Saturday, September 19, 2009

We need an elephant specialist!

This is a special story written on the Cushings Help support boards. The author gave me permission to post it here on my blog. No matter how good our doctors are, if someone doesn't put it all together, no one sees the whole picture. Most of the time we, the patients, are the ones who put it all together.

Kim's story:

He walked into the exam room, introduced himself, and as he sat down, he asked, "Has anyone ever suggested you might have Cushing's disease or Cushing's syndrome?"

My name's Kim, and I'm 49 years old. I have two children, two grandchildren, and two full-time jobs. On the weekdays, I'm a writer and editor specializing in education issues; evenings and weekends, I'm marketing director at an international and arthouse movie theater. I had to pick up this second job to pay for the medical expenses not covered by my health insurance. And, as you may know, there are a lot of medical expenses involved in this disease/syndrome.

Until three years ago, I was also a marathon walker and a racewalking coach for an organization that trains endurance athletes who raise funds to fight blood cancers. For ten years, I walked between 35 and 50 miles every week. It was nothing for me to wake up on any given morning and decide to walk 10 miles. Saturdays I would racewalk between 12 and 18 miles with my group, and then Sunday mornings I met with some friends to bicycle 10 miles and then walk four miles. I bicycled or walked to and from my weekend job even after walking and cycling for hours earlier in the day. When I traveled, I walked everywhere: once I walked the entire length of Manhattan just to see what it would be like. Four years ago, I was sitting in a coffeehouse in mountainous Sarajevo, Bosnia, and noticed a passel of runners with race tags on their shirts. I was curious to know which race was going on, as I hadn't heard of any big events, so I walked down along the lines of runners back to where the slower runners and walkers were, and then walked alongside them for the rest of the 10-mile race. Up mountains and hills and down them, talking and listening all along the way. Just on the force of a whim.

In September 2006, I walked two half-marathons and kept up with my regular training besides. But a few weeks later, I came down with a bad flu, which quickly spiraled down to bronchitis and pneumonia. I was sick for weeks. So sick that an alarmed marathoning friend called his brother-in-law, a renowned pulmonologist, and asked a favor: would he come home from vacation immediately and see me at Duke University Hospitals and Clinics? His brother-in-law did indeed drop everything and met me at the hospital during his vacation time so that he could figure out what was wrong. Himself a marathon runner, he asked me to walk with him down the hallway to check my tolerance for exercise; I couldn't walk even five minutes at a brisk walking pace. I was "deconditioning" before his eyes. I was so exhausted I cried. I slept in the exam room between tests; I even fell asleep during a CT scan.

I never got better. I never walked another half-marathon. I never got back to my daily routines. I never felt healthy again.

Recently I sat at my table staring at an information sheet for the referral to an endocrinologist. I was so exhausted with the task of listing out all my surgeries, procedures, and diagnoses. I flipped through the contact list on my iPhone to help me remember which doctors I'd seen in the past three years. Almost every alphabetical category on my contact list contains a specialist. Each one of them is at the top of his or her field. Each one of them is terrific. Each one of them solved seemingly impossible medical riddles. Each one had valid points in believing that solving the mystery within his or her field would make me better. But which one was right?

I spun through my contact list, A-Z.

Would all be revealed by the bariatric surgeon who performed the LapBand surgery after I'd gained 70 pounds in 2007? Well, it must not be him; despite a very successful first couple of months post-Band surgery in 2008, I began to put on ounces rather than lose pounds -- even while on a strict diet that was assiduously journaled. He was frustrated, I was frustrated. Why on earth wasn't I losing weight and feeling better? I was clearly committed to compliance, and he was clearly committed to having a successful patient outcome. What was wrong?

There was the cardiologist who warned me that my heart is "practically dissolving." Maybe fixing that would solve the puzzle and make me healthier. Well, we tried that, but the slow slide continued. And what was the deal with this hypertension? Before 2006, my blood pressure was fine. Now it was so high that I was at risk for stroke.

My dentist was concerned about the mouth sores that never seemed to heal properly. And my mouth was so dry.

A dermatologist was amused by my response when I was referred to her and diagnosed with a pyogenic granuloma on my hand: I just couldn't stop laughing. My hand was bleeding spontaneously from this spot on the palm of my hand -- just like I had stigmata! Who could have kept themselves from laughing at that? While she was repairing the exposed vein, she commented on my dry skin and the vertical split in two of my fingernails (one of them quite severe). Also, where did I get all those bruises? Do I bruise often? Have I had a recent blood count?

