Update: Sandy passed away on the morning of July 1st, 2022. The day before, she had talked about possibly getting her driver’s license back and trying to find a decent car. The next morning, she collapsed and never recovered, in spite of heroic work by the EMTs with Blount Rescue.
If you’ve landed on this page somehow, and you’ve been dealing with doctors who simply can’t figure out what’s wrong with you, don’t give up. Part of me wants to throw Sandy’s death in the face of the doctors at UAB who said that it was “all in her head;” but that wouldn’t solve anything. Nor should a Christian act that way, so I won’t.
There were doctors who took the time to listen to her and to do what they could. Our family practitioner, Dr. A. F. Patton, has been irreplaceable. Dr. Varley at Southern Pain Specialists was an answer to prayer. Dr. Childs, her gynecologist, also went out of his way to see what he could do. Dr. Litton was one of the rare bright spots at UAB. All of them are heroes, and there were others whose names I can’t recall at the moment.
But my attitude toward most health professionals, especially the nurses, nurse practitioners and physician’s assistants who are on the front lines, hasn’t changed. They’re still heroes; the situation is simply what it is. Just be aware of it. As I point out below, if you have a weird or unusual medical condition, just hang in there and pray for a good doctor who will finally take the time to do what you need.
The original screed follows.
“Imaging” back then was basically an X-ray. The MRI hadn’t been invented yet. CT (“CAT”) scans were available, but exploratory surgery was the most common way to look inside a patient. Many diseases — especially advanced cancers — were basically a death sentence.
To see how far we’ve come, St. Jude Children’s Hospital says that when they first opened in 1962, the cure rate was about 20%. Now, it’s 80% — eight out of ten children. Again, there’s no doubt that medicine is almost miraculous now.
If you have a well-known condition, treatment is A, B, C. However, this doesn’t mean that you couldn’t run into problems. I wrote this because of what I’ve gone through with my dear wife Sandy. My brother’s late wife Carol also had a rare disease that was misdiagnosed for some time.
If you or a loved one is very sick, especially if the doctors can’t figure it out, or if you have more than one problem … you need to read the following. First …
In the 16th century, if you saw this guy
headed your way, you screamed and ran.
I have many friends and family members who work in medicine, from technicians to surgeons. I don’t know a single one who doesn’t love helping people.
Nurses in particular are underappreciated. You may be in the emergency room, freezing, and that blasted nurse won’t bring you a blanket. What you may not know is that they’ve been so busy, they haven’t even had time to go to the bathroom. They’re about to pee themselves.
To these healthcare professionals, I say: don’t take any of the following the wrong way. I’m not criticizing you, I’m looking at the system in general … the gigantic, ponderous, Hydra that is Health Care.
Nor do I want to get into the politics of it: is the problem Obamacare? Is it Big Pharma? Whatever. If you have a serious medical condition, I just want you to know what you could experience from The System in general.
Let’s take these one at a time, starting with …
Everything in medicine is ultra-specialized nowadays. At the Andrews Sports clinic here in Birmingham, for example, there’s an orthopedic surgeon who only does knees. Don’t bring him an elbow, a foot or a back injury. He’s the Knee Guy™. Now, that’s specialization.
Don’t be surprised if your family doctor sends you to a specialist if you have a problem that he can’t treat. That’s normal. But if you have a weird condition, you’ll find yourself bouncing from one Gigantic Medical Center to another, from one specialist to the next.
For example, my wife had severe muscle spasms, mostly in her legs. She went to two different neurologists. They ordered MRIs and scans, then prescribed the usual Neurontin (gabapentin) and Lyrica (pregabalin). Next, she went to an orthopedist (the Knee Guy, in fact). More x-rays; he suggested some outpatient surgery, which helped the knee, but the leg spasms continued.
On she went to a third neurologist, who tried Botox(tm). When that didn’t work, he wondered if it might be “focal seizures,” an uncommon form of epilepsy. He prescribed Keppra (levetiracetam), a powerful anti-seizure medication, and some muscle relaxers. She ended up in the hospital, hallucinating and delirious.
That’s the short version. I haven’t covered half of it. But if you’re going through something like this, we’ve been there, and we understand. Ask. Get second opinions. Never give up!
The System: What it Can (And Can’t) Do
When I was a young man, it was also common to be admitted to a hospital, even if it was just for tests. Those days are long gone, and you need to realize that.
