It's hard to believe, but it's already one year ago that I did my IVIG loading dose and began a new chapter of my life: that of a sick person who's actually getting treatment for their illness. After 30 years of being sick and undiagnosed, and roughly 5 years of developing all kinds of strange new symptoms, which progressively worsened until I was very scared that I was going to die of whatever degenerative disease I had, to have gotten a diagnosis for a treatable disease was a relief. But that relief didn't mean things were suddenly okay - they were far from it. This past year has been incredibly hard, I've been to the hospital more times than I can count, between my infusions and the many ER trips I've had to make because of side effects or because of my illness flaring.
The reality of the treatment and life as a certified sick person hit hard - diagnosis wasn't the end, but just the beginning of a new difficult chapter. Nearly overnight, I went from doctors either suggesting my illness was just stress or that I needed a psych evaluation, to doctors calling me a "complex patient" and often being intimidated by the seriousness and complexity of my medical condition. I went from often being treated like a joke by specialists or at the ER, to being a patient doctors offloaded because they felt they were in over their head with me, and - at least as long as I go to the hospital where my neurologist and treatments are - FINALLY being treated respectfully and effectively at the ER.
The loading dose that kicked off treatment was difficult. The whole rest of the summer, most of which was spent extremely sick from the loading dose and subsequent treatments was difficult. And just when I saw the light at the end of the tunnel, my treatment dose was lowered and I relapsed really badly - to the point where I was even sicker than before starting treatment. By the time things were arranged to go back on my original dose, I was barely able to walk or care for myself due to severe limb weakness, which was quickly turning into some kind of paralysis, and I was aspirating everything I ate and drank into my airways, as my esophagus completely stopped working. Did I mention that happened while Bruno was away in Belgium? A trip he'd finally booked when I was starting to improve at the end of the summer... it was an absolute nightmare.
And then just as I sighed with relief upon his return, he came down with a respiratory infection he'd caught on his trip. And then so did I. We were both sick for 6 weeks, but I had such a severe cough that I was unable to eat much without coughing until I dry heaved for several days - that is, until I had my IVIG infusion. The nurses at the infusion clinic saw how sick I was and had me put on a nebuliser to manage the coughing. (Where have nebulisers been all my life?! I should have had one since childhood as I've always gotten these extreme coughs from respiratory infections. Who knew suffering through it was not the only option...) Finally, I could eat and drink and sleep again, but not before my weight dropped to a new and frightening all time low.
Over Christmas holidays, I was finally getting over the bronchitis from hell, but still wasn't really getting back on my feet in a figurative nor literal sense. The original dosage of treatment never really kicked back in, and the momentum the loading dose provided was completely lost. I kept slowly going downhill, struggling with the weakness in my limbs, and developing new and at times extremely painful nerve issues with my pelvic floor and bowels. By the time I saw my neurologist again in Feburary I was still a real mess, and she started seriously talking about putting me on a feeding tube so that I could get proper nutrition and gain some weight back.
As much as feeding tubes are life sustaining and I'm glad they exist, they also come with serious risks and downsides, and I wasn't ready to go down that road yet. I proposed trying some additional courses of steroids to try and get back on more stable ground, since they had been so effective previously when my swallowing had failed. Thankfully my doctor agreed, and the two courses of steroids I took separated by a month led to some substantial improvements - despite the horrible withdrawal and rebound flare ups I experienced going off them each time.
By the time I saw her again two months later in the spring, my limbs were working again, my stomach was emptying instead of keeping me awake till 3am regurgitating my very small and early dinners, and I had some minor improvements with my pelvic/bowel issues and swallowing. And on top of that I was getting less of a regression between each infusion, which felt like a miracle! I was finally promoted to 6 month follow ups, and we decided to continue with intermittent steroids with my infusions until fall, to try and further level me up to a state of functioning that then the IVIG could hopefully sustain me on.
It's not ideal - the steroids will continue to eat away at my already terrible bone density, and cause other side effects that make each course hellish on top of my infusions. For instance I had more extreme fluid retention during the last one, and then when I tapered off started peeing like a racehorse, which sent me into a hypokalemic (low potassium) episode on top of the steroid withdrawal and a rebound flare, leading to breaking my several months long ER-free streak. But it does seem to help the neuropathy symptoms significantly, so I have no real choice but to do it. I was hoping to try a higher dose of IVIG, but my doctor does not want to increase my dose, and frankly I don't tolerate the dose I'm on that well, so I hesitate to push harder for it.
Next up, with any luck, will be trying a different brand of IVIG (easier said than done at least in Canada) to see if it could reduce the severe side effects, and if that doesn't help I'm going to have to start considering SCIG (sub-cutaneous IG) more seriously. For now, I prefer to try and stick with the infusions as long as possible.
So, this is my life now.
Lived in two week cycles of a full day infusion, 5-7 days of debilitating side effects (often requiring yet more steroids, plus a load of Benadrly to treat - the Benadryl quite ironically exacerbates my esophageal paralysis and some other symptoms), and then a few functional days to catch up on life and feel slightly more like myself before starting the cycle again. I never do catch up. I'm still in survival mode way more than I'd like to be. But now and then, I get a glimpse of what it might be like to feel more functional again, and it keeps me going...that and knowing what it's like to lose the ability to swallow or move. Before anyone says how much they admire my persistence and strength - let me tell you, it's extremely motivating seeing what the alternative is. Strength and persistence are bizarre things when you have no choice!
ps. Public comments have been disabled. (If you know me, you'll know a way to respond!)