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?

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  • 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.

  • Hi

    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.

    Nicky

  • NickyD.,

    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

  • Nicky,

    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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