THALASSEMIA N ME

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SHARING EXPERIENCE OF COPING WITH DESFERAL INFUSION

Posted by Goh Chun Hui on May 17, 2012 at 12:50 PM



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      

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, causing pain. Especially if it's inject on the area of the skin which is still swollening, Cause by improper inserting of the butterfly needle or the butterfly 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 sleep quality

 

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

 

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


 

IMPORTANT OF TREATMENT COMPLIANCE

 

  • Improve quality of life

 

  • Reduce the iron overload in body and organs (Heart, liver and pancreas)
  • Reduce the following problems of iron overload: Darker skin, muscle pain/cramps, physical weakness & delayed of puberty


 

STRATEGY 1

 

Beileve 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 may 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 that 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, and 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 your next Desferal Infusion, on an plastic trap. 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 for dispose of plastic from products,  cover of needle and alcohol swabs and empty the tray at the end of your infusion.


 

STRATEGY 4

 

Learn the proper way in preparing your Desferal Infusion. You will receive the full benefit of it. It will also prevent yourself 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 Member or Hospital 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 butterfly needle 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 inject on that area too many times. Knowing that will also prevent you from getting redness, swollening or pain during or after the infusion all the time.


 

TIPS

 

Learn from 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 worried on complications of iron overload.

 

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