Hi and a bracelet question

[XtremSAA]

Hi,

Happy to have found these forums, as I have been diagnosed with Severe Aplastic Anaemia as a complication of a Thymoma. I'd previously had PRCA for a few months, but it's only been a few weeks since my platelets/neutrophils starting dropping like a stone and I'm already averaging platelet scores of 3 and my neutrophils are down to 0.4 and dropping. With marrow cellularity of <10% the expectation is that my neutrophils will continue to drop and that I'll soon have a 'Very Severe' diagnoses.

Due to a whole bunch of complications, it looks likely that treatment options will be very limited, so the prognosis is not good.

I'd like very much to get a Medic Alert bracelet sorted but I'm not sure what text to put on it about my SAA. I'm thinking along the lines of "Aplastic Anaemia: low HB, low platelets and Immunosuppressed" - but I'm not sure whether there are standardised things that emergency services are likely to recognise?

Any advice would be gratefully received.

X

[rar]

If you go to an emergency room Immunosuppressed is probably the most important. I have a card from my doctor that I used twice. It got me in a bed in the isolation ward in less than 5 minutes, bypassing the waiting room entirely. With no immune system the waiting room is the last place you want to be. Get a card in addition to the bracelet.

Ray

[Neil Cuadra]

XtremSAA,

I'm sorry that your circumstances aren't better, but you are wise to be prepared.

Information on a bracelet should usually include:

• Contact numbers (family member and/or physician)
• Your diagnosis: aplastic anaemia (or severe aplastic anaemia)
• Any allergies you have - important for first responders and emergency room staff

The people who read this information will have medical training, but may not know much about aplastic anaemia, so your idea to mention blood counts makes sense to me.

Some people think they should put their blood type on their bracelet, but I read that your blood type would always be checked before a transfusion, so that there's no need to list it.

I don't think there's a standard you have to follow, and it's tough to put all that information in a limited amount of text. I'd suggest "low CBCs; neutropenia" rather than "low HB, low platelets and Immunosuppressed".

It's also smart to have your most important medical information on paper where it's easy to grab (e.g., by the phone or in a wallet). You can include more details there. If you're unconscious and nobody else is around, your bracelet may be critical, but in most cases you or somebody else can have your paper with you or tell someone where to find it.

Some people keep medical details or ICE ("in case of emergency") numbers in their mobile phone as well. That's handy if you want to look something up yourself, but not as convenient for other people. I wouldn't assume that people would think to check your phone during an emergency and would know how to find that information.

Let's hope your bracelet is never needed.

[XtremSAA]

Thanks guys. Useful information!

X

[MtnGal]

Hello XtremSAA,

Neil, and others, had some great suggestions about what to put on a medical alert bracelet as well as what to carry in your wallet and put on your cellphone. Hopefully, you'll never have to use any of them, but good to be prepared.

I just pulled out the alert bracelet I had when I was first diagnosed with VSAA and on it I had: my name, diagnosis, my doc's phone number, my husband's phone number and "high bleeding risk." While all three of my cell lines were ridiculously low (can you say a neutrophil count of zero?), the bleeding risk from low platelets seemed to be the most critical thing for an emergency responder to know if I was in an accident.

I was also diagnosed with a thymoma (a year after my VSAA diagnosis), so would love to chat with you about that. Send me a private message if you'd like.

Joyce

Diagnosed VSAA in Nov, 2012;treated w/ ATG+Cyclosporine; relapsed in Jan 2014 after taper and again Feb, 2016. Currently on 75 mg cyclosporine 2x day.