There are a lot of discussions going around lately about Health Care in America.
I have to be honest with you, I don’t know how to fix it. I’d like to be part of the solution, but I just don’t know how to fix it.
I don’t necessarily want to talk about the big debate right now – in this post. I don’t want to alienate people so they miss the rest of the message – so I will just touch on it briefly and then move on. Right now a war is being waged that involves the ability to pay for health care. This IS a big problem. While I think that decent health care should be readily accessible to all people, regardless of income, benefits at work, cost of treatments, and all the other variables, I don’t necessarily know how to change that. I would LIKE for us to have a universal health care system, and I don’t understand why people are so afraid of it. I also see that it will be a huge change and would take many years to reach that point if we could convince enough people that it would work. The universal systems I have read about, heard about, talked to friends in (or from) other countries about – they all seem to work well and they all seem to help the people who use them. That being said, I’d like to talk about some of the other problems with our health care system.
I have had a lot of experience with the health care system in the US. I have had several serious diseases/ailments over the years, and I have also had some small ones. I had cancer for over 3 years. 4 surgeries for it, one radiation treatment, and many many tests/studies done for it. When I was younger (early 20’s) I had my gall bladder out. It took the doctors almost a year to diagnose that and by the time they got in there, it was gangrenous. I went to the ER in the middle of the night in so much pain I literally couldn’t walk, I had a fever of 105. I felt like I was dying. They went in the next morning. I got staph infection in my abdomen and spent 28 days in the hospital. We thought I might die. I have had 8 surgeries in my life, I have had numerous smaller issues, and I have some chronic conditions now – constant migraines, constant kidney stones, and several things we are “still trying to figure out”. My family has had plenty of experience with illness too. My mom had several chronic conditions. Some of which there are no cures or real treatments for. My dad had major surgery for prostate cancer about 3 years ago. My sister in law was born with a heart condition – and I believe she still has some lingering effects even though her surgeries were when she was very small. My son has had some therapies he has needed, though he has luckily been very healthy. knock on wood.
My experience with doctors and their assistants, etc has been mostly positive. I trust and like most of my doctors. I have had 2 I had to fire in the last 6 years. I didn’t feel badly about it and I reported them to the appropriate boards because I felt they had done things that put my life/well being in jeopardy.
My favorite doctor of all time – the one who gave me my cancer diagnosis, did my first cancer surgery, scrubbed in and assisted on my second, and eventually decided he needed to pass me on to another doctor with more experience in difficult cases – is the epitome of what a doctor should be. Good bedside manner, excellent surgeon. Heart of gold. He came in during 2 different blizzards to make sure I was doing well. The whole city was shut down after my first surgery and he had a friend let him borrow a giant truck to make it to do his rounds for me.
But, I still see problems. One problem I see is the trend toward specialism. (is that a word?) My primary care doctor (family doctor) is good. She looks into things, she makes sure she is looking for zebras and not just horses. (the old saying “when you hear hoof beats no one looks for zebras, just horses” applies to medicine rather well.) She tries to look at me as a whole person. But she also believes that some things should be referred to a specialist. I now have 6. Some specialists are great. Like the ENT that I mentioned above – my favorite doctor. The problem with specialists is that they are too specialized. I went to a voice specialist after my vocal chord was paralyzed. (who by the way was wonderful and helped me very much with something that severely impacted my life) I did a swallow study and we found a problem with my swallowing below the larynx. I asked him what we do about that. He pointed to his adam’s apple and said “I don’t really know. I deal with everything from here up. The GI deals with everything from here down.” I was dumbfounded. And he didn’t even refer me to a GI. I have had many specialists do this same thing – tell me that isn’t their area of concern and never follow up with it afterward. I think it is wonderful we have doctors that specialize in certain parts of the body – especially the more complicated “body systems”. But I also think that there is a lot of breakdown in communication and the only way a system with so much specialization can work is great communication. If one doctor doesn’t tell a main doctor what they are thinking, and that main doctor doesn’t look at the rest of your info to make sure it sounds like it makes sense, then how will anyone know what is happening with you? I find a huge breakdown in communication in this system right now. I am actually moving a lot of my care to the university hospital so that all my info is one one place, even if it’s in different clinics.
