something about Liver, iron overload, chelation, diabetes and hepatitis

hey buddy :
there are many other NGOs in RWP ..try to manage blood from themm ... or you can also check blood banks for blood .. do something yaar ... but TX on time yaar dont compromise on your tx and tx date ...

take care
umair

Don't worry. I will have to check tomorrow if they have harvested a B+ve in the last camp. Otherwise it's donor fishing time (A hard job indeed in Ramadan)

Best Of Luck Buddy Wish you that, you will find blood tommorow ..... and you will have a smooth Tx tommorow (Ameen) ....

Sajid,

Let us know how things are going.  It is a good thing that your previous pretx hg was good.  Please keep us posted on your tx and on your desferal situation. 

Sharmin

October 29 2008


October 29 2008

Test                                        Results                     Normal range
Liver Prfile ( L.F.T )
S.TOTAL BILIRUBIN            1.0 mg/dl                   ( 0.2 - 1.25 )
S.DIRECT BILIRUBIN            0.2 mg/dl                   ( 0 - 0.15 )
S.INDIRECT BILIRUBIN         0.8 mg/dl                   ( 0.2 - 1.2 )
GAMMA GT                         63 I.U/L                    ( 3 - 50 )
SGPT (ALT )                       80 I.U/L                    ( 0 - 55 )
ALKALINE PHOSPHATASE     160 I.U/L                  ( 28 - 124 )

Hi Andy and all others ,
please say something about my latest reports ,,
please discuss about the reports , and tell me wat i should have to ask about my self and treatment to my Doctor ...

i wiill be realy Thankful of you all ....

Take Care
Umair

Umair,

Do you have previous results to compare with these? The results are consistent with iron overload or hemolysis or hepatitis or all three. I am also concerned about the frequency of your transfusions and do think you need to get your Hb up so you can better assess if hemolysis is taking place.

Andy,

That was my concern as well - Umair is transfusing every 14 days - unil I learned that he is getting 1 unit each time.  It would help to know what volume of blood he is getting.  14 - 16cc/kg starting at a pretx hg of 95-100 should give him 4 weeks between transfusions.  If he is only getting half of that amount then it would last him 2 weeks.  The problem seems to be that he is always starting too low, then he may be getting a small volume which brings him back down to a hg of 80ish after 2 weeks. 

As you have said, it is hard to know if he is just not getting enough blood or if hemolysis is taking place - I think that a Coombs test and a list of transfusion volumes would help us figure out what is going on. 

I am really hoping that people in other countries arrange to have blood samples sent out to North America or wherever genotype testing is possible - please talk to your blood banks.  The inconvenience of doing so is way worth avoiding the complications that can occur if you develop auto immune reactions to transfused blood.   For the time being, at least find out if it is possible to do so. 

I wish that we had done genotype testing as soon as our son was diagnosed, I am so glad that Andy and Dr. Vichinsky have finally gotten things underway for us. 

Sharmin

live sizes in previous report :
16 dec 2006 = Live is grossly enlarged measuring 22.2cm in size with slightly coarse echotexture.

Ultra-Sound Liver , November.11.2008

to enlarge this report

Umair,

From what I can see,  your liver looks better than before because the size of your liver has decreased by 4.2cm.  The increased echopattern is indicative of steatosis

steatosis hepatitis, is a reversible condition where large vacuoles of triglyceride fat accumulate in liver cells via the process of steatosis.

http://en.wikipedia.org/wiki/Fatty_liver

That is my limited understanding of the results.  I hope that things continue to get better for you.  The decrease in iron levels will be very helpful to you and your hep C has been dealt with right? 

Sharmin

Umair,

Please update us once you have met with your doctor and had your transfusion. 

Best of luck with everything,

Sharmin

Hi Buddies ,
i m again typing my answer to last 2 posts and its third time in last 6 hours i m typing it, i hope this time i will got success to send it .

soo, sorry for being late to reply , yesterday i went to have Tx i got Blood as usual and pretty smooth Tx , i asked my thal center's lab incharge abt the volume of blood , but he left my questions un-answered and went disapeared to the scene and were disapeared . . i m not gona leave my thal center's lab incharge i will trace him again and i will keep asking to him .  i didn't ask abt that to my thal center's doctor bcoze she was bussy at the moment i met her first time of the day for routine file filling practice , but after that i didn't meet her again when i my blood finished she wasn't there as it was too late to their off time (2 o'clock) and my blood finished on 3;15 pm .

yesterday before TX , i  gave Blood sample At AGA Khan Labs to done CBC and LFT, Reports will b issued Tonight , i will update you to my reports as well .
about Ultra-sound, here is a link of my latest liver's ultra sound (complete report) . i will try to find out my old report and i will try to upload that as well ... here is the link ..

http://i383.photobucket.com/albums/oo274/Nice_Friend/DSC01397.jpg

Take care
umair

Umair,

I think that your results show an improvement from your previous one (2006).  Keep up the excellent work. 

