Anemia back already!

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PeanutMom
Regular Member


Date Joined Jun 2008
Total Posts : 197
   Posted 7/29/2008 9:59 AM (GMT -6)   

I'm so frustrated now I am having trouble forming polite words. I feel like my body's internal brain has just left town and my body is just to stupid to know enough to take care of itself! I got a call at the end of my work day yesterday from my hemo doc's office, they need to schedule me for an IV ASAP because my iron saturation levels dropped significantly in 3.5 weeks and at that pace I'd be dropping my regular iron in a major way shortly, basically back to square one in no time if I wasn't careful! GRRRRRRR I thought I was free of the IV shreddings for a while, I'm so tired of being the human pin cushion!!! Then there's the all around cruddyness of the stinking IV to begin with GAAAAHHHHH (trying not to cuss, gruntle noises are better I guess) I have to hope that I don't get that nausea and dumping sensation this time because they want me there at 8AM for the IV which means I have to try and put in at least half a work day after the IV this time. . . I used to go at the end of the day. Now I get to feel like crud AND try to work I'm sooooo not looking forward to this. I just don't understand why this keeps happening. . .what's wrong?!?!?!?! I'm not bleeding from my bowels, I'm not having "that time of the month" long at all, heck that only lasts about 3 days! So what gives?!?!?!?! Here in the world is this stinking iron going?!?!?!?! I just don't get it!

Sorry I needed to blow off in a major way today, just how much are we expected to put up with. . .when is it enough, UC is enough to deal with all by itself. . . .add in extreme anemia and an unpredictable kidney disease I just don't know how much more I can take.


Kim
~ Mom of Nathaniel aka "Peanut" 18m (6/08)~ Married ~ 36
"The List "
- UC dx 8/2000 - Culturelle Align 1x day Prenatal Vitamin (Currently not flaring but not what I would call in remission either.)
- CKD Stage 3 (Chronic Kidney Disease) - Lisinopril 7.5mg - Still have 27% function!
- Anemic - Ferolicit IV monthly
- Allergies - Zyrtec 10mg 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30402
   Posted 7/29/2008 2:50 PM (GMT -6)   
I feel for you having to go through all that you are...worse yet with not enough answers Have you done a search on causes of iron deficiency?

Have you had B-12 and vitamin D levels checked?

Have you had other tests done for cancer markers, autoimmune markers, etc done?

Venting is good.

Hope you get more answers as to the why.

Keep us posted as to how your infusion goes.

quincy
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


PeanutMom
Regular Member


Date Joined Jun 2008
Total Posts : 197
   Posted 7/30/2008 9:16 AM (GMT -6)   
Thanks for understanding the need to vent. . . I just needed to blow off and then take some time to wrap my head around it again.  I'm frustrated that my body doesn't work right but also frustrated with the "guessing" I'd rather have them say "We're not sure but still looking" than to have them tell me (this last time) "You were pregnant and then nursing so that's why you didn't come up until now, should be ok from here out" then a month later get a call "we need you back for IV ASAP because your dropping more than we thought you would."  Just say that they don't know, why is that so hard for them to admit to?
 
Testing. . . oh boy I've had as many needles from that as I have from the IVs lol.  Let me see if I can recall them all.....
 
I was spilling proteing because of my Kidneys so they were tested as the iron drain. .  .negative
Again the protein so they thought Kidneys were pulling from bone marrow and bones were sucking iron.... negative
B-12 - negative it's perfectly normal, giving me more would make me sick
cancer markers - negative (hemo is also an oncologist office so they tested everything)
endometriosis  - negative
infectious diseases - negative, I can't remember all they checked for but I gave 14 vials of blood at one sitting for it.  I do know lyme, lupus, HIV and others were in there and some others that they only check if youhave animals living with you, which I do
autoimmune markers - I can honestly say I have no idea, I can ask. 
 
I honestly can't think of what else at this point.  If you know of anymore I can ask about I'm all ears!
 
I'm hoping that this one goes smoother like that last one did when they weren't cleaning the chairs and hopefully we can determin that the cleaner was what I was reacting to and not the IV itself. 
Kim
~ Mom of Nathaniel aka "Peanut" 18m (6/08)~ Married ~ 36
"The List "
- UC dx 8/2000 - Culturelle Align 1x day Prenatal Vitamin (Currently not flaring but not what I would call in remission either.)
- CKD Stage 3 (Chronic Kidney Disease) - Lisinopril 7.5mg - Still have 27% function!
- Anemic - Ferolicit IV monthly
- Allergies - Zyrtec 10mg 


PeanutMom
Regular Member


Date Joined Jun 2008
Total Posts : 197
   Posted 8/1/2008 9:30 AM (GMT -6)   
Morning,
 
Started my IV with only 3 attempts this morning so I am hopeful for the day.  I have to get a message to the doctor because at this point they just ordered IV for the next 6 months and then a follow up dr visit. I don't want to go 6 months with no answers as to why this keeps happening.  The good thing is that I got the end seat in the treatment center so I can just get enough wireless signal from the hospital and I'm able to keep working while I sit here so that I haven't got to burn up half a day of my pto time to be here.
Kim
~ Mom of Nathaniel aka "Peanut" 18m (6/08)~ Married ~ 36
"The List "
- UC dx 8/2000 - Culturelle Align 1x day Prenatal Vitamin (Currently not flaring but not what I would call in remission either.)
- CKD Stage 3 (Chronic Kidney Disease) - Lisinopril 7.5mg - Still have 27% function!
- Anemic - Ferolicit IV monthly
- Allergies - Zyrtec 10mg 


PeanutMom
Regular Member


Date Joined Jun 2008
Total Posts : 197
   Posted 8/4/2008 8:10 AM (GMT -6)   
Well that was not a fun weekend. I ended up reacting to the IV again, managed to scare even the patients in the treatment center I looked so bad there for a while (that's bad when half of them are there getting chemo.) So much for their theory that the smell of the cleaning solutions is what I was reacting to, they weren't cleaning the chairs yet. I ended up starting my IV about 10:30 am and should have been there 2 hours tops. . .I didn't get to leave until almost 4. I went home and slept until about 8 then was very foggy until my husband ushered me back to bed about 9:30 . . I spent the night half in bed and half in the bathroom with pure water for bowels . . . it wasn't too painful just exhausting. Saturday ran about the same . . I had my grandmother come to help watch my son because I was spending so much time running back to the bathroom I wasn't comfortable with him lose without supervision. Sunday got a little better so I was able to nap when the baby napped but man I was just worn out from it all. When my husband got home I took another nap and then went to bed early in general last night.

And this is supposed to be helping me?!?!?!?!?!?!?
Kim
~ Mom of Nathaniel aka "Peanut" 18m (6/08)~ Married ~ 36
"The List "
- UC dx 8/2000 - Culturelle Align 1x day Prenatal Vitamin (Currently not flaring but not what I would call in remission either.)
- CKD Stage 3 (Chronic Kidney Disease) - Lisinopril 7.5mg - Still have 27% function!
- Anemic - Ferolicit IV monthly
- Allergies - Zyrtec 10mg 

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