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

Umair, i am so sorry and concerned about this news please keep chelating as much as you can and remember that this is reversible as long as you are dedicated to chelation and i know you are.

As for L-carnitine, there are about 5 papers done on the usage of L- carnitine and thalassemia , they are all published in scientific journals.

Improvement of Cardiac Function in Thalassemia major Treated with L-Carnitinehttp://content.karger.com/ProdukteDB/produkte.asp?Aktion=ShowAbstract&ArtikelNr=76522&Ausgabe=229926&ProduktNr=223829

Assessment of Puberty in Relation to L-carnitine and Hormonal Replacement Therapy in {beta}-thalassemic Patients. http://lib.bioinfo.pl/auth:El%20Beshlawy,A

Apoptosis in Thalassemia major Reduced by a Butyrate Derivativehttp://content.karger.com/ProdukteDB/produkte.asp?Doi=87890


Diastolic Dysfunction and Pulmonary Hypertension in Sickle Cell Anemia: Is There a Role for L-Carnitine Treatment?http://content.karger.com/ProdukteDB/produkte.asp?Doi=89472

Pulmonary hypertension in beta-thalassemia major and the role of L-carnitine therapy.
http://www.ncbi.nlm.nih.gov/pubmed/19065439?dopt=Abstract

i can assure you Umair that it is a safe substance that is already found in each cell in our bodies.  Hope this helps and keep us updated

manal 
 
 

I agree. I believe that L-carnitine has made a big difference to Ahmad's health.

Umair, even though you have made good progress in your ferritin levels, your iron was so high that you have not really done much to remove the iron from your heart yet. As much as you have been chelating, you really need to do more and you should also be loading up with antioxidants to help protect your heart. I will be frank. Without aggressive chelation, you will end up in big trouble. You are beginning to exhibit the signs of congestive heart failure and this has to be reversed. The first step in this should be IV desferal for up to two weeks. This would make a huge difference and would also greatly improve the effect of your daily chelation routine.

When I talked with Dr John Wood at the Singapore conference, I asked him about putting the protocol for treating heart failure in thals that he designed onto a CD and distributing it to every hospital in the world that treats thalassemia. He said it's a great idea except for one thing. He asked will doctors actually look at it and follow this proven protocol? He felt far too many won't. Umair, are your doctors willing to listen and learn? If they are, then they will find a way to get you on IV desferal to clean out the iron.

Also Umair,

IV desferal does not have to be given during blood transfusion - as Andy said it can be given between transfusions up to two weeks.  We need to clean the iron out of your heart and we need to act fast.  You need to be on L-carnitine right away.  Are your doctors willing to speak with the Docs in Oakland?  I am sure that they can get a telephone consultation. 

Please take good care of yourself,

Sharmin

Hi Umair

I am really sorry to hear that you have even more troubles.  You should talk seriously to your doctor.  She is used to be very helpful, if you explain what you have gathered from the information emerging from the conference, she may pay attention. Has your ferritin gone up? I thought you successfully had it under control and that it was quite low.  Can't you get desferal from any other place?  I wish that you get to resolve this problem soon.  I know that it is hard since you are just recovering from malaria but all these problems form part of life and show that we still count.  You are a courageous young man, you can take this up but you have to find a solution soon.  I believe you should go for the tests (heart and kidney) to determine exactly what it is and then take the appropriate action.  Heed Andy's words (Andy should have been a doctor, he would have done a great job).

Take care.  You are precious to all of us.
Jade

That's frustrating.

Umair,

Bhai you are getting it wrong,you don't have to take IV desferal while transfusing,you can take IV desferal in between transfusions,i don't know much about hospitals in Faisalabad,i wish you can come to Karachi,i'll go with you any place i can.
I understand Dr Javeria Mannan is is lahore? it will take time to reach her,can you talk to your doctors in thal center where you go for transfusion? Tell them that you need 24 hour IV desferal ,it will create big changes,ask your dad to force them.
As for antioxidants,if you are not taking IP6 or L-Carnitine,you can atleast drink a lots of green tea.

