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Cardiovascular Medicine, Chronic Disease

The road to diagnosis: How to be insistent, persistent and consistent

The road to diagnosis: How to be insistent, persistent and consistent

We’ve partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, to launch a patient-focused series here on Scope. Once a month, patients affected by serious and often rare diseases share their unique stories; the latest comes from retired nurse Joan Jahnke.

After 2 ½ years of seeking a definitive diagnosis for my heart disorder, my physician of 14 years told me, “You have been insistent, persistent and consistent each time you presented.” She smiled at me as she said this, and I accepted this compliment as a job well done.

I had been diagnosed with cardiac endothelium dysfunction. I considered the diagnosis a triumph of some sort: Standard tests don’t always identify the disease, and I had gone on quite the journey to identify the source of my problems.

From the beginning, I had stayed focused on my heart symptoms. When various specialists insisted on blaming other organs (gall bladder, uterus, lungs) for my chest pain, I was insistent that they were off target. As a cardiac nurse, I knew that the mounting conflicting test results were confusing, but I felt confident my heart was the issue. After all, I knew myself far better than anyone else could.

Within weeks of my symptom onset, I read an interview with Dr. George Sopko, a cardiologist at the National Institutes of Health, who said, “Women, pay attention to your heart symptoms.” And so, I did that. I began a very succinct journal documenting the timing, duration and quality of chest pain I was experiencing, and I also included what I did to relieve the symptoms. It presented a cause-and-effect pattern with details that supplemented my memory.

I persisted in my search for a definitive diagnosis for my symptoms. My sources were not anecdotal stories from Internet blogs, but instead were scientific papers funded by medical universities and research institutions. I copied medical articles, whose content and format would be most familiar to physicians. I sought out the opinions of medical friends and colleagues, and I approached my research from the perspective of a student – not that of an emotionally distraught woman whose quality of life was rapidly failing.

I remained consistent in my approach. Mindful of how time-consuming difficult diagnoses can be, I came prepared for appointments. I brought with me my ever-present journal, previously prepared questions and medical articles. Many times, my husband would serve as my note-taker, which allowed me to listen closely and concentrate on getting my questions and comments addressed. I offered options for my physicians to consider. I was wrong many times, but never was I rebuffed.

My behaviors culminated in a referral to the Emory Heart Center in Atlanta. By then I was very short of breath, and pain dominated my life. I forwarded my precious journal to the Emory cardiologists, Dr. Jerre Lutz and Dr. Habib Samady, and asked them to read it prior to my appointment. Dr. Lutz knew by page four what was wrong! And he immediately initiated a medical plan of action, in conjunction with Dr. Samady.

My advice to anyone traveling on the difficult road to a diagnosis is to not become the difficult patient – that is, the patient who doesn’t keep track of tests or medication trials as the medical record grows in size, who doesn’t return for appointments, or who disrupts an office practice and makes accusations that no one is listening to his or her complaints. A squeaky wheel doesn’t always get the first or best attention.

Instead, develop a set of behaviors that make you a participant in your healthcare – not merely its recipient. And be insistent, persistent and consistent in your communication and relationship with your physicians.

Joan Jahnke, a retired R.N. with experience in cardiac nursing, lives in South Carolina. She has written about her heart experiences and been active on the Internet since 2008. In 2012, she appeared on a PBS show to discuss how her heart disorder has changed her life, and the difficulties she had in obtaining a diagnosis.

10 Responses to “ The road to diagnosis: How to be insistent, persistent and consistent ”

  1. Carolyn Thomas Says:

    Joan, thanks so much for this comprehensive overview of how you helped to turn a nightmare series of debilitating symptoms into – at last! – a diagnosis and treatment plan. Your story has a successful diagnostic ending, thanks to your “insistence, persistence, and consistency.”

    But there are also a number of other important factors at work here that I’m sure helped you immeasurably along this difficult journey.

    Your experience as a nurse (and even better, a cardiac nurse) puts you into a unique position that few other patients struggling with misdiagnosed conditions could possibly enjoy.

    For example, you have “medical friends and colleagues” to consult on the side. Few other patients in this situation have similarly close social circles of medical professionals. (I sure didn’t!) And with your nursing science background, you were also already familiar with journals and other credible resources to help inform your health care providers.

    A far more common experience is for patients to simply trust that the “expert” who is misdiagnosing them must be right as, after all, he’s the one with the letters M.D. after his name. Emerging research on this deference to authority is interesting as it relates to our need to avoid being labelled a “difficult” patient. For example, here’s more on the journal Health Affairs’ report last summer: http://myheartsisters.org/2012/12/09/labelled-a-difficult-patient/

    You are also very fortunate to have a hubby who is so wonderfully supportive! Sadly, far more typical for many women is this reaction from another reader whose husband, growing weary of yet another non-productive trip to the E.R, told her: “All your cardiac tests are normal, and the doctors say it’s not your heart – when are you going to get over this?” When your own family stops believing what you’re saying to them, the horrors of ongoing misdiagnosis – while living with increasingly frightening symptoms – can feel unbearable – and certainly demotivating in terms of fighting for answers. If only more men were like your husband instead!

