One of My Guardian Angels

Dr. Divekar. The immunologist who originally diagnosed me with CVID after I was consistently ignored by UC Health. He was the one that finished what UC Health started. He was the one who wrote the need for IVIg letter. To only be ignored by UC Health, and told “I’m just dehydrated”.

Finding Dr. Sarid was a blessing in disguise. Both of them have been my champions.

After the invitae test changed, the ATM gene mutation I don’t carry, I have it. When the classification changed to Pathologic, the Geneticist kicked off a flurry of appointments with Mayo. A familiar face was on the list. Dr. Divekar.

We spoke today for a very long time. Going over the past year, the STEMI, the mold, the surgeries. His patience and ability to listen is something that really no other doctor possesses. He lets me talk. Theorize. Strategize. Swear. Because he gets how frustrated I am. Being ignored. Not being taken seriously.

We focused on the deletions of DNA as time goes on. That this “may” manifest into something more as time goes. Whether it is auto-immune, organ-related, or malignancy.

I did sent him the night before the labs I’ve gotten that I feel are important. Where the WBC is high. ESR/CRP showing that there is a high load of inflammation. Just how I’ve felt the past year. The extended mold exposures. Pathology from the sinus surgery. 2021 showed I was reactive level 2 to Alternaria, vs Sarids new check showing I’m stage 4. Also showed him the genetic deletions for mold-related things seen back in 2018, but nothing was done about it.

Which all this data that I have. Organizing it. Creating the timeline, and giving it to Dr. Divekar allowed him to create a rock solid game plan for the next 6 months. Obviously the IVIg, and Xolair treatments stay as is. But based on further testing that we need to do, we may need to go on other biologics that can help block the inflammation pathways. But again, it’s all based on surveillance. Constant monitoring. Using this data to show trends.

He recommended that I get a respiratory lung function test yearly. He also recommended that we get gastroenterology involved with yearly screenings. From the endo side, and unfortunately, the other side 🙁 (I’ve had it before, it’s not fun).

Another referral is, is a Dr at Mayo that specializes in bone marrow / immune dysregulation. This appointment would be in person. As they would most likely take a bone marrow biopsy to look for defects within my marrow since we know the ATM gene deletion exists.

I just love how all the hard work I’ve done, just pays off with Dr. Divekar. No stupid looks. No “you’re crazy” responses. I have a path forward.

Secondly, I got notified that my scan is ready to schedule at Swedish. The Indium-111 Tagged WBC Scan. Which the scheduler was unsure if this was the way to proceed or not, so she wanted to talk to the radiologist first. She would have to call me back.

She called back within 30 minutes, radiologist agrees with the plan both Kaufman and Hepworth have put together.

So Tuesday, I have to go to Swedish to have my blood drawn. A lot of it. Thankfully I have my port. Once the draw is complete, they send off my blood to have the WBC spun out, introduced to the Indium-111 radiotracer, then around noon or so, they give me back my radioactive WBC

At the end of the day, I will then be scanned, which takes an hour. Wednesday, I return around noon for the 2nd scan, then Thursday, same time.

Hopefully this will provide insight as to why my WBC is so fucking high. My inflammation markers through the fucking roof. Will show Hepworth where to focus. And give Infectious Disease the pathology they need to determine what’s the right treatment here.

Today I’m just tired. Wiped out. My body just feels done with everything. It’s been doing so much overtime for the past 3 years, it’s just telling me to take it easy today. I am reaching out to HR to potentially extend my WFH for at least another 2 weeks so we can get through this. So I’ll see what they say.

This is all I got for you today.