THALASSEMIA N ME

Subtitle

 T I P S

 

 

Maintaining hemoglobin level in Thalassemia Major Patients in nearly impossible, regardless with or without Blood Transfusion. Needless to mention about increasing it. If patients could, they wouldn't be dependent on Blood Transfusion. Infact, it's just as impossible to even trying to prevent hemoglobin from felling. But certainly, there are some things and exercises below you can try to avoid, to prevent further fell in hemoglobin level which they already are whether we like it or not.

 

 

 

 

Tips in preventing further drop in hemoglobin level

 


 

  • Rest more

 


 

  • Try to avoid any cut or Injuries 

 


 

  • Try to avoid getting angry or stress

 


 

  • Try to avoid doing heavy or long duration exerises ( eg. marathon running, mountain climbing, etc )

 


 

  • Try not to think and worrying about, doing anything will it affect your hemoglobin in any way. Just do what you need to do.

 


 
Sharing Experience of Coping with Desferal 
 
 
 
Excuse patients give to skip/avoid Desferal Infusion
 
 
 
Switching Day 

 

Tomorrow, I will have my Desferal Infusion.

Tomorrow, I still have to wake up early for school/work.

I will be sure to have my Desferal Infusion tomorrow. Just one day wouldn't make much different, it shouldn't be a problem.

 

 

 

 

 

LIST OF REASON FOR THALASSEMIA PATIENTS DISLIKE HAVING DESFERAL INFUSION

 

 

 

  •  Need to Prepare and Set up for Desferal Infusion.

 

 

  • Injecting the butterfly needle/infusion set, cause pain. Especially if it's inject on the area of the area of the skin which is still swollening, causing by improper inserting of the needle move around while you are sleeping.

 

 

  • Having to carry around the Desferal Infusion Pump at all time during the whole Desferal Infusion.

 

 
LIST OF REASON FOR THALASSEMIA PATIENTS DISLIKE HAVING DESFERAL INFUSION
 
 
  •  Affecting sleeping quality.

 


  • Uncomfortable sleeping with the Desferal Infusion Pump holding/hanging around your chest or body.

 


  • Causing Redness, Swollen and Pain after Desferal Infusion. (Patients choice of what they dislike the most about Desferal Infusion)

 


 
Important of Treatment Compliance 
 
 
  •  Improve quality of life.

 


  • Reduce the iron overload in body and organs (heart, liver and pancreas).

 


  • Reduce following problem of iron overload: darker skin, muscle pain & muscle spam, physical weakness, short & delayed puberty.

 


 
Strategy 1 
 
 
 
Believe in achieving your goal through having Desferal Infusion. Only then you will find the motivation to keep yourself going with Desferal Infusion.
 
 

Some Example : I will have to do my Desferal Infusion regularly if I want to stay healthy, live longer, be stronger, be taller and prevent more complications to occurs.
 
 

You will get yourself motivated and even do more days of Desferal infusion that you had planned.
 
 
 
Strategy 2
 
 

Plan in advance, before the beginning of every week on which day of the week will you be doing your Desferal Infusion. It will not only help you not to miss out any day of your infusion but also remind you which of these day, you had already done your Desferal Infusion.
 
 
 
Tips 
 
Mark the days, you will be having your Desferal infusion on your calendar. Remind it on your phone or just anything you will view it and remind yourself.
 
 
 
Strategy 3
 
 
 
Prepare all the list of items needed ready in advance for your next Desferal Infusion. 
 

So that you can save the step and just need to get your Desferal Vials from the fridge, to start preparing. You can save some time and remind yourself that you have to do your infusion.
 
 
 
Tips 
 
Prepare the list of items needed for the next Desferal Infusion, on a plastic tray. All you need is to carry the tray around and put it beside you to start the injecting the needle. The tray can also be used it for dispose of plastic from products, cover of needle. The tray can also be used it for dispose of plastic from products, cover of needle and alcohol swabs and empty the tray at the end of infusion. 
 
 
 
Strategy 4
 
 
Learn the proper way in preparing your Desferal infusion.
 

You will receive the full benefit of it. It will also prevent you from getting poke from the syringe needle, while preparing it. 
 
 
 
Tips
 
Learn from someone who had experience in giving Desferal Infusion, for example, Thalassemia Patients, Thalassemia Patients Family Members or Nurses.
 
 
 
Strategy 5
 
 
Learn the proper way to insert and remove the butterfly needle (Scalp Vein Set) from your skin. You can save the trouble of having to poke yourself twice while trying to insert the infusion set under your skin. 

As for the first time while inserting the needle, it might be causing you some pain, due to the same area on the skin is swollen or had injected on that area too many times. Knowing that will also prevent you from getting redness, swollen or pain during or after the infusion all the time.

 
Tips 

Learn form someone who had experience in giving Desferal Infusion.
 
 
 
Support & Advice  
 
 
 
Support

Beside the motivation, you had given yourself. Support given from family members, relatives, friends, doctor or even nurses do helps in gaining back the spirits of doing their Desferal infusion in patients.
 

Advice

I know it's hard on you. Desferal Infusion on a regular basis can help you stay healthy and live on without the worry on complications iron overload.
 
 
 
STEPS IN PREPARING EXJADE CHELATION, USING EXJADE MIXING CUP
 
 
 
Get your Exjade Tablet, Mixing Cup and Orange Juice or Plain Water really.
 
 
 
1. Pour in about 150ml of orange juice or water into your empty clean mixing cup.
 
 
 
2. Put in your Exjade Tablet in the mixing cup with water.
 
 
 
3. Cover up your mixing cup and turn to lock it tight.
 
 
 
4. Make sure you have two working condition batteries, before inserted it into the   mixing cup.
 
 
 
5. Press the ON button on the handler bar of the mixing cup for at least 1 to 3 minutes.
 
 
NOTE: Not to mix your Exjade using the mixing cup for too long or short. Mixing it too long will turn it into fresh whipped exjade cream, which will now make it harder for you to drink it. On the other hand, mixing it too little might result in not letting the Exjade Tablet fully dissolved in the water. In other words, might prevent you from not getting the full potential benefits, that you could have received if you just simply blend it a little more.
 
 
 
6. Now, when everything is ready. Drink the water, which is now nicely blend with the Exjade.
 
 
 
7. Pour in the second round of in addition orange juice or water, approximately about 50 to 100ml. Just to make sure, you are not wasting any of the remaining Exjade, that might possibility still remains in the mixing cup. Shake the mixing cup a little, and drink it all up.
 
 
 
8. Lastly, wash up your mixing cup. Let it dry it up and make sure it's clean before your next use.
 
 
 

Members Area

Newest Members

Recent Prayer Requests

  • finencial support

    I have one douther .she was a thalassemia patient. but i have no abilite her proper treatment . please help me .
  • WORLD THALASSEMIA DAY 2011

    HOPE EVERYONE WHO ARE HEALTHY AND ARE ABLE TO DONATE BLOOD TO GIVE A HAND TO HELP THALASSEMIA PATIENTS BY DONATING BLOOD TO SAVE A LIVE.

Recent Blog Entries

Recent Photos

Like us on Facebook

Follow me on Twitter

Subscribe to my Channel