Living with ITP for 18 Years

I have been living with ITP for the past 18 years. I was diagnosed at the beginning of my 6th pregnancy and after doing some chasing about it was previously noted in my 5th pregnancy but the particular doctor who delivered our daughter did not notify me about it.

My GP was not impressed to discover that I had probably been living with ITP for about 18 months before diagnosis. My first count was 66 (these are Australian figures so I am unsure how to convert for USA) and I was fourteen weeks pregnant. My GP monitored me very closely for the rest of the pregnancy and finally I delivered a very health 9 and a half pound baby girl. I had a small tear which bled a little but I did not hemorrhage.

After her birth I was then sent to the appropriate hematologist to further investigate whether I had got ITP as a result of the pregnancy or if it was true ITP. After having numerous blood tests and then a bone marrow biopsy, it was found that I had ITP but not as a result of the pregnancy. The hematologist felt that it was unnecessary to remove my spleen unless I have any real problems. Fortunately this has not been the case and I still have my spleen.

Now 17 years later I still have ITP and have been very fortunate not to have had any bleeding episodes at all. I have had no treatment either except for when I needed surgery twice and prednisone was used to raise my platelet levels. Even with this my raised levels only stayed that way for 24 hours before returning to the high 60's. I have had regular blood tests - every month until recently when my GP decided that as I had remained so stable all these years that it was ok to have blood tests only every 2 months. In the past 12 months my levels have risen to remain between 90-100 although in the past month they have dropped of to 66 again.

I have found that the only real issues I have is the constant tiredness that plagues me and it doesn’t matter how much sleep I get I am still tired. Bruises are just a part of life for me and my lower legs take a bit of a battering when I bump into things when I am working but I am grateful that I have not had too many issues as some of others have had. I pray that I can continue live issue free as I have in the past but realize that with age that is not always possible.



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