Then there was the forensic psychiatrist who specializes in treating patients with posttraumatic stress disorder and said that I was the highest-functioning victim of childhood trauma and domestic abuse she'd ever met, but that I was so medically fragile since getting sick in 2006 that she was seriously worried about my living through 2007. The anti-depressants prescribed didn't seem to help with the insomnia I was suffering, so she kindly offered Ambien as well.

And the gastroenterologist who was intrigued by the various symptoms I presented -- not merely the GERD, Schatzki ring, difficulty processing and storing iron taken orally (attempts to keep my iron levels up failed so miserably that the only way I could keep my gums from remaining permanently white was to go back to the hematology-oncologist for IV infusions of iron), and esophageal ulcers and lesions that never healed ... but also the various other ways my body was failing. CREST syndrome seemed likely, but ....

Could the answer lie with the general practitioner who steadfastly maintained that if I would just fecking lose weight that I'd feel better? When I was too exhausted to see the cardiologist he referred me to, he called me at the office and ordered me to leave my desk right then and there and get my butt to the cardiology office, and then to call him when I was finished. And he was a pitbull when it came to my meeting with other specialists. It was his recommendation that I have weight-loss surgery, because he was sure it would reduce the strain on my heart, fix my pulmonology issues, and get me back on track with my marathoning.

My hematology-oncologist was convinced the issue was a leukemoid disorder consequent to chronic illness. She could treat that. But which chronic illness was causing it? After months and months of testing (including one test that required me to be helicoptered to the testing facility), bone-marrow biopsies (ouch!), and endless rounds of hours-long IV infusions of iron, enzymes, vitamins, and mildly chemotherapeutic agents, she admitted she was stumped.

An amazing opthalmologist spent hours and hours and hours trying to figure out why my vision would go blurry and I suffered endless headaches. Retinal tumor, possibly? CREST syndrome would explain the dry eyes, of course. But not even tear replacement helped with the blurriness.

There was also my fantastic orthopaedic surgeon who did a meniscus repair after I injured my knees through repeated stumbling. He told me he was concerned about how long it took me to recover and the fact that I hadn't seemed to heal well from a previous surgical repair of an ankle injury also caused by instability. He's a very good surgeon, he said: why was there so much scarring, and why was it taking so long for his work to heal? And what was up with all the inflammation in my knees, calves, and ankles?

What about the pulmonologist who was investigating the possibility of pulmonary hypertension? He seemed buoyed by his success in most of the investigative work but simply could not track down the reasons the condition of my lungs and heart made me a possible candidate for a heart-lung transplant a few years down the road. My blood pressure was so high at the time of my initial appointment that he was concerned I would have (or perhaps had had) a stroke. Why was my throat chronically sore? Why did I have such severe laryngitis for so many weeks on end -- so persistent and severe that he considered referring me to an ENT surgeon to repair what might be a malfunctioning larynx?

Maybe the rheumatologist seeing me for fibromyalgia and a strange pattern of diffuse inflammations throughout the body? We never got very far getting to the bottom of that, either. But we did get a lot of test results flowing.

Finally, I'd completed the medical history form and my list of medications. It was my bariatric surgeon who called my primary-care physician (the mean, crabby one who insisted I was fat, not sick) and asked him to have my cortisol levels tested. He was just so frustrated that the LapBand surgery didn't work as well as he was sure it would. There was clearly some underlying cause impeding success -- because it wasn't his surgical skills!

And that's how I ended up in the office of my endocrinologist last week. With my chart of lab results and my medical history in his hand, he walked into the exam room and introduced himself. As he sat down, he asked, "Has anyone ever suggested you might have Cushing's disease or Cushing's syndrome?"

I thought I'd had a lot of testing done by other specialists, but I was a mere wee, green lassie inexperienced in the ways of testing before this past week! To be honest, I can't really tell you all the results of all the tests right now, but as things come in, I'll be documenting them and perhaps sharing some of them here. (Robin's note: "here" is on the message/support boards.)

