Monday, April 6, 2009

How To Be a Smarter Patient-Part Two

Lesson 11
Over my 19 years as a patient, I have had a doctor strangely come to my bedside and cry, I had another only return my calls at 11:30 at night, another told me we would be seeing each for the rest of my life, only to then have a follow up conversation with him several days later where he told me that he wished me luck, but that I should be seeing another doctor for follow-up. All these things at the time seemed strange, but looking back now with hindsight, I know that all of these responses were indications of either things that were not right in their own lives, or in the most egregious cases…negligence on the part of that doctor…so listen to your gut. If it doesn’t feel right, it probably isn’t.

Lesson 12
Request and read all your test results. You may think you won’t understand them, but in time you will know them better than any doctor you see. When you know them, you will be able to notice even the slightest changes in them…this can save your life. Don’t trust that your doctor will be reading everything that is sent to him. The best doctors do, not all doctors are the best doctors.

Lesson 13
If you know there is something wrong with you, there most likely is something wrong. For years in between being diagnosed wrong, and being diagnosed right, I complained of various different symptoms. My tumor was fairly slow growing; the yearly MRIs indicated that “it may be larger due to angle or technology”. Instead of this being an alarm bell, or at the very least an indication for further testing, my doctors were lulled into a state of complacency. I had been seen for years, looked quite healthy, and so I was probably just overreacting. I wasn’t. The tumor that looked slightly larger every year, was slightly larger; by the time I found a doctor that listened to me, and didn’t just look at me…this tumor had grown to twice the size that it was when it was originally diagnosed. None of these previous doctors had compared the most recent MRI with the original MRI to see that it had grown. Listen to your gut, and campaign heartily for it.

Lesson 14
Don’t be wowed and wooed by credentials. Just because a doctor has graduated from an Ivy League school, and has been a resident at a top-notch hospital, does not mean he is the best doctor, or for that matter the best doctor for you. I have heard it said that a doctor can graduate from a highly regarded school and be the last in his class (barely passing), he still gets the same degree. Think about that. Don’t be blinded by credentials. I have found that the best doctors will out. When you immerse yourself in improving your health and start to research doctors, you’ll find that the same names will start to come up again and again…they will be mentioned by patients and doctors alike, and they may not all have Ivy League diplomas.

Lesson 15
Likewise, beware of the paper-writers. Doctors write papers to get published and be noticed. More papers do not translate to better doctors. Also not all papers that are written by a doctor will pertain directly to your situation. A doctor may be well versed in one area, but not in the one you need. For instance, I found out much later (when the internet was available), that the neurosurgeon that did my first surgery was very well known for epilepsy. He had written many papers on the subject, and so because of these papers he was a well-known neurosurgeon. I don’t have epilepsy. Even though epilepsy is a neurological disorder, and he was highly regarded in this area, he knew relatively little about what I had…did he say so? No. He was a highly regarded Ivy League neurosurgeon, at a top notch New York City Hospital…he had so much…but he didn’t have what I needed. Unfortunately, I didn’t know this until it was too late.

Lesson 16
When you are seriously ill, look everywhere…as though your life depends on it. Many insurance companies will pay for a doctor who is in the plan even though they may not be near where you live. Often we choose a doctor near us, not because we’re unable to go to a different doctor, but because we don’t know that another doctor may be better suited to our problem that is located not so near to us. There is no substitution for research. Research, research, research. We will comparison shop for almost everything in our lives, why not our health? If there is a doctor you think would be worth seeing, do know that you can do what’s called “self refer”; the doctor of course must be in your insurance plan to do this. To self refer you ask you PCP to give you a referral to a doctor you want to see. This follows the rules of the insurance plan, and gives you the freedom to see whom you think you should see. If the doctor is not in the plan, you’ll need to ask yourself how important it is to see that doctor; if they’re not affiliated with your plan, you don’t need to be concerned with referrals. If a doctor is not in a plan, keep in mind that with all likelihood neither will any test, or follow up care that this doctor recommends. This needs to be considered carefully…without the insurance, getting better can be even more expensive than if you don’t have it. This may seem obvious, but many people don’t know this until they have to deal with a life threatening illness. Insurance plans can be frustrating to say the least; I have had my problems here as well. Most...not all of the conflicts that arise during medical care can be debated and approved. Which brings me to Lesson 17…

Lesson 17
Sadly it is the sick person who often ends up having to be the one to keep track of the medical bills, negotiate the bills, argue the bills-this is so unfair. Having someone in “your village” to do this for you, will be absolutely invaluable. Knowing that you need this person a head of time will save you so much anxiety. Arrange it with your insurance company.

