A great article about odds and illness

I just read this wonderful essay in the NYT by a regular guy - a guy who is at the same time a husband and a doctor - watching his wife having a chemo infusion for the first time. The article centers on the risks involved in chemo infusions of Taxol, a drug used to treat breast cancer, and the rare but potentially fatal allergic reactions to the drug.

I liked this article for two reasons. First, I think it addresses the fear that any of us who take Remicade, or any other strong and dangerous drug, experience. Infusion reactions are lurking possibilities that could occur at any time. The reaction to Taxol can be far more serious than those for Remicade, but the fear he and his wife experience echo my own.

Second, the addresses something that all of us with unusual illnesses struggle with. Odds.

The author, Dr. Peter Bach, writes about the risks and odds he has encountered with his wife during her fight with cancer:

Each time we heard “that rarely happens,” we knew that whatever it was – fevers requiring hospital admission, mouth ulcers that would stop you from eating, overpowering fatigue, hair coming back a different color – it could actually happen. Each time the odds were in our favor, but the odds on the other side were not zero.

Our disease, Psoriatic Arthritis, is not common - roughly only one in 200 Americans have it. Put one way, you could say we beat the odds when we got our diagnoses. But instead of making us feel lucky, I suspect beating the odds makes most of us feel more vulnerable. As someone with multiple diagnoses, I take each new ache or odd sensation a little more seriously - because I never know when I'll beat the odds yet again.

Dr. Bach puts it nicely.

The odds that Ruth would get breast cancer before she reached age 43 were about 100 to 1. Odds seem a lot different once you’ve come up on the short end.

Chances are I couldn't say it better - so I won't even try.

I'm going on a diet, and here's why...

An article in the New York Times caught my eye today. It inspired me to get out of my back to school and so much to catch up on so why the heck did I get that puppy when the cat died funk, and start writing again.

(yes, we got a puppy. By the way: puppy + psoriatic arthritis = really achy joints, a few second thoughts and lots of laughing. Back to the science - more on puppy later.)

The NYT's front page story was on autophagy, which was described as:

Our cells ... perpetually devouring themselves, shredding their own complex molecules to pieces and recycling them for new parts.

Apparently, we all have proteasomes and lysosomes, two types of small structures inside of cells that are recycling machines. They work day and night eating cells and spitting out the remains, which are used to build new cells. One scientist was quoted saying that we get an entirely new heart every 3 days due to the continual cell destruction and re-creation. WOW.

Scientists are now starting to believe that autophagy (or the lessening of autophagy as we get older) has a lot to do with the development of Alzheimer's and cancer. While autophagy doesn't necessarily cease as we age, it slows down, causing more and more cells to live longer and therefore mutate, leading to illness. The current thinking is that if we can control autophagy, we may live longer.

OK, fellow autoimmune specialists... doesn't "autophagy" remind you of another cellular process we're all really familiar with? Isn't autoimmune disease caused when our immune system (different cells, I know, but...) destroys our own cells mistakenly? Couldn't autoimmune disease be related to autophagy? And, could this slew of new research also support research in autoimmune disease?

It turns out that scientists are starting to connect the dots between autophagy and autoimmunity. While the NYT article doesn't mention autoimmune disease, there is some great work out along these lines:

The connection between autophagy and immunity should be emphasized in that autophagy contributes to the defense against microbial agents [5, 12], promotes antigen presentation through MHC class II [13, 14], is induced by cytokines [5, 15, 16], may regulate T lymphocyte survival and function [17], and may be stimulated by serum autoantibodies [18].

This is from an article by a ton of docs (Ana Lleo, MD, Pietro Invernizzi, MD PhD, Carlo Selmi, MD PhD, Ross L. Coppel, MD, Gianfranco Alpini, PhD, Mauro Podda, MD, Ian R. Mackay, MD, and M. Eric Gershwin, MD) linking autoimmunity and autophagy in the Journal of Autoimmunity (2007). The article is long and complex, so I'll cut to the chase. They conclude:

In the context of immunity, there is clear evidence for participation of autophagy in intracellular defense against infectious agents and also perhaps, in disposal of unwanted e.g. misfolded self proteins, although there is no evidence yet for an ensuing inflammatory response to such disposal.

As always, lots to learn on this topic, but there are some smart people out there trying to put all these pieces together. I'll keep watching, and will write more when I learn more.

