Saturday, February 28, 2015

And now for something completely different

This is only tangentially related to my recovery, but yesterday posted a new slideshow video of my recording of Jesse James. It's a measure of my recovery that I can even play a relatively fast song, so here it is.

Friday, February 20, 2015

Keith's take

Some of my Facebook friends have had negative experiences with the medical system, so my link to my last post generated a lively discussion. Keith gave his very considered opinion on why patients who can't speak aren't given writing material (he's a writer too, after all). Here it is, by permission:

My theory is that it simply isn't anyone's job to listen to the patient and they don't have the time.

Of course they care. They are people, and that is what people do. 

But they are also professionals who are paid to do a job. When a health care worker comes into a patient's room, it is to do a specific job (give a treatment, turn the patient, take a reading, etc). They need to get in, do the job, and move on to their next patient. Input from the patient isn't important to the specific job they have to do, and in fact can be a distraction. 

I have only seen ICU, DOA, and nursing homes, but it is not the job of anyone in any of those facilities to listen to the patient or to observe the patient. The nurses, CNAs, doctors, and other technicians simply don't have time to wait for every patient they see to communicate via writing. Furthermore, the worker in a room with a patient at any given time is probably not going to be able to help with a specific request. The tech taking blood can't turn a patient or get pain medicine or a bedpan, and if they have to find the person who can that will take even more time. 

So, it is easier if the patient can't communicate. Not better for the patient, but easier.

It is a problem with our system in general, but it is no individual worker's fault. They are being paid to do a job and they do it.

Thursday, February 19, 2015

Silence is not always golden

One thing that continues to puzzle me about the two times I had tubes down my throat that prevented me from talking: Why is it that the means to communicate weren't immediately provided to me? Surely I wasn't the first patient who ever wanted to express their wishes when they had a trach or were intubated. In my ICU room during my second bout of Legionnaires' disease, I had to write on a white board covered with smiley and frowny faces to indicate levels of pain and a simple alphabet for laboriously pointing to one letter at a time. I wrote on the margins because there was no room to request an extra pillow, ask a question, or answer a doctor's question, let alone communicate with loved ones. How can a person with ADHD--who talks at warp speed--express her thoughts one letter at a time? Still, that was an improvement over when I awoke from my coma with a tracheostomy tube in my throat.

That time, my loved ones had never had to face this kind of situation before. But what about the medical staff? Yes, I had trouble moving my hand after I awoke from the coma, but I could've managed some roughly scratched words. And yes, patients in my situation are often incapable of communication due to brain damage. But a woman I shared my room with in the nursing home was also recovering from a coma with her intellect intact. Her friend brought her a child's Magic Slate toy that she could clear by lifting the plastic cover sheet. I had to try innumerable times over a couple of days to mime writing with a pencil and paper before someone finally guessed what I wanted. No one in the nursing staff figured that we might want a way to convey our needs? Or express thoughts of any kind?

It's true that many people in the nursing home have trouble communicating due to Alzheimer's disease, but there were plenty of others who had no mental deficits. Shouldn't every mentally competent person who can't speak be handed an empty white board, or at least a pad of paper and a pen?

Maybe it has something to do with the dehumanization of patients. Or, maybe they can't complain because no one has provided the means to do it.

Friday, February 6, 2015

I won the lottery, but what I got was no prize

This is the blog I posted on Friends of the Mountain Dulcimer after my diagnosis of dermatomyositis was confirmed:
For someone who is not afraid to kvetch—hey, my people invented the word—it's kind of strange that I haven't let on about my recent health problems until now. Oh, I complained a bit about how wrapping all those Christmas gifts was killing my arms, but that was before I knew that there was something going on beyond my usual out-of-shape, pencil-armed weakness. I suppose a good way to tell if something is actually serious is if I'm too afraid to kvetch about it. And now that I'm well on the road to recovery, the fact that I'm ready to kvetch again could be taken as a good sign (for at least as long as you could stand it).

