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Update On Me

aporzeca Message
5 Apr 2017, 04:37 AM


monkeyracing Message
6 Apr 2017, 05:58 AM

Oops. I had written avery long post while lying in bed the other night, something weird happened and I thought it had been completely lost. I guess the title survived. Perhaps I'll just sum it up as briefly as possible.

I've been through the ER more times than I can count in the past year. My record for staying healthy was just shy of 5 eeks last year, but most months I was in more than once.Doctors have a bad habit of encouraging me to leave after a couple of days, but I always have a bounce back 3-5 days after receiving IVIG. I should know better than to take the bait when my life is on the line. Had a few close calls, but in those cases I was still admitted.

My treatment has morphed a little bit over the past few years. we discontinued the monthly IVIG treatments as they were actually causing more episodes than they prevented. My emergency protocol now involves a bolus of hypertonic saline to get my sodium levels up (they tend to drop) and create a gradient between the blood in my general circulation and that in my brain. Cerebral edema is something that's been happening and getting IVIG tends to make it worse for me. My dosage of IVIG has been halved on ER admissions, but I'm usually getting another dose when everything starts shifting after a few days. After the second, or third, dose, I usually recover fairly quickly.

As to the specifics of my case and research that's being done on my (our) behalf locally. My genetics have been checked out and nothing really stands out. I have an elevated but stable MGUS protein, as many of you do. We've done cytokine panels and have noticed one that's slightly elevated when I'm ill, but treating it would involved shutting down my immune system with some nasty drugs. My doc has been running a study involving capillary leak syndrome during pregnancy and has been making comparisons between my case (as a non-pregnant guy!) and his research pool. The testing involves a laser beam being reflected off the back of my eyes and into an incredibly sensitive scanning device. I think it's called OCT. We've learned that when fluid shifts in my circulation, my retinas either swell or thin by a few microns, or some other tiny measurement.

So, that's the not so brief briefing on what's up with me. If anyone has any questions, hit me up. I've learned a lot in the past 7 years.


monkeyracing Message
15 Apr 2017, 06:02 AM

Also...we don't believe theophylline is doing anything for me, good or bad.

my doctor believes that I am leaking all the time and high blood pressure may be forcing fluids from my circulation.


monkeyracing Message
23 May 2017, 06:36 AM

I had another, very severe episode last month, that had me in the ICU for a bit. I had what felt like my usual monthly flare, but I never became hemo-concentrated. I went to the ER and my usual protocol was followed. 200ml 3% saline infused over 20 minutes (deals with cerebral edema) follwed by IVIG.

I remained in hospital waiting for my body to react to the IVIG and boy, did it ever! This was probably my worst episode since the first in 2010. I've had over 70 ER visits, but this one stood out. I even got on the road to loonieville, with a few hallucinations and some delirium. The only thing that wasn't odd about it was I was able to predict when I was going to rebound 3 days earlier. I'm able to do so every single time and my doctor still never believes me. Ugh.

I'm not going to complain, though. I'm still here, so I suppose it wasn't that bad.