Lesson 18
As a patient, be careful about what/who you let into your “cone”. I created this blog to allow people who had Chondrosarcoma to read about my experience, and hopefully learn something from it. I also created it to let my family and friends know what was going on with me when I didn’t have the time, energy, or voice to tell them all individually. Other people walked through the door however, people who felt compelled to tell me their stories, not always positive stories…in fact the opposite. I needed to develop a bit of a tough skin for this, I had to remind myself that everyone is different, that no two medical situations are exactly the same, and that what may be the case for one person, did not mean it would be the same for me. In the end, the good outweighed the bad. This Lesson is not only about the Internet, but for all of what you allow in…staying positive is so important, don’t let anyone rock that boat.

Lesson 19
On the other side of that same coin, you will find friends and family members that will put a different spin on things. There are the “gloom and doomers”, and there are the other people that will tell you not to be depressed when you’re depressed (it will be hard not be depressed some of the time), to be appreciative instead for all that you do have. I get the intentions of these souls, but the patient needs to have the freedom to feel what they feel…and it doesn’t mean they are not appreciative of what they do have, they’re just miserable about being sick.

Lesson 20
Do not forget the power of the word of mouth. If you’ve had a bad experience with a doctor mention it. A most random thing happened to me, I was having a conversation with a friend about a doctor that I had been seeing for years, but had since stopped going to him. He was dismissive, surly, but supposedly knowledgeable. Ultimately, this doctor turned out to be a nightmare. He didn’t read my MRI’s, and missed the opportunity to truly help me. I saw him for 14 years. I know now that he was too busy thinking about him, to ever think about me. I was telling a friend about this doctor, and they said wait a minute “What is your doctor’s name?” I told him. He said “I saw that guy, he was the worst doctor I had ever met, I almost got into a fight with him”. We need to let our friends know when we’ve had a bad experience with a certain doctor. Doctor’s need to be made accountable for their actions. Not too long after that conversation, I was discussing the same doctor with another friend, and they too had seen him, and found him to be all the things I just mentioned. We all could not have been wrong. There are a few websites, for instance that allow you to speak out about a bad doctor…or a good one; but generally, there isn’t enough information out there about the “bad doctors”. The ones that cause serious harm or death, are sued, and their licenses taken away. The statute of limitations to bring suit against a negligent doctor is 2 ½ years from the date that you last saw that doctor; often you won’t even know if you’re doctor has wronged you until way after that amount of time. The doctors that may almost kill you, or the doctors that have caused harm but you don’t come to realize that until 2 ½ years later may still be out there. Talk to your friends.

Lesson 21
I just had lunch with a friend of mine, she admitted she didn’t have health insurance. I couldn’t believe it. Let me say it…and then let me say it again. Health insurance is not the place to save money. Being sick is difficult for all the reasons you think it would be, and for the ones you haven’t thought of yet. Being sick without insurance, can be devastating. If you are reading this and don’t have health insurance…don’t wait any longer to get it.

Lesson 22
Beware the pre-existing ailment clause that may be in your policy. Large companies who offer insurance to their employees are able to waive this clause; they’re able to do this because large companies are big business. However, for the individual it can be more difficult. Look for this clause, find out about it…don’t sign off on this insurance until you know exactly how it may affect you. Almost anything in your medical past could be used as a pre-existing condition, giving your insurance company reason and permission not to pay your medical bill. This could be as good as having no insurance at all. Read, read, read.

There are likely other things that I’m forgetting, but this is an excellent start to “Being a Smarter Patient”.

Sunday, April 5, 2009

This is a Success Story! How to Achieve Patient Power-Lessons 1-10, Lessons 11-22 to follow

To those looking from the outside in, my story may seem to be a survival story…and it is, but it’s much more. My story is also a success story. A survivor is someone who continues to live or exist despite an ordeal or circumstances. A success story is having a positive outcome. We mostly hear about success stories as monetary achievements, but that’s really selling the word short.

