THALASSEMIA N ME

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CHELATERS ARE EXPENSIVE

Posted by Goh Chun Hui on March 7, 2011 at 5:15 AM Comments comments (0)



Have you ever wonder how much money Thalassemia Patients spend on their chelaters each month if they are not cover by any Health Endownment Fund.



Let's do a little calculation to find out. Let's calculate using L1 (Ferriprox) as I am taking it. An estimate cost price of a tablet of L1 is 5 Singapore Dollars, if you are taking around 7 tablets a day like me, that will cost S$35 and over S$1,000 a month. Guess what most patients don't earn that much every month as most Thalassemia Major Patients don't own a full-time job due to their condition. In some countries, which patients can't afford these chelaters available in the market, they are having their own form of chelaters which is what I heard from someone.



So conclusion is don't be lazy with your desferal infusion or whichever oral chelaters you are taking now, remind yourself to take them on time according to what your doctor advised you to take. That's basically for this blog post, thanks for reading and I will hope to see you guys later (:

 

FOOD, DIET AND SUPPLEMENTS IN THALASSEMIA

Posted by Goh Chun Hui on February 19, 2011 at 5:20 AM Comments comments (33)


Let's began starting with Thalassemia Minor, Thalassemia Intermedia and Thalassemia Major. Thalassemia Minor Patients usually have food and diet like anyone else is having. Beside some patients were advised by their doctor to have a daily diet higher/rich in iron content.There are Thalassemia Minor Patients out there who are prescibed with supplements like folid acid, vitamin C,iron supplements or others.



Thalassemia Intermedia is consuming a daily diet properly the same as Thalassemia Major Patients only they do not have regular blood transfusion as offen as Thalassemia Major.



Thalassemia Major Patients can have a pretty much normal food diet of what they wish to have, beside some patients themself realised the need to cut down on the intake of foods which are riched in iron content. On the other hand there are patients who are not worried about the iron content they consumed from foods, and continue enjoying what they like. Thinking that since they had already accumulate certain amount of iron level from regular blood transfusion, the iron content they consumed from foods should not have any effect on them as compared to the iron they received from regular blood transfusion, plus they are having proper chelaters so it should be fine.



But do remember the lower your iron level, the lesser the damaged it will caused to your body.The basic supplements Thalassemia Major Patients are taking were Folic acid, Vitamin B, Vitamin C, Calcium with Vitamin D and might others. I will suggest patients to drink at least a cup of pure green tea everyday, because it helps in iron absorption from certain foods plus it contain tons of health benefit in it.



In conclusion regardless of whether you are or not a Thalassemia suffered, it's important that you have a balance food diet and eat 3 meals a day. That's basically it for now, thanks for reading (:

 

THE POTENTIAL/POSSIBLE SIDE-EFFECT OF USING DEFEROXAMINE

Posted by Goh Chun Hui on February 5, 2011 at 9:25 AM Comments comments (2)



Let's began with the possible side-effect of using Deferoxamine mesylate Infusion.



  • Hives
  • Fever
  • Headache
  • Nausea or vomiting
  • Joint or muscle pain
  • Difficulty breathing
  • Swelling of your face lips, tongue, or throat.



Serious Side effect of using Deferoxamine mesylate Infusion.



  • Fast heartbeats
  • Blue lips, skin, or fingernails
  • Severe, watery, bloody diarrhea with cramping
  • Cough, wheezing, gasping, or others



Please get emergency medical help if you do encounter any of the signs or allergic reaction cause after using Desferal. Talk and discuss with your doctor to get the best out of the chelater, don't be afriad to ask and consult your doctor if you do realize something is not right after using this chelater and maybe the doctor might give you a try for others chelater that suit you better.




Disadvantage of using Desferal Injection



1) Butterfly needle in desferal infusion might cause pain before injecting  the needle, during infusion process and after infusion when butterfly needle is taken out of the skin.



