Kate’s CVID Journey

Kate’s CVID Journey A page for me to share my story! I’m a mom in my forties, newly diagnosed with CVID

The infusions are definitely helping keep infections at bay - but man it’s a gamble on what side effects I’m going to ge...
04/08/2025

The infusions are definitely helping keep infections at bay - but man it’s a gamble on what side effects I’m going to get!

Dyshydrotic eczema one time, migraines another, and this time? Spots.
Everywhere. Except my hands, feet and face. Even my ears have spots! 😂

They don’t itch, they don’t hurt, I don’t feel sorry for myself - but just a weird thing that happened. This too shall pass.
Or it won’t. And I’m just gonna be spotted.

There are worse things I suppose.

Bandaged up like a l***r. 😂 Story time : rarely, IVIG infusions can cause something called dyshidrotic eczema. It’s tiny...
03/09/2025

Bandaged up like a l***r. 😂
Story time : rarely, IVIG infusions can cause something called dyshidrotic eczema. It’s tiny terrible blisters that hurt and ITCH LIKE CRAZY and it’s covering both palms.
Keeping it covered with a steroid cream and bandages, doc said it should be better in a week or so. Just in time for the next infusion lol
Hopefully taking Benadryl BEFORE the infusion and slowing down how fast it infuses will reduce the chance of this happening again.

Got new hardware. Heart monitor for two weeks. On a different antibiotic now, and I think it’s actually helping! No feve...
02/16/2025

Got new hardware. Heart monitor for two weeks.
On a different antibiotic now, and I think it’s actually helping! No fever today!
Having some more tests done soon to see if the immune deficiency is more extensive than originally thought.
The doctor had thought that the infusions would help more than they have. But evenIn limbo for now.
Continuing with infusions, looking for more answers.

Made it four whole days without antibiotics before I got sick again. Same respiratory gunk. Also, cold sores IN MY NOSE ...
02/04/2025

Made it four whole days without antibiotics before I got sick again. Same respiratory gunk. Also, cold sores IN MY NOSE - which is rude. My CGM caused a skin infection. It’s like what little remaining immune system I have has gone on strike. So, levaquin again, and big doses of antivirals again.
Currently falling apart.
Unrelated, if my hands get wet too often, the skin cracks open. They need to make thumb-shaped bandaids. Also, onion juice HURTS.

Need Cobb salad.
Back to chopping.

Here we go!! Got books to keep me company. ♥️ 📕
01/30/2025

Here we go!!
Got books to keep me company. ♥️ 📕

I wonder why I bruise along the vein they put the infusion into?
01/16/2025

I wonder why I bruise along the vein they put the infusion into?

Rest? Move around? Stay in? Go somewhere? Sleep? Coffee?! Don’t eat? Eat? All wrong. I will say, having a little project...
01/16/2025

Rest? Move around? Stay in? Go somewhere? Sleep? Coffee?! Don’t eat? Eat? All wrong.
I will say, having a little project that I can get done gives me a little boost. I just have to keep them small.
Yesterday it was making butter. Today will probably be taking a shower. 😂

The cost before insurance is even more bonkers than the cost after. 🤯 One infusion.
01/15/2025

The cost before insurance is even more bonkers than the cost after. 🤯
One infusion.

Basically what happened at Ortho Northeast. FYI, the pain is from the flare up of the MCTD, but thanks for totally dismi...
01/13/2025

Basically what happened at Ortho Northeast.

FYI, the pain is from the flare up of the MCTD, but thanks for totally dismissing the 50lb I’ve already lost because it wasn’t enough. 😂

Doctors man, I tell ya. Sometimes the fast easy answers aren’t the best ones, and I know they’re always in a hurry. So thankful that my immunologist and rheumatologist aren’t like that!

But, good news, I don’t have major arthritic changes in my knees!

Hahaha
01/11/2025

Hahaha

Day after Infusion #2Tired. Nauseous. But I’m out of bed!It’s just the couch, but hey! I’ll take what I can get. 😂 Slep...
01/10/2025

Day after Infusion #2
Tired. Nauseous. But I’m out of bed!
It’s just the couch, but hey! I’ll take what I can get. 😂
Slept 12 hours last night. Going to focus on resting today. See if my immune system can’t figure out what to do with all these antibodies I got yesterday!

This purring cat (Poe) has taken up residence on my lap so I am stuck on the couch anyway. TRAPPED!

At least there is a comfy couch in the infusion room! It makes me so sleepy… I am hoping they start helping soon.
01/09/2025

At least there is a comfy couch in the infusion room! It makes me so sleepy…
I am hoping they start helping soon.

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Fort Wayne, IN

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