Hey dkimmel:
I am so sorry for not seeing your response to my initial post. I am such an email person and keep close contact with many AA patients directly through that. If you are up for it, I posted my email in an earlier post.
As you know, the best comfort is always given by those who have blazed the trails before you so I thank you for the encouraging words. I truly hope that your PNH can remain controlled and you don't have to move on to a BMT. But if you do, you are in good hands at Hopkins. I was recently communicating with Dr. Brodsky and he mentioned they were having tremendous success controlling GVH using cytoxan. As time passes, the success of BMT's just keeps getting better & better.
The only advice I have is looking into reducing your toxins and increasing your anti-oxidents. I know many of these steps may seem a bit theoretical, but even if there is a "slight" chance we could prevent Kathryn's body from developing a clonal disorder, I am all for it.
1. Eating lots of blueberries. (anti-oxidents)
2. V8 V-fusion with Acai & Blueberries
http://www.v8juice.com/Products.aspx
3. Tons of Green veggies: Broccoli, Spinach, Brussel Sprouts, etc...
4. Walnuts - Omega 3
5. Flax Seeds & flax seed oil - Omega 3
http://www.usatoday.com/news/health/...-01-omega3.htm
6. Nordic Natural's Omega-3 Fish suppliments.
http://www.nordicnaturals.com/en/Gen...oduct_Line/66/
7. AVOID SODIUM NITRITES IN MEATS LIKE THE PLAGUE.
http://www.grocerywarning.com/
8. Avoid Hi-Fructose Corn Syrup & Corn Syrup
9. Using safer sun screen & bug repellent.
http://products.mercola.com/summer-survival-kit/
Sodium Nitrite is a know carcinogen and has been in deli meats (hot dogs, sausages & MANY deli meats) for years. The Univ. of Hawaii conducted a recent study linking SN to a 67% higher chance of getting Leukemia when consuming a monthly amount of sodium nitrite equivalent to 12 hot dogs. So when you are eating that turkey sandwich from the deli and thinking you are eating healthy, check to see if it has SN. I was shocked to learn how well known this carcinogen is and yet we still pack it in to so many foods.
I do pray every day that Kathryn's ordeal is behind her. Yet, there is that demon that lurks in the shadows that we will never be sure if/when he will jump out at us. This is where our faith comes in to play.
Please let us know if you have found out any specifics as well. Besides being a great place to meet others in your same situation, this forum is also an incredible place to share information.
Hope to talk to you soon. I will check this forum more often.
Bill Chenaille
bchenaille@comcast.net