2) Desferal Infusion during sleep might affect your sleeping quality  more or less.



3) Take 8-10 hours of infusion time.



 4) Pain, swollen and infection might cause sometimes if not injected properly.



5) Preparation and setup of desferal infusion need to be done. And others...



Cause of problem



1) Injecting on the same area of skin many times or on infecting skin area.



2) As the desferal infusion pump in on your chess or body, so your might feel uncomfortable when fliping, turning around when sleeping or even just lying flat on bed.



That's the end of this blog post, hopefully that cover a little on the topic itself, and I will see you next time (:

MONITORING IRON OVERLOAD IN THALASSEMIA MAJOR PATIENTS

Posted by Goh Chun Hui on December 29, 2010 at 4:50 AM Comments comments (1)



In order for patients to know their iron level and iron overload condition, they need to have their ferritin blood test monitor every 6 months to a year time. The doctor will have to review your blood test result to know your iron level and also the chelater you are on is it working good on you. Below 1000 for your ferritin blood test is still consider within the normal safe range.



Beside having their ferritin level test from time to time, MRI Screening is required every year to exactly identify any iron overload in the key organs of the body, especially the heart and the liver which is the most common places of iron overloading.



So that's the two proceduces Thalassemia Major Patients need to undergoes at least every year to monitor their iron level.



That's basically it on this blog post, leaving me any comment. I will see you later (:

 

THE IMPORTANT OF CHELATION IN THALASSEMIA MAJOR PATIENTS

Posted by Goh Chun Hui on December 13, 2010 at 7:30 AM Comments comments (0)



As you know of the danger in iron overloading, so it's very important that you are having proper chelation on order to remove excess iron stored in key organs and tissues. Untreated iron overload progressively damages vital organs in our body. These are the chelaters that were used by Thalassemia Major Patients for chelation. They are Desferal Infusion, Ferriprox (L1) and Exjade chelaters. There's a correlation between chelation therapy and survival in patients with transfusional iron overload. So always remember in mind to keep iron overload out of your life.



That's the end of this blog post, feel free to any comment about what you think and I will see you guys later (:


DANGER OF IRON OVERLOADING IN THALASSEMIA MAJOR PATIENTS

Posted by Goh Chun Hui on December 5, 2010 at 9:50 AM Comments comments (0)



As you know Iron overload in Thalassemia Major Patients are cause by long-term regular Blood Transfusion they are having. Untreated Iron Overload progressively damages vital organs. Clinical Sequelae of Iron Overload are Cardiomyopathy, cardiac failure, Hepatic cirrhosis and Diabetes mellitus. Unbound labile plasma iron can generate toxic free radicals that cause cell death, severe tissue damage and fibrosis. So it is important to have proper chelation to reduce excess iron, the key to protecting vital organs.



That's basically for this blog post, hopefully it helps a little to let you know the danger that might cause by Iron Overload and I will see you later (:

 

TIREDNESS BEFORE BLOOD TRANSFUSION

Posted by Goh Chun Hui on November 23, 2010 at 6:00 AM Comments comments (4)



IS IT LOW HEMOGLOBIN OR YOUR BODY IS OVER ACIDIC THAT CAUSE THE TIREDNESS ?


 

Tiredness before blood transfusion is a common issue in Thalassemia Major Patients. When your hemoglobin level is low, your body tend to feel tired easily even tough you do not have much activity going on in your daily routine.


 

Here are some common symptoms if you have low hemoglobin. You may feel tiredness, headache, dizziness, fatigue and lack of concentration. Thalassemia patients are used to some of these symptoms they will experience from time to time before blood transfusion, normally tiredness you will just need longer hours of sleeping time or extra nap and your body will feel much better.


 

Another causes of tiredness and lack of energy is your body is becoming over/more acidic. Acidic can be cause by the food diet, stress and physical activity just to named a few. You need to neutralize these acid by having and taking more alkaline rich content food like eating more vegetables and drinking alkaline water in order to stay away for diseases cause by over acidic and to stay healthy.