My story started 19 years ago (as has been written about in this blog)…in July of 1990. I was diagnosed with a brain tumor; this tumor has been a teacher, a distraction…an enemy. I was barely out of my twenties when I was diagnosed (or at least what it was believed to be at that time). Jamie (my daughter-as has been written about in this blog), was a year old. I am approaching fifty, and she’s about to turn twenty. Where did the time go? I think to myself, “life is half spent before we know it”. It’s time for me to begin living the rest of it.

I would be remiss however, if before moving forward I did not share what I’ve learned. There is a saying that experience is the best teacher, but the tuition is high. Ain’t that the truth! While I would not have chosen these circumstances-they happened to me, and because of them I have gleaned a great deal of knowledge about a very particular area…doctors, the business of medicine, and being a patient. These are my lessons:

Lesson 1
Opinions, opinions, opinions. It’s said you can take opinions all day long. You can…and you should. The more complicated the medical issue, the more opinions you should get. Try and get as many as your insurance will pay for or you can afford. It can be overwhelming to get/have many opinions; it’s definitely easier to get only one-but what price easy? The one opinion you have may be a wrong opinion. It is so worth taking the time and doing the research. The best solution for you will become clear. I know from experience that this is true.

Lesson 2
“Fools rush in where angels fear to tread”. Take your time. Very seldom will the extra time you take to make the right decision rob you of your life. However, making the wrong decision might very well do just that.

Lesson 3
“It takes a village to raise a child”…it also takes a village to heal a patient. It’s very difficult when you’re in the eye of the storm, to be a “clear thinker”. You need your friends, and your extended family to be out there researching, scheduling, and supporting you. I know in my case I would not have had as positive an outcome, were it not for my “village”.

Lesson 4
Doctors are just people. We put doctors on a pedestal. We believe them to have our best interest in mind, and I’m sure most do. However, don’t forget that doctoring is also a business. Doctors, either consciously or unconsciously make decisions based on their ego, their desire to be noticed in the medical field, maybe even based on bills they need to pay. This may sound callous, but think about it. Haven’t we all made a business decision here and there based on bills we have to pay? Doctoring is a business. They do what they have to do-you do what you have to do. Again being aware that this may be a part of the landscape is part of having power as a patient.

Lesson 5
Doctors never speak out against one another, no matter how obvious a misjudgment may be. They might say with regard to another doctor’s opinion something like, “I don’t get that”, or in the case of mistakes already made “no sense talking about that now, it’s water under the bridge”. If one doctor doesn’t feel that another doctor’s opinion is right, he will not say so, this seems to be some kind of medical oath, “ye shall not disagree with a colleague”. This is frustrating and upsetting when all you want to do is make the best decision. It is worse, when you don’t know that this is going on under the surface of your consultation. Again, knowing is part of Patient Power.

Lesson 6
Doctors will seldom say “I don’t know”. How much easier the process would be if the doctors that don’t know, just said it. You could then take this non-information and move on, but instead this “not knowing doctor”, can really slow down, and “poision” the process. You end up wasting valuable time on an opinion that should not even be in the mix. This makes the process more difficult, but being aware that it does exist, keeps you aware and on your toes, and a better patient.

Lesson 7
Use the Internet. If you don’t have access, find someone else that does. The Internet is invaluable. When I had my first surgery in 1990 there was no real Internet; what did exist was extremely slow, and had very limited information. These days, if you dig, you can find out so much, not only about your illness, but about your doctors background as well. There are services that allow patients to comment, even rate doctors with whom they’ve consulted. This is good information. Information is part of Patient Power.

Lesson 8
With regard to these doctor rating sites. More information is better. I like the fact that these sites are out there; these services keep doctors on their toes. If a doctor asks you to sign a legal document agreeing that you will not participate on one of these sites (I’ve heard that this is something that some doctors are doing now), walk away. If a doctor is that worried about you going online and making a negative comment about them, then this is not the doctor for you.

Lesson 9
Do not allow any doctor to make you feel as though your questions are a waste of time, or that the questions are stupid, or that you’re stupid. Again, not all doctors know all things. Sometimes condescension is “I don’t know” expressed differently.

Lesson 10
Always trust your gut. I asked one of my doctors about a certain therapy, and he emphatically told me that the therapy was not for me…turns out he was wrong, this therapy is what may have saved my life. When he told me it was not for me, it didn’t sit right. I trusted my gut and pursued it anyway.