Another problem with the healthcare system that I am glad to see changing some, is people not being an advocate for themselves. An elderly relative of mine had cancer. It was during a hard time in her life – her husband had just passed away. She could never tell us what was going on with her cancer, her treatments, her plan of attack. She told us “I just do what my doctors tell me to do.” In my opinion that is very dangerous. Yes, we would all like to assume our doctors are on top of things and they will follow up and provide us the best care they can. Most doctors have thousands of patients and no matter how well they know you, they aren’t thinking about you out all the time, or even making sure their orders are being followed through on. I believe that my thyroid cancer would have continued to go untreated if I hadn’t gotten down right insistent and rude with my doctors. When I was pregnant I had a large lump on my neck. I went in a total of 6 times (that I can remember) to a total of 3 doctors over the span of 6 months. They all told me the lump was just a swollen lymph node and if it didn’t go away in a couple months to come back. Which I did. And they said the same thing. It got bigger and bigger and scared me more and more. I finally refused to leave an office until the doctor (not his assistant) came in and looked at it and told me what tests we were going to do. And my mom was standing there with her “don’t you mess with my kid” look. And I was 8 months pregnant and half hysterical. They finally decided to ultrasound it. If I hadn’t done that, I might have died from it. It was very aggressive and spread a lot. I have been having migraines for years. I had aura migraines until my second cancer surgery. Then for some reason (no one can explain) I started having the painful ones after that. I mean, pain like I can’t describe. Laying on the floor wailing, vomiting, not able to walk pain. ER visit after ER visit. Doctor after doctor. Neurologists, scans. No one could prevent them. Though we did find I was low in magnesium and taking that has helped some. We also found a “cocktail” that helps with stopping them – one for home, one for the ER. Sad that I can tell the docs exactly what I need in my IV. Sad that I know my veins have lots of valves and this one and that one aver really scarred up, so try this one instead. But no medicines have helped prevent. I recently had another ER visit. They did an MRI and came in and said “everything on the MRI is good, let’s get this migraine under control and get you home.” I have learned to ALWAYS ALWAYS ask for the report from any test. Especially scans. What this ER doc must have meant was “there is nothing we need to do right now in the ER tonight, but there are several things that you should follow up with your doctor on.” Because there are several things I need to talk to my doctor about in this report – one of which could possibly explain several the migraines and other chronic problems that have been brushed off over the last few years. For reals doc? “it’s all good?” Come on. Any normal patient (that hasn’t been through hell and back with the health care system) would have said “ok, glad it’s all good, give me some pain meds” and gone home.
Please, people, please, be your own medical advocate. Be one for your children. Be pushy. It’s your HEALTH. Be demanding. Follow up YOURSELF. Even if it takes several (or dozens) of times. Go with loved ones to appointments, take notes, remember what the doctor said. My husband is so bad about this. He has NO idea about medical stuff and doesn’t really care to try. I have threatened him with his life that if for some reason our son ever needs long term medical treatments, and I’m not able to be there, that he will take notes, look stuff up, ask his doctor friend for help understanding, keep a file of all info, make sure he knows what meds help and what don’t. ETC. I can take care of myself, but he better be there for my son. My mom used to go with me to my cancer appointments, which was good. Let me tell you – when they say “well, I’ve got bad news” your mind just shuts down and all you hear is cancer, surgery, treatment. You have no idea what they are actually saying. Help your loved ones, advocate for yourself.
If you have to, see another doctor for another opinion. And another. It is necessary sometimes.
If you “know something is wrong,” please, don’t push that feeling aside. I “knew something was wrong” with my gall bladder and my thyroid cancer. I let both go on for too long. The bottom line is you CAN’T rely on a system that is disjointed, that is uncommunicative, that treats a thousand people that “look” just like you every week. You have to take care of yourself.
Read up on your symptoms, diagnosis, treatment options, dietary concerns, lifestyle changes that can help. Don’t self diagnose. Do find out what your options are. Do try to puzzle together different symptoms that don’t seem related but might be. Like migraines and petechiae. They CAN both be related to vascular disease. Which no one has put together in me until now, when I read my own MRI report. I looked it up and found I have several symptoms. It may not be what I have. It may not be the cause of my migraines. It might give us more clues, or it might be off on the wrong track. But you can be darn sure I am taking this report straight to my doc, reminding her of my petechiae, and telling her to figure out what is going on.
Our current system also treats instead of prevents. Oh sure, doctors tell you to loose weight, eat a heart healthy diet, exercise. They scrape your cervix, or feel your breasts, or make you cough, or put a glove on and ask you to bend over every few years. But do they truly focus on prevention? No, most doctors are so busy running behind people who already have life threatening illness to even work on prevention. In other cultures (mostly eastern) the focus on prevention is so much higher. Herbs and vitamins and certain foods are used to help keep people healthy, instead of treating them. The community exercises together, they all eat fairly well, they all encourage each other in these things. Families stress exercise and eating well. They teach their children discipline of the body and mind. We, as a culture, have fallen way behind in this. Way. Most doctors don’t even know what vitamins, minerals, or herbs can help with certain problems.
I have not been party to many other culture’s health care. I have talked to friends from other countries or who have lived in them. My husband and his friends have talked to me about the Russian/Slavic countries health care. There they are also more preventative and less invasive in treatments, if possible. They also seem to have much less specialty and one doctor that follows all of your health care. It can be harder to get good health care in some areas, and you may have to travel for a good surgery, etc. It is a cash up front business. My FIL needed heart surgery and had to scrape together $35,000 just for the surgery – not including the tests and such. I know, you are thinking “$35,000 for heart surgery – that’s a deal!” Here the same surgery would have cost over $100,000 and his included a 10 day stay in the hospital mandatory. Ours would kick you out after 3-5 days (most of my surgeries were 3 day stays, my chest was 5). But to pay in cash is much different than to pay with insurance and through co-pays. They also seem to focus more on natural types of treatments or cures.
I think it is time for a revolution. I think most doctors would like to see some changes too. The insurance industry and drug companies and FDA have their hands way too deep in the cookie jar. The doctors have their hands bound by red tape, approval letters, and inaccurate drug studies. Yes. I said it. The system is corrupt and it has to change.
Please, help me find a way to make that change.