Autoimmune Disease, Collaborative Medicine

(11 am. – promoted by ek hornbeck)

In the interests of full disclosure, as I write this I’m under the influence of approximately a tablet and a half of Oxycodone (Percoset 5/325), which I’ve been taking about every four hours for the past 48 hours. Likely way too much.

Hmm, where do I start and what elements of my story are cardinal to this post? And why the heck am I on pain medication?

In December this past year, I began to have some mild to increasingly painful chest aches, shoulder pain, and shortness of breath. I’ve been hypothyroid for around 15 years, and in 2006, while uninsured, I was profoundly idiotic and went off my thyroid medication. I wound up in the local ER one night after my kids determined that I might be dying (I was too stubborn to go due to the cost and frustrated that the appointment schedule at all of the local Basic Health clinics offered through the county for uninsured patients had an eight week waiting list). During that ER visit, my TSH level was tested. Thyroid Stimulating Hormone, or TSH, is one of the things commonly checked for to see how the thyroid is functioning. The so-called normal range (debated within the endocrinologist community) is between 0.4 to 5.0. Mine was 223. Suffice it to say, they prescribed me thyroid medication and I have not gone off of it since.

I’ve also never returned to what I’d call a fully healthy state since that time. My energy level has not returned, my weight has not dropped, though I’m not an overeater in general, and my joints have always had some mild pain on occasion – like when the barometric pressure drops. Old sports injuries – basketball, threw javelin and shotput one year in college, overextended golf swing during years of junior competition, etc. You might say these things are natural for a woman who’s passed through menopause, is now 50 years old, and has led a fairly frenetic existence as a single parent with three kids, now grown, multiple animals, and who is now employed at a company known for its rigorous working environment and continuous software release schedules. Other than the age and the menopause thing, all of those other factors are things that have not really changed in my life over the last eighteen years – with the exception of that one full year of unemployment (when I was between contracts).

And, hell, I’ve always had a high threshold of pain tolerance. Criminy sakes, I had three children over four years, all around nine pounds at birth, with no or few pain meds, no epidural, nothing. I walked around once on a broken ankle for four days before I realized the pain wasn’t going away. I’ve smashed countless fingernails and thumbnails with a hammer and endured complete nail losses without so much as a whimper (I obviously need to improve my hammer handling skills, though…).

By the time December 2008 came around, my frustration with increasing fatigue and continuously low iron levels, as well as an overall feeling of continuing malaise, drove me to seek an alternative, additional treatment after a couple of years of requesting through my family physician to see an endocrinologist and being told, “let’s just try another adjustment of Synthroid”.

On December 23, I went to see a naturopath to investigate additional alternatives for treating my hypothyroidism. Over the last three years since my unemployment ended and I became re-insured , my Synthroid, one of the many forms of the thyroid replacement medication given to folks whose thyroid doesn’t function, has been raised and lowered multiple times in response to my rather erratic and shifting TSH and T-3 blood test results. I wanted to explore adding Cytomel to the mix, another thyroid replacement hormone that regulates T-4 production. She started me on a low amount of Cytomel twice a day. While I was in the naturopath’s office, I mentioned that I had been having palpitations at night and had been experiencing some shortness of breath and pain in my chest and left arm. As a precaution, she called over to the cardiology department of the hospital complex to see if I could get in for a checkup with a cardiologist. December 23 here in the Seattle area was a day of snow on the ground, and most Puget Sounders avoid driving in snowy conditions  – so cardiology had several cancelled appointments and I was able to walk across the street to be seen right away.

They hooked me up for an ECG. Normal. Blood oxygen. Normal. Blood pressure. 117/60 – Normal. Are you sure you are a smoker? Yes – about a half pack a day now. “Quit smoking and lose weight and come back to see me in a month for a stress test. Everything looks fine.”

Five days later, more pain, more shortness of breath. Extreme fatigue. Saturday night, January 3, my youngest comes home from work and discovers that I’ve been pretty much in bed all day, propped up on about five pillows, gasping for breath. Crushing sensation in my chest and sharp pains in my back. She takes me off to the ER around 10 pm that night.  Four hours later I’m sent home with, effectively Pepto Bismol for GERD, percoset for chest pain, and a course of Zithromax (five day antibiotic) for viral bronchial pneumonia, though nothing was evident from a chest X-ray and I had no cough, nor a fever.

