Bruce ([info]aplastic) wrote,
@ 2008-06-23 12:47:00
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June 23, 2008
Just finished a much needed refresh of the website at http://aplasticcentral.com. Cleaned out a bunch of junk that had accumulated, fixed broken links and updated the entry pages. If anyone actually reads this, please leave me a comment. I really wonder if anyone uses the website anymore. The forum also seems to have much less activity than it did in the past.

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User of your infomation
(Anonymous)
2008-06-24 12:51 pm UTC (link)
Bruce, I wanted to let you know that I check this website almost daily. My Dad has just been diagnosed this year and I have been able to relay quite a bit of information to him to share with his doctors. There is not another site that I've found where there is so much information. Unfortunately my Dad is not a candidate for BMT because of his age and is transfusion dependent at this point, but we have been glad to find information on diet and practical information about the medications he has been prescribed. Thank you for providing this site.

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(Anonymous)
2008-06-24 07:56 pm UTC (link)
Hi Bruce....I do think it's referenced quite a bit by those recently diagnosed or for those whose treatment hasn't quite worked as planned. However, I think more people set up their own blogs or caringbridge sites and don't post as much on AA central. As much as I am interested in how people are progressing, it's very rare that I will visit everyone's personal site to keep current with them. AA central provides more than progress updates...it provides the collective experience and insights of many knowledgeable people. I have found and continue to find this site very helpful.

Thank you....Marlene

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I still check!
(Anonymous)
2008-06-25 04:02 pm UTC (link)
Hi Bruce:

I still check in often (mostly on the forum), but it's like you mentioned a while back, lots of things have already been addressed before. Plus for me, I tend to leave all the medical statistics and drug comments to the others since they would have more authority on those than I. You know I haven't gone that route, just the supportive care part.

Personally, if you updated on your blog more, I'd remember to visit it more often, hint, hint. . .

Okay, you take care!

Marla

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thank you
(Anonymous)
2008-07-01 03:28 am UTC (link)
My husband was diagnosed with SAA about two months ago. His sister and I hit the computers to find out any information we could find on AA. This was the only site that we found that had people telling their stories. At the time we needed it most it helped. I must add it was this site that made his sister and I realize how serious this disease is. You don't get the full picture sometimes, but on this site it was nice not to have it sugar coated. So thank you for having this site.

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I too still check!
(Anonymous)
2008-07-29 03:34 pm UTC (link)
This site was one of the first I found when I was diagnosed several years ago, and I still have it bookmarked. I'm so glad you're posting again-- I was beginning to think the worst! I have reached a "new normal," and am stable (I have RA). I read the Marrowforums site too, but I like your style. And I hate to do drugs. Love to you from, --Tavia

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Thank you
(Anonymous)
2008-08-17 06:18 pm UTC (link)
Haven't been on much lately, but appreciate your information. Keep up the good work!
Deb, daugher of Paul (76) diagnosed with SAA in 8/07, 2 ATG treatments, transfusion dependent, platelets weekly, RBC every 2 weeks. We believe the SAA was caused by cyclophosphamide (Cytoxan) which was used to treat vasculitis in June 07.

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journal keeping
(Anonymous)
2008-10-21 06:05 am UTC (link)
Bruce,
Your website has been such a vital part of my life. My dad has been diagnosed one year ago with AA, and just reading about your journey has enabled me to give him much insight, strength, and information about you.
Right now, we're battling with whether to take him off cyclosporene
( 2 docs. say we should - yet one VERY important one says we shouldn't). He's often weak and energyless.
Any input would be great.
Thanks again.

Dorit
dyaron@yahoo.com

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