AA Update

[kjraimondi]

Some good news: For the first time since I was diagnosed with AA in September 2011 my platelets have gone up on their own. From 16k to 17k to 20k. My RBC is still stable at 8.6 (last two months) and my WBC has been stable at 2.2. They aren't great numbers but praise God that there is some positive momentum.

Still on track for a MUD BMT but if my marrow can have a turn around here I might be able to avoid one.

Thanks for your thoughts and prayers. Another CBC Monday... Lets see more positive momentum!

Ken

[triumphe64]

Ken,
I hope we can see you on March 24th.

http://www.aamds.org/community-event...ure-5k-runwalk

[kjraimondi]

Me too!!

[Greg H]

Hey Ken!

Congrats on the uptick! May it be the first of many to come.

Take Care!

Greg

[julestheo]

Great news onward and upwards! God Bless

[dfantle]

Hello, I hope you don't mind my asking a few questions. I'm fairly new to the site & recently diagnosed with AA following a few other health issues the past 1-1/2 years, including a SCT in March of 2011 (using my own stem cells).

1. Have you had any other treatments since diagnosis other than the low dose cyclosporin?
2. Have you made any dietary or fitness changes since diagnosis?
3. Are you taking any supplements?

Thank you

[kjraimondi]

I had horse ATG in september. I haven't made any diet changes but have always eaten relatively healthy. I used to be a runner but have had severe fatigue and haven't exercised at all outside of normal walking to and from places. I hope to start biking or something.

[dfantle]

Thank you Ken.

[clairekim]

Hi Dena,

If I may, I would like to share with you what we have done to help my wife recover from SAA. I just left a post about my wife, but she's been improving very fast until recently. Her counts started to move downwards but not sure if this is something to worry about.

Just like everyone else, we researched so much thinking that there's a way to help her improve by changing her diet. We found out that there's really no clear answer to this. And no one will/can give you that answer. So we ended up picking few things that we thought we can handle and stayed consistent with it.

1. Some people have said that Shark Liver Oil will help. We got some from this company called Vitamin Warehouse in New Zealand because someone mentioned that New Zealand one's are the best. It costs few times more and alot more for shipping fees, but we still went for it.

2. She stopped eating out completely. Any processed food was avoided. We tried to keep on strict natural and organic diet. She had meat once a week (organic meat that is) only.

3. Every morning, she (and now every member of our family) will drink one cup of a vegetable mix prepared the following way:

The night before, we put a small cup of black beans in clean water. Early in the morning, we add in small portions of broccoli, lettuce, carrot, red pepper, lotus root, and beats and boil it for 10 minutes. I then mix it using a regular mixer.

4. We asked her to rest as much as possible. She was so fatigue at one point that she couldn't even stay up. Now she's so active and is getting ready for light exercising as well.

5. Nothing bad in her diet (caffeine, sugar, etc)

Hope this helps. Again, I can't say if any of this helped her but we would continue to do this regardless. Wish you the best.

[dfantle]

Thank you Ken. I really appreciate your sharing this.

I hope your wife's counts start to improve again quickly.

Best,