Dermatomyositis (DM) is a rare, but treatable, autoimmune disorder. Here's some info: http://mda.org/disease/dermatomyositis/overview and http://en.wikipedia.org/wiki/Dermatomyositis. Though I only received the definitive diagnosis on March 5, I first came across DM while consulting Dr. Google. I really didn't expect to find anything, let alone anything serious. I had already spent too much time fruitlessly looking for a match to the weird rashes I'd been suffering from. This time, on a whim, I added muscle weakness, pain, and the most severely affected skin areas (hands, elbows, and knees) as keywords. I quickly hit upon dermatomyositis. What I found left me deeply shaken. The distinctive DM rash called Gottron's papules matched mine in every detail of appearance and distribution, including the areas I had left out of the search terms. And I didn't even know that the painful cracking under the creases of my finger joints was called mechanic's hands until I saw it listed as a potential symptom. It was if a med student had been given an assignment to come up with an imaginary case-study and gone way overboard. But what scared me most was how the disease's most common course, rashes followed by weakness in the the muscles nearest the trunk, fit what was happening to me. Though the weakness in my already feeble arms was most obvious, I was also finding it increasingly difficult, not to mention painful, to stand up from a squatting position. Still, I consoled myself that DM was an extremely rare condition. I had never experienced any rashes quite like these before, but I had suffered from chemical- and abrasion-sensitive skin my entire adult life. Nonetheless, I knew I wouldn't rest easy until I could be sure that I didn't have DM, and I scheduled an appointment with my primary care physician.
With nerves added to my ADHD, I knew I would wind up leaving out important details, so I wrote a narrative account of the progression of my symptoms. At the very end I mentioned dermatomyositis, but I made it clear that I realized it was rare and I only wanted to rule it out as a possibility. My arms were already weak enough that I had to rest them frequently as I typed, yet when the doctor tested my muscle strength and range of movement my impairment was hard to tell from ordinary strain. Though he didn't order all of the tests I had read about it, he did test my creatine kinase level, a measure of muscle damage that is usually highly elevated in cases of DM. But, as it turned out, it was a little too soon for the disease process to show up.
My next stop, naturally, was a dermatologist. Unfortunately, none of my doctors were able to see my rashes at their worst because intensive treatment with over-the-counter cortisone products had been slowly improving them. The rash on my hands, however, was still quite evident. My fingertips and knuckles were red polka dots traced by lines that ran along the bony ridges of my hands like a connect-the-dots picture. I couldn't get out of my mind how closely it resembled the unique pattern of Gottron's sign, a hallmark of DM. But when the dermatologist got to the part of my narrative about DM, he was amused. “So you think you have dermatomyositis?” he said with a grin. He then proceeded to rattle off a handful of forms of dermatitis/eczema—each area seemed to have its own variety—and gave me some prescriptions for clinical-strength topical cortisone.
But as my rashes began to heal, my muscle problems continued to worsen. At this point I hadn't stopped playing the dulcimer, though the sessions were getting shorter and spottier. I found it difficult to keep my arms suspended over the fretboard, so even my noter hand would drop like a dead weight every few measures. It was getting harder for me to deny that there was something seriously wrong with me, but I did my best anyway. In the past I had suffered lower back strains that had refused to heal due to slight reinjuries. Wasn't that more likely than a rare disorder I found on the internet? So I decided to stop playing for a few days and to eliminate every possible source of strain to give my arms and shoulders a chance to heal. The days stretched on as the simplest tasks became a struggle, but it was also the beginning of the end. I emailed my PCP to tell him of my continuing muscle problems, and in response he gave me a referral to a rheumatologist.
I liked Dr. Bharadwaj from the start. It certainly didn't hurt that she told me I was smart for seeing that dermatomyositis was a potential diagnosis. Indeed, she considered it to be the second most likely behind psoriatic arthritis. The good news, she told me, was that both conditions were treatable, though if I had to have one it was better to have psoriatic arthritis. I was pretty sure I knew what she meant, and I'll get to that in a bit. The tests she ordered (I lost count at eight blood vials) soon tipped the scales toward DM, however. In a little over a month my creatine kinase level shot up from 175 (just outside the standard range) to 1075. Dr. Bharadwaj advised me to schedule a skin biopsy as soon as possible. Though it was better to hold off on treatment until after the biopsy to avoid affecting the results, she said if I felt I really needed it I could start on it sooner. I had been extremely leery of prednisone, but by this time my symptoms were worsening daily and I was ready to start popping it like candy. I was, therefore, dismayed when the earliest appointment I could get for the in-office biopsy was more than a month away. I sent an email to Dr. Bharadwaj to tell her about the delay, and I received a call from the dermatologist's office later that day. My new appointment was in two days. I told you I liked her.
When I saw the dermatologist for the biopsy, he examined the rash on my hands and remarked that if anything it looked even redder than before (actually, it was a lot better). Now, suddenly, it looked like “classic Gottron's papules” to him. None of that really matters though. What matters is that I filled my prescription for prednisone afterward, and from my first dose I started to feel better. A week later my creatine kinase level was down to 203 and it's now 109. Though I'm not yet back to my normal level of weakness, I am making steady progress. And I'm ready to start playing again.
Okay, so what about those aspect of DM that make it the less desirable autoimmune disease? Well, for one thing, there are the other systems that can become involved. Like my other early DM symptoms, it was easy to explain away my increasingly severe bouts of hoarseness because it was a symptom I had suffered from for so long in milder form, in this case due to allergies. Indeed, even when I learned about DM I found excuses to keep it off my already wide symptom checklist. But when I started to develop swallowing difficulties as well, the connection became impossible to deny.
To me, however, the scariest associated condition by far would have to be cancer. The relationship isn't well understood, but within the first two or three years after diagnosis there is a significantly increased risk that a malignancy will be found. After that the risk returns to near baseline. Fortunately, I've come up clean so far, but for the next few years this is going to be a sword of Damocles over my head.
I'm afraid that's a rather ominous note to end on. While I can't offer the kind of cheeky comic relief that Phil so memorably provided [Phil Chestnut is a member of Friends of the Mountain Dulcimer who had recently written about his hospital-gowned mooning as he paraded his backside down a hospital corridor]. I can at least leave you with a humorous coda. With the diagnosis of dermatomyositis all but certain, I bookended my appointment with Dr. Bharadwaj with a couple of cancer screenings. First up was an abdominal ultrasound. I had been assured that there was plenty of time between my appointments, but as the wait stretched on anxiety began to fill every crevice of my being not already occupied by the 32 ounces of water I had been instructed to guzzle an hour before the test. When I was finally led to the examining table, the sonographer asked why I was getting the scan. As she slimed my water-logged belly, I described the rare disease I found on the internet which was about to be confirmed as an even rarer case of googlitis that was real. And as I did so, she was quietly freaking out. Was it possible that the rashes on her body could be that too? After a few nervous questions she confessed the reason for her concern. I assured her that dermatomyositis was quite rare and she was unlikely to have it. Though I advised her to see a dermatologist, I added that I had a history of reacting to skin care products I had been using for years and she might want to try changing hers. That was the first thing I tried when I started breaking out with all those strange rashes.

