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Hi everyone!

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Danielle:
I'm still around.  I've just been blocking my life a lot, which I know isn't good, but don't worry I'm still taking care of myself!  The combination of Desferal and Exjade was a success, and my ferritin became low enough to take away the DES back in Sep/Oct '09 and just keep the Exjade, which has been AMAZING.  I never thought I would see the day where I wouldn't have to wear a pump, and even though it has been 6/7 months without it, I still wake up during the night and feel like it's attached to me or that I'm rolling over on it.  :rotfl  Pretty funny how the mind works.   :teehee

My dose of Exjade has just recently been decreased, actually, because my ferritin dropped too low, which I NEVER thought I'd hear in my entire life, because it always seemed to stay in the 2,000 - 4,000 range.  It is now 295! :faint  I had my T2* and SQUID done and the levels are all in the normal range, which I was very happy and surprised about!

So, other than that, I just moved, so I was busy with that chaos, and other things like transfusion reactions and heartbreak :sadyup but I'm doing a little better now.  :)  I was having reactions again every time I went to get blood, so I fought like crazy to get switched back to washed cells and now I'm ok, but need to get a boost every so often, because there aren't enough cells in the washed bags now to keep my counts up after two weeks.  So, sometimes I go for a boost after one week.  The reactions were terrible, so I'll have to deal with not getting enough blood or going more often for now.  :-\  I guess my body just cannot handle the proteins in regular leukocyte depleted blood anymore.

Anyway, I'm just trying to deal with things as they come and not dwell on stuff, but being a person with obsessive compulsive disorder and anxiety issues, sometimes it's difficult.  I'm alive, though, and I'm very grateful for that, so I refuse to give up in the name of those who died fighting.

I miss you guys and hope you are all hanging in there!  :hugfriend

Andy Battaglia:
Hi Danielle,

I'm really happy to hear your ferritin is so low now. Combination chelation is the fastest way to get it down. It takes some work but it's really worth it and the reward is better health and less chelation. We have some members here who can use some encouragement and I hope they are inspired by your efforts and results. Once again the desferal/Exjade combo has been shown to be safe and effective, so people, tell your doctors that even without official trials, many patients in the US and elsewhere have used this combination with good results. For those dealing with a high iron load, combination chelation is the way to go.

Pop in when you can, Danielle. It's always great to hear from you.  :hugfriend

Danielle:
Thank you, Andy.  :hugfriend  Many people are frightened by the combination therapy, as I was myself in the beginning, because of the fact that there haven't been studies behind it, and because of the warning label stating not to use any other form of chelation therapy, as you already know.  However, it was worth the shot considering that after everything I've done to get my ferritin down (high levels of DES, in both subq and IV form, sometimes 24 hours a day) just was not working.  My ferritin just would not get below the 2,000 range, and it seemed like it just kept increasing over the years.  The combo therapy really works, but the person MUST make sure that they are being monitored closely by their doctor and have routine blood work to monitor kidney, liver, etc. function, and even make sure they keep up with their eyes and ears as they did with DES, but more-so with Exjade, as it started to affect mine a bit more with the Exjade.

Yea, I'm sorry, Andy.  I will try harder to come back around more.  I was just not emotionally or mentally capable for a while.  :-\   :hugfriend

Andy Battaglia:
Danielle,

One important thing I learned from Lisa was to never have expectations from those with thal because I cannot ever walk a mile in their shoes and understand their lives. I knew that whatever Lisa gave this group was a bonus and I never had expectations that she should do this or that. She did what she could. She loved this group but for those who have to deal with thal every day of their lives, you can't expect them to immerse themselves in a group about thal. Lisa came here when she could handle it physically and emotionally and I learned that is how I have to view every thal and every parent dealing with their child's thal. They come here and give what they can when they can, but we can never have expectations about what they should give. It just is not realistic. I know you come here when you are up to it and I never expect anything more than that. I feel the same way about our moderators and I want them to know that I never want them to feel bad if they can't be here as much as they would like. I don't deal with thal in my personal life, so for me, coming to this group doesn't mean immersing myself in the same thing I deal with physically.

I hope everyone understands that whatever they bring to our group is a bonus. Don't ever feel bad about needing a break.  :grouphug

Madhavi:
Danielle....
Members on our group are like joys in disguise....they are always welcome, arent they?
I was wondering where you were....but glad to have you back.....
Like Andy has put it so well....all of us here have so much to give and deserve a break once in a while to collect some more of us from within ourselves and have more to share!(That must be the mother of all sentences! :rotfl)
And special thanks to Andy, not only for being understanding but also reminding us to do the same!
Glad to have you back Danielle.....hope you are in the best of health.....
Love always,
Madhavi

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