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AA Aplastic anemia

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  #1  
Old Sun Jan 10, 2016, 10:13 AM
Ashleigh K. Ashleigh K. is offline
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Location: Birmingham UK
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Unhappy AA and Fatigue

Hi all,
I have recently relapsed with AA and i am struggling with energy levels.
I get fatigued really easily, even turning in bed or simply bending down gets me out of breath and my heart racing. I always feel the need to lie down afterwards.

Its really starting to bother me as I attend college all week and our college has 3 floors requiring to walk six flights of stairs to walk up (we have lifts but they are usually broken)

At the moment I take glucose tablets when i need them as to avoid dizzy spells and they worked great at first but their effects are now waning
My doctor is trying not to give me too many blood tranfusions as they are hopefully preparing to do a BMT

What can i do to make sure I dont overwork myself? Also, how could I deal with asking my parents/family for help with chores even though they think its because im "unfit" or "lazy" (which im not because i walk to and from college everyday and generally walk a lot of places)

Thanks in advance,
Ashleigh
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  #2  
Old Sun Jan 10, 2016, 07:19 PM
Cheryl C Cheryl C is offline
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Location: Lake Macquarie, Australia
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Hello Ashleigh. So sorry to read that you have relapsed and sad to read that your family doesn't seem to understand the seriousness of your situation. Have you directed them to the AAMDS website - http://www.aamds.org/about/aplastic-anemia where they can learn more about the disease? The online learning centre at this site could be very helpful.

All the best and keep posting!
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood.
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  #3  
Old Mon Jan 11, 2016, 02:33 AM
Ashleigh K. Ashleigh K. is offline
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Location: Birmingham UK
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Quote:
Originally Posted by Cheryl C View Post
Hello Ashleigh. So sorry to read that you have relapsed and sad to read that your family doesn't seem to understand the seriousness of your situation. Have you directed them to the AAMDS website - http://www.aamds.org/about/aplastic-anemia where they can learn more about the disease? The online learning centre at this site could be very helpful.

All the best and keep posting!
Hi! My family have looked at stuff like that but they still dont think my fatigue affects me as badly as it does
However, i have a hospital appointment tomorrow and am going to discuss it with my doctor
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Diagnosed AA in 2009;treated rabbit ATG+Cyclosporin the same year, taken off Cyclosporin in 2011; Relapsed AA in 2015 and had horse ATG as of 08/02/16. I have copy neutral loss of heterozygosity in chromosome 6p, affecting the HLA region.
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  #4  
Old Mon Jan 11, 2016, 12:21 PM
traceyn11 traceyn11 is offline
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Location: Irvine, CA
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HI Natalie,
So sorry you have relapsed. Is it possible for one or both of your parents to go to the drs. appt with you today? I know for me, when my husband attends my appts. and hears it straight from the dr., then he understands what's going on better.

I have MDS, but I struggle with fatigue daily. Sometimes just taking a shower is all I can manage. I try to do things in short bursts, but not sure if that would work for you.

Tracey
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Tracey, mom & wife,age 58, dx MDS RAEB-2 4/15, normal cytogenetics, Update: SCT cancelled. Blasts at 67%. New dx AML.
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  #5  
Old Mon Jan 11, 2016, 04:29 PM
Ashleigh K. Ashleigh K. is offline
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Join Date: Jan 2016
Location: Birmingham UK
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Originally Posted by traceyn11 View Post
HI Natalie,
So sorry you have relapsed. Is it possible for one or both of your parents to go to the drs. appt with you today? I know for me, when my husband attends my appts. and hears it straight from the dr., then he understands what's going on better.

I have MDS, but I struggle with fatigue daily. Sometimes just taking a shower is all I can manage. I try to do things in short bursts, but not sure if that would work for you.

Tracey
My mom always comes with me to my appointments; I'd never dream of going by myself!
I think she is starting to get it now though which is helping.
I'm going to have to explain things thoroughly to my boyfriend once we get more information. (He knows the basics but he'd like to know more)

I hope your MDS improves soon, Tracey. I try to pace myself throughout the day but college is a bit hectic so that can be difficult.
__________________
Diagnosed AA in 2009;treated rabbit ATG+Cyclosporin the same year, taken off Cyclosporin in 2011; Relapsed AA in 2015 and had horse ATG as of 08/02/16. I have copy neutral loss of heterozygosity in chromosome 6p, affecting the HLA region.
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  #6  
Old Mon Jan 11, 2016, 06:36 PM
traceyn11 traceyn11 is offline
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Join Date: Apr 2015
Location: Irvine, CA
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Quote:
Originally Posted by Ashleigh K. View Post
My mom always comes with me to my appointments; I'd never dream of going by myself!
I think she is starting to get it now though which is helping.
I'm going to have to explain things thoroughly to my boyfriend once we get more information. (He knows the basics but he'd like to know more)

I hope your MDS improves soon, Tracey. I try to pace myself throughout the day but college is a bit hectic so that can be difficult.

Omigosh Ashleigh - I don't know why I typed Natalie instead of Ashleigh! Lack of sleep I guess. So sorry.

Glad your mom goes with you to your appointments. My daughter is a freshman in college, so I know what you mean about it being hectic.
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Tracey, mom & wife,age 58, dx MDS RAEB-2 4/15, normal cytogenetics, Update: SCT cancelled. Blasts at 67%. New dx AML.
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