ITP Support Association
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I have been admitted to hospital 6 times in the last 15 months. How do you cope when you are frightened by not knowing the next step?

15 months ago I had a platelet count of zero. I was put on prednisolone and my count went up then crashed to 2. I was then given IVIg but got meningitis and a retinal bleed and my platelets crashed to 3. I was then given rituximab and my count went up then crashed to 2 I then had a splenectomy and my count went up to 593 and then crashed to 3. I was then given a course of 80mg of prednisolone tailing off over 100 days but my count crashed to 2. I was then put on Romiplostim but it has affected my liver. I am currently attending hospital 4 times a week. I live day to day and find the fear and anxiety very tiring and very draining - has anyone else gone through what I have had to face over the last 15 months?

5 Replies

I have had ITP since I was 2 years old, I'm 41 now. When I was 15 I was discharged from hospital up until then I would regularly attend the out patients clinic, for check ups. When I was 25 I suffered a relapse and have been attending the out patients clinics again, starting once every week but now its every 6 months. I suffered a really bad migraine just after new year and couldn't stop vomitting, as there was blood in it I went to the hospital as I didnt want to risk not checking it out. I was told I would have a catscan and a lumbar puncture, I was not keen on the lumbar puncture, scared half to death. I just took deep breaths and said to myself 'You are in the best place, keep calm cos stressing only makes it all worse, once its over I can go home and rest. After years of being prodded and blood tests I have come to accept a little pain and discomfort. Relax, take deep breaths and tell yourself you need to know whats happening so you can deal with it and move on.



What is the result of your catscan and lumbar punture? Hope you are ok.

I agree with you that you have to stop stressing about it. I was sitting in the hospital this morning. I had a blood test at 8.30am and then an appointment to see a consultant at 10am. I took some work with me to while away the time. I was close to tears by the time they called me in. I do not cry very often so I gave myself a good talking to.

By the time I got back into the office it was after 11am. I made myself a cuppa before starting my working day. I try to take time out to look at all the things I am grateful for. Today my blood count has gone way high and so I am having to take aspirin to thin my blood. At least ITP is not a painful condition and for that I am grateful.

I have askedone of the consultants to get another opinion about my condition. I have been told on several occassions that I am a very difficult patient. My consultant will be speaking to someone else about me so let us hope they have had a patient with a similar track record so we can get my platelets stable and I can start to enjoy life without the constant worry of potentially bleeding.

You take care.




My case is not nearly so severe as yours, but even so I find the uncertainty maddening. It's much easier to know that we shouldn't let the stress get to us than it is follow through — especially when we keep getting the rug pulled out from under our feet.

I am also a "difficult patient." I react in unpredictable ways to medications, which is frustrating for everyone, and when I am unhappy I'm not good at hiding it.

I admire your strength and courage. I hope your caregivers find a way to stabilize your counts at a safe level soon. I wish I had good advice to give you instead of just sympathy.


Hi SopoRose

Things have moved on since I last made a post. I am now attending hospital once every three months and have got my life back. I did get that second opinion and was put on Mycophenolate the same day. It has revolutionised my life. I can highly recommend that if you are having problems with stability with ITP - ask to see Dr Drew Provan at Barts in London. For me it was well worth the trip. NickyD



I'm so happy that you have your life back! Congratulations. It sounds like a huge change.

Thank you for the recommendation; unfortunately I'm in the U.S. and London is a little far for me to go : ). My problem is more with my unpredictable and exhausting reactions to medications than with the ITP itself.

Take care. Let u snow how you get on.


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