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Author Topic: Head Games  (Read 15147 times)
mamagemini
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It's all me.

« Reply #25 on: April 30, 2012, 09:09:04 AM »

I did the blood work this morning. Yesterday was rough but today just tired. How are you doing now?
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FSGS/Nephrotic syndrome 2005
AV Fistula placed right arm inside elbow 4/2012
Started HD 9/7/2012
Started PD Oct 2015
Parathyroid removed 6/2019
Cellulitis in Fistula 8/2019
RT arm Fistula removed 9/2019
Gerald Lively
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« Reply #26 on: April 30, 2012, 02:10:01 PM »

In the Fall of 2010 I was wasted.  I wrote it off to getting fat and out of shape.  It occurred to me to get back in shape, so I put in a pario by laying down 1200 foot square tiles over compacted sand.  Bought 55 yards of prescription dirt, graded all of it and helped put in a retaining wall.  You should know, and I am quite certain that this isn't unexpected, I bitched the entire time.

Still, my protruding upper abdomen would not get back into my "body-beautiful" shape.  I starved myself and it still wouldn't go back in.  By January 2011, my butt was dragging, so was the rest of me.  The Doctor, a North Korean, said I was constipated and prescribe some sort of colon-blast.  Revenge, I think.  Well, that cleaned out the poop-shoot but it did nothing for fatigue.

Test after test for high calcium. Five months later at the end of May, I had a CT scan and for the first time someone said bad word, "cancer".  At that time, I was barely on my feet, could not understand a lot that was going on around me, so my Oncologist put me in the hospital.  Once there, they discovered renal failure. My craetinine was at 17, my hemogloblin was way down (I don't recall the numbers).   I became alert six days later.  After to controversy I refused to take Procrit and left the hospital in protest.  My Oncologist came to the rescue with a hemo transfusion, but that didn't make me feel better.

That was about a year ago and my hemo is above 12, my creatinine is 2.1 and I still can't get moving.  I considered exercise but I lasted just a few minutes on a pedal-your-butt on a pretend exercise bike.  My blood pressure seems to get hinky-low when I push myself.  Having some experience with syncope, I thought better about exercise.

So, here I am, a chair potato on pain pills forknees and ankles, remnents from the old days of weight training.  So, Moosy-Mommie, if you feel wiped out so do a lot of people.  If you want me to wipe your furrowed brows with a nice damp cloth, I will do so.

gl
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Hodgkin's Lymphoma - 1993
Prostate Cancer - 1994
Gall Bladder - 1995
Prostate Cancer return - 2000
Radiated Prostate 
Cataract Surgery 2010
Hodgkin's Lymphoma return - 2011 - Chemo
Renal Failure - 2011
Renal Function returned after eight months of dialysis - 2012
Hodgkin's Lymphoma returned 2012 - Lifetime Chemo


Human hopes and human creeds
have their roots in human needs.

                          Eugene Fitch Ware
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« Reply #27 on: April 30, 2012, 03:12:38 PM »

LOL GL, I think I may need a psychiatrist more than I need a damp cloth!

If your hemo is above 12 (indicating that you are not anemic) and your creatinine isn't at a jaw-droppingly high level, what do you think is making you so tired?  I know you've been through the wars with dialysis and cancer treatments, so do you think that your current fatigue is due to those past experiences?  I understand that it may be unrealistic to expect your body and energy level to be where it was 5 years ago, but for you to not be able to indulge in limited exercise really concerns me.

I personally find that exercise makes me feel better in just about every way.  If pedalling on an exercise bike doesn't work for you, then I'd suggest not doing that, but are you able to walk, say, a mile?  Do you think that it might be worth devising a sort of rehabilitative exercise plan for yourself?  You've been through so much, and I hate to think that some modicum of recovery isn't possible for you.

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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
Gerald Lively
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« Reply #28 on: April 30, 2012, 04:43:27 PM »

Thursday I will go in for the beginning of radiation therapy.  The first thing they told me last week was, "This is going to make you feel tired."  Well, hot-damn!

I have been sitting on my ass since January 2011.  I'm 73 going on 100.  It may be a head trip that makes me feel fatigued, it could be the cancer that is still there, it could all be fakery because my wife enjoys taking care of me.  (I used to do the cooking and housework.) 

Logged

Hodgkin's Lymphoma - 1993
Prostate Cancer - 1994
Gall Bladder - 1995
Prostate Cancer return - 2000
Radiated Prostate 
Cataract Surgery 2010
Hodgkin's Lymphoma return - 2011 - Chemo
Renal Failure - 2011
Renal Function returned after eight months of dialysis - 2012
Hodgkin's Lymphoma returned 2012 - Lifetime Chemo


Human hopes and human creeds
have their roots in human needs.