The emphasis now is on outpatient treatment. Even surgery is done that way whenever possible. This means that you will need someone to drive you home, and perhaps a caregiver at home while you recuperate. Speaking generally, the hospitals won’t admit you nowadays — and even if they do (say, for major surgery), their goal is to get you back out as soon as possible.
Those of you who suffer from chronic pain also need to know that hospitals will not admit you for pain management. Given the new crackdown on prescription opiates (and don’t get me started on that), it is becoming very difficult to get what you may actually need.
Be prepared for a long wait to see some specialists. It could be many months before they could work you in. Contrast this with what you see in a television drama: the Very Sick Person will be in a caring hospital, surrounded by health professionals, usually led by a quirky but extremely smart doctor who refuses to give up.
In real life, that rarely happens. You don’t know how many times my wife and I have wished that there was a facility, somewhere, that would just admit her and keep treating her until they actually found an answer that worked.
Each Doctor Is Different
This is especially true among hyper-specialists. The doctor who replaced my wife’s right hip joint, for example, has a special operating table (that cost a ton of money!) just so that he can make very small incisions. Other surgeons, while just as skillful, might want to make a very large incision. Ask.
But the real joy, especially if you have an odd, rare, and/or off-the-wall medical condition, is that each specialist could diagnose it differently. This means different drugs, different therapy, surgery or no surgery, or even (my personal favorite!) the conclusion that “it’s all in your head.”
(By the way, if you’re told that “it’s in your head,” don’t give up. Ask the doctor, “where can I go to get it OUT of my head?“)
Never give up, don’t lose heart. But also don’t be surprised if you find yourself going from one doctor to another. It may take years for you to finally find out what’s really going on.
Oh … and on the subject of each doctor having his/her favorite drugs, don’t think that just because you listed all of your medications on the paperwork that they’ll check for …
Of course you should tell your doctor what medicines you’re taking, including over-the-counter drugs. Each additional chemical increases the risk of an interaction. I also strongly recommend that you get all prescriptions filled at the same place. Become friends with the pharmacist and ask them to check each new prescription carefully.
But see again above re: hyper-specialization. Because each doctor has his/her preferred treatments, and he/she might not carefully check against all of your medications before prescribing one of their favorite drugs … rare interactions can still occur. Your pharmacist may do his/her best, but may miss something as well.
My wife, for example, was prescribed a common drug for a urinary tract problem (oxybutinin). Perhaps because of her history of epilepsy, and/or combined with the other drugs that she was taking, one dose — a single pill! — caused a grand mal seizure. She was on the floor, unconscious and twitching, just 20 minutes later.
Here’s a more common example: you may be taking an SSRI (ex., Prozac (fluoxetine) or an SSNRI (ex., Cymbalta (duloxetine). These can interact with any other drug that affects brain serotonin levels, including the synthetic opoid Ultram (tramadol), the muscle relaxer Flexeril (cyclobenzaprine) … and the common cough suppressant dextromethorphan (found in many over-the-counter brands like Robitussin and Vicks Formula 44). You could be hit with “serotonin syndrome,” which is no fun. (Speaking from experience. Again.)
Now, you can’t be paranoid. If you Google your prescriptions, you’re likely to see all kinds of interactions. Look at the odds and percentages, as well as the age groups and other risk factors. Remember that the amount that you take matters. If you take lower doses, you may not be at risk. Ask your pharmacist.
Prepare In Advance
The hyper-specialists, the big diagnostic machines and all those fancy tests are usually found at a large regional medical center. There are several joys to be mentioned here.
First, you will find yourself doing tons of paperwork at each doctor and for each test. Some will let you download the forms in advance nowadays; do that. Fill them out at home and bring them with you.
Second, leave early for your appointment. It could take you an hour just to find a parking spot. And on that subject … it is baffling that these giant medical centers, which exist to treat very sick people, expect you to park half a continent away and then walk. And walk. And walk some more. (This has especially been hard on my wife, given her leg problems.)
Investigate this before the trip. Maybe you could arrange for a wheel chair. You may need to let the patient out, then go find a parking space (assuming that you can leave the patient alone for a while!). Or, if you have the money, pay for valet parking (which has risks of its own — for example, we were delayed on one doctor visit until after the valet had closed).
Third, bring a credit card. Many of these folks will not even see you without the co-pay up front, and it can range from a few bucks to over a grand. Ask in advance. You don’t want to be surprised when you get there.
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