OK, so I can hear you asking: "why the diet?".

Here's why. Autophagy kicks in when our bodies have fewer new proteins coming in... you've all heard of the process where our body starts "eating" itself when it has less food. And it is well documented that people on permanently lower calorie diet are healthier... turns out semi-starvation is kinda good for you. Scientists think that inducing this "cannibalism" increases the destruction of older, dysfunctional cells - those that cause Alzheimer's and cancer. So I wonder if the same is true of autoimmunity. In short:

Would a lower calorie diet induce autophagy, and help our bodies destroy those cells that are mis-firing and causing our immune systems to act up?

BTW, because of the dog, I've lost 3 pounds, just from walking. I look fabulous. And if I just stop eating, I'll apparently be able to walk the dog 'til I'm 150.

Where's the leash?

Health Care in America, Part II

LILI SACKS, a primary care doctor in Seattle, says she began thinking differently about her work on the day she realized she was beginning each appointment with the words, “Sorry I’m late.”

The above is a quote from a recent article in the New York Times on health care... it is a perfect follow up to the New Yorker article I talked about a few weeks ago. Here's what follows that quote:

Scheduled to see as many as 25 patients a day at a large clinic, she lacked the time for thorough examinations and discussions. Because of this, she said, primary care doctors are often forced to order tests and send patients to specialists.

“Could I have helped some people without specialists and tests? Absolutely,” said Dr. Sacks. “Would it have saved the patient and the insurance company both money? Absolutely. Is the system set up for the best care and cost efficiency? Absolutely not.”

Dr. Sacks said she worried that seeing so many patients would lead to errors.

Much of this article talks about the "direct practice" model of medicine, which for many physicians translates to: each patient pays them a monthly fee, but then gets to see the doc for no cost, including many tests, pretty much as soon as and as often as needed. Dr. Sacks, in this article, switches her practice to a direct-practice model, and speaks very highly of it in the article.

Last year, she moved to a clinic that focuses on longer patient appointments, 30 to 60 minutes. This translates to 10 to 12 patients a day. Patients also communicate directly with her by phone or e-mail.

During those longer appointments, Dr. Sacks can perform basic lab tests and simple procedures, so patients see fewer specialists.

I've been skeptical of this kind of service - worried about an even further separation between the wealthy and the poor in the type of health care they receive. But here's an argument from this article that I think makes a great deal of sense (italics mine):

Dr. Sacks said the financial mechanics of the direct-practice model match her medical goals. When she was compensated based on insurance, she was paid every time she saw a patient. Now, if she can use education and prevention to reduce office visits, she and her patients benefit, she said.

One thing (among many) required to make this model work would be a welcoming atmosphere... a "we want to see you" kind of attitude... at the doctor's office. Preventative care requires a doctor be able to see patients before diseases strike or progress too far. However, I can imagine if I was paying $100 a month for health care out of pocket, on top of insurance, I'd want to feel free to walk into my doc's office anytime I darn well felt like it.

Is anyone using this model? Do you like it?

I'm all about reducing the cost of health care. Imagine if it came with better care too!

Universities, beef, and some education on the side...

In the last few days two articles have come out in the New York Times that I think are relevant to this blog, despite the fact that neither of them is about psoriatic arthritis or psoriasis. Humor me... I do have a point...

The first is an opinion piece called End the University as We Know It, by Mark C. Taylor. It calls for a systemic reorganization of the university system, most specifically in graduate education, because:

Most graduate programs in American universities produce a product for which there is no market (candidates for teaching positions that do not exist) and develop skills for which there is diminishing demand (research in subfields within subfields and publication in journals read by no one other than a few like-minded colleagues), all at a rapidly rising cost (sometimes well over $100,000 in student loans).

Why is this relevant to PsA, you might ask? It was these paragraphs that hit me:

Responsible teaching and scholarship must become cross-disciplinary and cross-cultural.

Just a few weeks ago, I attended a meeting of political scientists who had gathered to discuss why international relations theory had never considered the role of religion in society. Given the state of the world today, this is a significant oversight. There can be no adequate understanding of the most important issues we face when disciplines are cloistered from one another and operate on their own premises.

It would be far more effective to bring together people working on questions of religion, politics, history, economics, anthropology, sociology, literature, art, religion and philosophy to engage in comparative analysis of common problems. As the curriculum is restructured, fields of inquiry and methods of investigation will be transformed.

