I just wrote this email to David’s father, who is just like my mother in terms of not wanting to deal with David’s immunological problems.
I understand it’s easier to just bury our heads in the sand and pretend that somehow it will all go away on its own–trust me–I would *love* to do that–
But denial almost cost me my life. Denial hindered my relationships with my first doctors here in Los Angeles, because my denial meant I didn’t have my medical records or that I couldn’t even give an accurate assessment of myself. I wanted to be normal, I wanted to be healthy, and so that’s what I said and then it hindered doctors from helping me faster.
There is no room or time for denial when you’re dependent on medical care to live.
Just face up to the fact something weird and spooky is going on, and then figure out how best to deal with it.
Denial leads to death.
Begin forwarded message:
Date: July 28, 2015 at 5:18:22 PM PDT
Subject: David’s immunological tests
The most important tests are monitoring his response to the pneumococcal vaccine (both David and I have had an impaired response to the vaccine, which is the strongest marker of our deficiency), as well as his T, B and NK cells. Both our T cells and our NK cells tend to be low normal or slightly below normal.
They usually also monitor our response to other vaccines, which tend to be normal. (Though I had an impaired tetanus response recently as well.)
This is why our deficiency is stumping doctors–there aren’t big dramatic red flags, but there are many signs. That’s why I think we have a partial immune deficiency–it isn’t dramatic enough to make us the bubble children, but it’s bad enough to cause many problems.
Many digestive cancers and skin cancers run in our family as well. My father had melanoma and throat cancer, his brother had throat cancer, and my grandfather died of colon cancer at 46 (long before I was born). My father also had a lot of heart disease as well.
I’ve already had many polyps in my digestive tract (colon, gallbladder), as well as pre-cancerous lesions in my esphogaus. I’ve also had nasal and uterine polyps.
The key is to keep monitoring everything–cutting those polyps out before they’re a problem. This is what I mean when I say David is going to need access to healthcare the rest of his life. Hopefully, we can start Noah on IVIG therapy soon, then he’ll avoid many of the problems I’ve had.
The IVIG therapy I’m on is over $10,000/month (Hizentra sub Q, so I’m able to travel with it), which I’ve been able to get for free from the Canadian government. Have you even noticed I haven’t been hospitalized in a long time? My lack of being in the hospital isn’t because I got bored of hospitals (in fact, I’ve never liked being in the hospital–dealing with arrogant medical personnel is not my idea of a fun day).
I haven’t been in the hospital in a long time directly because I’ve been on IVIG since Dec 2013.