Patience: It's so hard to be patient... - ITP Support Assoc...

ITP Support Association

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Patience

wjoyful profile image
6 Replies

It's so hard to be patient. My dr keeps making a mistake when she fills out my blood requisition wrong ( no special tube so platelets don't stick together) plus the lab waits too long to process and I get no platelet count. My red blood cells are high and my mean platelets are low but my hemaglobin is also high but my WBC are normal. When I researched it said high red blood cells mean more oxygen was needed so my body made more possibly because of heart failure which I have. My mean platelets have always been normal so why are they dropping. So hard with no hematologist to explain things to me.

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wjoyful profile image
wjoyful
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6 Replies
RONALD-DASON-P profile image
RONALD-DASON-P

What is your platelet count ? how often have you checked CBC? do you have any bleeding problem (either in gums or in nose) or do you find any spots in your skin?

RONALD-DASON-P profile image
RONALD-DASON-P

Can you post your CBC result here?

wjoyful profile image
wjoyful in reply to RONALD-DASON-P

I have a platelet count of 26 as of last Friday and my gums seem to bleed every night. I have no little spots happening. My WBC are normal and my red blood cells are high. The hematologist I am supposed to see just one time (he won't follow up with me after the one visit) called and changed my appt from nov to dec. I'll be done my steroids in two weeks. I'm stumped as to what to do.

RONALD-DASON-P profile image
RONALD-DASON-P in reply to wjoyful

As your GUMS bleed and PLT 24k it is ITP. Can't you consult your hematologist through phone? What steroid are you having and dosage? You need to continue you steroids. Take fresh juice since you can't eat it. Take rest whenever you feel tired. As you know there is not permanent solution for ITP, you need to continue steroids until your PLT cross 50k. then you need to reduce the dosage and can stop for some term but need to monitor your blood PLT frequently (twice in a month and later on once in a month). I know how you feel with this ITP since my mother in law also suffer from similar problem.

Take care

Ronald (ronaldsacs@gmail.com)

wjoyful profile image
wjoyful in reply to RONALD-DASON-P

I've been on steroids for 4 months and my platelets don't go above 30. I've had ivig and it failed. I also have an enlarged heart so my cardiologist wants me off steroids. I don't have a hematologist. The one that is seeing me in dec is doing this as a favour to my dr. He won't take me on as a patient. I'm going to go see a naturalpath to see if they can help. I've had 6 hematologists turn my case away. My np is totally stumped. Thanks for the advise.

RONALD-DASON-P profile image
RONALD-DASON-P

Have you done any other blood test such as ANA and ANC? Do you have any other problem like Hepatitis or Ulcer? Do you find any blood in stool?

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