I’m alive for two major reasons:
- Because I didn’t take a lot of advice I was given. I had been misdiagnosed and had some bad doctors.
- Having learned my lessons the hard way, I did my homework and sought out the best doctors for whatever needed to be done.
In earlier surgeries, I tried to make life easier for people to visit me, including a working husband. Now, I find the best, most respected surgeon … even if he or she is a long drive from home. It’s my life on the line.
Dealing with breast cancer in both breasts — two unrelated tumors — and ultimately getting Boston’s best surgeon and plastic (rebuilding) surgeon was complicated, but I found a doctor who was a friend of Garry’s brother (who lives in Minnesota, but the doctor lived in Boston). The “local” surgeon had 30 surgeries and told me what I was going to do. No choice. She believed she already knew what I needed.
I spent a month finding someone with hundreds of hours who was head of the women’s surgery unit in Boston. It was a very nerve-wracking month hoping cancer wouldn’t grow much while I sought the best doctors I could find.
There is a lot of advice I wish I had gotten but didn’t. Instead, I got some excellent advice from myself.
The most critical information I can give you is to make sure you are using the best doctors and hospitals. Local doctors may be able to set a broken leg, but for anything more complicated, they might kill you if you let them.
I took my own advice which is how come I’m here to tell the tale. I’m pretty sure if I hadn’t been my most powerful advocate, I’d be an ex-blogger.
This is my best advice.
Life is unexpected. Shit happens. Cancer, heart issues, diabetes, arthritis. You name it, we get it. No matter how well you take care of yourself, you will at some point require medical care, maybe surgery, maybe other stuff.
Regardless of convenience, understanding the quality of the medical facilities within driving distance — even extended driving distance — are critical to surviving.
Do the research. Find out what available medical facilities and associated doctors and surgeons and support services are reachable. If you have to drive a considerable distance to obtain the best services and people, do it. Survival trumps convenience.
Your life is on the line. I’ve been there, done that, and lived to tell the story. It is absolutely worth it. You are worth it.
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Categories: #Health, #HealthInsurance, #Medicare, Hospital, Marilyn Armstrong, Medical
SERENDIPITY - SEEKING INTELLIGENT LIFE ON EARTH 
I’ve been struggling to find answers for my son’s pain issues. Finally took a miserable weekend with him for me to snap and go hysterical on the phone to his doctor. And while the EGD they performed found nothing, it’s one less cause to consider. He’s doing marginally better on a higher antacid treatment, so that’s a positive thing. Still can’t eat bacon though, so the struggle continues. It’s good to read about other people’s trials and successes. It gives one hope.
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Doctors can be more than a little bit insensitive about pain. Given the state of pain medication, they are all worried about what they can prescribe and not winding up in trouble. When the medication I was on ceased being manufactured, I was absolutely panic-stricken. I found another, but I can’t take a lot of medication. No NSAIDs (not even aspirin), no opioids (they make me ill). Those are a lot of medications I can’t take, so finding one I COULD take wasn’t easy. I think your son needs a better diagnosis before anyone is going to give him what he needs. It could be anything from a bad case of acid reflux (that can burn your stomach and turn it into a giant ulcer and make you incredibly sick). Or it could be ulcers. Or something worse.
If you don’t have a clear diagnosis, you need to get one. And if not eating bacon is the biggest issue, it’s really bad for you anyway. ALL of us have foods we can’t eat. I can’t drink orange juice or tomatoes. Both too acidic. That’s just life.
Also, he might have a bad gall bladder because when they go bad, your body can’t handle fats.
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I’ll be writing a post about the update, but there is nothing physically wrong with him. That much has been determined. How to help him, however, has not.
I’ll admit, I feel defeated and low. It is a hard time of year for finding your energy when it is constantly strapped. And now my son is getting upset outside so I’d better go check on him.
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I don’t believe in pain without a cause. They may not have found the cause, but there IS one. My brother was dying of pancreatic cancer and they didn’t find the tumor until a week before he died. I had a very bad heart my whole life and no one thought there was anything wrong until 5 years ago. In fact, after massive testing, they STILL didn’t know how bad it was until I was on the operating table.
