Hi all
I was just browsing the site and though I'd post our story as the community here seem so nice and supportive. I hope you don't mind English people - it seems to be mainly Ozzies and Americans
My wife has been in and out of hospital a lot during 2012 - about 50 days so far. It started with mouth ulcers which were so sort she stopped eating, this led to constipation which led to hemorrhoids which became infected. She has suffered from neutropenia for the last 10 years but usually a trip to the doctors and some antibiotics clears things up. She had never had to go to hospital before. Her sister has the same problem although we though she had it worse since she had been to hospital a few times for IV antibiotics and G-CSF injections. They both developed it in their early 20's. My wife is now 34 her sister is about 46.
This time, after having had temperatures for a few days despite having antibiotics we took her to the hospital for blood tests. Her neutrophils were 0.00. Oh dear. After a couple of weeks of strong antibiotics the infection cleared up and she was discharged - for a day. The next day temp was over 39 so we got her straight back for another 10 days. This pattern has continued for the last few months although she has managed a couple of 3 week stints at home. We think the hemorrhoid keeps getting infected but they can't operate because of her neutropenia - a proper vicious circle.
We are fortunate to have been referred to Prof Judith Marsh at Kings College Hospital as she is one of the UK's leading experts in this area. We have had every blood test imaginable done along with ongoing genetic tests on her bone marrow. So far she has come up negative to every test they have run. I'm not sure if that is good news or not! She was also seen my Prof Mufti who is head of the department and one of the world experts in investigating the genetic causes of the myelodysplastic syndromes.
The bone marrow investigation showed hardly any white blood stem cells being produced, but the red cells (18.1) and platelets seem to be okay. She has had 7 or 8 blood transfusions while in hospital as she has had bouts of anemia. The red cell count could be due to a transfusion, or maybe the red cell factory has reopened for business. The white cells haven't got above 0.04 throughout the process and this could be due to machine errors as at that low an amount its impossible to be accurate.
Over the last 10 years her neutrophils have usually been around the 1.0 to 1.5 mark. When she was pregnant this went up to around the 4.0 mark both times. Apparently this is fairly normal but it proves her bone marrow can work given the right stimulus right?
So that's where we are at the moment. She's been out of hospital for nearly 3 weeks although she currently has what might be an infected ulcer in her mouth so we might be back in soon. We have more genetic test results due in a couple of weeks time. The G-CSF injections haven't done anything, we've been told that steroids might be an option depending on the results of these tests. If not then they might have to look into a bone marrow transplant but I don't like the look of the survival stats. I'm assuming that would be a last resort only.
Any thoughts or ideas would be gratefully received.