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Viewing 15 posts - 1 through 15 (of 448 total)
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  • in reply to: Do I or Don' I ? #22223

    eve
    Member

    to cathie’s mom

    please re read the posts

    it is not I who had a chuckle

    this disease never has or never will make me chuckle

    eve

    in reply to: Do I or Don' I ? #22201

    eve
    Member

    cathie

    even those of use who are lucky enough not to have major medical problems take certain precautions when it comes to living – that does not make us a prisoner

    don’t bury your head in the sand

    good luck
    eve

    in reply to: Do I or Don' I ? #22179

    eve
    Member

    besides washing hands make sure you wash all the fruits and vegetables you eat before peeling them – otherwise you will be introducing bacteria under the skin as you cut or peel it

    eve

    in reply to: C-Diff: My Heartfelt Warning to All of You #21656

    eve
    Member

    dear janet

    sorry for your loss and pain

    thank you for the information

    my girlfriend who is in her 50’s and in good health – she is a runner – had c-diff and was extremely ill – i can only imagine how it must effect someone with a compromised immune system

    eve

    in reply to: Passing of My Wife #21444

    eve
    Member

    jack

    my thoughts and prayers are with you and your family at this most difficult time

    eve

    in reply to: Fatigue and Vidaza #21375

    eve
    Member

    not much advise except that you must be very careful of infections – not only for patients on vidaza , but all mds patients – any infection can really get out of control fast- if your dad is having trouble eating then let him try the food supplement drinks and he can add ice cream or fruit and make a smoothee out of it – any which way he can to get those calories in him, because the weight loss is not only him not eating, but the body using extra energy to sustain itself due to the mds

    if you have any questions feel free to e-mail me

    good luck
    eve

    in reply to: Fatigue and Vidaza #21373

    eve
    Member

    deb

    my dad took megestrol(prescription) to help increase his appetite – it helped as long as he took it

    good luck
    eve

    in reply to: vidaza success–how to count months? #21007

    eve
    Member

    my dad was on vidaza for years

    eve

    in reply to: 4+ years with MDS under control #20868

    eve
    Member

    kirby

    so glad things are working well for you and that you are feeling great

    continued good health
    eve

    in reply to: hgb 6.7, platelets 16000 #20860

    eve
    Member

    oops the word is confer not confire

    eve

    in reply to: hgb 6.7, platelets 16000 #20859

    eve
    Member

    jack

    not answering for S, but my dad saw dr silverman once a month (he is in nyc) and then had a local hematologist that he was in contact with weekly – the 2 doctors would confire when needed

    it would have been too taxing for my dad to go into manhattan every week

    and besides you need to establish a relationship with a local doctor in case of an emergency or hospitalization

    just my 2 cents worth

    good luck
    eve

    in reply to: hgb 6.7, platelets 16000 #20856

    eve
    Member

    hi s

    who is your dad seeing locally – my dad could not function when his hgb got below 9
    i know everyone is different, but 6.7 sounds really low not to have a tx

    my dad’s hgb when he had an infection would not rebound unless he had a tx, sometimes it took 2 to get him back on track – but again i say that everyone is different

    good luck
    eve

    in reply to: hgb 6.7, platelets 16000 #20854

    eve
    Member

    dear s

    if his hgb was so low did he get a red blood cell tx
    infections tend to lower the hgb in mds patients

    my dad was treated by dr silverman – he is sure to put your dad on the right path of treatment

    good luck
    eve

    in reply to: Newly Dx have questions #20801

    eve
    Member

    hi lynn

    i charted everyone of my dad’s blood tests so that i could see at a glance if there was any significant change – i divided the chart into

    date, wbc, rbc, hgb, hct, plts and then a column for notes

    i noted everytime we saw a doctor and the results of that visit, test taken, treatment given

    it proved to be a great aid because i had all the information at my finger tips without having to rummage through dozens (maybe hundreds of papers)

    i would take a copy of this chart with me to every doctor’s appointment (with any and all doctors) and it would show them at a glance what was happening with my dad’s condition

    by all means get copies of every single test you take

    if i can be of any further assistance please feel free to e-mail me

    good luck
    eve

    in reply to: Lingering Illness #20790

    eve
    Member

    zoe

    when did you see the doctor – if your fever is still there (anything over 100.3) you should be seen – things can go haywire quickly with an mds patient

    good luck
    eve

Viewing 15 posts - 1 through 15 (of 448 total)

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