 

You may feel tired in life doing the same thing repeatly over and over again everyday and don't feel happy at all, because you do not have the interest and passion in the things you are doing and working hard on. So sooner or later you will start to feel bored and tired with your life. It's up to you to find something you enjoy doing out of so much things you can contribute.


 

So that's the end of this blog post, hopefully that cover a little on the topic itself, and I will see you guys later (:

 

DOCTOR VISIT IN THALASSEMIA MAJOR PATIENTS

Posted by Goh Chun Hui on November 9, 2010 at 5:15 AM Comments comments (0)



Thalassemia Major Patients offen had visit to more than one doctor, three doctor at least for my case. There were commonly their Thalassemia Doctor, Thyroid Condition Doctor and their Cardiac Condition Doctor. Some patients even had to attend to other doctor due to their health condition. Most of these health condition like Thyroid Discorder, Cardiac Disease or even Diabetes Condition.


 

Some of these disorder can be cause or due to their Thalassemia Condition. As for myself I am visiting my Thalassemia Doctor once every three months, Cardiac Doctor once every year for now and Thyroid Doctor once every six-nine months. So Please attend to your doctor you are seeing on time, if you really can't make it on that day at least try to change to the nearest date possible for your doctor appointment. I can understand you guys have to attend school or work but always remember health come first and it wouldn't take you whole day I beileve, one or two hours most including the waiting time, I am sure your school or your work place will allow you to go for it. That's it for now, hopefully you enjoy it and I will see you later (:

 

BASIC SUPPLEMENTS THALASSEMIA MAJOR PATIENTS ARE TAKING

Posted by Goh Chun Hui on October 30, 2010 at 4:55 AM Comments comments (13)



Here are some basic supplements Thalassemia Major Patients are taking/should take everyday or might even be more.



From the picture list from right to left, they are Ascorbic Acid ( Vitamin C ) tablet, Vitamin B Complex Tablet ( No Dose Written On It ), Folid Acid 5mg Tablet, Vitamin D3 1000IU ( 25mcg ) Tablet, Wheatgrass 250mg Tablet and lastly Oyster Calcium 250mg with Vitamin D tablet.



All the supplements listed above I am taking 1 tablet every morning, except for the Calcium with Vitamin D Tablet I am taking 2 Tablets a day. So remember to take your supplements prescribed by your doctor on time everyday, and different person had different needs of supplements and doses.



That's basically what I wish to share with you, feel free to leave any comment telling me what you think. I will see you later (:


DESFERAL WHILE HAVING BLOOD TRANSFUSION

Posted by Goh Chun Hui on October 23, 2010 at 12:30 PM Comments comments (0)



I remember years ago, when I was a kids our Thalassemia centre here used to insert desferal into the saline water while having blood transfusion.That way the blood and the desferal with saline water will be running at the same time, so it's important that both are running fine. Normally the saline water runs a little faster than the blood drip speed but that's not important though. Normally 1 vial of desferal is inserted into the saline water for 1 unit/pack of blood. Let say you're having 2 units of blood, 2 vials of desferal will be inserted for that 2 units of blood. So later on that same night, you usually will not need any desferal infusion. Because you did received 2-3 vials of desferal on the same day itself. Few years ago in children Thalassemia center in Singapore, they had stop giving desferal and saline water for patient while having their blood transfusion. The reason is unknown, advantage of having desferal while having blood transfusion is it helps the blood to flow through your body better. That's what I am guessing, also you received 2 vials of desferal that more or less do get rid of some amount of iron in your blood/body. The vials of desferal you received will be added to your blood transfusion bill. Time did not affect much since it's running together with the blood you received. A little more amount of saline water could be added with the blood after the desferal saline water had finished running. That's basically it for this blog post, hopefully enjoy it :)

 


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