 30, 2012, 02:54:05 PM »

Unfortunately this is a common problem among dialysis patients.  The last numbers I read about the mortality rate is between 70 to 80% for a patient at the ten year mark.  This is why transplantation is always recommend.  This doesn't mean you will die after 10 years of dialysis, just that the chance of death is substantial.  I believe this includes hemo and PD, I don't believe it includes home hemo or nocturnal.
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CKD due to FSGS 1999
Drop from Stage 4 to Stage 2 ESRD 2000
ESRD 2005
Started Dialysis September 13, 2006
Short Daily Home Hemo March 2009
Back to In Center Hemo August 2009 (Too Many Hours)
Nocturnal Home Hemo May 2010
Received Transplant March 1, 2012
kitkatz
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« Reply #20 on: April 01, 2012, 10:22:23 PM »

I found doing nocturnal took away most of the icky dialysis feelings I had after ten years doing hemodialysis.  The dialysis cloud left me and my sense of humor came back.
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Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

Remember your present situation is not your final destination.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
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« Reply #21 on: April 02, 2012, 08:46:39 PM »

Stacy, My nephrologist insists that I also have a GP for routine things.  Maybe you need to find a new GP but there are not alot of GP's that accept Medicare so thus the vicious circle of Medical Hell.  I want you to look for a clinic that does Nocturnal.  If you have 4 liters to take off that is one an hour where you are at and 500 an hour at Nocturnal.  It is a slower and gentler method.  You will feel better and your days are free.  Is your Radio program at night? 

Rerun

Say hello to Dr. "O" for me Rerun. What a great doc. I always enjoy my sessions with him. He truly understands dialysis and how to help folks feel better. What a great testimony in a day where a lot of nephologists just want to make a quick buck. He is a strong advocate for nocturnal in-center and  home dialysis. We need more docs out there like him.
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Peter Laird, MD
www.hemodoc.info
Diagnosed with IgA nephropathy 1998
Incenter Dialysis starting 2-1-2007
Self Care in Center from 4-15-2008 to 6-2-2009
Started  Home Care with NxStage 6-2-2009 (Qb 370, FF 45%, 40L)

All clinical and treatment related issues discussed on this forum are for informational purposes only.  You must always secure your own medical teams approval for all treatment options before applying any discussions on this site to your own circumstances.
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« Reply #22 on: April 02, 2012, 11:45:01 PM »

We get a copy of Jenna's labs faxed to us each month. She has become familiar with all the levels and can compare how she's doing.
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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
Searching for a living donor using social media, friends, family.
Her story ---> https://www.facebook.com/WantedKidneyDonor
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 -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
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« Reply #23 on: April 03, 2012, 11:51:11 AM »

Thanks everybody for your suggestions.  I went to my new primary physician & she was great.  Did an entire blood workup, but when I went for the follow-up, she couldn't find anything wrong with my blood levels.  It turns out part of the issue was the new guidelines for EPO from the FDA.  I checked my hemoglobin and it was ridiculously low.  I brought this up to the nurse and they finall prescribed iron along with the EPO.

I'm feeling a little better, but now I'm angry that NOBODY TOLD ME.  I brought this issue up to doctors and nurses and no one told me the HB was low.  "No, your blood work looks fine."  "No, everything looks great."  I'm really starting to doubt the competency of the people who work there. 

 :stressed;
make those jerks give you a copy of those results!  I can't stand when they do 't give me a copy.  I wish I could get into the hospital system and nikola at al, of my stuff myself!  Argh. 

glad you're feeling better.  What's the deal with that?  Why do 't they keel on top of the EPO stuff better?  I keep asking about it myself because I keel reading scary stuff...

I had sit down with the social worker about CA state disability and SSDI, so at least I have that information available if I need it.  I did the math and I don't think I could cover all my expenses (rent, car payment, insurance etc.) on disability.

So, the frantic, fatigued, ferocious fight continues.

stressed;
make those jerks give you a copy of those results!  I can't stand when they do 't give me a copy.  I wish I could get into the hospital system and nikola at al, of my stuff myself!  Argh. 

glad you're feeling better.  What's the deal with that?  Why do 't they keel on top of the EPO stuff better?  I keep asking about it myself because I keel reading scary stuff...
Logged

33 years old, first dx w/  chronic renal insufficiency at  28, pre-dialysis

born with persistent cloaca--have you heard of it?  Probably not, that's ok.

lots of surgeries, solitary left kidney (congenital)

chronic uti's/pyelonephritis

AV fistula May 2012
Kidney Transplant from my husband Jan. 16, 2013
Howard the Duck
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