Patient Comments: Thrombocytopenia - Describe Your Experience

What�s your biggest challenge with living with Thrombocytopenia?

Comment from: M. Davis, 45-54 Male (Patient) Published: May 18

Yellow in the whites of my eyes was the first symptom of liver disease I experienced. I had a liver transplant on March 19, 1986, over 30 years now and still going. I turned 26 while I waited for my liver. I had a disease attack my liver when I was about 21 years old, primary sclerosis cholangitis (PSC). I have been very fortunate. I have had a donor liver over half my life. Since the transplant I have had 3 awesome kids all in college now and an angel for a wife. A year after the surgery, I was able to go back and finish dental school. There have been a few rough times, but never rejection. PSC is the closing down of the bile ducts.

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Comment from: 13-18 Female (Caregiver) Published: October 18

My daughter was just diagnosed with low platelets (thrombocytopenia). She had this for the first time a year ago, just by way of a physical and CBC done. No sickness, bleeding, spots or anything and her count was 14. They did a transfusion immediately and her count rose a little and they started her on a low dose of prednisone. Months later her platelet levels began to rise. So no treatment was further needed. Eleven months later, two weeks ago, she had a nose bleed for about 4 hours which led us up in the emergency room, her platelet count was down to a 9, they did a transfusion, a week later the count was up to 69, and now today two weeks after the transfusion her levels have dropped to a 49. She has no symptoms, no sickness, no real noticeable tiredness. This is really strange. She played a weekend of basketball and that Monday found out her platelets were 14. This is scary that she has no signs. They have given her no medicine, no nothing, just keeping track of her levels weekly.

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Comment from: MGV, 25-34 Female (Caregiver) Published: August 25

My wife (28 years old) is affected by thrombocytopenia. Before 12 days she had only 22000 platelets and the Hb was 3 gm. After the 5 days treatment she had Hb 10.4 gm and 64000 platelets. She need to increase the platelets level to above 150000.

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Comment from: Mingo, 65-74 Male (Patient) Published: December 16

I am a 69 years old male. ITP (Idiopathic thrombocytopenic purpura) for at least 8 years. I didn't find out till 2 weeks ago when I developed petechia and purple skin all over body, headache fatigue, loss of appetite, chills and jaundice. Except for purple skin and petechia, other symptoms have been since springtime gradually increasing and also I do not drink much liquids. I went to the emergency room. Platelets 102 and nothing was given. CT and chest x-ray good. I also get night sweats sometimes and it's enough to warrant a change of shirt. I have no fever. Three years ago had 2 episodes of urinary bleed. Everything checked out okay.

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Comment from: Lilly, 19-24 Female (Patient) Published: May 14

So I just took a fbe or cbc. The doctor found I have mild thrombocytopenia. My count from what I know is 139,000. I feel fortunate it isn't lower as many others I read off here. I took another test. Now awaiting results and going to a hematologist next up on my list. I've been reading about all the things that can be happening to me in the next few months like tests and such. Just getting prepared and I'm hoping I can get it fixed up but I'm a bit nervous if I ever have to remove my spleen. I'd feel some grief having a piece in my body gone!

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Comment from: genna, 75 or over Female (Patient) Published: May 09

I discovered I had Amegakaryocytic thrombocytopenia almost two years ago. My platelets have gone down to as low as 2. Been hospitalized quite a few times. Been on Cyclasporin which affected my kidneys another 5 day intense treatment, sorry can't remember the name, had to be hospitalized for two weeks for that. Needless to say nothing has worked. Hospitals are trying to get another drug to try but so far aren't having much luck. I'm surviving on platelets 5 times a fortnight and blood transfusion once a fortnight. Would be a lot easier if I could get medication!

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Patient Comments

Viewers share their comments

Thrombocytopenia (Low Platelet Count) - Causes Question: What was the cause of your thrombocytopenia?
Thrombocytopenia (Low Platelet Count) - Symptoms Question: What were your symptoms associated with a low platelet count?
Thrombocytopenia (Low Platelet Count) - Diagnosis Question: What changes have you had to make to your routine since being diagnosed with thrombocytopenia?
Thrombocytopenia (Low Platelet Count) - Treatment Question: What kinds of treatment did you receive for thrombocytopenia?

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