Discussion Forums > General Chatter
Just wondering how Umair is doing and if anyone has heard from him
Manal:
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
Andy Battaglia:
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.
Sharmin:
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
jade:
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
Zaini:
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.
Navigation
[0] Message Index
[#] Next page
[*] Previous page
Go to full version