The fatty liver can be improved too with good diet and omega 3 - I believe.  Have a lot of whole foods - fruits, vegetables and grains.  Avoid anything processed or refined.  I don't understand all of this well enough to give you very good advice.

I so wish that we could get your blood volume.  For my son, we can see his blood volume ourselves because the pump has a transfusion rate, volume history etc.   I wonder if it is even possible for your thal center's incharge to know what the volume is if there is no measurement of what is going in.  Most often no one really knows how much is in a bag - they figure it out once it is infused at a certain rate how much went in.  I just wish that your equipment was able to measure all of this - it is very very very important to know how much blood you are getting and how fast - otherwise you don't really know what your transfusion requirement really is.  The volume in the units can vary GREATLY!!!  How can one determine if you are just getting small volumes of blood or if you are having hemolysis??  My son is 10 years old and if given 15cc/kg he requires more than one unit.   Perhaps you are getting only enough blood for a child and then your hg drops - causing your body to go through stress and extra iron absorption.  We can't know for sure.  If you are getting enough blood then the question of hemolysis comes into play - but we simply cannot know until we know what volume of blood you are getting. 

The acceptable level is to be transfused at a hg level of above 90 or 95.   

Sharmin

Hi Sis ,
on every TX ,they gave 1 unit of blood to me, fresh 75% filled with packed red cells ... with 2 desferal vials ..... blood take's 2;30 to 3;00 hours or a little more some times ... and desferal take's almost 4-5 hours ....

my last Tx was to maintain my Hg , according to the schedule my Tx date was upcoming wednesday . but i made my own plan to get ride of Hg and to maintain Hg . i didn't collect my CBC & LFT reports last night . but today i will collect my reports bcoze hopefuly i m going to visit my Doc Today .... lets see wat she has to say and to change in my treatment .... i will update yo  relay soon .. i will try my best to update as ssoon as possible but my PC is giving a realy hard time to me , can you elieve that i formatted and then re-installed the windows XP ( the long time taking windows when you are instaling new setup of it )  my PC more than 10 times in last 2 days ... shuh ... that is the reason why i m a little slow to reply you all in past couple of days ...
but i will update you all soon ....

Best Regards
Take Care
Umair

Hi Buddies ,
today i recieved my reports , here r the results .

October 29 2008

Test                                        Results                     Normal range
Liver Prfile ( L.F.T )
S.TOTAL BILIRUBIN            1.0 mg/dl                   ( 0.2 - 1.25 )
S.DIRECT BILIRUBIN            0.2 mg/dl                   ( 0 - 0.15 )
S.INDIRECT BILIRUBIN         0.8 mg/dl                   ( 0.2 - 1.2 )
GAMMA GT                         63 I.U/L                    ( 3 - 50 )
SGPT (ALT )                       80 I.U/L                    ( 0 - 55 )
ALKALINE PHOSPHATASE     160 I.U/L                  ( 28 - 124 )


November 15 2008
my Pre-tx Hg was 9.2
Test                                        Results                     Normal range
Liver Prfile ( L.F.T )
S.TOTAL BILIRUBIN            1.5 mg/dl                   ( 0.2 - 1.25 )
S.DIRECT BILIRUBIN            0.1 mg/dl                   ( 0 - 0.15 )
S.INDIRECT BILIRUBIN         1.4 mg/dl                   ( 0.2 - 1.2 )
GAMMA GT                         64 I.U/L                    ( 3 - 50 )
SGPT (ALT )                       76 I.U/L                    ( 0 - 55 )
ALKALINE PHOSPHATASE     138 I.U/L                  ( 28 - 124 )

today i went to meet my doc , i asked her about my reports and she said that reports are showing good progress . i asked her abt my Hg and wat Blood volume should i consume . she replied that 250ml is enough for you but not for 2 weeks you have to short the gap between two Txs 12 day instead of 14 . i asked her about the possibility of Hemolysis she tld me that my Hg is a little bit low but my reports not showing any symptoms of Hemolysis , as i m consuming 250ml after 14 days . she said its quite normal but i ( me ) have to maitain my Pre-Transfusion Hg Above 9.5 or around 10 . soo i m feeling realy light and relaxed after hearing that .  its time to feel peace in mind Lol ....
when she saw my LFT reports and said that its better than bfore ( previous reports ) . treatment will remain same  and i have to continue Zeffix for 1month ( to complete the course of 3 months ).
Ferriprox DeCalc , Desferal plan , Vitamin-E  and zinc syrup  all should be continue as prescripted in previous visit ....
i willl upload my CBC and previous Liver ultra sound reports , as soon as possible.....

Best Regards
Take Care
Umair

Umair,

That's excellent progress in your liver levels. There is a direct link between lowering your ferritin and improvements in these tests. Keep it going buddy.