Alpha-Gal Disease

Alpha-Gal Disease I’m 1st recorded anaphylactic to all things mammalian; Alpha-Gal 1st known contracted Allergy from tick bite.

EXAMINATION:  IR PORT PLACEMENT CHESTHISTORY:  Alpha-gal syndrome with the ongoing IVIG infusion scheduled as an outpati...
09/14/2026

EXAMINATION: IR PORT PLACEMENT CHEST
HISTORY: Alpha-gal syndrome with the ongoing IVIG infusion scheduled as an outpatient has no access vasular attempted to replace midline/picc but not successful.

CONTRAST: none
COMPLICATIONS: none
MEDICATIONS:
Conscious sedation was administered under the physician's direction, and continuous monitoring was performed by an independent trained nurse specialist. Total monitored sedation time was 30 minutes. During the course of the procedure, the patient received 100 mcg of intravenous fentanyl.

PROCEDURE DESCRIPTION:
The patient was placed in a supine position. A Time-out procedure was performed. The patient was attached to continuous physiologic monitoring throughout the procedure. A limited ultrasound examination demonstrates a widely patent Internal Jugular vein.

The neck and chest were prepped and draped utilizing full-barrier sterile technique. All personnel wore masks and caps. The operators hands were washed. Sterile gowns and sterile gloves were worn. The patient's skin was prepped with alcohol and then draped with a standard sterile fenestrated sheet. The skin site was then reprepped with alcohol.

The skin and subcutaneous tissues at the base of the neck were anesthetized with 0.5%. A micropuncture needle was advanced into the internal jugular vein under real-time ultrasound guidance. A micro-puncture wire was advanced into the right atrium. A micropuncture sheath was advanced over the wire. The wire was exchanged for an 0.35 guidewire. This guidewire was advanced into the inferior vena cava under fluoroscopic guidance.

The skin and subcutaneous tissues of the chest were anesthetized with 0.5% Marcaine. A 3 cm incision was made. The port pocket was formed with blunt dissection. The catheter was tunneled to the venotomy site with blunt dissection. The catheter was advanced through a peel-away sheath and positioned under fluoroscopic guidance. The catheter was cut to length and attached to the hub of the port. The port flushes and aspirates easily. The port was secured within the port pocket with 3.0 Vicryl sutures. The port was flushed with sterile saline and a spot film radiograph was obtained demonstrating good position of the catheter tip. The port pocket was irrigated with sterile saline solution. The subcutaneous tissues are approximated with interrupted 3.0 Vicryl suture. The skin was approximated with Dermabond glue. At the venotomy site the skin was approximated with Dermabond glue. A sterile dressing was applied.

FINDINGS:
A limited Ultrasound examination demonstrates a patent Internal Jugular Vein. Real-time ultrasound was used to access the internal jugular vein via a lateral approach inferior to the sternocleidomastoid muscle.

Fluoroscopy was used to guide the catheter tip to the high right atrium. A spot film radiograph documents good position of the catheter tip.

IMPRESSION:
Successful ultrasound and fluoroscopic placement of a power-injectable right chest port. The port is ready for immediate use. Ultrasound and fluoroscopic images were saved in the medical record.

09/04/2026

Survived, but wow... 🧠⚡️EEG (electroencephalogram) & wanted to share my experience, especially for my fellow Alpha-gal warriors! Test itself is completely painless. They do a portion with intense, flashing lights called photic stimulation. It was incredibly overwhelming & triggered major waves of sensory overload. Purpose is to look at brain's electrical activity to check for things like seizures, sleep disorders, memory issues, or neurological patterns.
*********************************
Results:

Hi Violet~

Good news, your EEG is normal.

EEG, Routine
IMPRESSION:

This routine EEG recording demonstrates:
1. Normal wakefulness and sleep.
2. No electrographic seizureepileptiform abnormalities.
3. No focal abnormalities

Unlocking your DNA can completely change how you manage chronic health conditions. A simple genetic test reveals your bo...
09/01/2026

Unlocking your DNA can completely change how you manage chronic health conditions. A simple genetic test reveals your body’s unique liver enzyme activity, showing exactly how fast or slow your system processes different active ingredients.Genetic testing results show my body processes some of the prescribed medications I’m taking too quickly, rendering them much less effective. The tests also suggest better alternatives. Next, pharmacists must do their research to find out if an Alpha-Gal safe version of the recommended medications are available. Wish me luck!

To the Friends Who "Get It": Thank You. When you have Chronic Illness, It is incredibly easy to feel isolated, burdensom...
08/31/2026

To the Friends Who "Get It": Thank You. When you have Chronic Illness, It is incredibly easy to feel isolated, burdensome, or completely replaceable. You didn't sign up for a disease, but fiercely chose us- offering accessible love:

1. The Safe Schedulers: For saying, "Any plan we make can be rescheduled”. You completely remove crushing guilt of a last-minute flare-up [health].
2. The Germ Guardians: For choosing FaceTime instead when you are sick, protecting our fragile immune systems without making us feel left out [health].
3. The Quiet Companions: For being the ones who bring a good book to sit quietly by our side during lonely, last-minute hospital stays—asking for zero performance or entertainment [health]. Assisting with transportation, Surprising us with flowers, or safe treats.
4. The Open Doors: For texting, "Call me anytime you’re up for it," handing us the microphone only when our bodies have the budget for it [health].
5. The Low-Stakes Planners: For happily skipping restaurants & crowded spaces to plan food-neutral, body-safe activities centered around A/C, after-sunset, or low-dose walking with easy parking [health].