Seven days later, no relief. Pain still there, fatigue increasing, breathing labored. No cough. I give in and call my family practitioner. In fifteen minutes, he diagnosed pericarditis. Ordered a CBC and SED rate, another chest X-ray and told me to schedule an ultrasound of my heart.

SED rate 51, cardiac aminos elevated, white blood cells elevated. Something’s going on! Echocardiogram shows pericardial effusion and a slightly enlarged left aorta, no other damage. So I’m on Colchicine, Indomethacin for two months.

I’ll stop there with the detail. Suffice it to say that I’ve seen, in the interim months, a rheumatologist, another cardiologist, an endocrinologist, and I’m on my way as soon as can be scheduled, to see a pulmonary specialist for the recent occurrence (in the last seven days) of right side chest pain, stabbing when I breathe in, and for blood specks and small clots in my sputum when I cough. The pulmonary specialist I called this morning can’t book me in until July 7th, so I’m waiting for another referral for an appointment in the next week. The ER (that my cardiologist recommended I go to a couple of nights ago when I couldn’t breathe again and they couldn’t get me in during the day) ran an ultrasound on my legs to check for DVT – deep vein thrombosis, or clots – in the event that I am experiencing a pulmonary embolism. No clots, but the hospital’s CT scan machines were down so they couldn’t run a scan of my chest that night. This, at a Level III trauma center.

I’ve had a CT scan three months ago, two ultrasounds now, and multiple X-rays, along with several bloodwork panels. Inconclusive.

I’ve been on Colchicine, Indomethacin, four weeks of decreasing levels of Prednisone which I’m convinced only mask the inflammation, Methotrexate to stop deterioration of my joint linings, and a new off-label course of Hydroychloroquine, used as a slow-acting anti-inflammatory and prescribed by the rheumatologist since the Prednisone did nasty things to my insides and to my skin. And the ever-present Oxycodone when needed. I need it now just to be able to recline a bit when I sleep.

So, what’s my point? I’m insured and all is good? Well, yes and no. Those uninsured days were horrid. I was scared for my kids, all still dependents of mine in that unemployed year, and of course, terrified for myself as well. I ran up thousands of dollars of debt for that uninsured ER visit (which I’m convinced saved my life by getting me back on the straight and narrow with the Synthroid and the ER doc who wrote me out four months worth of prescriptions and handed me forty dollars to cover the next round of medication when I ran out of the hospital supply). I claimed bankruptcy last year to avoid garnishment of my now regular wages. That is a diary for another day.

But even insured, with the best insurance in the country (no co-pay, Preferred Provider, large scale employer), what I find parallels the parable of the blind men and the elephant:

Six blind men were asked to determine what an elephant looked like by feeling different parts of the elephant’s body. The blind man who feels a leg says the elephant is like a pillar; the one who feels the tail says the elephant is like a rope; the one who feels the trunk says the elephant is like a tree branch; the one who feels the ear says the elephant is like a hand fan; the one who feels the belly says the elephant is like a wall; and the one who feels the tusk says the elephant is like a solid pipe.

I’m not so sure that my story is indicative of the breakdown of what might fondly be called collaborative medicine in this country. I can tell you as one who has worked in program management for a software company, the ideals of good management, whether it’s a software application, or a patient, might essentially be similar. In my job, I’m evaluated by the effectiveness of my ability to engage in cross-group collaboration, my practice of transparency with others in my group, and my willingness to share documentation and arrange collaborative “triage” on bugs in the system I’m working on. These elements are considered crucial to achieving a successful outcome (or product shipment, or patient care, or…well, perhaps you get my meaning).

In the current medical system, it feels as if everyone operates within the boundaries and confines of their own practice – highlighted by overwork, lack of time to truly evaluate and document the histories of patients, reliance on initial assessments of test results without access to results patterns over time or to the overall picture of treatment by numerous specialists and doctors. Is this simplistic?