Please don't feel sad we are all here for you.

Zaini.

umair buddy sad to hear about ur condition...
please try to do the IV desferal therapy...
i did it too every second week...
and a quetion i have too....
should i take l-carnitin too..and how mutch...
and how it helps?      panos

Umair: in 2005 Salman had this swelling problem, his legs were swell then some other parts... when we took him to hospital they did ECG and few other test and got to know that his heart's right side was filled with water..

They gave him LAXIS, through urine all the water came out and they gave few other medicines too, cardiologist, endocrinologist inshort everyone was involved..

I would recommend u shud go for ECG!, and yea.. he was on IV desferal 24/7! that helped too!

prayers always with u!, be strong!

Panos,

L-carnitine will help you in a few ways.  It will protect your body from the oxidative stress of iron.  L-carnitine is also a NO inducer.  NO helps our blood vessels adapt to changing blood volume by making the blood vessels more elastic so that they can enlarge or shrink as required.  In thalassemia for various reasons patients often have lower levels of NO and the blood vessels become more rigid and less able to adapt to changes in blood volume and this leads to pulmonary hypertension.  L-carnitine helps this situation by inducing NO.  Watermelon is also said to be an NO inducer.  I definitely think that all thals should be taking L-carnitine, and this is the recommendation in Oakland as well.

Sharmin

Panos

The dose for L-carnitine is 50-100mg per kilo daily divided into two or three doses.

The above mentioned studies were done on 50mg/kilo

manal

Umair,

I hope that the swelling has subsided.  How are you feeling now? 

Sharmin

Hello Everyone,

Me and Tariq we both kept sending messages on Umair's cell,then we called but he wasn't answering,then Tariq searched his home phone number in directory and i called there.His father received,he said Umair is bit better,swelling is bit better too,not totally subsided i think,he mentioned a medicine that doctor has doubled the dose,i wasn't able to understand the name.
I told his father that IV desferal will help him and that an ECHO should be done immediately,he said we'll leave for Lahore to see Dr Javeria Mannan tomorrow,i told him to tell her that.

Now lets see what happens,i hope Umair will post here soon.

Zaini.

Thank you so much Zaini for the update

manal

Hi buddies,
i m heere to share another bad news ,... here it is ..
i m hearing back to back bad news about my health ,after  Malaria, i m having swelling on my feet , today i went to visit my Local doctor (he's my docotr since my childhood) for check-up , he told me that swellng on my feet is bcoze of heart function . i dont wat realy matter is but he prescripted a tablet and told me that take pottassium rich fruits ( for example Banana etc...etc...) . i m not worried but feeling realy sad bcoze of these back to back set backs . hope these all things will dis-apear soon ....

Umair

I am so sorry to hear that. I wished I talked to you on msn. This is the last thing I would post here today. I really must back the judgement of Court from the European Court of Justice now. Tomorrow I must held an presentation in English..brrr! 

Awe buddies ,
situation isn't that much critical , almost everything is under controle , it was just another episode of swelling , it happened several times in past as well ... i dont know the if it could becoze of urinary dysfunction , bcoze in my last 2 USG reports, radiologist reported these statement :

1) last one report's :
Urinary bladder is full . No stone, wall thickening or mass seen .

2) 2nd last report :
Urinary Bladder wal is thick and trabeculated however no stone or mass is seen within urinary bladder .

Note : before last one USG i wasn't feeling to go to washroom and before finalizing the 2nd last USG results radiologist told me to go to washrrom and come back again , then he finalized the report. kidneys are also fine .
i have a heart report that test took in sep-oct 2006 ( when first time i went to lahore and i was wheelchair and having high levels of BSL )
Conclusion : Normal Echo Study (it is written in that report)... in details it left and right IVs and ll other things was normal , its prety old report na .. i would like to ahave a fresh one. ...

