especialy to Andy question abt chelation

I think one of the most important things we can learn from Umair's experience over the past year is how much the quality of life can be improved by proper compliance. Thals do not need live lesser quality lives because of thal and they need to understand this very important fact. Knowing this can lead many thals to take far better care of themselves and have a much greater optimism about their futures. This is a message we need to emphasize over and over, as Umair has been doing with the local thals he knows. Don't allow yourself to believe that you should accept anything less from life than any non-thal would. A good life is there for you if you are willing to do the work.

Well said Andy....
We should never expect anything less  and we can do it!
Umair is doing a great job. :congratsto you our buddy.
All of us are capable of great things.

@ Andy,
  you r right .. we can controle iron if we determine strongly to controle... when i started chelation i was neve thought i would get these results ... to you buddy ...

@ Cheriean,
 :thanx Cheriena  for the complement and encouragment ... you're right we can do everything, and we should never expect anything less, this is wat keep you moving ahead always ... i hope you're doing fine and enjoying your life there .. and having good days and doing job as you wish to do ......

Best Regards
Take Care
Umair

Congrats!!! Friday it's my turn. I don't expect great results. I had to quick and a blood transfusion. I restarted 4 days laters.
  I am glad for you & together we can do it.

Best of Luck , Dore ... i hope that your Fe results will be better than mine. .. Thanx alot for encouragement  , Yes we can... we can do it ...

Best Regards
Umair

Good luck Door, You will do great!

Umair thanks for your comment too. I am enjoying my life and loving my job with the children. I know nothing is easy and at times it can be a challenge.  But I have learnt that nothing worthwhile ever comes easy. Hehe.
Keep up the wonderful job you are doing.
 

Note :
its my post Regarding to my an old post about long IV Desferal session .. this one :
http://www.thalassemiapatientsandfriends.com/index.php?topic=1689.msg28206#msg28206
-----------------------------------------------------------------
Hi ALL,
i just got to know that Canula must be change after 3-4 days , i dont know that just got to know , after that when i checked the site where i last time had the Cannnula on my left arm  there is still  a lil hardness under the skin ... vein is invisible .... when i putted off that iv and finished that 8 days long session iv was in running condition there was no clot but there was a lil redness on the site where Canula was pricked .. i dont know details why canula and side should be changed after 3-4 days but i m convinced to it , as it is a rule taht hospital follow's .... find whether u r going to believe it ot going to find out the reason, please let me know abt your opinions ...

Best Regards
Umair

Note :
its my post Regarding to my an old post about long IV Desferal session .. this one :
http://www.thalassemiapatientsandfriends.com/index.php?topic=1689.msg28206#msg28206
-----------------------------------------------------------------
  there is still  a lil hardness under the skin ... vein is invisible .... when i putted off that iv and finished that 8 days long session iv was in running condition there was no clot but there was a lil redness on the site where Canula was pricked ..

Best Regards
Umair

Umair, when I was around 6 years I had subcutane (sp?) desferal through my belly. After a few weeks there was a lot of hardness which makes it me unable to bend.
I think it means that your body do not take all the desferal, but I dont know of that's true.
Because of that I had to stop with desferal. Maybe you could try to change the place from time to time so that parts  of your skin has some time to recover. Just a thought.

Dore

Dore,
long Chelation session make the skin hard and redish , i think it could bcoze of consecutive water flow in that place ( i mean, cosecutively drops after drops ) .. that make the site hard. .. i expereinced that hardness and redness on Sub-q site of chelation after long sessions of chelation , but i was intersted in getting down the Fe so i never think serioously abt that, n i m not gona think untill i get Fe under 500 no matter wat happens .... ut here i m talking abut IV desferal , that is a lil serious matter as there is vein (line) is involved in it, Doctor said that long IV seession on same site with same needle and prick could damage Vein (line), and i was tallking abt my experience that it has been 3 weeks since i never had any IV session but my skin of that site and that site is not back to normal ..... thats wat i wana say ....  

Dore,
thanx for sharing your experience and making it easier for me to explain wat i wana say in more details...

Best Regards
Umair

hi!
   your ferritine report is gr8   there are already perfect replies i have no words to encourage u..............but we can do every thing as all other members said.best wishes 4 u.
take care
laiba

Hi Laiba,
  , thanx alot for posting here ... yes we can ... i think you know about TSPs K2 Base camp expedition in which thals particpated as well ... so, yes we can do everything ( see who is saying this, a person who just back after creating alot of drama here on forum ( feeling embarrassed and grinning at the moment   )

Umair

I started wednesday night. I mean restarted. My first dose is 375mg and i am planning to rise it up to 750mg at Saturday. Wednesday i wiil ask for the reports to see of I should bring it up to 1000. Be aware for more related posts. Got stupid side effects, like SLEEP and pain.

Its not the right place but within 2 weeks we hear of the big sister of 5yr old pkd patient is the donor. Her bmt is planned at the end of this year. At this moment suffers she from gall stones pain now. She is my little hero.

Dore,
i hope everything will go fine at ur side ....

Hi All ,
here's another update :

Latest S.Fe Report  24-07-2009
                                                    Normal range (for my age)                         Result
Serum Ferritin                                      30 - 400 ng/ ml                         [bgcolor=#ffffff]1299 ng/ml[/bgcolor]
it was just next day to the Transfusion day .. yup just next day to Tx i gave blood sample for this testt and it came 1299 ...
after that i got aother Tx on aug 5th aand then just a few hours bfore next Tx i gave sample for another Fe ... and here r the results ...

Latest S.Fe Report  19-08-2009
                                                    Normal range (for my age)                         Result
Serum Ferritin                                      30 - 400 ng/ ml                         [bgcolor=#ffffff]776 ng/ml[/bgcolor]

following the treatment  plan of my Dr.Joveria mannan  which is 3 desferal only with Blood Tx , 10 hours on Tx day t 2 hour bfore tx and 8 hours after  Tx ... and 9 tabs ferriprox ...

note: it is good in  my case bcoze my fe was low when my doc turned me on low dose of Desferal , when my Fe was high i was on high doses  .. .it mean's that once you get ride over Fe it wil bcome more easy to manage it in safe range .... GOOD luck to u all

           
 Hurraraaaayyeyeyeee ..........................................................

Umair

Umair,

Congratulations!!!  You have set an amazing example for everyone!  You have shown everyone one that it is possible to turn things around at any age, regardless of where you reside - with determination you can do anything!  This is wonderful news, I am so happy for you!  God bless.

Sharmin