I’m going to go out on a limb and post the story I just told online, elsewhere. It’s more personal than bioethics, but maybe it will help someone else. At the end I’ll give a couple of secrets for surviving in the medical world when you don’t have the usual disease or the usual course for your disease.
My mother has been very sick over the last 2 years with a wild and crazy diagnosis of thymic carcinoma followed by a persistent paraneoplastic syndrome. If she hadn’t had one daughter who’s an RN and one who’s an obsessive-compulsive (at least when it comes to my Moma) Family doc, I don’t think — no, I’m pretty sure she wouldn’t have survived. (She’s doing great, right now.)
Thymic carcinoma is very rare, with only a few cases diagnosed in the world each year. (Only 20 cases were seen at the Mayo clinic in a 75 year history according to this article.) The body will make antibodies against the tumor and those antibodies can attack the muscles, nerves, and the chemicals that carry signals between the muscles and the nerves. Patients may become weak or have pain that can’t normally be explained by neurotomes (groups of related nerves) or muscle groups. They may even have brain involvement and become delirious or “out of their heads.” The effect of the antibodies is called paraneoplastic syndrome and may not go away even in the rare cases where the tumor is completely removed and there are no signs of persistent cancer. Sometimes the paraneoplastic syndrome will show up before the cancer can be detected. And sometimes the syndrome will cause life-threatening complications such as loss of sympathetic nervous control (so blood pressure goes up and down to a dangerous degree) and respiratory crises (the lungs are affected, mimicking pneumonia) long after the cancer is “cured.”
We had to repeatedly go through the “No, she never smoked.” And, “Yes, she’s a ‘full code.'” And “No, it’s not Parkinson’s or Alzheimer’s, it’s a syndrome similar to atypical myasthenia gravis because of her tumor.” And, “She worked up to 2 weeks before her surgery and used tylenol for pain before that.” And “NO it’s not lung cancer no matter what the pathology report says – it’s in her THYMUS, so it’s THYMIC carcinoma, even if it’s squamous cell, small cell type.” And — worst of all — “Please put her back on the pyridostigmine and steroids so she can roll over in bed and maybe even sit up again, like last week.”
And the doctors, with the one exception of the excellent oncologist, never called me back – even though they knew I am a fellow physician. They never called my sister or my daddy, either. Once, I sat in Moma’s long-time family doctor’s office, waiting for the doctor or the advanced nurse practitioner to come out to speak to me for over 20 minutes. I knew they knew I was there and Moma and Daddy had given everyone written permission to speak to me and my sister, when Moma first got sick. But, no luck. Finally, the length of time seemed embarassing. I (very carefully and legibly) wrote a message covering my concerns and left. They never called me, they didn’t even call my Daddy, and I still don’t know why.
Ok. Doctors are human. We can’t think of or do everything. Often the mistakes are procedural or just due to the inefficiency of the system. And, I know that doctors have more than one patient, that it’s always good not to be the biggest emergency in the office.
(Oh, and before I forget – someone needs to say it: Doctors make rounds in the morning and after work. We often skip lunch or eat at our desks in order to review labs and tests or run back to the hospital. And on our “afternoon off,” we have to make manditory committee meetings at the hospital or go to the nursing home. When I was doing full family practice, I was on 4 hospital and Emergency room call lists at one hospital – obstetrics, new born, ICU, and general.)
Moma did get revenge on one of the Neurologists she saw in the hospital. It was a Saturday, 4 days after the 2004 election, 2 days after her surgery to remove the thymic carcinoma and one of the times her pyridostigmine was wearing off. She was very weak and her usual benign essential tremor was at its worst and her face muscles were droopy.
But, this was not one of the times the syndrome affected her thinking.
The doctor rounding that day was the 2nd neurologist she had seen in the hospital, and he began putting her through the tests that all the other neurologists do: run the heel of your right foot down your left shin, touch your nose, do you know what day it is, etc. He declared that he was an expert in “Movement disorders” and trained at Harvard (when Moma tells this story, she says, “Hahhvahhd.”) He said she did not have myasthenia gravis, it was obviously Parkinson’s.
Ignoring my interjection that she had had a thymic carcinoma removed 2 days before (He knew I am an FP), he asked Moma to name as many animals as she could.
Moma, the proud Republican woman who voted early on her way to her first visit to the Cardio-Thoracic surgeon 3 weeks ago, just in case, answered, “Horses and cows, dogs and cats, lions and bears and tigers, elephants, jackasses, and Democrats.”
At least she didn’t say ” and Yankees.”
I have since explained to Moma that it’s really not a good idea to irritate Neurologists.
It’s a good thing she didn’t say “Zebras.” Because in medical school every student makes a wild diagnosis and is taught the cliche’ that, “If you hear hoofbeats in Texas, it’s probably horses, not zebras.”
But, dog-gone it, sometimes it’s Zebras! Even in Texas. And patients shouldn’t have to have their own private medical consulting staff in order to survive.
As promised, here are what I believe are the secrets to obtaining good medical care and surviving a “zebra.”:
1. Stay in the United States. Even with all our snafus, we have the best medical care – especially when it comes to zebras – in the world. (Moma went from diagnosis to surgery in just over a month. And that saved her life, since it is rare to find these tumors before they have spread to the lungs and even the heart and chest wall or metastasized to the liver, lungs, bone and brain.)
2. Go in to see the doctor with a list of questions on bright yellow or green paper. Do not leave until all the questions are covered or there are plans to find the answers.
3. Have your history and current medications in writing, maybe on another color of bright paper. It really does help if you bring in all the bottles of medicines, vitamins and supplements you are taking.
4. Don’t irritate neurologists or psychiatrists. Trust me, you don’t want to know why.
3. The best and most important strategy of all is to find a good nurse that you like. Feed her chocolate. Send her flowers and cards on her birthday. And ask *her* for help with the doctor.