[Marlene]

Many patients get desferral with the transfusions. John did not because he had a central line in and I would hook him up every night. We would do it 5 nights a week. After about three weeks, he would have to take a break due to side effects and then start up again. Home health care came out and trained me on how to do it and then they would send the meds and supplies weekly.

Once his line was pulled, we had to switch to Sub-Q infusions. This is where a small needle is placed in the fatty area of your belly or thigh and left in for the duration of the infusion. This was a pain. Again home health care came out and did a 15 minute training and we were on our own. We found the needles to be dull and had to search for a better brand ourselves. Sometimes I think these services go for the cheapest they can find. With Sub-Q, you also have a pump to infuse over 8 hour at night. On our own, we discovered you can get a numbing cream so the needle stick is not so bad. We also have used ice to numb the area. Why they don't tell you these things is a mystery to me. From time to time, John would get a huge bruise on his belly from the stick and not having platelets made it worse. When that happened, he would take a break from the desferral until it cleared.

Desferral works best when infused at a slow rate over a long period of time. Your urine will most likely turn an orange color since the chelated iron is excreted via the kidneys. John took vitamin e (400 IUs) and after one month of being on Desferral, vitamin C (250 mg then up to 500 mg).

When he was on Exjade, we found his Vitamin C and zinc levels to be really low so we upped the C and added in zinc. We think the Exjade may have chelated zinc and copper also. Just something to keep in mind as you do chelation is to make sure you're getting enough trace minerals and antioxidants. Living in Hawaii should help alot...lots of minerals in your soil and easy access to fresh fruits all year round.

The Exjade is the easiest to do because it's oral, but also comes with more risks.

Wishing you the best....