Wednesday, May 9, 2012

I hate IVIG: thoughts on IVIG #4




This post is a bit complaining. Sorry.

I am one day post-IVIG #4. I'm wrapping up my day at work and feeling like stink. My head is throbbing; the lights are hurting my eyes. I'm very much looking forward to going home to bed.

The last couple of treatments, my reproductive immunologist let me have at home with a nurse. It was much easier to be tucked in my own bed, loyal boxer by my side, IV in my arm, trying to sleep through it as much as possible. For some reason, he's now changed his policy and required me to come in to his office. He also requires me to get the infusion in the morning, and since it makes me so sick afterward, means I miss an entire day of work. So I went in to his office and laid on a super-uncomfortable exam table from 8:30AM-2:00PM, fluorescent lights shining in my eyes. The exam table is uncomfortable when not pregnant. Now in my second trimester, it was fairly unbearable by the second hour. I was not a happy camper. I was an especially unhappy camper once the chills and low-grade fever set in. Because I had that reaction, they slowed the IV drip, making the whole thing take much longer. An hour after that, my IV infiltrated, meaning, we had to find a new vein...ugh...

I told the nurse at the end that I don't think I can do this again - go through this again on that exam table in his office (it feels especially egregious that he charges me $400 to use his office, when I'd much rather not!). Hopefully all of my blood work will come back wonderfully this next time and the RI will say I don't need another treatment, but if I do, I'll have to come up with another plan, one that will allow me to at least be semi-comfortable while going through this. We will see. I think the next blood work is in a few weeks.

I am very grateful IVIG exists, and maybe it's actually what's behind keeping this baby alive. I don't know. I wish I had a better sense of that, that I felt more sure of the evidence behind it (that there was any good evidence behind it), because I really don't find the treatment easy. And the cost? Well....yeah...that's sobering too. It is obvious, based on my physical responses to it, that it is powerful stuff. I sure hope it's doing something  helpful.

Tomorrow I see the OB early and then head to the Mohs surgeon for the basal cell procedure. I think I will be very glad when this week is over.

Mo


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17 comments:

Her Royal Fabulousness said...

How awful! How many more treatments do you need?

TurtleMama said...

That sounds pretty bad - so silly you can't do it from your homebase later in the day. I wish there were more studies on this treatment, so you could have more faith in it. You are quite a trooper - hope you don't have to do another one.

Jen said...

Oh wow...that sounds awful Mo. I hope that was it for you.

Kristina said...

Yikes, what a cruddy week. I would have loudly protested about that "lying on the exam bed under florescent lights" situation - horrendous! Bad enough for one or two hours at most! I don't think they can make you do that in your condition. I'm glad they have this technology, too, just in case it's making a difference but it sounds like quite an ordeal. Will be thinking of you tomorrow with the procedure - hope all goes well.

What IF? said...

What a horrible week this is for you. Ugh. The IVIG treatment sounds like pure torture. Thinking of you for tomorrow.

It Is What It Is said...

Wow, that's a whole lot of medical appointments in a row in one week.

I hope that this is your last IVIG treatment because it sounds harsh.

Looking forward to the report from your OB and that your basal cell procedure goes flawlessly.

socialite_baby said...

I'm so sorry, that does sound awful... We're waiting for autoimmune implantation failure testing (natural killer cells specifically) to come back and will likely also have to do this treatment for our IVF then during early pregnancy. I have a few online IF friends who also did it and they all said it's not fun, definitely not looking forward to it if we need it! Hopefully this was your last one though! Stay strong!

Libby said...

That is a long time to be in an office on an uncomfortable table, but it sure does seem like the IVIg might be what is keeping you pregnant. I have done intralipid infusions a few times, BUT I've often wondered if I should have gone with IVIg in stead. My RI is the one who "discovered" the usefulness of intralipids in RPL, so I know she is a believer for my issue which is the NK cells. And you are right about the IVIg costs, ridiculous! Just hope your next labs come back good and you can be done with this torture :) Hope you are feeling better soon.

Jen said...

Hi Mo,

You are not alone in dreading IVIG. I felt very similar to you in your experience. I was always out of commission for a day afterward with flu like symptoms. I also had to take a benedryl just before each treatment because I had fever chills and nausea on the first infusion. It helped alleviate those symptoms during treatment. Hang in there, you can do this. So happy for you.

Alexicographer said...

How utterly (and seemingly needlessly, at least at the margins, and pretty big margins at that) horrible. I'm so sorry.

CeCe said...

ugh, that sounds so BLECH. i hope you don't need another treatment.

Dora said...

Ugh! What a crappy week. I've had a crappy one, too (entering day 4 of a migraine), but you win. I'll be thinking of you tomorrow. Hope seeing your cute, wiggling, waving baby will help you cope with everything else.

Oh, and no apologies necessary for complaining. You're totally entitled. xoxo

myfertilityjourney said...

The sacrifices you are making Mo... but at the end of this you will have your baby in your arms and it will all be so worth it, even without the evidence. Fingers crossed it's the last one you need.

Emily Erin said...

So sorry that you had to endure that; really hoping that it is the last time you have to, or if it's not that you can do it in the comfort of your own home at in the afternoon at least... UG.

I hope that tomorrow's surgery goes well and that you get to see a very active baby moving all around in there!

BTW, any flutters yet? You are entering the time when you'll feel the baby move-- somewhere between 16-20 weeks if I recall correctly... So exciting!

Lorraine said...

Such crap that you can't do it at home anymore! Is there an increased risk of danger now? Hmm...

If you must go there again, bring anything you can to make yourself more comfortable, like going in for delivery. Lamp? Pillows? Thermarest pad? Movies?

If this is what it takes to stay pregnant, then fine - but why make it worse than it has to be? Sheesh! Now my wish for you is that this is the worst you'll have to deal with in this pregnancy.

TeeJay said...

Not cool that he won't let you do it at home or later in the day. I'm so sorry that you continue to have to struggle and be "tortured" by IF. I really wish (as I know you and everyone else does) that you could just proceed worry free and enjoy your hard fought for pregnancy. Hang in there, sweetie.

Lillie Family said...

Found your blog doing an IVF search. DH gets IVIG for a different immune issue. Our insurance pays for it at home and, to be honest, I don't think it is up to the Dr. where you get it. It is just as safe at home with a nurse as in the dr.'s office as long as you are not reacting on the spot and needing an epi pen or something.

DH had the same side effects - horrible headache, backahe for days, dehydration,etc. He actually ended up in the ER on is loading dose two different years afterwards. He needed pain meds to get him through those.

On the plus side, sounds like your Preggo and that is awesome!

IVIG is an amazing product, albiet a little scary. :-)

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