Polycystic Kidney Disease has plagued many families throughout the world, including my own. It often leads to kidney failure and a need for dialysis or transplantation. I was diagnosed with PKD at the age of 21 I never envisioned all that I would experience as life moved forward. This will be a journey of humor, sadness, desperation, love, frustration and all other emotions that come with spending a life bound to a machine you learn to love to hate keeping me alive. Blessings
Friday, February 10, 2012
Received a call today from IV Infusion Home Therapy Nurse. The transplant coordinator sent over a dosage prescription for IVIG therapy to be given as a pre-transplant therapy to reduce my PRA levels. PRA is short for Positive Reactive Antigen (Antibodies). High PRA levels make it very difficult to receive a transplant that will be successful. Basically it means you will react (which is bad) to a high level of possible donors. The IVIG therapy which is short for IntraVenous ImmunoGlobulin (sp), is given IV over a t w e l v e hour time frame. YIKES!!! I thought 8 hours of diaysis at a time was difficult. I cannot imagine having to sit in the chair for dialysis for 12 hours while getting IVIG at the same time and having the nurse sit and stare at me LOL. I may need serious sedation for it. I know my RLS could really kick in. I must not borrow trouble though by thinking it will be difficult. It may be weeks or months before they receive authorization to proceed. Well. I am off to go see my family doctor.
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