                          Eugene Fitch Ware
MooseMom
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« Reply #29 on: April 30, 2012, 10:34:30 PM »

Thursday I will go in for the beginning of radiation therapy.  The first thing they told me last week was, "This is going to make you feel tired."  Well, hot-damn!

I have been sitting on my ass since January 2011.  I'm 73 going on 100.  It may be a head trip that makes me feel fatigued, it could be the cancer that is still there, it could all be fakery because my wife enjoys taking care of me.  (I used to do the cooking and housework.)

Hm....well, radiation therapy isn't going to revive you, now, will it? ::)  I know you probably already told us, and my apologies for asking again, but how long with your radiation therapy last?

I hope that once you've done with that, you won't be such a lazy toad.  LOL!  I hope you will get better really soon.  Get back to cooking and cleaning that house!  Yippee!
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
Gerald Lively
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« Reply #30 on: April 30, 2012, 10:38:15 PM »

Five weeks.
Logged

Hodgkin's Lymphoma - 1993
Prostate Cancer - 1994
Gall Bladder - 1995
Prostate Cancer return - 2000
Radiated Prostate 
Cataract Surgery 2010
Hodgkin's Lymphoma return - 2011 - Chemo
Renal Failure - 2011
Renal Function returned after eight months of dialysis - 2012
Hodgkin's Lymphoma returned 2012 - Lifetime Chemo


Human hopes and human creeds
have their roots in human needs.

                          Eugene Fitch Ware
MooseMom
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Posts: 11325


« Reply #31 on: April 30, 2012, 10:49:37 PM »

Five weeks.

OK, you get five weeks of more ass-sitting time (plus an extra just because), but after that, no more. :P
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
Gerald Lively
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« Reply #32 on: May 01, 2012, 09:52:41 AM »

Yes Dear!
Logged

Hodgkin's Lymphoma - 1993
Prostate Cancer - 1994
Gall Bladder - 1995
Prostate Cancer return - 2000
Radiated Prostate 
Cataract Surgery 2010
Hodgkin's Lymphoma return - 2011 - Chemo
Renal Failure - 2011
Renal Function returned after eight months of dialysis - 2012
Hodgkin's Lymphoma returned 2012 - Lifetime Chemo


Human hopes and human creeds
have their roots in human needs.

                          Eugene Fitch Ware
natnnnat
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« Reply #33 on: May 01, 2012, 10:55:28 PM »

You have been told, Mr Lively.  Step to it sir.  No doubt Ms Mum will mark the 6 week timeline in her diary and be back on your case at the end of it.
 :popcorn;
Looking forward to that.
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Natalya – Sydney, Australia
wife of Gregory, who is the kidney patient: 
1986: kidney failure at 19 years old, cause unknown
PD for a year, in-centre haemo for 4 years
Transplant 1 lasted 21 years (Lucy: 1991 - 2012), failed due to Transplant glomerulopathy
5 weeks Haemo 2012
Transplant 2 (Maggie) installed Feb 13, 2013, returned to work June 17, 2013 average crea was 130, now is 140.
Infections in June / July, hospital 1-4 Aug for infections.

Over the years:  skin cancer; thyroidectomy, pneumonia; CMV; BK; 14 surgeries
Generally glossy and happy.

2009 - 2013 PhD research student : How people make sense of renal failure in online discussion boards
Submitted February 2013 :: Graduated Sep 2013.   http://godbold.name/experiencingdialysis/
Heartfelt thanks to IHD, KK and ADB for your generosity and support.
MooseMom
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« Reply #34 on: May 02, 2012, 12:12:52 AM »

No doubt Ms Mum will mark the 6 week timeline in her diary and be back on your case at the end of it.


How did you know!!!!????? :o :o
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
MomoMcSleepy
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My son Roddy McSleepy at 6 months! sry pic sidewz

« Reply #35 on: May 02, 2012, 07:00:25 AM »

Every time I see this post, that song "Head Games" gets stuck in my head and I start singing it at my desk, fyi.

my hemoglobin got down  to 10.2 but went back up to 11. A resident had printed my labs for me, and when I saw my hemoglobin, I started taking my iron pills when I saw it was going down.  No one mentioned the low hemoglobin to me,of course, but my nephrologist hadn't ordered the test, so he probably just  didn't see it.  I feel a bit better now, but I do have the same tiredness in the legs.  And I was panting yesterday after just bringing dinner to the family room from the kitchen (there are stairs involved, but only half a flight).  I have attributed some of this to my acidosis.  Sometimes I  take my sodium bicarb late (late on the dose), and my body seems very sensitive about it.  I don't get that with other mess, but if I am late on the bicarb, watch out!
Logged