You don't measure our worth by our physical stamina or productivity [health]. You see who we are underneath the illness. By happily adapting the logistics to keep us safe, you prove every day that we are loved, wanted, & completely irreplaceable [health].

08/28/2026

🍬Recent glucose blood draw measured 36. Just received call from Lab: Hypoglycemia (Low Blood Sugar) Cheat Sheet
Blood Glucose: Typically

08/27/2026

Thank goodness for my Insurance Case Manager. A single phone call shouldn't determine if you get life-saving medical care or get completely dismissed. While having a supportive insurance case manager is an invaluable asset, one person cannot dismantle a broken healthcare system. To everyone else out there drowning in phone tag just to stay safe—I see you. ✊

❤️ To everyone who has ever donated plasma: Thank you! My immunologist recently shared something that completely blew my...
07/30/2026

❤️ To everyone who has ever donated plasma: Thank you! My immunologist recently shared something that completely blew my mind. It took the collective donations of around 50,000 donors to create my recent IVIG treatment. 50,000 people I will never meet, who took time out of their day to help save a life.I am already starting to see positive effects from it! It’s a bit bittersweet, though. I can’t help but think about how different things would be if I had access to this as a child. An overlooked diagnosis caused a massive domino effect of health challenges that I’m still dealing with today.Managing Alpha-Gal Syndrome means constantly fighting an uphill battle, but this treatment is giving me a fighting chance. If you are able to donate plasma, please know that your donation is medicine. It truly matters. 🩸✨

07/29/2026

🧬 Navigating Genetic Drug Testing with Complex Allergies & Alpha-Gal Syndrome if you live with a complex medical profile—like severe drug allergies, Alpha-Gal Syndrome (AGS), or immunodeficiencies—you might look into specialized genetic testing (pharmacogenomics) to find safe medications. These DNA tests are incredible tools, but it is so important to know exactly what they do—& what they miss!
🟢 What the Genetic Test Can Do: The test looks at your DNA to see how your liver enzymes process different medications. It helps your doctors understand if your body breaks down a substance too quickly (making it ineffective) or too slowly (which can cause a toxic build-up). It gives your care team a great roadmap for dosing.
⚠️ What the Genetic Test CANNOT Do: Because this test only measures chemical metabolism, it completely bypasses your immune system. This means:It does not detect true allergies: A medication can look perfect on your genetic report, but your immune system could still trigger a severe allergic reaction to the chemical.It misses Alpha-Gal triggers: The test only evaluates the active drug ingredient. It cannot see the inactive fillers or capsule shells. It will not flag hidden mammalian byproducts like gelatin, magnesium stearate, or lactose.
💡 The Safest Next Steps: If your Doctor orders one of these panels, use it as a helpful guide for liver safety, but keep these boundaries in place:Always Double-Check Fillers: Ensure your pharmacy or a specialized compounding pharmacist verifies that the physical pill is 100% mammal-free and allergy-safe.
🩺 Coordinate Your Team: Make sure your prescribing Doctor, Allergist, & Pharmacist cross-reference your genetic report with your actual allergy list. Knowledge is power, but a genetic test is just one piece of the puzzle! Stay safe & always advocate for your unique immune needs.

A major new medical milestone for me! 🎉 I just completed a high-stakes Gamunex-C (IVIG) challenge in the ICU to treat my...
07/29/2026

A major new medical milestone for me! 🎉 I just completed a high-stakes Gamunex-C (IVIG) challenge in the ICU to treat my Immunodeficiency. Because I have Alpha-Gal syndrome & severe allergies, this required a constant 1-to-1 nurse watchdog over me the entire time to monitor for anaphylaxis.The journey started with a bit of drama. When I arrived, I physically couldn't make it from the parking garage to the Emergency Room. I had to hit the Emergency Blue Light button to page security. The team was incredibly kind—they picked me up & drove me right to ER to get checked in!

Once in ICU, the team immediately started labs, stabilized my hypokalemia, & balanced electrolytes using Zofran & other medications. (The doctor did have a minor clumsy moment & accidentally spilled a bottle of Felodipine across the room—pills literally flew everywhere, which gave us all a laugh!). To make the stay more manageable, I brought my own pre-verified medications & packed lunches from home, which the hospital pharmacy cleared for me.

Because of a very recent hospital stay at another medical center, my veins were completely spent. It took ultrasound guidance, several hours to place multiple IVs, but they got them in! After careful pre-treatment protocols before, during, and after, I successfully received the FULL dose under strict 1-to-1 supervision. Honestly, this was one of my best & most productive hospital stays ever. Everyone was exceptionally kind.

As for how I’m feeling right now:The Good: Absolutely NO allergic reactions! Not even flushed skin. My eye swelling is down, my sinuses are finally dry, my vision is slightly clearer, & appetite is coming back.

Side Effects: body feels slightly flu-like with mild-to-moderate headache. I’m experiencing intense post-IVIG insomnia—feeling heavily wired & utterly tired at the exact same time. I’ve been discharged with super clear instructions. Since it's middle of night, I’m going to nap right here in the car before next early appointment. Wednesday (today) is a full day of go, go, go! Thank you to the incredible team who kept me safe. 🙏💪

07/25/2026

Did my severity escalate due to having Antibody Deficiency (basically, Soldiers in my body stand by & let Marauders invade & never remember their faces), &/or * Positive ANA: Showed both speckled AND homogeneous cells (strongly pointing toward Lupus/SLE &/or an overlap connective tissue disease)- if there’s other out there, message me!

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West Owen K Garriottt
Enid, OK
73703

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