Per autoimmune diseases in general, what I do know is this: 75% of those affected in this country with autoimmune disease are women. Over 80% of those affected with thyroid disease alone, are women. The American Autoimmune Related Diseases Association highlights the complexity of diagnosis and treatment, especially for women, in the following paragraphs:

Autoimmunity and Women

Even though there is some universally accepted knowledge about autoimmunity, its victims — mainly women — have suffered from a lack of focus and a scattered research approach. For example, autoimmunity is known to have a genetic component and tends to cluster in families as different autoimmune diseases. In some families, a mother may have lupus; her son, juvenile diabetes; her sister, antiphospholipid syndrome; and her grandmother, rheumatoid arthritis.

Getting a proper diagnosis is sometimes as difficult as living with the disease itself. Victims face problems not only because physicians often don’t think of autoimmunity, but also because of who they are, namely, women in the childbearing years. As a rule, this is a time in a woman’s life when she looks healthy, though looks can be deceiving. Often, women who suffer from autoimmune diseases are not taken seriously when they first begin consulting their doctors. A woman’s symptoms are likely to be vague in the beginning, with a tendency to come and go, and hard to describe accurately to her physician. In a typical scenario, she is often shunted from specialist to specialist and forced to undergo a battery of tests and procedures before a correct diagnosis is made, which can sometimes take years.

According to a 2001 survey by the Autoimmune Diseases Association, over 45 percent of patients with autoimmune diseases have been labeled chronic complainers in the earliest stages of their illness. This can be devastating to a young woman who may then begin to question her sanity as she tries desperately to find out what is wrong.Tragically, many of these patients suffer significant damage to their organs in the meantime and end up carrying this health burden with them for the rest of their lives because of the delay in diagnosis.

I’m at risk of potentially overstating this, but those paragraphs underline my own anecdotal experience.

One of my questions has recently been, when I speak of my experience to others – how do patients succeed in getting proper treatment, patients who are not as educated as I am, not as calm as I normally am with doctors, not as articulate, not as organized about carrying their reports and results with them to each new physician (a learned lesson after multiple record losses between fax machines over time), and not as healthy or clear thinking as I can force myself to be even with “brain fog” – how do these patients fare in the mouse maze of healthcare? Especially if uninsured or underinsured?  

What to do? What to do right now? One thing to consider – contact your Congressman and request that they support Patrick Kennedy’s recent bill.

Additionally, you can contact and request the support of members of the House Committee on Energy and Commerce, where the bill is now in review.

H.R. 2084: Prevention, Awareness, and Research of Autoimmune Diseases Act of 2009

The bill’s purpose?

To increase awareness of and research on autoimmune diseases, which are a major women’s health problem, affect as many as 23.5 million Americans, and encompass more than 100 interrelated diseases, such as lupus, multiple sclerosis, rheumatoid arthritis, Sjogren’s syndrome, polymyositis, pemphigus, myasthenia gravis, Wegener’s granulomatosis, psoriasis, celiac disease, autoimmune platelet disorders, scleroderma, alopecia areata, vitiligo, autoimmune thyroid disease, and sarcoidosis, and for other purposes.

Much like the fragmented and often fractured approach to medical care in this country, submitting bills like this in Congress is often a fruitless venture due to the “market basket” nature of inclusion of multiple interests, concerns and diseases that the bill attempts to cover. However, history shows that the submission of bills that have a more singular focus and nature are often defeated or rejected out of committee due to their very exclusivity – they are too narrowly written to drum up much support except from specific interest groups without much political power.

However, submitting this bill does further the purpose of illuminating the issue of autoimmune diseases, the increasing complexities of said diseases and the lack of research.

A bill like this also targets the very real evidence that women’s health care in general still suffers in this country due to the still nurtured archaic mindsets that a woman’s health is too often characterized as “all in your head”.

The oxycodone is wearing off now…I’ll check back in when I can. Thanks for reading and for your patience with my sporadic involvement.

Also crossposted at Dailykos as part of the Thursday Night Healthcare Series.