especialy to Andy question abt chelation

THANK YOU Andy, Manal, Sharmin and Sajid  for the encouragement as i said many time that , your encouragement mean alot for me ,and iit show's its role in better results .... thank you for being with me since my Ferritin was a little above  to 13000 ng/ml .... its your encouragement that pushed me forward to start and cary on chelation agressively ...AGAIN THANK YOU ALL ...KEEP ENCOURAGING .. i need it ...

best regards
take care
Umair

That's wonderful Umair,well done,it was not an easy task, but you did it .

Zaini.

Umair,
Congrats!!! My ferritin was not soo high, thank God, and I had similar success!!!! Combination therapy really rocks!!!!

@zaini
Absolutely Sis …
It was a little bit difficult to start, but then it become like a routine exercise…you people encouraged me and pushed me forward to do make it possible ,, soo you All r equally creditable for all these results.. bcoze of your and all peopple’s encouragement  it becomes easy to achieve thisferritin levels. … 
It wasn’t an easy task but BY THE GRACE OF ALMIGHTY    it becomes very easy…..and it worked realy fast …

Take care
Umair


@ thal girl
thank you for the compliment ... yeah combination therapy  make's the things easy for me ... and thanx God not side-effect from defferiprone throghout 2 year ... but now .my doc is planning to tunr me on exjade ( when my ferritin will touch 1000 ) ....

Take care
Umair

That's great! I hope you get Exjade/Asunra soon so that you don't have to face the needles all the time.

yeah it is ... after crossing many milestones, finaly i m near to reach the destination THANX GOD ...
thank you buddies for encouraging me to made this possible ....
shuuh.....

take care
umair

WOoOopSs....!!! it my Latest Ferritin  report done on 15-oct-2008 ... i don't know wat happened   


                                                    Normal range (for my age)                         Result
Serum Ferritin                                      30 - 400 ng/ ml                                3613 ng/ml

 

I am so sorry Umair but may be you should increase the dose? What did the doctor say and have you been talking more blood lately?

I would like you too to ask the doctor about taking desferal IV for a while, i once heard my doctor saying that in some of her patients when the ferritin is so high, they come to the hospital everyday for a while  and take it IV and they decrease a 1000 in a month. Please check this and let me know.

Also did you ever did an MRI (ferriscan on the liver)??

But anyway, i know that you have high determination and even if the readings are not good this time, you will be able to achieve the desired levels. Trust me you will make it and we woill have a lot of time celebrating this, You were in the 9000s and see where you are today, be sure you will make it and keep it down

We are all here for you my friend

manal

Hello,
so sorry to hear this.. but dnt worry
i know you can do it dnt loose your hope, plz take your chelation properly..
may be there is any mess with your report..
b'coz it hppnd with me two or more times..

first day result was-6000
next day -7000
after 4 or 5 days-it was 710(so confusing)
anywaz don't worry you will achieve that level
you know before 5 or 6 year my ferr. lvl was 26,000..
 just blv u can do it.

Hi Manal Sis ,
Thanks for the Encouragement , its mean alot for me .. it push's me forward to comply on my treatment plan ... thanks alot Sis ...

the only difference i found between my previous tests  andthis one , i never ever gave time more than 9 hours between chelation and giving blood sample for Ferritin test but this time i stopped desferal 4 and Ferriprox 3 days before the giving the sample , ... i think thats why it comes a little high but accurate result ...

Also did you ever did an MRI (ferriscan on the liver)??
I would like you too to ask the doctor about taking desferal IV for a while

i mentioned in another post that i m planing to pay a visit to my Doctor on this Friday to discuss my Reports and treatment plan ..  Ferriscan is not available anywhere in Pakistan , i m planing to talk to my doctor about Ferriscan as well .... About Desferal IV .. everytime i when got have Tx i also have 2 desferal Vials IV with blood ... but i will think about having it at home as well as you mentioned it is more beneficial .....

What did the doctor say and have you been talking more blood lately?

i will talk about it to my doctor bcoze my Tx need is increasing as well .. last time my pre-Tx Hb was 8.2 its realy low .. i iwll talk about it to my doc .. and i will say ask her to add some Vitamin Tabs as well ... i like new meds hummmm :P hahhaha .....

@ Anie
Sis , its not a lab fault  , it is accurate report bcoze i had a few back to back Txs in last 30 days and less Chelation bcoze you know about the Sajid that news disturbed me alot and i skipped my chelations for a while and aside my chelation plan , after that i had to stop Ferriprox bcoze of stomach ache ... Sooo i thnk Lab Report is reflecting the accurate image of my Ferritin Levels ... but i assure ouall people i will cover it realy soon ... and i willl take it down By the GRACE of GOD realy soon .... As Soon As Possible ...
------------------------------------
Thanks for your Concerns
Best Regards
Take Care
UMAIR

It's ok Umair
you will improve so soon..we are waiting
just take your chelation proper..nd you will find result as you want..
Don't worry, up's and down's are the parts of the life..
Take care.. GOD BLESS YOU

Okay Umair, since we know the reason, we can overcome it and please remember that compliance is the most thing Sajid would want you to do.

And i thing that this idea of taking desferal IV would help you a lot

take care
manal

Thanks alot Anie & Manal ,,
i will try my best to comply on chelation and maintaining my HB ...  and also to star chelation IV  ... lets see wat happened ..... hope i wil get better than the best results..... i dont know why but today i m missing Sajid alot . and tears are coming in my eyes again and again ...  i dont know why ......

Dear Umair,
   Some days are difficult, healing takes time my friend.  But for the sake of those very people who we have lost my friend, we have to continue the legacies that they have started.  We have to take care of ourselves and our friends the way they have taught us to. 

You have come a long way, as Manal said, and you are holding on the a much lower ferritin level than you were earlier this year.  There have been some set backs lately and so we understand why the levels have not come down as we would like for them to - but they will.  You have seen success, and you know that it is possible.  As Manal has said, some people do get admitted to the hospital and get IV desferal around the clock.  In fact patients in North America sometimes get 24hr IV chelation for periods of time to get rid of iron overload.  Please inquire about this procedure, you may be able to improve the situation in leaps and bounds. 

I am very proud of you and Sajid would be very proud of you too.  Despite the pain you have felt in losing your best friend you have continued urging everyone on.  We need to take this pain and Sajid's memory to do something good.  I know that you can do it.  Just as Andy has done, he took the pain of losing his friend and little sister - did something so constructive and good - we are all here because those efforts and so many people have a better chance at life because of them.  We are all connected by that very effort that Andy has made in honoring his friend.  I am deeply inspired by that, we need to work hard and learn from that courage - we need to use these emotions that we feel for our lost friends to fuel our efforts. 

Sharmin