Toast Forum?

[Markitect]

Hi fellow AAers,

I know a lot of you are members of the Aplastic Anemia Toast Forum. I have been trying to log onto the Toast Forum for a few days now and have not been able to. Is anyone else having this problem?

Quick update. I am now getting transfused when my Hgb falls below 10. I cannot describe how much better I feel and how much more energy I have since beginning this new transfusion regimen. In case you don't know, I was becoming symptomatic when my Hgb fell below 10 and was making myself wait until my Hgb was in the low 8s to get transfused. This did nothing for my quality of life and when I finally complained to my doctor about it, he wrote an order to transfuse me at 10. So, if any of you are trying to be the "good" patient I was trying to be, stop. If there's one thing I have learned from AA, it's that quality is far more important than quantity.

Since beginning this new transfusion regimen, my transfusions are lasting longer by several days. They were lasting 10-12 days and are now lasting a solid 14 days. My platelets seem to be creeping up since receiving Campath in July. They were 7,000 on 9-11-06 and I was transfused. They are now 13,000 and I haven't been transfused since the 11th. My whites are low, but holding around 1.0.

Best wishes to all of you. Take care,

Mark

[Lisa V]

Hi Mark, I haven't been able to log on to Aplastic Central either. I had the forum page bookmarked, but now when I try to go there what comes up looks like the home page, and up in the box where it says "Forum" it says "temporarily unavailable". Not sure what's going on there, but this has been going on for about a week now. Since that part of the site is managed by Toast Forums, I don't think it can have much to do with Bruce or his current state of health, but you could email him and find out.

In the meantime, hopefully some of the others will have registered here too, and we can continue.

I'm glad the new tx regimen is working out better for you. I sure hope the Campath will kick in and you won't have to do it much longer! I can't remember if I asked you before, but did you ever try Procrit or Aranesp?

[mo_shane]

the toast forum is back up. i was just doing my rounds tonight and saw it was working. there is a note from bruce about it being down for a while, so you might want to take a look now

i think you made a wise decision there mark, to opt for transfusions when your hb falls to 10. i know the protocol on my son's ward was to transfuse at 9, but because he wasn't symptomatic, they tended to leave him until they fell to about 7. keeping in mind, unlike you, he wasn't going out to work, just resting in a hospital bed.

take care,

gina xxx

[Bruce Lande]

Aplastic Central Forum is back on line and we didn't lose anything.

[Brittany]

Hi Mark,

I had the same transfusion regimen as you do when i was sick a little over a year ago. Most people i know of don't get transfused until around 8, sometimes even lower than that. However, I started feeling symptomatic right around 10 and insisted on getting transfused around then. It certainly improved my quality of life. Sometimes it seemed to me that my doctors just saw me as a patient and not a person...they assumed that just because most people can hold off for transfusions for longer, that I should be able to as well. That always got to me but i insisted anyway. I'm glad i'm not the only one! Take care, I hope things are going well for you.

-Brittany