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: Ania, 35-44 Female (Patient) Published: December 16

I've always bruised easily but this October 2013, I've noticed the bruises literally would appear out of nowhere, huge and really dark and would stay on for weeks. I began to look like an abused woman so got a CBC (complete blood count) done and discovered my platelet count was 11,000. It later fell to 10,000 when I finally went to the emergency room two days later and by then I had developed the petechiae as well. I did not bleed at all at any time. They've run tests for known infections to determine if that was causing my thrombocytopenia and I guess by elimination I was diagnosed with ITP (idiopathic thrombocytopenic purpura) and put on 90mg of prednisone. I have responded very quickly, going up to 58 in 3 days and 114 within a week, so my doctor has lowered my levels to 60, then 40, 30 and just today (Dec. 10) to 20mg - my platelets have been at around 220-240 the whole time, so we are looking at continuing to take me off it in the next 3-4 weeks. As many of you know, it is imperative to wean off slowly as the natural production of corticosteroids is essentially stopped when on oral steroids and the body needs time to kick back in. Really hoping to be in the 50% that never have remission, because I would hate to be on steroids for extended time. I've also been diagnosed with severe anemia so have been on high dose of iron and not sure if it is the iron or the steroids or both, but it really increased my energy levels and I actually lost weight. I have certainly gained a new appreciation for people who "don't look sick."

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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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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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