This blog is my record of my journey with my son who had a rare, and eventually fatal metabolic illness. It is the story of the last year and a half of his life, his death, and after. I have shared this journey this in the hopes that is will not only help me come to terms with the realities, but also that someone along the way may find it helpful, as they face a similar journey.

This is my place to comment on events, blow off steam, encourage myself (and maybe you), share frustrations, show my love, grieve my losses, express my hopes, and if I am lucky, maybe figure out some of this crazy place we call life on earth.

The content might sometimes get a little heavy. As an understatement..


People who are grieving may write sad or difficult things and bring you down. This blog may not be for the faint of stomach or of heart. Read with caution and at your own risk.

If you are new to this blog, I suggest reading it from oldest to newest. It isn't necessary, as what I write is complete in itself. But this blog is sort of the result of the "journey" I'm going on, and I think it sort of "flows" better from oldest to newest.

I do hope that in the end you will find, in spite of all the difficult and heartbreaking things, things that are worth contemplating.

Welcome along!

Friday, June 25, 2010

Navigating the Medical System Part Two: More on Medical Reports

I sort of got the feeling that maybe a few people might think I was being a bit unfair to the poor doctor whose medical report I commented on last blog. And I found I had more to say. So here I go. I never said I wasn't long-winded. But that is ok in a blog. Not in a medical report.

Now, nobody like a complainer. So I have always hesitated to let out some of my feelings or experiences here in medical land. I don't want to seem ungrateful, because I am very grateful to the good doctors and other medical people. And it is easier to write about all the negative stuff, and miss the positive, and I don't want to do that either. And I hope you take what I write with a grain of salt. I'm a natural dramatist, with a bit of a wacky sense of humour, so not everything I write is completely serious, even when I am upset or angry. Keep that in mind.

Still, I can't help feeling that being a bit more transparent and honest might help someone else out there. I'm always torn between that and "If you can't say something nice, don't say anything at all." Which is why I always try to at least include the nice and positive, even if I am blowing off steam. Because there always is lot of nice and positive stuff as well.

So remember, what ever my feelings about medical reports, I still do love all the doctors I have right now. And I think they are good at what they do, and I think they even care about Joel too.

It is just that medical reports are a funny thing, a part of that vast "system" that I commented on a couple blogs ago. Not everybody writes em, and for sure barely anybody reads em. Seriously. I can't help but wonder, at times, what they are for.

For example: every time I go to see my eye doctor or my orthopedic doctor, they send out a report. However, not once has either my metabolic doctor or my neurologist sent out a report.

They do not seem to be "mandatory," which is why I feel sort of more free to take exception to what is in them. That might be a bit unfair, as if you are diligent enough to go the extra step to send a report, you might like to think I'd appreciate that in itself and not get critical. To which I could reply that anything worth doing is worth doing well, no?

But now I have to be fair to myself, and say that I don't really feel critical about it. That is a cerebral sort of reaction, isn't it? And what I was writing about was a visceral, gut-type reaction. Less thinking, and more feeling. I just wanted to share how those darned reports made me feel. And they tend to make me feel BAD. Like when you get a bad report card at school.

One of the issues I take with these medical reports is when they have "window dressing" in them. Useless filler. The report I mentioned last blog was from Joel's orthopedic doctor. All I needed it to say was "Joel doesn't need orthos at this time as he is still quite flexible, but he may need them in the future as his ankles show signs of stiffening. We adjusted his bath chair and are looking into options for a swing." And that is pretty much it. I don't care how much medical jargon he uses, and I expect him to use it. But the information conveyed should sort of be what is necessary.

And let's cut out all the filler, like speculations on whether Joel has Zellweger Syndrome, or NALD. Or at least leave that for my metabolic specialist. Who doesn't write reports and absolutely refuses to speculate on the Zellweger/NALD/IRD issue, even in person.

And here is my advice for any medical "newbies." I was very naive when I started this journey with Joel. When I was asked who to send any reports to, I eagerly filled in the names of Joel's every doctor. Good, I thought. Everyone has the info and they are all up to date.

Maybe you are less naive than I. Maybe you already realize that busy doctors with hundreds or even thousands of patients do not even glance at these reports. If you don't already realize this, then trust me, they don't.

(By the way, please also realize that I am not finding fault with the doctors on this one. I understand that if they actually spend good time with their patients they just can't afford to read the 500 reports that cross their desk each week.)

What actually happens is that there is a nurse or medical assistant who read through all the mail. She or he files it appropriately. If there is some super important info, like the patient has either died, or been miraculously healed, he/she may flag the memo. Or more likely, just tell the doctor the pertinent facts.

And in my experience with doctors, I can tell you of one exception to this rule. Oddly enough, Joel's hematologist (of all people!) either reads the reports as they come in and then somehow remembers them, or more likely, actually reviews Joel's file for any new info right before his appointment.

I came in to an appointment with him about three months after the eye doctor has sent his report, and the blessed man made a comment about Joel's progress in his visual skills. I almost tripped over my jaw and I fumbled to find an appropriate response to his comment.

This is one reason why I love Joel's hematologist. I will forgive that man many things just for showing that one time that he took the time to read Joel's info. And if you find a doctor like this, hold on to them. Maybe send them Christmas cards. Or bake em cookies. But appreciate them.

It really helps me now that I have learned all this. I have more realistic expectations, and if there is anything important for them to know from a report somewhere, I try to remember to tell them in person when I see them.

But it sort of makes me wonder who these reports are really for? I guess they are just there to pad out Joel's file? Maybe they are for me so I can keep track of things? I can tell you this, they are NOT for emergencies where the doctor can quickly check the info he wants. Because finding any info in Joel's huge file can take quite awhile, and if there is an "emergency" type situation, they are just going to come and ask me directly. Trust me. They will all think I am better than that huge, cumbersome file, and with come straight to me.

In any case, reports would be a lot more manageable if all the useless filler were left out. After all, doctors are so busy. Why not be to the point, both for the writer and the reader? Maybe if the other doctors didn't have to wade through two paragraphs to get to the point, they might read the reports that come across their desks? I'm just saying. Maybe there are three sure things, death, taxes, and medical reports. But maybe medical reports could be made more palatable for me, the primary reader. Wouldn't I love to get a hand on that file, go through it with a red pen and.... Hee hee hee. Once a teacher, always a teacher!

Which leads me to the other doctor who writes these reports. I didn't say anything about his reports. They usually have a bit of "filler" in them too. And every now and then, maybe they say something in a way that I don't absolutely love, like the Zellweger's thing. But I will forgive my eye doctor quite a bit here. Because every visit he ends with a little tape recorder where he actually dictates the basics of his letter right there in front of me. And sometimes even looks up and checks with me for clarification or to be sure he got it right. Can you imagine? Pretty freakin fantastic!!!!

I sure don't expect any other doctor to do that. But I absolutely applaud that excellence! Wow. How kind, how considerate, talk about going the second mile, to make sure that I am party to what goes in his letters, to try and minimize any misunderstandings or little "surprises." In fact, maybe I should put his name, along with Joel's hematologist, in for doctor of the year.

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