There are a lot of gastric issues that cause a lot of pain but aren’t life or death and until someone FINALLY diagnoses what it is, it’s just pain without a cause. I have gastric angina which means that sometimes, for no known reason, my guts twist into a knot so painful I can barely breathe. Then, after a while … sometimes a long while … it gets better. I now have nitroglycerin — the same stuff they give for heart angina. After 2 to 5 minutes, I can breathe again. No one knows what causes it. Just some people have it. There’s also esophageal angina — the same thing but higher up. No one knows what causes it, or cure it. I was being consumed by ulcers and no one knew it until they went in and looked. NOT everything shows up on a test.
And of course, the ephemeral IBS with which I was diagnosed when I was 17. They still don’t have treatments or cures for it or at least none I can afford. Just for the fun of it, Garry has it too and so does my son. There are no tests for it, so doctors need to diagnose it by symptom rather than tests. A lot of doctors can’t seem to do that anymore. They rely entirely on tests and don’t listen to their patients.
I know it’s hard to deal with this stuff while being broke. We are ALWAYS broke … but you need a better GP or family doctor, someone who looks at the whole person, not just test results. Someone with an open mind!
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I appreciate your words. Especially hearing that medical mysteries are that hard to define. I started to feel like I was faking this or something to get attention. At least, that’s how I felt at the hospital. They were nice, but immediately dismissive after not finding ‘easy’ answers. The problem is, I’ve watched way too many medical dramas where there are teams of physicians working to solve the problems of a handful of patients. Usually it wraps up in an hour after a million tests are run. That’s not how it happens in real life and, boy, is that annoying.
I’ve had three goodish days. He gets cranky sometimes, but no major explosions. I’m counting this as a huge relief for me. It may not last. It could dissolve any second, but right now, he is safe, happy, and in good hands. (Someone actually signed up to work Christmas Day for ABA therapy. It’s my longest break this week, so I’m hitting in the internet while I can.)
I’d consider switching doctors, but it can be hard to find ones that take not only Autistic patients, but patients with Medicaid. I’d hate to move and lose what care we do have.
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Very good advice, Marilyn.
Leslie
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It saved my life. Three times so far. There are things for which the Internet really IS good — and tracking down really great doctors is one of them.
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It also pays (as you point out) to listen to YOURSELF. You and your body are intimately acquainted and you (the patient) know yourself the best. Doctors may try to fix something with ‘one size fits all’ thinking and methodology. If a patient has doubts, I’d say get a second opinion or, as you did, find the best doctor for the field of the illness in question. I’m due for knee surgery, sooner than later, and my old orthopedic surgeon (who was the best when I began to see him – sports medicine doctor for the Olympics in 2002) – did such a crappy job with my other knee that I’m not going to use him. So the search has begun. I”ve gotten the names of two top orthopedic surgeons that are local (because my old doctor is in Salt Lake – 50 miles from where I live). I don’t know if the new recommended physicians will pan out or not. But I pay attention to what they tell me, I weigh my feelings about them, and then I decide. If it’s a lengthy journey to find good care, so be it. I like your attitude and you are living proof that being aware and informed is the best course with one’s physical health.
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Wouldn’t it be nice if the doctors listeend too? I really like our family doctor and I think — FINALLY — I got a heart specialist that understands my problems.
When I had my spine fused, instead of going to the GOOD hospital in Manhattan, I went to a local hospital so my then-husband could more easily get to see me. it was a mistake for which I am still paying. Ditto a surgery I had in the early 2000s that required a complete reversal it was so poorly done. When the heart problems came up, I was sent to a doctor who told me I should wait until it got really bad before I dealt with it. Except for the minor detail that the first serious symptom of myocardiopathy is cardiac death. Great advice. I could have saved the insurance company TONS of money.
I just knew that this doctor was a moron. I felt it in my bones. I went online to find the best heart doctor who used minimal intrusion surgery for repair hearts. It didn’t matter in the end because there were so many problems that all the tests failed to show. Still, he did a brilliant job in a surgery that took 10 hours and put me in a chemical coma for three days. Or, I could have listened to the idiot I was originally sent to and be dead.
If I had been able to get my brother to a doctor in Boston, he might have lived a little longer, though pancreatic cancer is 99% lethal, so probably not. But they didn’t even DIAGNOSE him until a week before he died. Good old local hospitals.
Even really good hospitals can make lethal errors, which is what happened to husband #1. But you have to make your best possible decision because the wrong one can finish you off. Even if it IS inconvenient. Extremely inconvenient.
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Amen. Not all doctors and hospitals are the same.
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When you’re having your tonsils out, most hospitals will do. When you’re having your heart rebuilt or both breasts removed for cancer, it matters. A lot.
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