35 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
natnnnat
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« Reply #36 on: May 02, 2012, 07:30:18 PM »

Turns out there are three units with which one can measure haemoglobin, see below.  As people here have been talking about trying to get over 12, I am guessing you are talking g/dL.  Gregory's was 94 g/L late last year.  In g/L, the desired range which appears next to his blood results (Ref Range) is 130-180.  Last  month it was 139 g/L, so he's back in the range.  This is good, as it explains why he was taking aranesp.  He is still supposed to take it now, however... a matter for which I await the results of yesterdays tests before making any other comment.

From wikipedia, not much of a source but better then nothing? The ranges are expressed as:
# Men: 13.8 to 18.0 g/dL (138 to 182 g/L, or 8.56 to 11.3 mmol/L)
# Women: 12.1 to 15.1 g/dL (121 to 151 g/L, or 7.51 to 9.37 mmol/L)
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Natalya – Sydney, Australia
wife of Gregory, who is the kidney patient: 
1986: kidney failure at 19 years old, cause unknown
PD for a year, in-centre haemo for 4 years
Transplant 1 lasted 21 years (Lucy: 1991 - 2012), failed due to Transplant glomerulopathy
5 weeks Haemo 2012
Transplant 2 (Maggie) installed Feb 13, 2013, returned to work June 17, 2013 average crea was 130, now is 140.
Infections in June / July, hospital 1-4 Aug for infections.

Over the years:  skin cancer; thyroidectomy, pneumonia; CMV; BK; 14 surgeries
Generally glossy and happy.

2009 - 2013 PhD research student : How people make sense of renal failure in online discussion boards
Submitted February 2013 :: Graduated Sep 2013.   http://godbold.name/experiencingdialysis/
Heartfelt thanks to IHD, KK and ADB for your generosity and support.
Henry P Snicklesnorter
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« Reply #37 on: May 03, 2012, 07:38:02 AM »

.
« Last Edit: October 21, 2013, 07:27:09 AM by Henry P Snicklesnorter » Logged
MomoMcSleepy
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My son Roddy McSleepy at 6 months! sry pic sidewz

« Reply #38 on: May 08, 2012, 07:29:14 AM »

Jumping in on this...since the surgery walking more than a block I am tired. In my legs and shoulders. Today I was walking back to my car from my lab and carrying a backpack with laptop, ipad and folders. My legs were yelling. Like I had run a race. Weird or me because I usually can walk all over Vegas before I get tired! Now I could walk maybe Fremont street. I have started waking up nauseous, tired and achy. Everyone is telling me it is from the anesthesia but I had Profanol, not the knock you out kind. I'm just confused. I am planning on getting blood work on Friday in hopes that it is not my kidneys. What do you all think? 
Mmom, I can relate to hearing something and thinking thats it! I think we need to stay positive that all will happen as it is needed. You've been ready for this for awhile....You can do this!!!

I meant to reply the other day.  I felt great after proprafol or whatever...the "warm milk."  It doesn't leave you has Stacey was the together stuff.  What  surgery, your fistula?  You did have trauma to the body and that can use up some energy, I suppose.  Did they give you anything else?  Are you on Painkillers?  For me, that twilight anaesthesia usually bothers me 1-2 days tops, but I and a tiny amount of contrast for my veinogram  (lol, I forget what it was called, to look at me veins) and I was messed up and tasting plastic when I drank water for a few weeks.  So, maybe it is something else they gave you, or dehydration from not getting to drink, or something,  I am always a mess when I can't eat or drink, it takes a while to recover.   But the warm milk was amazing, so I think those people might be wrong about the anesthesia, unless they gave you something else, too.
Logged

35 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
mamagemini
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Posts: 124


It's all me.

« Reply #39 on: May 08, 2012, 12:53:32 PM »

When I woke up I was awake! Not groggy or nausea ridden. It was nice. Yes it was for the fistula. I think your right about it using me up for awhile. Still tired and such but it is becoming the norm. Like now it is noon and I could snuggle down and go right to sleep!
Logged

FSGS/Nephrotic syndrome 2005
AV Fistula placed right arm inside elbow 4/2012
Started HD 9/7/2012
Started PD Oct 2015
Parathyroid removed 6/2019
Cellulitis in Fistula 8/2019
RT arm Fistula removed 9/2019
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