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Hope is what I desperately need!
I am very disappointed that Vvygart (efgartigimod alfa-fcab) was not approved for sero-negative patients. While clinically, it is “loosely” referred to as an in-vivo PLEX (PlasmApheresis), I strongly believe it should be available to all MG patients who have responded to PLEX as well as those in the clinical trial participants.
That being said, I am being keep alive by PLEX every other week—my ports are old >5-years, I have clotted off several veins in the upper arms and neck (likely due to the presence of the ports) making replacement of the ports a risky option.
I had an A-V fistula (like they use for dialysis) placed in my L arm so that the ports can be removed and they can “clean-up” the clotted areas; but it is still maturing, and has clotted 2x’s already.
There are no other options now—I use a Trilogy at night and for 1-2 hours during the day and will now be started on a negative pressure (Hayek) non-invasive ventilator b/c I’m desaturating at night. Any lung infection could take me out and I’m slowly losing ground.
I want to be alive and functional for my youngest son’s college graduation (2024). At this point its a toss up on who will die 1st, my 85 year old healthy mother-in-law or me (54) and the odds are not in my favor.
Being told not to get stressed about it is NOT helpful.