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This is Thalassemia Patients and Friends,
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Author Topic: Cardiac monitoring essential for preventing heart disease in Thals  (Read 9008 times)
Andy Battaglia
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Will thal rule you or will you rule thal?


« on: February 12, 2006, 11:24:50 PM »

Heart disease is responsible for the large majority of deaths in thal majors. A 2004 study shows that regular monitoring of left ventricular ejection fraction (LVEF) can detect heart disease early enough to start preventitve chelation treatment in time to both prevent and reverse the severe heart function. LVEF can be measured in a variety of ways including echocardiograms.

From    http://www.medicalnewstoday.com/medicalnews.php?newsid=9761#

Thirty-four patients in the study group were found to have this risk factor, and, in these cases, intense treatment with deferoxamine mesylate (DFO), a drug given intravenously or by injection, was recommended for removing the excess iron from the patient's blood. After rapid improvement in heart function with the initial treatment, the drug continued to make more gradual improvements over several years of sustained treatment before achieving its maximum effect.

All 27 patients who complied with the recommended therapy survived, while the seven who did not comply with treatment died from cardiac disease. The study found that the median period of time between an abnormal LVEF reading and development of cardiac disease was three and a half years – enough time for treatment with DFO to prevent and reverse the severe heart dysfunction.

"This study shows that regular monitoring of LVEF, combined with sustained DFO treatment when necessary, can be used to achieve excellent long-term prognosis in patients with thalassemia major and should be an integral part of their medical care."


All patients and care-givers should be aware that regular tests of heart function are essential in thal patients.
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Andy

All we are saying is give thals a chance.
Danielle
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« Reply #1 on: February 13, 2006, 12:03:32 AM »

This is exactly why I get an echocardiogram and EKG done every year.  I actually had a severe problem, that I was told had nothing to do with iron-overload, that caused my heart rate to jump to 240 beats per minute (bpm), even while I was just sitting down doing nothing.  It was called Supraventricular Tachycardia (SVT).  My heart would race so fast that I wouldn't be able to breathe.

The doctors told me that at 250+ bpm, I could have cardiac arrest, so something had to be done.  I was given the option to be put on medication, or to have a cardiac ablation done.

I didn't want to be on medication, because it was going to cause me to be very lethargic, and I deal with that enough already having Thal.  So, I opted to have the cardiac ablation done.  I had it done in August 2001, and it worked like a charm.  I suffered with those fast heartbeats for over a year, because since the episodes came without me knowing in advance, they could never be caught on a holter monitor.  I was finally able to catch them on this little device, that the cardiologists had me carry with me.  It looked like a credit card, but when you have a heart episode, you place it up to your chest and you push the button so it will record it.  Then, you can call the doctor's office, and tell them you got it on the card, and then you place the card up to the phone and push the button, and the machine that they have at the office will copy the whole thing.  How awesome is that?  If it wasn't for that card, they would've never diagnosed me, and I'd probably still be suffering with those horribly fast beats.  

I love modern technology.  

I'm extremely in favor of having the heart checked at least once a year.  I hope you guys are having it done as well.  

Thank you for addressing this issue, Andy.  


*If you don't know what a cardiac ablation is, just click on the bold link in the second paragraph.

*Also, for information on the Heart Card, you can view it here.  It saved my life, so maybe one day it will be able to save yours, if doctors cannot diagnose you for a specific heart problem.
« Last Edit: February 13, 2006, 12:14:04 AM by Danielle » Logged
Ayesha
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« Reply #2 on: February 14, 2006, 02:48:16 AM »

That was an awesome information about Heart ..

I would like to share what I have experienced in October 2005, where we were not even known by these Heart problems and all...

It all happened to Salman (my brother) who has been much ill than anyone in Family, and who is a Thalassemia major (Age: 20), his body start swelling slowly slowly and the whole body was swell and was taken to Aga Khan (Occupied with all the latest technology and have a great specialists there to assist you in every single disease OR problem) they put them on Oxygen and did all the test, then after they did Echo (ECG) they get to know that his right side of Heart was filled with water and his lungs, heart and liver was pressurized with excessive water.

Then they used the injection called “lysis” (or what-ever the spelling is :S) to take out the water by Urine, and it helped a lot, then he got transfusion and was prescribed to the tablets of Hearts and Kill chelators and was discharged after 8 days…

It was a very bad situation, but Thanks GOD and thanks to the latest technology and above all the doctor’s hard working they saved Salman !

I was also told to have a check on Echo, and Thanks to GOD they haven’t found any problem in my Echo heh!!

All good when the End is good , but make one thing sure DON’T EVER GETS LAZY IN YOUR HEALTH ISSUES, that’s what make the situation more bad, Salman was the laziest in family and he faced such problems…. Make sure you don’t do that ;)!

Take Cares, Bye Bye!
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-Ayesha
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