I never thought I’d be excited to go to the Mayo Clinic.
It’s the place you go when there’s something really, really wrong. When you’re scared and your primary doctors are scared, too. When you’ve exhausted all your options, or are knocking at death’s door.
Who would actually want to go to a place like that… willingly?
I can’t wait to get there.
My husband has been suffering with some disjointed, odd, pretty severe symptoms over the past year or so… longer if you take into account his fatigue and lethargy.
Finally, this past winter, they figured out one issue: his sleep apnea. It’s not your typical sleep apnea (Obstructive Sleep Apnea), but rather Central Sleep Apnea, which basically means his brain and central nervous system are not communicating with his breathing mechanism. It was getting bad… to the point where I wasn’t sleeping because I was scared out of my wits that he was going to stop breathing.
Well, stop breathing for good, anyway.
His latest sleep study showed that his breathing stopped up to 150 times an hour.
Not 150 times a night; an hour.
That means he wasn’t getting any deep sleep, which basically is like not sleeping at all. One day he called me and was on the verge of a full-out nervous breakdown. After a few months of no real sleep, I think anyone would react that way.
Like I said, though, the docs got that one figured out. He now uses a sleep machine, and while his sleep mask makes him look a bit like Hannibal Lecter, it has allowed him to get a semi-good night’s rest. Well, until Gus the cat shuts it off by accident.
On to his other issues… trembling and shaking. He sometimes has a hard time pouring a glass of water or holding something steady in his hand. One of the sleep docs mentioned that his Central Sleep Apnea could be a precursor of Parkinson’s. Neither of us like to think about that.
Memory loss. He can’t remember much of anything in the short term. One day he asked me, “Have you been to MN since I got back from my cruise?” I’d been to MN twice, in fact. He didn’t remember what we’d done until I started to remind him. Even then, I didn’t trust he was completely sure about it.
His dentist, of all people, actually contacted me with concern, because at his last visit, he couldn’t remember driving to the dental clinic and when she asked him how many sleep studies he’d done, he told her five in the past month. It had actually been two in the past three months. He forgets important appointments, tasks, whether he fed the cats or not. I don’t have to tell you the two of them are very, very concerned, especially when I go back to L.A.
Loss of appetite. For a while there, he wasn’t eating much of anything at all. A can of oysters, maybe, in the span of two or three days (I know, gross, but it’s the only thing that sounded good to him). He’s dropped 50 pounds in the last four months or so. And continues to lose, steadily.
Anxiety. He sometimes has trouble engaging in conversation, even with close family members, because he gets so anxious. If you know Joe, he’s usually one of the most easy-going guys you’d ever meet. Just the other day he described being around anyone as a “skin-crawling” experience. Even people he likes.
Depression. He doesn’t like to think he’s depressed, but I see it. He doesn’t like to talk much about that one either.
In my eyes, he’s a completely different person.
Oh, and did I mention he’s only 40?
So, let’s take a step back to the doctoring part of this whole thing… he’d been going to our local clinic, as well as the sleep clinics, for some time. They did discover his thyroid was a bit off, which explains some of his symptoms; just not all. He was supposed to be tested for Lyme disease, but apparently that wasn’t a priority. (Because that's not a "real" thing, right?)
He had a MRI on his brain, but that revealed nothing either. No history of dementia or Alzheimer’s in his family, not that there would need to be. But, still…
The one sleep clinic he went to was desperate to diagnose him with Obstructive Sleep Apnea, because then they could sell him one of their machines (they’re an LLC; interesting for a medical clinic, don’t you think?). Finally they gave in and said that no, he needed a special machine (the machine he has now, which they weren’t licensed to sell).
His GP prescribed him anti-depressants and anti-anxiety/sleep meds, which he was loathe to take.
In the end, no one was looking at the root cause of anything; everyone was just wanting to put a bandage on the symptoms. He’s not super tuned-in to health and wellness, so he didn’t really know the right questions to ask, or to ask for a second opinion. He knew he was frustrated, but he didn’t know what to do about it.
We talk a lot (on RadioMD) about being your own health advocate. But, if you don’t know what that means or how to accomplish it, you’re in the same boat as many people who plod along with no real answers and just accept that “it is what it is.”
I’m NOT one of those people. I’d been pressing for him to request a neurology consult, which, we finally did together when I accompanied him to his most recent appointment (again, where we accomplished nothing).
“Sure,” said the doctor, “there’s a neurologist that comes from St. Cloud, but it might be a month or two before you could get an appointment. That’s probably OK, though, because you’ll want to get started on your anti-depressants before you see the neurologist anyway.”
Wait, what? I’m not a medical expert (and I don’t even really want to play one on TV), but that doesn’t seem right. Wouldn’t the neurologist want to see his brain “as is”? In its natural state of disarray?
Oh, and when I asked for a referral to a psychotherapist, I swear his doc just about fell out of her chair… a therapist? You'd think I just asked for a unicorn. Apparently she was sick the day mental/emotional health was covered in medical school. Sorry, half-day.
Anyway, the clinic called at the end of April saying the first available appointment was August 6. More than three months away.
That was the straw; you know, the last one.
I immediately contacted the Mayo Clinic. Myself. No referral. Just pure, raw desperation.
They called him the next day to gather all his information: symptoms, how long he’d been suffering, insurance, etc. The woman he spoke to said it probably be two weeks before he heard anything, because it takes some time for the docs to review his case and decide whether they’d accept him or not.
She called him the next day. Less than 24 hours.
That phone call involved getting a plan sorted out… did he want to have one area of specialty, like neurology? Or, would he want a team of medical professionals checking everything out?
The team was his answer, of course. So far, there was no one overseeing all of his different appointments, and no one was communicating with one other. His dentist was actually the most proactive of them all, and she had nothing to gain other than to see him get well (we love her).
“Absolutely,” the Mayo coordinator replied. “It might take two or three weeks to assemble a team and get your appointments set up, so don’t get worried if you don’t hear from us.”
Two days later (well, technically one because it was over the weekend), she called back. Everything was set; two (possibly three) days of tests in June, and then another two or three in August. The August appointments are strictly psychiatric evaluations. And to think I got a funny look from the GP for suggesting that could be a factor. Huh. What do I know?
Of course, when all of this news came in, he was ecstatic that someone was finally taking note. I was too; but also a tad bit worried. Well, maybe more than a bit.
This is what was going through my mind: either there’s something seriously wrong with him, or they think it’s such an interesting case that they want to get him in as soon as possible.
I try not to think too much about the former. They are a research hospital, after all. They would want to take a puzzle like this and figure it out.
June 24 can’t come fast enough for either of us.
‘Til then, we’re plugging away. He takes his thyroid medication, sleeps with his machine, eats quite healthy, actually, and exercises four times a week… even though none of those things really help.
So, in the meantime, if you want to play along in our “what’s wrong with Joe” quest, I’ll give you an update in about a month after the first round of appointments. I’ll also be able to give you an insider’s view of the legendary Mayo Clinic, which I hear is nothing less than AMAZING, oftentimes with Sheiks and their entourage wandering the halls.