This is a frustrating, but understandable aspect of my medical case–helping doctors understand how to approach ordering medical actions for me.
(Mainly how it’s different then how they help the majority of their other patients–explain why the rules are different.)
As my immunologist once said, most doctors will only have one, maybe two, patients in their *entire careers* of practicing medicine like me.
Understandably then, it makes it difficult for most doctors to be able to switch gears when they meet someone like me.
But in order for me to stay alive, I need doctors who can make this shift–it’s absolutely essential in order for me to stay alive! Finding doctors who are willing to take action in the dark–
But finding these doctors, is not an easy task.
In addition to occurrences in my own medical past, a great example of the importance of this different medical approach to my survival, is what happened with my grandfather, who had this disorder as well…
When he was on his deathbed dying of colon cancer at the age of 46, after having suffered with numerous health problems his entire life,
the doctor treating my grandfather turned to my uncle and said,
“He was right. If we had listened to him, we could have saved him. Now it’s too late.”
I guess my grandfather had been complaining of stomach pains for long time, but back in 1967 we didn’t have colonoscopies and CT scans. They did have xrays (which I’ve had numerous false negatives myself over the years),
but due to all of my grandfather’s false negatives to the test they did have,
his doctors kept telling him he was fine, not to worry, inspite of the fact he kept telling them something was wrong.
So eventually, that feeling he had that something was wrong, got to the point it was undeniable, and the doctors could see it in an xray,
But by then it was too late.
“We could have saved him.”
Those words echo to me all these years later. Having died years before I was born, I never knew him, but I feel his spirit everywhere I go.
Nowadays in medicine, I don’t think most doctors would admit such a mistake to a close relative of a dying loved one–medicine has become too impersonal–
But in back 1967, things were different…some things better, some things worse.
Hopefully, what’s better about 2012 can save me now and save my son before he even realizes the severity of the health disabilities he’s going to face when he gets older…
And process to getting the answer, begins by finding then helping doctors understand what’s happening to me.
I need these warriors.
Begin forwarded message:
Date: January 27, 2012 1:26:56 PM PST
To: Dr. K
Subject: Understanding immune deficiency and antibiotic therapy
I had another great conversation with Dr. F today, and he mentioned he would like to talk with you about immune deficiencies, and how antibiotic therapy differs from patients with a normal immune system.
The example I used with him: a normal person may need a month course of IV antibiotic therapy for infective endocarditis, then six months of oral therapy,
but a person with an immune deficiency may need six months of IV therapy and two years of oral therapy. That kind of thing.
I said if you think of a person with a normal immune system has having a 100 troops to fight infections, I have 20.
Therefore, due to the fact the bartonella infection got so severe (point to my brain MRI, which has recently been documented to not be MS–and when I *first* had that MRI done Sept 05, it was raised then that the lesions could be infectious in nature.
Due to my clinical response to antibiotics (and also relapses I endure when therapy has stopped, many symptoms of which neurological are in nature),
it’s now looking more likely those lesions in my brain were from an infectious source from the beginning.
Therefore, due to the severity of the infection before the onset of treatment, combined with my body’s inability to fight off infections in general, has forced me into a ongoing state of antibiotic therapy–hence why we need to find the answer so badly (so I can get off of them! 🙂
If a normal patient had had my infection as severe as I had (doubtful to start, as in a normal person it most likely wouldn’t have gotten so bad in the first place),
a normal person wouldn’t have needed such long term antibiotic therapy.
(Hence why we’re struggling so much to solve the deficiency–and also why I need IVIG therapy 🙂
Realistically, I probably have about 60 troops, where a normal person has a 100, but it’s deficient enough that my son and I keep having problems.
I think Dr. F is going through a process of trying to create a framework for how to approach my case–not an easy task, especially when he’s had years of training and thousands of patients who have proved to him the approach he normally uses is very helpful and effective.
It’s kind of like learning to walk a little different, and that’s not something all doctors can do. I like him though, so I hope we can help him understand why we can’t use documented test results to build a diagnostic assessment of me as easily as we can with other patients–
Due to my immune deficiency, I’m going to have a *much* higher false negative rate, meaning I will need medical action even though my test results are normal, which happens to me with a much greater frequency than 99% of the population.
The good news is, I have documented a number of times in my past of false negative results, which then medical action by doctors who just listened to me and ignored the test results (making a clinical diagnosis), has then proven a disease or condition–
This makes future medical actions more easily justified then when I first arrived at Cedars in 2005, without any of my previous medical records in hand 🙂
Working in this void of not having tests to easily guide medical actions, of course, makes many doctors uncomfortable–hopefully, someone somewhere out there can fix me up, so my body will respond to diseases normally–then my test results will more accurately reflect what’s going on inside my body–like everyone else 🙂
But until that day, I need doctors to understand this bizarre and unique framework for ordering tests, medications, surgeries and other medical things for me…for example, why I’m going to need exploratory surgery more often than average. Sometimes, it just comes down to cutting me open and taking a look inside–
And if a doctor doesn’t understand why this approach is so life-saving for me, they won’t do it.
Due to the complexity of understanding a case like this, I know it takes time–it’s definitely not going to happen overnight :). It’s all just coming from a consciencious desire not to hurt me–
The *really* good news is, is that his office draws and ships blood, so my son, his father,
and I will be able to go to his office to send our blood to Philadelphia (and other places in the future 🙂
I hope everything is going well for you–I really appreciate everything you do–