Ok, so sub out the words "religion, politics, history, economics, anthropology, sociology" etc. etc. and put in "rheumatology, dermatology, immunology, gastroenterology" etc. etc. The more I learn about how deeply connected autoimmune diseases are, the more I wish that these, and other, fields of medicine were working more closely together.

Now I know I have it really good - my rheumatologist consults with my dermatologist on almost everything she does, and visa versa. But I'm assuming that that is not true for many of you, and certainly neither of them has talked to my gastroenterologist. I do like the idea of a new area of clinical (meaning, not in a lab- they see patients) specialization - autoimmunology - but boy folks in that field had better have great communication skills.

Anyway, go read the article. It really makes you think.

That second article? Here - Paying a Price for Loving Red Meat, written by Jane E. Brody. Apparently, a new study demonstrates that the more red meat consumed, the more likely you are to die early.

This article struck me because of the increased risk for heart disease that psoriasis patients (and, in theory, psoriatic arthritis patients) have. Here's my thinking - I'm already at increased risk for heart disease... and red meat consumption increases that risk further! I want to protect my body, and I want all of my readers to, too. So I thought I'd share this data...

For lunch today, I'll be eating lentils while reading the paper. What about you?

What's your buzz cut?

Today's New York Times has a beautiful article about self-image and illness, written by Dana Jennings, a blogger/writer who has prostate cancer and has gotten a buzz cut to help get through. He says:

In a time of utter vulnerability — having already weathered three months of post-diagnosis ups-and-downs — I needed the primal ferocity that a buzz cut proclaims. I needed to look like a soccer thug or an extra from “Prison Break” to help get me through surgery, the physical indignities of post-op life, and my subsequent radiation and hormone therapy. I still do. My prostate cancer and its treatment have transformed me — in body and spirit — and the buzz cut has helped me cope with those changes.

For many people, including myself, chronic illness profoundly changes who you think you are. Jennings quotes Dr. Robert Klitzman, an associate professor of clinical psychiatry at Columbia University Medical Center, who aptly says:

“The challenge with cancer is to find a new sense of self... because the narrative of yourself has been disrupted".

I think this is true of chronic illness as well. I know I have struggled immensely with my personal narrative since October, when I found out I have three inflammatory and chronic diseases (celiac disease, psoriatic arthritis, lymphocytic colitis). My childlike belief in my own invulnerability has been exchanged for a terrifying sense of my own mortality. While externally I'm talking and writing and "being" my disease, internally I cringe when I think of myself as someone who ONLY is sick. The other identities - aspiring writer, competent mom, non-profit professional, loving wife, all seem to hide behind the title "sick person".

I despaired in October, as you can tell if you read the first few posts on this blog. I wallowed. I grieved deeply for the me that I felt (and still feel) was lost.

This blog may be my buzz cut. I can't be silent. I'm writing in order to create the new me - a me who is sick, but is also many other things: a researcher, an advocate, a writer. Dana Jennings says about his true self:

I am basically a cream puff. But I like the contradiction, the tension, that the buzz cut seems to represent between my inner and outer lives.

The buzz cut is a kind of veil or, perhaps, a mask hiding my secret identities: one of which is being a cancer patient.

But to be honest, I don’t think I’m hiding anyone. We are, all of us, a bundle of apparent contradictions. Even though I’m a dreamy pragmatist, I need the guy with the glare, the shaved skull and the brutishly broad forehead to help me through the day.

I need to write to get through my day. What's your contradiction? What's your buzz cut?

A rose by any other name... would be something else?

The New York Times had a fascinating article in their magazine this weekend about the Undiagnosed Diseases Program sponsored by the N.I.H. The article focused on a 31 year old woman named Summer Stiers in declining health, who has spent the last 20 being undiagnosed or misdiagnosed by well-intentioned physicians. She was frequently misdiagnosed with autoimmune conditions, because her symptoms just scream "autoimmune".

The article followed her disease progression, and her experiences in Bethesda, MD being examined by a constellation of specialists from the N.I.H.

There were countless fascinating aspects of this article - I recommend you take the time to read through it. However, what stood out most to me was the difficulty physicians have in making accurate diagnoses, even now, with all of our tools and experience. The article highlights how the N.I.H. is trying to advance knowledge about both specific illnesses and the diagnostic process through the Undiagnosed Diseases Program, and it brings home how complicated the jobs of physicians AND patients are when addressed a complicated array of symptoms.

