As anyone that has read my bio (about the Curmudgeon) knows, my son suffered a relapse of leukemia in September of 2009, and my main focus in life since then has been helping him through the treatments, including the mother of all medical procedures–a bone marrow transplant.
I haven’t written much on the subject, mostly because the blog was a diversion from the emotional and spiritual grind of dealing with him and his countless physical issues.
Today we had clinic. We usually go to the clinic every two to three weeks, to check his blood, liver and kidney counts. Every single visit is fraught with the possibility that this visit would be the one where it’s finally determined the situation is hopeless. Today was no different. It was determined about a month ago that the kid has chronic graft-versus-host disease (GVHD), a complication of the transplant where the new bone marrow attacks the host body. In some respects, it is very similar to rheumatoid arthritis in that it is an autoimmune disease, only with a bone marrow transplant, the immune system doesn’t belong to the body it is attacking.
I could write a book about the foolishness I have encountered whilst dealing with doctors. It seems that a great many doctors, though they may know every latin term for bodily parts and conditions, haven’t a clue how to think logically in deciphering cause and effect relationships. The body is a nearly infinitely complex entity, but there are causes for effects with everything that happens. The trick is to know how to tease them out of the data.
So today, the kid’s combined blood counts showed the marrow was depressed, i.e., the counts were low. Which is precisely what should be the case when treating GVHD with steroids and immunosuppressants. Yet the doctor wanted to do a bone marrow aspiration, to make sure there wasn’t a relapse of the leukemia. There was no reason to be suspicious of a relapse, or to do an invasive procedure to check for one. So I told him no. I said that we should just decrease the steroids and immunosuppressants and see what happens. He wisely agreed.
But why did he have to scare my son like that? Because the coin of the realm in the medical profession is fear? Pffft. What a weasel.
I know that my son can relapse at any time. I also know that a low platelet count is hardly conclusive evidence that he has. I wanted to smack that doctor. Like I’ve wanted to smack him many times.
I think I’ll start blogging more about my son’s transplant, though. There’s quite a bit, good and bad, I’ve learned about medicine, the medical and hospital bureaucracies, and even about health insurance companies. Maybe it would help others if I share what I’ve learnt.
Today I’ll leave you with how ridiculous insurance company rules sometimes are. My son developed Reynaud’s syndrome as a result of the GVHD. It is a condition whereby the tips of the fingers (and sometimes also the toes) get cold and blue, as if the body were hypothermic, even though it isn’t. While cold weather usually is the trigger, the true source of the problem is a body that is fighting with itself. Treating the symptoms of Reynauds requires improving blood flow to the extremities. Guess what works beautifully for that? Viagra! Yet the insurance company wouldn’t approve his prescription, unless he was over fifty and a doctor was treating him for erectile dysfunction. Get that? The kid couldn’t get Viagra for a real condition because the insurance company only pays for old farts that can’t get it up anymore. Except that the doctor prescribing the Viagra had to prove it was an effective drug to treat his condition. After about a month, they finally received sufficient documentation from the doctor’s staff and relented, approving the payment for his prescription. But really? I pay insurance premiums so old men can get their shriveled penises erect, yet my kid can’t get a drug approved that is being used for the purpose it was designed for? Astounding.
There’s a lot more. Like I said, I could write a book, never mind a blog.