The weather is great. The day isn't. Just got back from visiting a friend, and there are 2 things I want to talk about. One is about the person, and I'll have more to say about that later; I'm trying to say some of it to him while he's still around.
The other is a warning.
If you ever find yourself in a position where a doctor tells you that you have a serious medical condition, you need to do the following....
- As soon as is practical, you and/or your family need to find out as much as you can from the doctor about the condition, its possible complications, and its future prognosis. There is no substitute for the truth, especially if your life or quality of life are at stake.
- DO NOT STOP THERE. This is your life, not the doc's, and doctors are human. Some are about as smart or out of their depth in your case as the professional nincompoops A.L. describes in this post. Some just have bad days or miss things, same as the rest of us. Go and do a bunch of research about the condition, possible complications (and how you'd recognize them), treatment options, and future prognosis (esp. including recurrence, where applicable).
- As A.L. has said before in another context, the experts work for you. Always, always come back and ask the doctor questions based on your research.
- If it's a life-threatening or life-changing condition, always, always get a second opinion once you've done some research. Even if your doctor is a good friend. Always. Ask the second doctor questions, too.
- If you think the answer you get from a doctor is bogus, find someone who can either explain it so it makes sense, or tell you something else that makes sense. The doctor knows medicine better than you do. But you know your own body best. Those 2 things need to sync up before you're satisfied, even if it costs a bit more time and money. Again, it's your life, not the doctor's.
- Without being a hypochondriac, know what to look out for so that if X, Y, or Z happen, you're headed to the doctor and will mention your condition and relevant facts about it. For instance, if you had kidney cancer (hard to treat, often recurs, can spread to nearby organs), and you feel listless for a couple of weeks, with an upset stomach...
- Find a research program or two (relatively near you preferred) related to your condition, know the intake criteria and what they hope to accomplish, and be ready to fight to get in if it becomes necessary. If you have a cancer that's hard to treat, for instance, look for precision treatment delivery options and tumor blood starvation options. If it's MS, look for treatments that might slow it down. Your doctor does not have the time to do this, which means you and/or your family must - and timing can make all the difference to the outcome.
There are no guarantees. You can ignore all of this and still come out fine in the end. You can do all of these things well and it may not help. We never know what might have been; all we can do is decide to fight, then give ourselves the best odds possible.
May you never have to use this advice. If you do, may you use it well and successfully.
And while you are still able to make decisions outside of a crisis point, decide on the contents of an Advance Directive, and formally execute a Durable Power of Attorney for Healthcare. Each state has slightly different requirements, so no particular link would be useful to everyone.
But the Advance Directive makes you think of how you want to be treated, and puts it in writing. That does two things: it gets a lot of the fear out in the open with your family and loved ones, and it creates a legally binding obligation on your care givers. The PofA gives the designated person the legal right to make decisions for the patient, if the patient cannot do so for him/herself; pick someone who will do what you ask, regardless of his/her own feelings.
Good advice.
Yes on the Advanced Directives! Yes on setting up not only them, but the related Powers of Attorney and other legal delegations. Advanced Directives, living wills, and other documentation as required by your location are crucial, as is choosing people who will implement them for you without reservation or qualm. People with whom you have talked, shared, and discussed, so that they know your thoughts and can and will set aside their own preferences to implement yours. I can't emphasize this enough, as the persons (you need a primary and several backups, I use a primary and two backups) you select can -- and sometimes do -- set aside your wishes as they have the legal right to do. So, chose well in all things, and make the preparations well ahead of time so nothing can be contested from outside either (relatives and others can and will do so for a variety of reasons). Make sure your lawyer knows the gist of things as well, as well as your family or whatever group is important to you. Sandbagging people during a time like that is not a good idea. Consider it part of your emergency preparedness planning -- I do.
I am going to get shot down in flames at this point, but:
Consider so-called "alternative" methods. I do not mean the wacky stuff like reflexology and reiki, but many serious conditions can be helped by this type of therapy - particularly nutritional and herbal.
Example (yes, double-blind placebo-controlled): positive trials on patients with stage IV congestive heart failure (the "you've got a few weeks" sort) and high doses of coenzyme Q10.
There are no such things as alternative therapies, only the ones that work and the ones that don't? Fine. But not all effective therapeutic agents are made by Big Pharma. And some highly ineffective ones are.
Always, always come back and ask the doctor questions based on your research.
Speaking from personal experience -- it helps to write the questions down (especially the names of medications you want to inquire about). It can be hard to remember them all even under the best of circumstances and being upset/sick/in pain in a doctor's office is far from the best of circumstances.
I was fortunate in my own condition (RSD) being quickly and correctly diagnosed and treated (thank you, Dr. Kent!). Still, I did extensive research on my own which helped greatly in bringing to my attention a medication that my mother was taking for a completely unrelated condition and which proved to be extremely effective for mine. I don't, as a general rule, encourage experimenting with other people's pills, but ... sometimes you have to think outside the box.
I would be very careful about mucking around with herbals if you're sick. If its something obvious and time tested, sure it probably wont hurt. But if its obscure it could be very dangerous to a weakened immune system and could theoretically interact with the pharms.
And obviously stay away from anything that reads homeopathic unless you enjoy throwing your money down the sewer.
Mark, no "theoretical" about it. Example; St. Johns Wort interacts strongly with numerous medications, and warfarin interacts with a lot of nutrients and herbals. Use a professional; but not all professionals have M.D. after their names.
I sell this sort of stuff for a living. I know quite a lot, and also know enough to know when I don't know enough (is that grammatical?). I'm also honest enough to admit that I don't know, to myself and client.
If they let themselves think about it, most people know whether the person they are talking to and are supposed to rely on knows what he is doing or not.
One last thing; the most important thing, probably, is to learn to listen to your own body. It will tell you when it needs help or when you are abusing it, if you will listen.
Fletcher's advice is just fine. Just treat the alternative methods the same way you'd treat any other medical intervention (know interactions, etc.).
One of the most enduring myths we subscribe to is that doctors know what they are doing. We have to believe that, given that the stakes are our most precious commodity - life. Medical knowledge however is the product of medical research, and research is not a field most physicians trained for. More likely, those drummed out of the actual practice of medicine, gravitate to administrative or other (research) positions on the unwarranted strength of their medical training. I once had occasion to review the research paradigm of one of the major Pharmaceuticals well into clinical trials. It was dead wrong in its ability to assess the effectiveness of the new diagnostic test being evaluated. It was one of my personal watersheds in the realm of 'things are not always what they seem'.
If you think Doctors know everything, just Google 'Idiopathic'">Google . See just how many diseases and conditions are essentially "cause unknown".
From Wikipedia:
bq. In his book The Human Body, Isaac Asimov noted a comment about the term "idiopathic" made in the 20th edition of Stedman's Medical Dictionary: "A high-flown term to conceal ignorance".
I have an interesting condition that we think might be 1 in 3.5 million or so. Or not, we really know very little about it, and when n<10 we're unlikely to know much more soon. And some very Weird Stuff tm happens to a handful of people. Often fatal, alas.
Here's hoping that the patient gets a 1E-6 "spontaneous remission" as happens, well, one time in a million.
Joe:
I went into hospital for an outpatient surgery, developed sepsis over the next week, and nearly died. I just assumed that my general listlessness and lack of energy was temporary and I'd snap out of it. The surgeon said that had I waited another 8 hours before going to the E.R. I'd have died of kidney failure. Any procedure can develop complications, no matter how innocuous. The main things to watch for in such situations are infection (even if mild, it can exacerbate other stuff) and dehydration. They're killers.