A sword of Damocles

Sometimes it feels like I've been a little too lucky. I've survived Legionnaires' disease...twice. I've also overcame sepsis, kidney failure, acute respiratory failure, multiple strokes on both sides of my brain, and a six-week coma, all with almost no lasting damage. I'm well on my way to overcoming the few physical problems I was left with. What I'm most grateful for is that I don't in fact have "profound brain damage," as my doctors proclaimed. Indeed, I experienced no cognitive deficits whatsoever.

Still, even though my dermatomyositis (DM) is now in remission, it's left a huge Sword of Damocles hanging over my head. I haven't discussed my DM in this blog that much, but the related cancer risk was one of the things that scared me the most when I Googled my constellation of symptoms and discovered that I might have dermatomyositis. Along with severe rashes and muscle damage--not to mention potential heart and lung involvement--DM also brings a significantly increased chance that its sufferers will be diagnosed with cancer within the first three or so years after diagnosis. Any cancer. Charming, huh? After that the risk decreases, but it never completely goes down to zero. According to one study, it's a 6.5-fold increase in risk. I've read even scarier studies. One study suggested that up to 45 percent of DM patients will eventually be diagnosed with a malignancy. It was soon after reading this that I stopped researching DM online. I was looking for hopeful news about my cancer chances, and I kept finding stuff like that.

Yesterday, I underwent yet another pelvic and vaginal ultrasound test, looking for signs of cancer. They always instruct me to drink 32 ounces of water an hour before the test without urinating. I'm only 5 foot tall, and my bladder is proportionally smaller too. I can't quite drink that much without barfing, but I was told that as long as my bladder is full, that okay. The sonographer then proceeds to press firmly all over my abdomen with its full-to-bursting bladder. As uncomfortable as that is, it's a nothing compared to the danger of having ovarian cancer detected too late to be cured. Ovarian cancer is "over-represented" in female DM sufferers over 45, but there's no way to know what other kinds of cancer to look for. That's even more worrisome.

Cancer is scary in the first place, and the fact that I could develop any cancer is unsettling. I have a nagging worry that I might have a cancer that my doctors haven't tested for because it isn't "age and sex appropriate." Okay, so maybe I'm not likely to develop testicular cancer, but what if I decided to develop a cancer that usually strikes the elderly? Or younger people? Or a cancer that generally strikes men more often than women? As it stands, the link between cancer and dermatomyositis is mysterious.Which was the cause and which the effect? The answer is uncertain.

I've handled all the blows I've been dealt so far with relative equanimity.What choice did I have? I guess if cancer is diagnosed eventually, I'll just soldier on and deal with it, as I have with everything else. But the uncertainty of not knowing is somehow harder. I keep waiting to hear the other shoe drop and watching for that sword.

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Coma Girl

Coma Girl

Not a miracle recovery, but a miracle of modern medicine

In 2013 I fell into a six-week coma and nearly died after I contracted legionella. The Legionnaire's disease was in turn triggered by immunosuppression caused by the prednisone I was taking for my rare autoimmune disease, dermatomyositis.

I suffered a series of strokes on both sides of my brain when the sepsis caused my blood pressure to plummet. I fell into a deep coma. My kidneys and lungs began to fail, as my body was began dying one organ at a time. My doctors told my loved ones to give up hope for my full recovery. They expected me to die, and even if I somehow lived, I would remain a vegetable or at best left so hopelessly brain-damaged that I would never be same. But unbeknownst to them, while they were shining lights in my eyes and shaking their heads, I was telling them in my coma-dream--my secular version of a near-death experience--to leave me alone because I was trying to get back to sleep. I was experiencing what is known as covert cognition, the subject of my Skeptical Inquirer article "Covert Cognition: My So-Called Near-Death Experience," which appeared in their July/August issue.

But it wasn't a miracle--despite what so many continue to believe--that I recovered so fully. I owe my life not to God, but the miracles of modern medicine, as well as the nature of the watershed-area brain damage I suffered, as I detailed in my article and in this blog.