The Cost of Life-Saving Treatment

Stem Cell Transplants are quite expensive. Susan was approved for a transplant in July. In October, we learned that insurance would not cover the procedure, and that the cost would be almost $155,000. So, we then started a GoFundMe. Between the GoFundMe donations, our own assets, and direct donations from friends and family, we have now surpassed $110,000. Which is amazing, but Susan cannot start the treatment until all the funding is secured.

Time is of the essence. Since the GoFundMe started, Susan contracted several serious MRSA infections. The first one required her port-a-cath be removed and replaced. Port-a-caths usually sit under the skin in the chest, and are used to administer IV medications. However, because of the damage and scar tissue caused by surgeries and procedures, this port is in Susan’s upper thigh. We have run out of places to put another port if something were to happen with this one.

Susan got another infection almost immediately after the first, this time in her neck. In order to keep her port-a-cath, she agreed to do 7 weeks of IV antibiotics to ensure the MRSA was not in her port and was completely done. Susan completed the antibiotics on January 1st.

On January 9th, Susan got the results of some blood cultures. They showed that the blood drawn from her hand was negative for MRSA, while the blood drawn from the port was unfortunately positive. This means the MRSA was isolated to her port. On January 11th, Susan had this port removed. On January 17th, a new port was placed in Susan’s right leg.

It’s clear that Susan’s body cannot take much more of the torture that is her monthly IVIG treatments. Every time she enters the hospital, she risks yet another infection. And without an immune system, even a small infection could grow and spread quickly, and kill her.

HSCT is our only option to save Susan, and give her the chance to get the life back that she lost 18 years ago. We hope to start in March, but we need the funding to do so.