I want to repeat that, with the possible exception of my primary-care physician (who's a pitbull when it comes to medical case management but ... um ... well ... lacks certain people skills that ordinary mortals have), I have had the most amazing doctors in the entire known and unknown universes. But my endocrinologist is probably the most amazing I've ever had. Compassionate, holistic, and knowledgeable. When he learned I was working two full-time jobs and still wouldn't be able to afford more testing and medical costs until my new insurance year starts in January, he referred me right there and then to HealthWell Foundation, which offers financial assistance for medication copays for certain illnesses and conditions. He was astonished that I was still working full-time, much less working two jobs seven days a week. "You're just not well enough to keep that up," he said, "and I am not going to let money keep you from getting a diagnosis and treatment." And 20 hours later, I had an email from HealthWell Foundation saying that I was preliminarily approved, pending verification of a couple documents.

I'm exhausted. And I'm broke. And I want to feel better. And I don't know whether I'm resilient enough to make it through this.

But there's a saying in Bosnian: "Novi dan, nova nafaka." It means something like "With every new day dawns a new chance." Giving my medical history to this incredible endocrinologist was one dawn. I just have to hang in there for another. And another. And as many anothers as it takes.

Novi dan. Nova nafaka. I believe in that chance.

After I asked Kim if I could post her story here, she responded in part with this: "Robin, thank you so much! I don't mind sharing my story at all. It's a perfect demonstration of the "four blind men and the elephant" story: every single one of my doctors over the years has been excellent, and I wouldn't want anyone else to have dealt with my leukemoid disorder, my knee meniscus tear, my therapy needs, my eye problems, my asthma, my heart and blood pressure issues, etc. .... but what resulted was that I had an ear specialist, a trunk specialist, a tail specialist, and a foot specialist all entirely missing the need for an elephant specialist."

I would have used the analogy of hearing hooves but not seeing the stripes. Elephant or zebra, the point is well made. Thank you, Kim.


  1. Thank you for posting my story, Robin! The past week in particular has been very sad for me, but when I read the stories of experience from others, I'm buoyed by their strength and resilience.

    Special thanks for helping me stay afloat this week and being so affirming of my experiences. You're my hero du jour, Robin.

  2. And you are mine, Kim. Never doubt your hero status when surviving this disease. You also have just helped countless with your story. Hugs, gal...hang in there.

  3. Holy "fecking" crap, indeed. Robin, thanks for telling me to come read this.

    To me this sounds like a classic story of what happens when you have silos of treatment, with each person examining you separately, instead of a team that works together. I'm no expert but I can't help but wonder if the story would have gone differently in a place like Mayo, where, I'm told, the physicians do work in teams instead of silos.

    I'm involved in a new medical society, the Society for Participatory Medicine, which is devoted to the new (to some) methods of patients being active partners with their physicians. It's an outgrowth of the patient empowerment movement. I'm starting to wonder whether one of our causes shouldn't be get providers to participate with each other!

    Please keep us informed.

  4. So, I should ask, what region do you live in?

    Consider, too, please, a not-dissimilar story from a patient who died this year of kidney cancer (my disease) after being unable to afford tests for his symptoms. This is no laughing matter. His widow painted a mural in DC that has made it into the august British Medical Journal.

  5. Dave, the sad thing is, so many of us have similar stories. And even those who have been to Mayo have had the same experience. I'm not sure if it's the obscure nature of this beast (Cushing's) with it's diverse and multiple symptoms or if it is the way medicine is practiced across our country. Whatever it is, we need to fix it.

  6. Are there any conferences about thyroid conditions?

  7. Yes, this does point to the problem of "silos" in which we're often shunted along diagnostic trajectories depending on a physician's skills, interests, and hypothesis.

    I've lived in North Carolina since 1995. Prior to that, I lived in Iowa and Minnesota. I haven't been to Mayo, though.

  8. What sort of delays did you encounter between referrals?

  9. Have you looked into autoimmune diseases as a whole? John's Hopkins has an Autoimmune Disease Research Center. Noel R. Rose is its director and he has written on the *need for doctors who deal specifically with autoimmune diseases* rather than the body part the autoimmune disease affects.
    When you have one autoimmune disease (like Cushing's) you are more likely to have another. With your reports of dry mouth, you might want to check out Sjogren's Syndrome.
    My heart goes out to you!

  10. Mayo does not work the team approach.



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