Every month I have to re-order my supplies. Accredo is my home health pharmacy. There was a point that I did want to change however, they assigned me 1 very nice representative that calls me each month to place my re-order. We will call him B. When B calls, he must ask me each time for my address and birth date. We also have to go over many other questions and in the end he sets up my next delivery which ships UPS. He also give me the opportunity to speak with an RN or a Pharmacist. The following list will explain to you what is sent to me each month. All of these items make it possible for me to infuse my SCIG Therapy at home. Each person with a PID = Primary Immune Deficiency infuses different amounts. There are also many different brands of SCIG. I use Hizentra and have since it's conception. Prior to Hizentra, I used Vivaglobin which was replaced by Hizentra with more human plasma. CSL Behring makes my therapy. Some immunologists go by weight while others can go by the patient and their infections. Personally, my Immunologist goes by the person. I infuse 64 grams per month. During the past year, I have switched to infusing bi-weekly. It is not recommended to switch any schedule of infusions without checking with your physician and of course having a new order/rx. This is extremely important to remember. I opted to use a faster tubing with 6 sites, every other week and that is my schedule. I infuse 32 grams bi-weekly. To have a sterile and clean infusion one must follow the strict hands-on instruction given from the home nurse or whoever taught you how to infuse your SCIG. You will always have on hand your Pump (which I use the Freedom Pump) You will also always have your yearly RX of an Epi-Pen in case of an anaphylactic shock and a Sharps container for your waste from needles, spikes, and other sharp items you may use during your infusion.
My monthly supply sent to me includes:
- 64 Grams Of Hizentra SCIG in (16) 20-ml Vials
- (8)40-ML Syringes
- (2)2400 tubing
- (8) spikes used to transfer SCIG from Vial to Syringe (instead of needles)
- (2) packages of hex (6) sites with needles and adhesive or Tegaderm
- Alcohol swabs
- Pre-medications use are Benedryl and Tylenol
- Sterile Wash/Scrub
A typical re-order takes about 15 minutes plus or minus. Normally you have to call in for your reorder. You should also remove the sticker off of every vial and or note down the lot number for your record if ever needed to refer back to. Personally, I know it's wrong, I have to admit in the beginning I always did it and after several years, I stopped. Bad Girl I am. I have never done hospital/home setting IVIG and personally for me, I'd rather do SCIG at home as I believe there is MUCH MORE FREEDOM plus the fact that there are less side effects and IgG levels seem to stay even. Although sometimes sad, it becomes part of your normal routine. I choose to infuse at night as I am a bit of a lightweight when it comes to Benedryl and it tires me out. I try not to fall asleep with my needles in my abdomen however, I have fallen victim many times. Recently on an abdominal ultra-sound it was reported that there was SubQ Air (I giggled of course when I read that)
I thank my heavens every day that most times, I can be infection-free, I can receive my SCIG Therapy, and that it doesn't and shouldn't define who I am or how I live my life. I certainly try my best not to let it and continue to live my life STRONGLY! We all have our bouts of sadness, I'm know. Although I will never have a "normal" Immune System and will always be a Zebra, one most important part of having this part of my physical make-up, I have made lifelong bonds with others who are also zebra's that I love with my heart and soul. I am also blessed to have the knowledge and power to share my experiences with others so that they too will not feel so alone as I once did.
As always, If you know someone that is going through a PID (not Pelvic Inflammatory Disease) diagnosis and feeling alone, share my page, my contact info, let them know I am here to listen. No Zebra should ever WALK ALONE - we are all part of the same herd. If you are healthy enough and can donate Plasma - please do. It saves peoples lives every day, it's saving mine. A bonus to donating plasma is you are paid for your time. It's a triumphant winning situation. I would love to know how it feels to help save a LIFE!