View Single Post
  #10  
Old Sun Nov 16, 2014, 10:54 PM
Cheryl C Cheryl C is offline
Member
 
Join Date: Dec 2011
Location: Lake Macquarie, Australia
Posts: 843
MissDaisy - the good thing is that I don't get any more infections than I did when I was only chronically neutropenic, and my white cells were higher than now. In fact I handle infections better now than I did then because I've learned what I can do to try and knock them on the head quickly. Some history:

My MDS arrived after a few years of chronic idiopathic neutropenia, some time between a 2008 bone marrow biopsy and the Sep 2011 one which showed 10% blasts in marrow and 9% in peripheral blood. My specialist thinks I had had MDS for about 2 years when diagnosed.

I had become increasingly unwell for about 18 mths before being diagnosed and just thought I must be getting too old for my very full-on job and it must be time to retire. My symptoms were frequent feelings of shakiness in my legs, a thumping heart especially when lying down, vague nausea esp in the morning, tiredness, sometimes feeling that I was about to 'black out', and more frequent and severe infections. When I look back I don't know why I didn't ask my GP more questions! He monitored my neutropenia via 3-monthly pathology tests and I think he had got used to my results and didn't pick up that there was more going on even though I often had macrocytes ++, anicytosis +, and other abnormal comments over that time period.

It was only after I had severe bacterial bronchitis while travelling overseas in Jul 2011 and decided to take advantage of a free work medical subsequently that it was discovered that my platelets had dropped below normal as well. As a result my GP ordered a BMB via the haematologist and the MDS was discovered along with hypogammaglobulinaemia. A transplant was decided on as my older brother is compatible but I became uncomfortable about the idea and started to pray that if I wasn't meant to have it my blast cells would drop. That's what happened over the next month or so, and although I still have MDS with all 3 cell lines affected (mainly white cells) my blasts have remained in normal range since then. I am so grateful for that!

Going back to when I only had neutropenia, I have often wondered if my immune system was damaged when I had malaria (falciparum type) in the Solomon Islands back in 1998 and then again in 2002. After the 1998 episode I had UTIs for months afterwards. After the bout in 2002 I had boils for about 6 months (staph infection). From 2003 onwards I seemed to be more prone to infections and the chronic neutropenia was diagnosed in 2006. I can't point to anything else that could cause the problems in my blood.

Anyway that's some of my story. Please feel free to ask any questions you might have if you think I can help you. Knowledge is power!
__________________
Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood.
Reply With Quote