Random thoughts from a severe preeclampsia survivor and two time NICU mom who passionately believes in helping to find a cure for her daughters' genetic disorder: Alpha-1 Antitrypsin Deficiency.
Monday, August 14, 2006
All Pink and Beautiful
DeAnna is doing well post liver transplant. She is so beautiful with such beautiful white skin and eyes. What a beauty. Her mom and dad are just beaming right now.
2 comments:
Anonymous
said...
Thank you for finding me on the web. Since I wrote that post, my sister-in-law, who is a doctor, has found a ton of studies and literature that she brought to me. She sat with me and explained it to me and explained the ramifications of my liver panels. What it all boils down to is that my lung function is decreasing but thanks to the fact that I exercise religiously, I actually have the lung capacity of a perfectly healthy 40 year old (I'm 32 btw). Also, my liver is slowly going downhill as well, but once again thanks to my fitness level, my liver is in pretty good shape. My problem is the sytemic nectrotizing vasculitis, which was and is my primary symptom of Alpha-1. It is rare that this happens, but when it does the studies show that it means the vasculitis has a tough time responding to standard treatment...as has been the case with me.
I am definitely going to spend tonight and tm reading through your blog and your side links. Thank you once again...it was beginning to feel like I was sort of alone in this.
2 comments:
Thank you for finding me on the web. Since I wrote that post, my sister-in-law, who is a doctor, has found a ton of studies and literature that she brought to me. She sat with me and explained it to me and explained the ramifications of my liver panels. What it all boils down to is that my lung function is decreasing but thanks to the fact that I exercise religiously, I actually have the lung capacity of a perfectly healthy 40 year old (I'm 32 btw). Also, my liver is slowly going downhill as well, but once again thanks to my fitness level, my liver is in pretty good shape. My problem is the sytemic nectrotizing vasculitis, which was and is my primary symptom of Alpha-1. It is rare that this happens, but when it does the studies show that it means the vasculitis has a tough time responding to standard treatment...as has been the case with me.
I am definitely going to spend tonight and tm reading through your blog and your side links. Thank you once again...it was beginning to feel like I was sort of alone in this.
Oh...and I am a PiZZ (blood level 17).
She's gorgeous! So glad her transplant went well :)
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