That neurology appointment couldn’t have gone any better! We all agreed that IVIG has been kicking my butt so hard each time I get it, that we don’t want my side effects to escalate anymore to the point of danger.
So… Plan B. I am being sent back to the nephrologist (kidney doctor for the non-medical people) I saw earlier this year to go forward with plasmapheresis. This is going to involve another surgery (well, technically three) slammed into one. I’ll need my existing port removed and two new Vortex (high pressure) ports placed, one on each side of my chest.
Hopefully, we can avoid the dangerous post-op crisis I experienced in April with proper post-op management (namely post-op medications and muscle relaxers). I will be requesting an appointment with the anesthesiologist to make sure that this stuff doesn’t happen again. That was awful. Completely awful.
At least with the plasmapheresis, the surgery stinks, but it’s a one time deal and you get it over with, unlike the IVIG, where I’m having crises every infusion.
I’m waiting for an appointment with the nephrologist, then I’ll need a surgery date, then I’ll need a meeting with the anesthesiologist. All of this will take some time, so more likely than not this will not all go down until the end of October-early November after I come back from Orlando.
All of the prayers definitely helped! I got lab results early this morning showing that my autoimmunity has indeed gotten worse instead of better on the IVIG, but that made my decision easier. I think we may have some other answers coming soon, but I need to talk to my doc again and do some more research. That’s kind of big news for another time! 😊
Today I had a long phone conversation with the nephrologist (kidney doctor) in charge of my plasmapheresis, which means I don’t have to see him before the surgery (yay for not having to go to an appointment!), because he saw me in March and my neurologist told him nothing has changed (which is true).
We are back on the pheresis route and he put the orders in for a port removal and bilateral Vortex port placement. My current port has a kink in the tubing meaning things can go in to my body, but blood doesn’t come out. Additionally, it’s not strong enough to handle the pressure of the pheresis machine. These Vortex ports are hardcore!
So I’ll have the 3 in 1 surgery, probably in early November. The reason for the delay is primarily academic (I can’t just drop everything in the middle of the semester and have surgery!), but I have a few athletic endeavors coming up that I have been training so hard for and I am not giving that up! There’s no major rush either, as long as it’s done soon.
But… That means I have to do one more booster of IVIG. For those of you following the saga, you know how I feel about it (or the side effects rather), but something has to bridge the 2.5 month gap between my last infusion 8/30 and the surgery plus two week waiting period that the ports “can’t” be used. I guess that’s what I’ll have to do, but only one more! 🎉
(For those wondering, we are not going the tunneled catheter route first, it is because of my lifestyle, infection risk, and the duration of expected treatment. One, my active lifestyle with taekwondo and going to the gym would likely dislodge a Hickman line in a day. I could do that so easily. Two, infection risk on my ports vs. the Hickman line. I am extremely strict with the people that access my port. You violate sterile protocol, you start over. There are some nurses that hate me for that, but oh well. As long as I’m not getting an infection. With the Hickman you can do everything right and you’re still more likely to get an infection with it than the ports. Oh yeah, and every time I sweat, I would have to change the dressing. Anyone who really knows me knows that just that is a giant problem. Three, some people experience almost immediate relief (2-3 days), but in my case, we are trying to reverse a year of contractures in my lower leg. Naturally, it’s more likely to take longer, hence the ports.)
Hopefully, this is will all do the trick and get rid of Otto!
Recent blood work has shown that I am positive for 18 different infections (none of which are contagious) and about 6 more different antibodies in high levels. A very extensive Lyme disease panel was run and that all came back negative, as I fully expected it to. While I would rather not have to deal with any of this, it’s good that the test results explain what I’ve been dealing with for years.
Some can be corrected with aggressive immunotherapy (IVIG, which clearly hasn’t worked in this case. Plasmapheresis, and other oral and IV immunosuppressants), which should dramatically reduce certain symptoms. Also, some can be corrected by taking supplements. Hopefully between the supplements and the plasmapheresis, my body can start to try and heal itself.
I’m eager to see what my doctor will say about the results as a whole, but I do know that a lot of these results can clearly explain several symptoms. That’s the latest from the medical front.