Thalassemia Patients and Friends

Discussion Forums => Iron Chelation Corner => Topic started by: Thal-mom on March 11, 2013, 07:25:38 AM

Title: Desferal in port at home? Why not?
Post by: Thal-mom on March 11, 2013, 07:25:38 AM

If my son has a port can he get his Desferal that way? If the clinic nurse accesses him for transfusion can he stay accessed and run Desferal? For how long? What would I need to do at home? Change syringes? If he did 48 hours that would be like 4 overnights correct? Has anyone done this? Is it possible?

Jennifer

Title: Re: Desferal in port at home? Why not?
Post by: Pratik on March 11, 2013, 09:55:45 AM

Hi,

Many thals here have tried it but most got that port infected and it may sometime result in severe infection or trouble.

I think it's not worth the trouble. Subcutaneous is very less painful (as it's in skin and not vein) if you plan to start Desferal.

-P.

Title: Re: Desferal in port at home? Why not?
Post by: nwalsh528 on April 14, 2013, 08:40:21 PM

Jennifer,
We were told it would have to be a different type of port. (Medi port?) I cannot really remember the name, but it was a different type of port.
Any chance your son could be a candidate for the Ferrokin trials in Boston? I hear the results (as was the case with adults) are showing  it to not have the renal and gi side effects that Exjade does. I hope Ferrokin will be an option for Aaron, but since he's 2.1 on the ferriscan, obviously not a candidate for an iron overload clinical study!!
Nicole