[Karenish]

Originally Posted by Polly S

Hi all,

I am 30, from Berkshire, England and was diagnosed wih SAA in dec 2010 following weeks of heavy menstural bleeding, huge bruising and generally feeling awful. I had only given birth to my 2nd son 4 months previously however so I was putting all my symptons down to exhaustion!

After 2 bone marrow biopsies I was diagnosed with SAA. Pretty devestating as you all know but a strange relief at he same time as I had convinced myself I had some sort of leukemia. My sisters were both tested but unfortunatly neither were a match (they are a match for each other - what are the chances!!!).

My consultant at the time wanted to sit on me and see how my counts progressed. But after 4 admissions with neutrapenic sepsis over the next few weeks and 2-3 units of blood and a pool of platelets every 10 days, he decided it was time to crack on with the ATG.

Unfortunatly though, the day after my chest line was inserted for the ATG I got a raging septacemia from it and line was removed and the ATG was cancelled. This, as it turns out, may have been a blessing in disguise. My consultant decided it would be worthwhile refering me to Proff Marsh at Kings College Hospital in London. When I saw her she was totally against me having the ATG as very recent research has shown Rabbit ATG to be high risk for peple of my age group (horse ATG is not available in the UK at present).

So the proff started me on cyclosporin (150 twice a day). That was 3 months ago and my counts have improved massivly. I have not had a blood or platelet transfusion for 6 weeks (although they are still quite low) and my neut and WCC is practically back to normal!

I had a repeat BMB last week and am waiting for the results. It all feels too good to be true at the moment, but fingers crossed...

I still have ongoing problems with serious fatigue even with an HB of 9, continual, non stop menstrual bleeding and now a ferritin level of 3100 but I am feeling quite positive.

I have so many questions, all the time. My unit are good but not very knowlegable about AA and there is no one else there being treated for it so it is quite isolating. My family, particularly my husband are fantastic but I am desperate to chat to other people who are going through this. Hopefully I might find them somewhere on this site.

Thanks for the space to ramble and vent!!
XXxxx

Lol join the UK club, we are similar I was diagnosed in January 2011 - I was able to have rabbit at age 50!! got through that okay...in fact....very easily!!! counts have just started to rise, plates were 41 on monday, whites 2, neuts 2 and hb 8. My consultant Dr. Amos is in touch with prof. marsh all the time so we are lucky in the UK that its such a small country in some respects. My biggest advice would be not to trawl the internet too much, there are lots of negative stories out there! BUT remember we are all unique, the diagnosis may be the same but the outcome and rate of healing can be very different...bit like child birth!! Did they mention that some do get SAA due to pregnancy? I have a theory that for us ladies it can be triggered by hormones! but, hey, what do I know? glad to hear your counts are on the up! just rest when you need to, hard with kidlings!!! but try to listen to your body. I am already back at work, have stayed infection free since 2 years before diagnosis so count myself extremely lucky, touch wood! My ferritin level is high so am about to have an eye and ear test to go on Exjade to lower it and doc is putting me on northesterone? the pill! so i dont have periods, as my first one which i had last month was so frightening, i thought i would bleed to death!! so maybe consider doing that! There are positives to this..... we are having regular blood tests so any change in health will be spotted straight away, its not degenerative and providing we look after ourselves our lives can be near damn normal. Best of luckxx Karen - Staffordshire