@ Manal :
Hi Sis, i will definitely talk about L-Carnitine again to my doctor , i hope she will agrree this time , its sound's a relay good thing . soo i will definitely discuss abt it to my doctor . Thanx for searching and providing such informative studies papers ..

@ Andy
Hi buddy ,i m on comppliant with agressives chelation plan , i m on 6-8 days of chelation in gap of 10-12 days, between the  2 Transfusions . its pretty much agressive plan i think . as for IV desferal, i m planing for that as well . after ending this day of IM desferal tommorow i will start IV instead of IM ..

Without aggressive chelation, you will end up in big trouble. You are beginning to exhibit the signs of congestive heart failure and this has to be reversed

yeah , i m also doing my best to take controle of it ...

Umair, are your doctors willing to listen and learn? If they are, then they will find a way to get you on IV desferal to clean out the iron.

i will talk to her about it , and i hope that she would like to avail this oppurtunity to lean and she would also like start Iv desferal to me ( she never restricted IV desferal for me )...

@ Sharmin

Are your doctors willing to speak with the Docs in Oakland?  I am sure that they can get a telephone consultation.

Hi Sis, thanx for the concerns and sugestion, its another good option , i will talk to my doctor about this option as well . let's see wat happened . doing my best to washout all the extra iron i m okiey  ...

Umair, I hope that the swelling has subsided.  How are you feeling now?  

i m doing fine , and swelling is decreased as well ....

@ Jade
Hi Jade, thanx for the concerns, compliments and good wishes , i dont think that my ferritin is rising or risen up  , i dont use to collect desferals from thal center, i always use my own desferal so supply isn't the probleme, even on TX day i use my own, bcoze i m a little bit cautious about storage and handling issue of desferal, soo its better to have ur own than having the doubt on the efficancy of desferal  .

I believe you should go for the tests (heart and kidney) to determine exactly what it is and then take the appropriate action

as i mentioned above my last USG reports , according to those reports my both kidnies (Left & right), Gall Blader and pancreas are normal . that USG took on 13-02-09 ....  lets see wat happened . i  agree to you Jade ,i have to go for heart and kidney test to find out the wat is going on .... thanx for the advise , every drop of advise is helping to keep this river flowing ...

@ Zaini
Hi Sis , i m also planing to take desferal IV at home , and as for thal center's doc , i think its better to consult one doc instead of 2 . it can create illusions between the two different treatments . soo its better to consult to one doc who know your history as well ... as for IV desferal i would like start that tommorow . my papa want to take me to lahore on this friday but i want to wait a little bit bcoze it near to complete the course of a medicine that she advised me for stomach aches , soo i want to finish the course and then test and then want to go to lahore , all this will take 7 more days , i want to visit my doc's clinic on 20th march .... till then i will stress on IV desferals . here are three thal centers in Faisalabad, which like i want a huge one thal center instead of three small thal centers . coze i think that it will be more efficiant aand effective than three smalll and limited capable thal centers (it was an example).... situatioon isn't too bad here , they are fully equiped with basic needs for a thal center .. but patients are little careless here ,, but i m not .... i m in safe hands ... ...

@Baal
Hi Baal , Thanx buddy , surely i will do Iv desferal as much i can ... thanx alot buddy for concerns ..

@ Ayesha

They gave him LAXIS, through urine all the water came out

Hi Sis , for this purpose my local doc doubled the dose of a tablet i m taking on Aldectone , ..i will  definitely go for the test you told .. ... thanx for sugestion

@ Zaini
Hi Sis , i think you're talking abt Aldectone that my doctor has doubled the dose , i m fine now , and yeah i will definitely go for ECHO , my papa told me abt that wat you mentioned , . actuly my cell always remain's on silent , bcoze i dont like noises , soo i keep it on silent always . sorry for the disturbance you gone through bcoze of my this habbit . but i use to check my messages a few time a day only .. sorry again for the disturbance ...

okey buddies take care
Best Regards
Umair