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Intravenous Immunoglobulin
A Life-long Treatment
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Today is 2/28/2017,
Rare Disease Awareness Day. I have 3 diseases which are considered rare: Common
Variable Immune Deficiency (CVID), Myasthenia Gravis (MG),and Vascular Ehlers-Danlos
(VEDS). Last year, throughout Rare Disease Awareness Month, I made a video and then wrote entries explaining what each of my conditions is and how they affect me. Please feel free to scroll down to each topic or click on one of the links to the side of the page to read those entries (they are the ones written in March of last year). I am not going to bore you by explaining all of that again, but I thought I'd kick off the next month of Rare Disease Awareness, and remind you what treatment for two of my diseases (CVID and MG) looks like.
What you
see here is IVIG (Intravenous Immunoglobulin), which is a blood product made from the
plasma of thousands of donors. This gives me the good antibodies I need (the
ones that fight infection) that my body doesn't produce, and helps get rid of
the bad antibodies that are attacking me as if my own body were the enemy. I
get these treatments every single week, and will for the rest of my life.
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All the supplies needed for
one IVIG infusion
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At Texas Oncology
Feraheme Infusion
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I know anemia isn't rare, but since this is an update since my last post, I thought I'd fill you in on what's going on. As I mentioned in my entry the
other day, I am seriously anemic, and I had my first Feraheme infusion at the
Texas Oncology Clinic in Denton yesterday. I was a bit nervous, but the nurse made sure to slow the rate
down so that I didn’t have severe side effects, and things ran smoothly, though
I did suffer some nausea and flu-like symptoms yesterday evening and today. As
I was sitting in the infusion suite, my Hematologist, Dr. Spivey came in,
recognized me immediately (even though he’s only seen me in a hospital setting),
and we chatted a little about my situation. I think he is a very good doctor,
weighing out everything he sees, and sorts things out with great thought. I
have another Feraheme infusion to do next Monday, and will be seeing him two
weeks later to see where we go from here. He mentioned a bone marrow biopsy and
while that is not on the schedule, I do think it is smoldering on the back
burner of his thoughts, especially since I have both anemia and neutropenia,
with no idea as to why. We shall see how things go, and whether or not the
infusions (both iron and IVIG) are giving me any improvement. I saw a man
yesterday whose hemoglobin wasn’t much lower than mine, and he had to have a
blood transfusion right away. Hopefully, the Feraheme infusion will keep me
from having to do that. I figure one blood product infused into my body is quite
enough!
I want to say once again that I am incredibly grateful for the many donors who give so people like me can continue to have life. I am also grateful for good doctors, such as my Neurologist, Hematologist and PCP, who actually LISTEN and act, for the amazing Nurses who devote their lives to caring for people like me, for the Patient Advocates who fight for us when we have no strength left to do so, and for the Specialty Pharmacies who do their best to serve us well and keep us going. I feel so blessed to have amazing people in my life who truly care! So again...I want to
thank the many of you who are supporting me with your encouragement, your
prayers, your calls, texts, messages, cards, and visits. Whatever would I do
without you? God is making it very clear by answering prayer and making provision in countless ways that He is caring for me, and that no matter what, I am valuable to Him! Thank you for being a part of His work in me. God bless you, I love you...“What is the price of two sparrows—one copper coin? But not a single sparrow can fall to the ground without God knowing about it. And the very hairs on your head are numbered; so don’t be afraid; you are more valuable to God than a whole flock of sparrows.” ~Matthew 10:29-31~
