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Author Topic: Totally whacked !  (Read 2134 times)
KICKSTART
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« on: June 06, 2009, 02:46:20 PM »
Blimey that was hard work  and as you know i have so many plans, things i want to do now! I have just finished setting up my cycler for the night but blimey im so worn out im shaking! This is ridiculous. I know those tablets have halved my BP (by the way clinic were  :clap; when they saw my BP and no mention of changing anything ) but im as weak as a kitten ( i dont think thats all down to bp? ) I know PD patients usually have it better then Hemo ones for feeling weak and up and down , in all the years ive done PD ive not been so weak i shake just doing something so simple ! Also i' ve noticed a terrible ache between my shoulders , you would have thought i had dug a garden over .. is this high phos and PTH ?  I dont have it all the time , just when im trying to do stuff.  This is really getting me down as i want to do loads now.
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OH NO!!! I have Furniture Disease as well ! My chest has dropped into my drawers !
David13
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A meow massages the heart.
« Reply #1 on: June 06, 2009, 03:38:26 PM »
How is your hemoglobin/hematocrit? 
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“The first human being who hurled an insult instead of a stone was the founder of civilization” - Sigmund Freud
dwcrawford
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Getting the heck out of town.
« Reply #2 on: June 06, 2009, 03:41:33 PM »
How is your pulse rate???
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Come to think of it, nothing is funny anymore.

Nothing that I post here is intended for fact but rather for exploration into my personal thought processes.  Any slight, use of words with multiple connotations or other percieved insults are totally unintended.  I reserve my insults for private.
jbeany
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« Reply #3 on: June 06, 2009, 05:01:17 PM »
High PTH can cause bone pain.   

I hate having symptoms that have so many possible causes that you don't know what to blame.
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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.
dwcrawford
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Getting the heck out of town.
« Reply #4 on: June 06, 2009, 05:10:57 PM »
true.  no energy can be anything from heart to depression... from blood to diets.  where do you start looking?
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Come to think of it, nothing is funny anymore.

Nothing that I post here is intended for fact but rather for exploration into my personal thought processes.  Any slight, use of words with multiple connotations or other percieved insults are totally unintended.  I reserve my insults for private.
KICKSTART
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« Reply #5 on: June 07, 2009, 04:48:12 AM »
PTH is high , hopefully it will improve as i have been having a lot of trouble with binders. Hemoglobin is a joke ..7.1   !!! yup thats right .
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OH NO!!! I have Furniture Disease as well ! My chest has dropped into my drawers !
David13
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A meow massages the heart.
« Reply #6 on: June 07, 2009, 04:55:04 AM »
7.1?  Well, no wonder you have no energy! Are you getting Epogen or Procrit, Kickstart?  You are about at the level where a blood transfusion would be given.
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“The first human being who hurled an insult instead of a stone was the founder of civilization” - Sigmund Freud
willowtreewren
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My two beautifull granddaughters

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« Reply #7 on: June 07, 2009, 05:20:50 AM »
I can hardly believe you are able to function at all! That is really, really low! It's no joke!

What is your team doing to correct your hemoglobin level?

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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. :)
kellyt
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« Reply #8 on: June 07, 2009, 05:23:24 AM »
I couldn't keep my eyes open when I was around 10.  Kudos to you!   Now get that taken care of pronto!

dw, your profile photo is giving me diabetes is so freaking sweet!   :clap;
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1993 diagnosed with glomerulonephritis.
Oct 41, 2007 - Got fistula placed.
Feb 13, 2008 - Activated on "the list".
Nov 5, 2008 - Received living donor transplant from my sister-in-law, Etta.
Nov 5, 2011 - THREE YEARS POST TRANSPLANT!  :D
aharris2
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« Reply #9 on: June 07, 2009, 07:22:29 AM »
Quote from: David13 on June 07, 2009, 04:55:04 AM
7.1?  Well, no wonder you have no energy! Are you getting Epogen or Procrit, Kickstart?  You are about at the level where a blood transfusion would be given.

You're in GB right? Are numbers the same there? If so, David is right!!! This IS so low that a transfusion is typically given! Like Kelly said, kudos to you for being able to do any thing.

Alene
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Life is like a box of chocolates...the more you eat the messier it gets - Epofriend

Epofriend - April 7, 1963 - May 24, 2013
My dear Rolando, I miss you so much!
Rest in peace my dear brother...
KICKSTART
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« Reply #10 on: June 07, 2009, 09:03:33 AM »
Yes im in GB and yes our numbers are the same !!! Im not down for a transfusion or iron yet. Its been a long battle as you know to get my BP down low enough to have anything. Now everyone is so happy my BP is down they are not bothering doing anything else. I HAVE told my renal team/doctor how much im struggling , how drained i am and how i have no energy , but all i get is ..when your numbers pick up so will you , it wont happen overnight , its going to take time.  Getting a blood transfusion over here is like the very last resort (gawd knows how low you have to go!) they have told me they will arrange IV iron now my BP is down, but this can take up to 4 weeks before i get my first appt , then its going to take weeks before i feel the benefit ( along with Epo) If i was a little grey haired old lady im sure they would suggest something to help me , but as with a lot of things over here age is a factor as to what help you get , seems if you are young(ish!) you are left to get on with it ! In fact one of the best things i ever heard from a receptionist once was ..you cant be that ill , your not that old !!!!
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OH NO!!! I have Furniture Disease as well ! My chest has dropped into my drawers !
dwcrawford
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Getting the heck out of town.
« Reply #11 on: June 07, 2009, 09:18:55 AM »
When I ask about anything unsual that is happening to my body, I'm usually told "It happens when you get old".  I feel the reverse prejudice. 
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Come to think of it, nothing is funny anymore.

Nothing that I post here is intended for fact but rather for exploration into my personal thought processes.  Any slight, use of words with multiple connotations or other percieved insults are totally unintended.  I reserve my insults for private.
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