Thank you very much for replying. I completely understand how awful the waiting and not knowing is: my brother, who’d been feeling tired, and bruising easily, went to give blood and was found to be anemic and told to see his doctor, which he did, and the doctor sent him to hospital. That was Thursday 30th July. The next day he had a bone marrow biopsy, chest X ray, ECG and a whole load of other tests and transfusions. He was sent home for the weekend with very little info – I’m still angry about that – and had a pretty normal weekend. On Sunday night he began vomiting and having diarrhea and was readmitted as an emergency on Monday. When I went to see him he looked dreadful.

He was stabilised, and given more transfusions and tests but it wasn’t until Thursday that the working diagnosis was AA.
Meanwhile, I’d been frantically reading everything I could find about pancytopenia, looking at his blood test results, working out that the WBC was way too low to be Leukemia or lymphoma but nobody would tell the patient, or family, anything much at all. It was utterly hideous and terrifying, and I’m only at one remove, how much more dreadful it must have been for my brother and his wife.

So your story here has been a godsend. I’m going to tell my family about your blog and let them know that it is here when they are ready to look. It’s been such a shcok and because of the reading, I’m a week ahead of everyone else in the family.

I hope that your supportive treatment and your family and friends continue to help you and I’m sending you very best wishes for strength and healing from here in the UK. Thank God we have free healthcare in the form of the NHS (National Health Service) – your struggles with the system are awful to read about and can’t be helping things.

Sorry to hear your brother was diagnosed with AA, but at least he has knows the issue now, and he has the peace of mind that it can be treated. For me those few days the doctors stared at me with blank faces and said “we don’t know what’s wrong” were the worst.

Please do not hesitate to e-mail me with any questions, concerns,etc.

And please give your brother my best. Great that he has family to support him, it makes it that much easier.

-MCS

I’m starting at the beginning with your journey.

My bro was diagnosed with AA today.

I’m greedy for info, there’s a bunch of med stuff online but few real patient stories.

So thank you for writing this, and godspeed.

Insightful stuff, keep it up.