    It also struck me as amazingly fortunate that when you forwarded your journal to two Emory cardiologists, they took the time to actually read it in advance of your appointment! I’m not so sure that my own cardiologist (as skilled a practitioner as I consider him to be) would have the time or inclination to even get to page four of any journal I sent over to his very busy office.

    While it seems that, on many fronts, your persistent strategy was also aided by a number of other contributing factors, your lessons are indeed a powerful reminder to all women to be more diligent in “paying attention to heart symptoms” in the clearly dedicated example you have set here.

    Good luck to you, Joan.
    regards,
    C.

  2. Carmen Says:

    Thank you for your personal essay. While not many patients have the conviction or medical sleuthing skills that come naturally to you, they can document and record their symptoms, medications, and physical reactions. Simply maintaining an accurate record empowers patients to become co-detectives in the identification and treatment of their conditions. Simple, yet powerful advice.

  3. Robert Allan Bear, MD Says:

    I enjoyed reading this story. As emphasized in the 2012 Rosenthal Lecture of the IOM, telling our stories is important; doing so humanizes Medicine.
    Insistent, persistent and consistent patient communication is an important component of patient-centered care and patient engagement. However, there is much more and in working with another chronic disease population – dialysis patients – I realize how dusty the road is, and how far we have to travel on it.

  4. Elizabeth Says:

    I really enjoyed your article. It made me start thinking about how to better handle my medical records etc. I have a diseae (Fibromuscular Dysplasia) that took years to diagnose. While I was persistent I wish I had thought to bring hubby along and some of the other actions you put into play!
    I am lucky that there is an organization The Fibromusuclar Dysplasia Society of America (FMDSA.ORG), who works very hard for us who have this disease. I find such comfort in knowing others are working so hard on our behalf. I hope you and others have such a resource!

  5. BDennis Says:

    Our stories sound so similar (http://scopeblog.stanford.edu/2012/02/29/an-encephalitis-journey-a-dozen-doctors-and-2-5-years/).

    Persistence and perseverance are the common denominators. So glad you got your answer. For me, it was encephalitis and I felt vindicated when I got a diagnosis that fit. Thanks for offering your story and good advice for both patients and medical practitioners.

  6. Maryann Flaherty Says:

    Once again thank you to Joan for all that she does for all of the undiagnosed and misdiagnosed women who suffer from CMD. Besides battling this disease, we feel as if we are battling the medical establishment as well. We’ve all been sent home from ERs and appointments with the implication that we’re crazy. Because we all respond so differently to treatments, we need to find a doctor who will work with us and find the right plan for our individual severity and symptoms. I’ve taken Joan’s advice in the past–making a list of my symptoms, having a list of all medications that I had previously been prescribed, the results of all of my tests and diagnosis and getting all of that to the doctors before I met meet with them. They DO take you more seriously if they know you are consistent with your symptoms and are organized enough to present this information to them in an intelligent and orderly way. There isn’t a cardiolgist within a ten mile radius of Boston who wouldn’t consider me persistent. I am still looking for relief from my symptoms but because of Joan’s advice, I have a diagnosis and the medical community agrees that I’m not just another crazy women who is imagining chest pain. Thank you again to Joan. Hugs and gratitude to her!

  7. Joan Jahnke Says:

    Thanks to all for the wonderful comments. It takes just a minute to comment but really means a lot to me as all of my efforts with SCOPE,Inspire, the PBS Second Opinion show-Angina and other writings have been directed to helping just one other patient.

    My journal was truly the old saying ” All I really need to know, I learned in kindergarten”…..share everything.
    It doesn’t take any much to keep a journal or a diary. Anyone can ask for test results. My journal was because of the rising amount of data which no one in the medical field, including myself, could figure out. Yes, Dr.Bear, my road and journal was dusty. It is a little smoother but still a dusty, chronic condition. Thanks again, Joan Jahnke.

  8. Jaynie Martz Says:

    Thanks to Standford Medicine SCOPE for partnering with Inspire, my first go-to resource for women’s cardiac issues. There is a rapidly growing wealth of experiences appearing there. Issues specific to female heart life.

    Joan Jahnke is a terrific example of preparation and persistence meeting 21st century opportunities afforded via media and medical research accessibility….in addition to her formidable decades of experience as a cardiac nurse. I hope readers will take the time to watch the PBS episode featuring Joan and a panel of cardiologists.

    When I queried my own cardiac cath nurse (with 30 years experience in the cath labs) the average age of women coming through she replied, FORTY FOUR!

  9. Cindy Says:

    Loved your story and your strenght to move forward and find the cause of your issues. I too am from SC. Just wondering where you are from. I too have having problems as you did finding thr right treatment, but more problems finding physicians that know about the disease and symptoms. I have been suffering for 3 years and about at the end of my rope.I have also appied for clinical trials at Vanderbilt University Medical Center (VUMC). Still praying for treatment.

  10. Susan Says:

    Thanks for putting your story for others to read. I too am having many of the same symptoms for 4 years but still haven’t found a doc with any idea. Have see 12 doctors and 3 NP/PA’s, 4 were heart doctors. I have been told it is all in my head, just live with it. 1 cardiologist said it might be small vessel disease and tried me on Ranexa, Isosorbe but they didn’t seem to help so he asked us what we thought it was and what to do. I don’t know where to go from here. I have kept a daily log but doctors won’t even look at it.

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