A few weeks ago I wrote about how fractured and fragmented our current of system of diagnostics are, and the article on Summer Stiers included a great discussion of this problem. Forgive the long quote - this is from page 5 - but I found this so interesting, esp in light of diagnostics in the field of autoimmunology (italics mine):

The balkanization of medicine accounts for an increasingly constrained approach to diagnosis — an approach that... is defined by a specialist’s focused knowledge rather than by some broader understanding of the patient. “This is partly because of how medicine is taught — how it has to be taught,” said Kathryn Montgomery, professor of medical humanities and bioethics and of medicine at the Northwestern University medical school in Chicago, when we spoke by telephone. “Doctors get educated to solve problems in their own terms. They’ve got only a certain set of information and experience at their disposal.”

Few physicians are trained to look at the patient as a whole, Montgomery says, with the exception of generalists like internists and pediatricians. ...

But the problem is not just overspecialization, Montgomery says; it’s the complex nature of diagnosis itself, and the difficulty of trying to teach the process in medical school. Because diagnosis involves so many intersecting and often incompatible parts, medical students have traditionally been taught to do opposite things at once when they meet a new patient: suspend judgment, but form an initial impression; look for a single diagnosis to explain all symptoms, but watch for co-morbidities; avoid the anecdotal, but pay attention to stories; expect the diagnosis to be a common disease, but don’t forget the rare ones. This dissonant approach was recently modified in some medical schools, according to Montgomery, with students now taught to begin with a “working diagnosis” that they refine as they accumulate data that either confirm or refute their first guess. But while the working-diagnosis method might clarify some things, Montgomery worries about what might be lost: a sense, as she wrote in her 2006 book, “How Doctors Think: Clinical Judgment and the Practice of Medicine,” of an alternative pathway. Because of the inherent contradictions traditionally taught in medical school, she wrote, new doctors have been able to achieve “a certain balance, a consciousness that, no matter which way they may work through a diagnosis, there is another way.”

As patients, we see similar contradictions in our roles of finding the right doctors. Do I find an older doctor... someone with lots of clinical experience? Or should I turn to someone who is fairly new out of school, who has fresh knowledge on the most modern techniques and research? Do I find a generalist or a specialist? Do I look to someone who is alternative in their approach, or have two separate doctors, one representing the "western" approach and one representing an alternative approach? When meeting a doctor for the first time, do I tell them my whole complicated history, or just focus on the day's issues?

This makes me more and more convinced that I am my own boss re: my health (see "I'm canceling everybody"). Doctors, by the very fact that they are human with limited brain-space, are fallible. We have to be our own agents, and rely on our doctors as we would rely on consultants. We have to be our own Chief Information Officers.

Thanks Mom

My lovely husband sent me this article in the NYT yesterday (here) . I'll let you all read it for yourselves, but the gist of the article is:

Researchers have long wondered how pregnant women might shape their fetuses’ development — by protecting them against later disease, perhaps, or instilling an appreciation of Mozart.

Now a group in California has discovered a surprising new mechanism by which women train their fetuses’ budding immune systems: the mother’s cells slip across the placenta, enter the fetus’s body and teach it to treat these cells as its own.

A crucial task of the developing immune system is to learn to distinguish between foreign substances and the self. It is tricky: the system must respond to outside threats but not overreact to harmless stimuli or the body’s own tissues.

The new findings show “how Mom is helping to tune that whole system early on,” said William J. Burlingham, an immunologist at the University of Wisconsin, who is not connected with the research. “It’s a major advance, very new and very exciting.”

The work could have relevance to research on topics as diverse as organ transplantation, mother-to-child transmission of H.I.V. and autoimmune disorders like Type 1 diabetes.

Now, I haven't started talking about T cells here yet - I still don't get it all myself. I'm learning that the immune system is incredibly complicated, and every book I read describes it differently. I'll write more about it as I understand it more. BUT... the take away I got from this article was:

1) our first immune responses are learned from our mothers, when we are in utero. This research will greatly enhance our understanding about how these first lessons are taught, and maybe how the immune system learns in general.

This article also illustrates the reverse of what I was talking about in yesterday's post. Not only does the mother's immune system have to be tolerant of the child it is hosting, but the child's immune system has to learn to be tolerant of its mother.

Now if I could only get Zoe to tolerate me!