Monthly Archives: October 2015

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Sweet Smell of Success (So far)

I am so proud of myself for sticking to my guns and waiting to do the immunoglobulin infusion when it felt right for me, at the lowest dose possible, with a bag of saline and a showered, no-scent nurse. I feel fine. I’m stiff, sore and tired, a bit more than normal, but no big deal. The infusion site on my abdomen is sore if it touches something, but no big deal. I didn’t need to ice my belly and I hardly felt the needle going in. I think next time, though, I’ll try my thighs because I do daily abdominal massage and castor oil packs for my constipation, which I can’t do now.

My vertigo from yesterday is gone (maybe it was a neck issue in my sleep) and today, inside, I am vibrating with excitement. Hell yes!! Success! I’m usually either so impatient to try something, I take too much (Cromolyn) or I don’t want to face the adjustment period/eventual withdrawals/possible reactions, so I postpone forever (Equilibrant, antidepressants, B12). But I did this the right way. I waited, I tested everything I needed to test, I didn’t jump the gun and start where my doctor wanted me to start (3mg), I started low and it was no problem.

My biggest excitement, honestly, is having a positive experience with the premedications and it gives me hope that my reactivity has calmed down. I didn’t even fall into a drugged stupour like I did when I tested the premeds. I have no horrible antihistamine-poisoning-hangover feeling, no headache, my blood pressure has stayed stable at around 85/55 (I know, too low, but stable low). Since all these sensitivities cropped up, I’ve been lucky that my disabling dysmennorhea has abated and I’ve not had any anaphylaxis, collapses, accidents etc. (toba, toba, knock on wood), but I was worried about what I would do in the event that I’d have to have surgery or some emergency procedure. This feels great! I have an arsenal now. I might have done the MRI contrast if I’d had the confidence at the time to pop some Prednisone, Benadryl and Zantac. I’ve still never taken my EpiPen, but, if ever I have to (toba, toba, KOW), maybe I won’t be as sensitive as I was in the past (when an endodontist accidentally put epinephrine in my numbing injection, it felt like I was having a heart attack). I can’t tell you how good this feels. I might finally try daily H1 and H2 blockers to see if they make a difference in how I feel overall. I might sit down with a bottle of wine, salami, aged cheese and kimchi.

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I set this all up in our spare room upstairs to keep away from the dogs and so I could sleep if I needed to, but really I could do this anywhere. The saline bag has a carry pouch with a shoulder strap and is infused by a battery-operated pump. Once the needles are in and covered with tape, I could conceivably be on the couch with my dogs, watching TV. The tricky part is navigating the bathroom with one straight arm while carrying the saline pouch and holding the SCIG pump and managing not to rip out any of the needles.

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Honestly, the most daunting part of the whole experience is the amount of water I have to force down my gullet. On Thursday, I drank four liters. Yesterday, I drank over five liters and I’m going to try to do the same again today. Having to do this three days a week, every week makes me want to vom. It also wasn’t fun to have a chatty stranger in my house, albeit a very nice, low-maintenance one (I kept worrying that she didn’t have water or snacks and that her back would get sore in the upright chair). She was only here fewer than four hours, but as my dose increases, I assume the time will increase (most of that was infusing 500ml of saline, the IgG itself only took an hour). Next time I’ll just let her know that I want to rest and meditate through the whole thing and I’m hoping after the next few infusions she’ll just be able to hook up my IV and leave and I can place the subcutaneous needle myself and remove the IV at the end.

So, the plan is to double my dose next Friday to two grams, then increase by one gram each week until I’m at five and hold there for a few months. Perhaps even graduate to IVIG eventually. I’m happy this started at the beginning of flu season, too, because that’s what Dr. Chia recommended. He thought I should get a little boost in September and January and also if I traveled anywhere so I would be less in jeopardy of succumbing to a virus that would take me down. And maybe, just maybe, it’ll make me feel better over all. A lady can dream.

Thanks to everyone who sent positive thoughts my way. You carried me through.❤

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Finally getting the first immunoglobulin infusion…

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The IgG infusion didn’t happen. They called me and said they were missing some small tube or something that was needed for my pediatric dose. It’s a little frustrating since they had literally months notice, but they have been excellent through this entire process–communicative, understanding, informative–so, I’m not annoyed. They asked if I’d like to do last Thursday instead, but I didn’t want to risk any reaction with my period, which came early last month. All I know for sure about anaphylaxis and angioedema is that they happen during a perfect storm of triggers (food, mood, hormones, hydration, pain) that is very hard to predict or control, but almost always involves my menstrual cycle and that is the one thing I can avoid. In the end, my period did come early, so I’m glad I made the choice to wait on the SCIG.

Today is the day. The nurse gets here in a few hours. I’m not out of bed yet. I’m in a lot of pain today and I was awake in the night with terrible vertigo. Every time I turned my head and changed position, the room lurched and woke me. I think it’s probably from the full dose of Zyrtec and Zantac I took yesterday, which I’ve never done before, but it could very well be payback from the 4+ hour journey to the dysautonomia specialist two days ago (more on that anon).

Anyway, the ball is rolling, the die has been cast, the airplane doors are closed (that’s what I used to tell myself when I was nervous about flying–once the doors are closed, it’s out of your hands, so no point in fretting anymore), so it’s happening and I am focusing all my attention on how incredible it will be to have a treatment that might help me feel better. Honestly, I’m dreading the premedications (Benadryl, Prednisone, Zantac, Tylenol) more than the IgG. I already know they do a number on my sensitive, unable-to-detox body.

Please wish me luck and send good juju this way. It makes a difference, I know it does. Thank you for holding me up. As Clarence said, “Remember, no [wo]man is a failure who has friends. Thanks for the wings.” ❤

Addendum: it just occurred to me that I didn’t specifically tell the infusion company to tell the nurse not to wear perfume, so I called her and she said, “Oh, I do wear body spray because I hit menopause and I can smell myself.” OMG. Body spray? She kindly said she would stop by her house and take a quick shower.
“I buy whatever shampoo is on sale, so I hope it’s not too smelly,” she said.
Gulp.
“No, I’m sure it’ll be fine.”
She then said, “I understand about sensitive patients. Remind me to tell you about the lady who was severely allergic to cats.”
Oh, for fuck’s sake.
“I’m very allergic to cats,” I told her.
“Oh, I have cats, so I’ll change my clothes, too.”
This is a nightmare.
She ended with (I kid you not): “I’ll tell you some horror stories when I get there.”

I’m vacillating between guilt at putting someone out (she was SO nice and sweet), frustration at my ridiculous body and total disbelief that a home-care nurse would wear body spray to visit patients and that the office didn’t explain my sensitives to her (they also didn’t tell her about my history of idiopathic anaphylaxis or that I have two big dogs. She said she just got a name and address). Please please please let this go okay.

Second addendum: the nurse is incredibly nice and lives very close to me, so the shower wasn’t a big deal and she doesn’t have a heavy smell at all. We’re half way through the IgG and the saline fluids. All good so far. 💪

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That's my abdomen--just one site for such a small dose.