Hi everyone!

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.    Pretty funny how the mind works.   

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!   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 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! 

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. 

Thank you, Andy.    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.     

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. 

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! )
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

Danielle,

Its so nice hearing from you,we do miss you,you are a trooper,an inspiration,i am so happy about your ferritin and i hope all other issues will be sorted out soon  .

Much much love 

Zaini.

Come on Danielle ... its really happy to b around ... and evem if ur not there it doesnt means ur faded in our memories ... life in general is a busy one things keep on crashing and busting on ourselves and they get trippled if one has thal. No problem mate, just whenever u get a chance get in here and u'll get lots n lots n lots of hugs n kisses ... whenever v need sum1 to hear to us when v r emoptionally upset or so. i guess this place wud give u much comfort. Life goes that way chill mate

I've been through the same things hehe, so I know how hard it can be, but am really glad that you are back again

You were missed by a lot. Glad that you are doing well and your ferritin is low.

Cheers

Danielle,

I am so happy to know about your ferritin, you are doing an excellent job my friend.Keep it up


Andy

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

Thank you for understanding

Congrats Danielle ... i'm really happy 4 you ...   ..... ... its really nice to ssee u again .... may God bless u


Umair

You guys are the best.  I wish I could get out of my funk, because you all make me feel normal, which I definitely haven't felt at all lately.  It's so nice to have people who understand what you're going through. 

I have missed you guys dearly.  I just want you all to know that I will always love and care about you, and my absence has nothing to do with you guys.  It has to do with me, personally.  I have been disengaging a lot from people, even the people who are in my every day life, and I'm trying to get back to myself again.  Part of me feels very lonely, even though it is me who is hiding from the majority of the world.  I've also felt "doomed" lately, and it's such a horrible feeling. Even though I am doing ok health-wise, I still feel like my days are numbered, and I hate that feeling.  There has been nothing to suggest that I won't be here much longer, but in my crazy mind, I feel like that is the case.  I miss being in my 20's and I dread every upcoming birthday, even though I am happy to see another birthday.  I have such contradicting feelings.  But anyway, I will be ok, this is just another hurdle that I have to get over.

You are all my heros! 

Danielle,

You are right,its just another hurdle,and you'll get through it,coz our prayers are with you, .

Zaini.

Danielle i... i would just say that " live the life you should live, till u r alive ". Everone has to die, who knows i may die before you? No one can hide from it. But what we can do is "live as joyfully and as happily as we can until we are alive".... bruce lee died at 30  he was a very fit person with many weird records out there... but in those 30years he made his name in the history... cheers mate

Waleed,
very well said , buddy !!....

Umair