This is an Email I sent to ask the AA & MDS organization … if we can get in contact with Mark… after reading his article… Aaron and I loved his frankness and kind of ironic way of writing. We thought that being in contact with him might be a good thing.. It could help with the way Aaron is feeling at the moment.. very disheartened… Little to look forward to.. No bench marks to achieve… as all times he has tried to reach them his body has rejected the BMT transplant… There are times when he has said, “how much pain does one need to go through till they have had enough?” “I really hope that I don’t wake up in the morning.” “I’ve had enough!” “I’m giving up now.” Perhaps that is just what he needs.. to get in contact with another who is in the same peculiar situation…. We will see how it all goes…
Hi Beth,
I just wanted to let you know that I am grateful for the efforts you guys put into AAMDS!!! It is great to read things that are in the workings etc.. so my husband and I (although in Australia) can keep a look out for...
I just received the latest newsletter about "My Turn" essay by Mark Schreiber,... I was impressed by his article... It made me feel like he really would understand what my husband is going through... I was wondering if my husband could get in touch with him.. cause he sounds like he would really get along with my husband... He writes down to earth.. and kind of ironically..
My husband often feels very alone!!! He knows no one understands much of what he has gone through... It would be really uplifting for him to talk to someone who has felt the same.. who is older and may have a better recollection of what they (as individuals/patients) go through...It's really hard to find people who have gone through something similar... Mostly because SAA patients are so few and far between and also you are not 'allowed' to know medical details of others so you can't even ask if you can be put in contact with someone in Australia that might have SAA... He is quite discouraged at this time as it has been over 2 years since diagnosis and over 18 months after Alo BMT... He was told he should be back at work one to 2 days at least at the 18 month mark.. and now it seems like that may just be a dream... he often tells me that he feels worse now (post BMT) than when he was blood transfusion dependant!!! he had hem levels ranging from 58 - 85 and platelet levels that would zero out frequently... now his platelet levels are round 120... (normal) and his Hmg is round the 100 -130ish... And it's hard for even the Dr's to understand the symptoms and feelings associated with the disease... let alone all the friends who we try to explain things to.. He is rejecting the BMT for the 6th time at the moment... and is very disheartened.. you know he's like on the roller coaster… up there for a bit but drops fast.... and gets back up slowly...with a lot of pulling... I just thought that perhaps it would be good for him if he could make contact with someone who fully understands...
It would be lovely if this was possible...
Thanks again… Ursula James
