Tips from the Pros

* Rotate your infusion sites! This reduces rashes and allows bumps to heal. Remember: any soft, fleshy area will do. You can move from arm to thigh to abdomen.

* If you are using a straight needle, try making a little pillow or cushion out of some folded gauze, tuck it under the needle and secure. This will help keep the needle at a comfortable angle while you sleep.

* Proper dilution of the Desferal with sterile water will help it go in smoother.


* From Sotirios Katakouzinos: Try using the same amount of Desferal over a long period of time to increase its efficacy. E.g. instead of using 3g over 10 hours in one 10 ml syringe, use 1.5g in a 10 ml syringe over ten hours, and then without changing needle or needle site, replace the emptied syringe with another 1.5g of Desferal in another 10 ml syringe. That way you are using the pump over 20 hours and extending the time that the Desferal has to work to remove the iron without getting the bad lumps caused from concentrated Desferal.

* From Tanvel Saher Khan: Hi, I'm a 30 year old thalassemia major. I would like to share my life experiences with anyone who cares to ask. I am on subcutananeous Desferal using the 24-hour ballon pump system. I have had two port-a-caths, but both failed. My ferritin is around 2500. Oh and I have very young skin and look very young for my age!! My main message is to keep using the pump, and until some other way of using Desferal comes along, keep up the good work.

* From Robbie Stephens: While using the sub-q infusion pump, I developed an abcess in the abdominal area. The physician told me that my technique was quite sterile, and that these things just happen when using the same sites over and over. Since then I have tried infusion through a medi-port (for up to 72 hours), but continuous infusion was impossible because the site became very sore. I am now trying IM therapy. My ferritin is not decreasing, but considering the fact that I receive 2 units RBC's every 3 weeks, it isn't as high as it could be. If anyone has any suggestions, please e-mail me. Thanks. DJsAunt@aol.com

* From Sam Myers: I am 33 years old and receive 2 and 3 units (alternating) of blood every three weeks. I use the infusion pump 3 nights a week for 8-10 hours. The days I receive blood, the catheter is left in for 8-12 hours of intravenous therapy. My tip is, try using an ice cube wrapped in a paper towel for quick and convenient way to numb the sight before inserting your sub-q needle. Be sure to wipe the site thoroughly before inserting your needle. sammyers@uhc.com

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