Just wondering how Umair is doing and if anyone has heard from him

Hi Zaini sis,
Hahahahaha ....
dont need to say sorry ... its looks good to hear the commentts like that ...

Good News, My Thal center's Staff Bleeded 45 Donars in Today's Camp ....

Bon Voyage!!!

Don't be gone long!

Hey buddy,
I hope your absence means that you are getting treatment and the answers that you need.  How is you hg lately?  ferritin? 
Come back soon:)

Sharmin

I sent a text to him yesterday ,he replied "i am totally fine and will update on thal pal very soon".

Zaini.

Hi Everyone ,
Zaini , is right ... soo here i m  ....

Hey buddy,
I hope your absence means that you are getting treatment and the answers that you need.  How is you hg lately?  ferritin? 
Come back soon:)

i haven't got answers of my questions , as my CBC and LFT report is still un-answed .. i m looking for the answer ... i want to visit my doc soon but she is busy in thal conference karachi .. soo unable to visit meet her .. as my reports dae was 30 october and she went to karachi on 2nd of november ... soo still looking for the answers .. no new treatment , nothing new , i were upset a little bad to the past few days , bcoze of health but the feeling tired ( emotionaly feeling tired ) ...
yesterday ( on 4th november tuesday ) i went for Tx and my Pre-Tx Hg was 8.3 ( as i thought ) ....
people at thal center said to me that i was looking realy shiny ( for the first time they saw me in White Shalwaar Kameez ) ... when i woke up today a bad news was waiting for me , i got Stomach ache oce again , in my last visit i told my doc abt my stomach ache , she told that it could be a side-efect of the medicine she prescripted to me for Liver ( bilirubin ) ... she said , that medicine is working and controling my high levels of bilirubin then i should have to cary for a little more , i have taken that medicine nearly two months and its a course of 3 months  .. but my Bilirubin is in normal ranges now as you may see in my LFT report .. soo lets see wat she will do next with the medicine and treatment ....
hey i want to share a super fact :
when i got stomac ache ,
1) undisclosed on 22 september ( dont want to disclose the reason )
2) on Eid Day  when all of my family member was saying that umair you are looking good in this and healthy .
3) unknown reason ,
4) when people at my thal center said that , my health is improved and i m looking good in this dress ..
when-ever someone said that i m looking good , hhahahhhaha

Chelation is on , and taking medicines for my stomach which my doc prescripted in advance .
i think its enough for this time .... coze its too long na ??...
thanx for remembering me & noticing my absence ....

Best Regards
Take Care
Umair

Umair,

How long had it been since your last transfusion?  It would be nice to see you hg a little higher before transfusions. 
I am glad that your bilirubin is down and that you are chelating so well. 

I hope that your stomach is feeling better. 

Sharmin

Hi Sharmin ,
thanx for the encouragement , i m feeling good after taking medicine for stomach ..
it is 14 days gap between last and and 2nd last Tx ...
here is the link of my latest lft and cbc reports in which you can see and compare the bilirubin , 
http://www.thalassemiapatientsandfriends.com/index.php?topic=1870.msg20173#new

Umair

Umair,

Your hg should not be dropping that much in such a short period of time.  You should be transfused at a hg of 9.5 or above, 14 - 16cc/kg every 4 weeks.  If your requirement is a little more than maybe every 3 weeks, but your pretx hg should be at least in the 90s.  You must make sure that your blood is being properly match and you must get a coombs test done - something is causing too much hemolysis.  With this rate of transfusion the chelation has too much incoming iron that it does not get a chance to reduce iron already stored in the body. 

This time, you should request to do your transfusion in a week (or whenever you feel that your hg will be in the 95 range) and then be transfused 14 - 16 cc/kg.  If it does not last you at least three weeks you should investigate why. 

Sharmin

Hi Sis,
i will definately plan a Tx within a week ..  after that i will ask my doctor to investigate the reason thatwhy the gap is too short .. and i will ask my thal center's doc as well wat is  the volume of the blood they gave me .. good thing is they r doing a good job for me , Lab incharge always try to give me fresh blood and i never saw that my blood is  more than 3-4 days old , .. i will try my best to find out the reason ...  thanx for the suggestion sis . i realy need that .. i wanted to kow that wat is the needed volume for me .

Umair

A good volume for you is (14 - 16 cc/kg) - 560 cc to 640 cc on the lower end.  If you are needing more blood (20cc/kg) then the volume for you would be 800cc. 

I calculated these values based on your weight of 40kg. 

Sharmin

hey sis,
a good news, if i havn't mentioned about it before .. that is . as i thought 39kg was bcoze of weighing machine's fault or something else , my weight is again 43kg ..
(14 - 16 cc/kg) - 688cc to 602cc  on the lower end .. (20cc/kg) 860cc ... i m right na .

thanx for helping me to understand these calculations ... i will ask to my doctors about it...

Umair

Umair,

That is correct:) 

Sharmin

Umair,

Oakland has advised me that the goal of each transfusion is to increase hemoglobin by 35-45 g/L and this is usually achieved by transfusing the patient at hg 10.0 - a volume of 14-16cc/kg.  In your case, if you were transfused at a hg of 10.0 in a week then the volume of blood that you should receive would be between 602 to 688cc/kg. 

Please ask your doctor for the Coombs Test also known as the antiglobulin test, the information obtained from this test will be very helpful in determining what is causing your increased transfusion frequency.  The information will also be helpful in the crossmatch process so that the transfusions will last longer.  I am glad that you are getting fresh blood as this is one factor in determining how long your tx will last.  I also hope that you will ask your doctor to take a blood sample and have it sent to either UK, US or Canada (Toronto) so that you can have genotyping done - this is the one way to BEST match your blood.  Your friend at the blood bank may now how and where to send your blood.  I know that the blood should not be spun after it is drawn when it is sent for this test - but I am sure that the lab where the testing is done will inform you on how it should be prepared for testing. 

Please Umair, do not delay in taking these steps.  Make sure that you are getting the right volume of blood, get the Coombs test done and if at all possible get the genotyping done. 

I am so glad that you are chelating, regardless of tx frequency the more you chelate the better. 

Take care, 
Sharmin

Hi Sis ,
Thank you for helping alot  , you are soo kind  and helping . i m making notes in light of the information yo provided , i will ask to my doctor investigate my case completely  , and to advice treatments if needed ... i will ask to my thal center's staff that give me the details of that you mentioned ( blood volume , and sending the sample and procedure )  ...
] i will also provide them this info , and will ask to them abt their formula or calculation of setting the volume of blood ....

Thanx again sis for helping me alot ... i m realy thankful of you ..
Take Care
Umair

Umair,

Also try getting a slow rate transfusion.  I don't know what rate you are usually transfused, but it may be worthwhile spreading your transfusion over a longer period.  If you get two units, it may not hurt to do them over two days one after the other.  The slower you transfuse the longer the tx seems to last - even when transfusing the same volume.  If there is some immune reaction going on, your body is less likely to react to the slow increase in red blood cells than a fast one, plus I think that less damage is done to the cells when they go through the line slower.  After all, you want each transfusion to last as long as possible to keep your hg high and minimize the iron. 

Sharmin