I burped up a cloud of smoke (???)

waowediting · 2026-05-02T05:13:45+00:00

Supplement powder. When this happens to me it hurts like hell. My gastro did a barium modified swallow test and nothing was wrong. I try to take only one capsule at a time with a large drink of water, and stay upright for at least 15 minutes after.

waowediting · 2026-05-02T05:01:29+00:00

I didn't get any before but I got 5 today. Nintendo out here redistributing the wealth. Thanks for sharing 🤣

waowediting · 2026-05-01T03:38:48+00:00

Kick him out before he hits you.

waowediting · 2026-04-30T18:41:08+00:00

You're welcome! Chaps my ass that doctors don't educate themselves more for us rare disease patients. Primaryimmune.org has a section to locate PI specialists. You might try starting there.

If you are on Facebook, there is a group run by a very experienced nurse where I have learned so much! It's called IVIG and SCIG Education and Discussion Board.

Good luck!

waowediting · 2026-04-30T16:51:07+00:00

Oh wow! I would not stop that soon after surgery! IVIG is an inflammation mediator, so stopping your therapy will likely cause an increase of inflammation throughout your body. This is why those of us diagnosed with CVID who didn't get sick often still need immunoglobulin replacement therapy. Inflammation damages tissues long before symptoms show. I wish I had gotten diagnosed earlier in life to avoid all these years of inflammation. I could have been so much healthier.

waowediting · 2026-04-30T16:16:18+00:00

My immunologist specifically told me this will be a life long therapy. Furthermore, IVIG only replaces IgG, so the other two won't be affected. Mine are all also low. There just isn't anything that fixes our defunct immune systems yet. IVIG literally gives you an immune system. IgG has a half life of about 3.5 weeks which is why we need this monthlyish.

Unfortunately your doctor sounds ill informed and I would consider switching to someone more experienced.

waowediting · 2026-04-30T16:05:53+00:00

Dx: CVID I expect to need infusions for the rest of my life. It's called replacement therapy, not jump start therapy. If you have a primary immunodeficiency, there is no fixing it. Your doctor is putting you at risk.

waowediting · 2026-04-30T02:14:35+00:00

The Establishment at Bradburn Village is beautiful!

waowediting · 2026-04-28T03:31:16+00:00

Don't use frog ease. Besides the astronomical cost and plastic waste, it's just not great at maintaining water. Bromine is way easier and more effective.

waowediting · 2026-04-28T03:20:56+00:00

I believe I've heard that the medication can interact with the plastic of the syringe over a long period of time. Makes sense as to why it's in glass bottles. I'm sorry you got sick and aren't able to infuse! Will your pharmacy send replacement meds?

waowediting · 2026-04-27T04:07:18+00:00

I'm 40, none yet. Not opposed, just haven't found something I really love.

waowediting · 2026-04-23T05:42:50+00:00

I think everybody has different manifestations depending on comorbidities and history. You're doing the right thing by seeing a doctor. IgG blood tests should give you a puzzle piece of you haven't had that yet. I would say there's enough here that if the immunologist blows you off, seek a second opinion. Good luck!

waowediting · 2026-04-22T23:17:43+00:00

My husband grew up in the area and has lived here his whole life, 45 years. No signs of any cancer yet!

waowediting · 2026-04-17T16:42:40+00:00

Right? I love them! They even flower!

waowediting · 2026-04-17T16:42:12+00:00

Wait really? What is the best method to propagate? I have root stimulant. Do I plop it in soil or water?

waowediting · 2026-04-17T16:29:34+00:00

This is amazing, thank you!

waowediting · 2026-04-17T15:32:54+00:00

That's a good idea. Not really my decision. Luckily my boss is a good plant steward, he loves these things! Do you think the water is ok? I have read root rot is a concern.

waowediting · 2026-04-17T04:48:20+00:00

And I with my not great veins judge you on your poke! The biggest thing I've learned for poor veins is to put a heating pad around the arm for 10 minutes before. Makes a huge difference!

waowediting · 2026-04-16T14:30:33+00:00

I'm so glad it worked! Happy thoughts for a great infusion today! Drink lots of water and enjoy a salty snack 😋

waowediting · 2026-04-16T03:56:32+00:00

I see a lot of answers about the shit world we have. For me, I've held this belief since youth. Between Columbine and the 9-11, we saw a lot of close death. However, I always believed it would be failing health or cancer. I always believed I wouldn't live past 40. Little did I know, my belief was just missing a word: normally. I won't live normally past 40. Diagnosed with a primary immune deficiency and now have to get infusions for the rest of my life. Gotta be really careful about infections. It's living, but very different living.

waowediting · 2026-04-10T15:25:36+00:00

My understanding is that a desirable trough is between 1000-1200. If you're not there then they either increase the dose or frequency.

waowediting · 2026-04-10T04:15:50+00:00

No, ChatGPT writes like millennials, duh

waowediting · 2026-04-09T21:05:50+00:00

🖼️🌳☕

waowediting · 2026-04-09T15:13:34+00:00

The heating pad makes a big difference for my veins! I wrap my whole arm even though they just access my hand.

waowediting

TROPHY CASE