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Called "hostile patient" by cardiologist when I turned down stress test

Discussion in 'General ME/CFS Discussion' started by Ayaju, Jan 28, 2014.

  1. Ayaju

    Ayaju Senior Member

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    This cardiologist knows nothing about CFS, and probably doesn't believe it's real. I expected more from her because she is one of the cardiologist's who works part time from the integrative medicine clinic, and her focus is on healing through nutrition. I've had serious concerns (and a couple of incidents) regarding my heart for years, but never talked about it with a doctor. That's not exactly true; in 2005, after a probable heart incident, I went to a cardiologist but was basically told I was too young to have heart problems and dismissed before I could even tell her what happened. That was before I was 50. She clearly didn't know that CFS can cause heart problems at any age; well, she clearly never heard of CFS.

    So, today, at the appointment with this cardiologist, when she got to the part about my needing a stress test, I tried and tried and tried to explain to her about CFS (which I've had for 16 years), and that a stress test could kill me. Especially given that no one administering the test would have any knowledge of CFS and would not know not to push me to do more than I could do. Personally, I think this doctor was the hostile one for not "hearing" me!

    Finally, I just got really quiet, tears formed in my eyes, and I softly said, "I have been completely alone. No help, no guidance, no support from any doctor. I apologize if I seem hostile, I don't mean to be, but you don't know what it's like." I think she might have heard me because the energy shifted a little. She's going to try to get me an MRI stress test, if my insurance will pay for it; which is iffy. It would be cool to be able to see clear pictures of my heart. She won't discuss nutritional approaches to heart health with me until she finds a problem.

    I'm wearing a heart holster right now to monitor my heart for 24 hours. I haven't had any palpitations or pains yet, but I did have an OI episode when I tried to get my nap.

    Anyway, I'm still searching for a primary care doctor here who is at least teachable about CFS.

    Judy
    Raindrop, PennyIA, Valentijn and 2 others like this.
  2. shah78

    shah78 Senior Member

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    try Barry and Marie Disch in Encinitas. Called the Collaborative Clinic. 760-500-8483 0r 760-298-8893. I get the impression you get both an accupuncture and an allopathic appointment with each of them. This is a very "allternative practice". No insurance/sliding scale. Outrageous business model. If you can even call it a business model.
    golden likes this.
  3. minkeygirl

    minkeygirl Senior Member

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    Isn't it sad that we have to be driven to tears to get someone to listen to us?
    PennyIA and golden like this.
  4. taniaaust1

    taniaaust1 Senior Member

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    sorry to hear of your experience.

    Im sure I was probably being seen as a hostile patient end of last year when I knocked back a tilt table test due to them not being willing to give me a saline IV immediately after it to help prevent the severe after effects I would get from doing it. I'll keep looking for somewhere to do it more safely for me (thou I dont truely need it as Im already got my OI issues diagnosed by poor mans testing and have specialists who have been trying to treat.. but having an offical test done so I could wave that paper result around doctors who dont believe me or my other doctors, would be handy).
    golden likes this.
  5. AndyPandy

    AndyPandy Making the most of it

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    Hi Ayaju. Sorry to hear about your problems with the cardiologist. I have not had positive experiences with cardiologists, including before developing ME/CFS. The ones I have seen have been incredibly arrogant. The one I saw most recently was incredulous that I could not remember the name of a specialist physician who saw me when I was admitted to hospital for a week with severe ME/CFS. I saw numerous doctors during that time and was really ill and not sure what was going on much of the time.

    Nonetheless, this cardiologist felt compelled to express his incredulity about my inability to remember the name of someone as important as a doctor. He just went on and on about it during the appointment in a nasty way. He then decided that I should take an exercise stress test which I said I would not be able to manage. I was sitting opposite him in a wheelchair. He then decided I should have I chemical stress test, where certain chemicals are used to place the heart under stress. I said I had concerns due to significant MCS and bad reactions to medications etc. He was dismissive of my concerns. I declined the chemical stress test and never went back.

    I am not sure how an MRI stress test would work for the heart. I would suggest you find out more about this and what it involves, particularly if it involves stressing the heart chemically. One thing I did have which was low impact was an echocardiogram, which showed no structural problems. I don't know if this is an option for you.

    Best wishes.
  6. Ayaju

    Ayaju Senior Member

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    Thanks everyone!

    It took me until today to get over my funk about my exhaustive experience with her yesterday. I didn't sleep well last night. WOW, are we ever invisible. But, her personality and what she thinks has nothing to do with me! I'm still wearing the holster; it stops in a couple hours and I can return it to the hospital for evaluation. I don't think it's going to reveal anything. She even said that most 24-hour holsters don't.

    I'm going to look into the Collaborative Clinic down the line, @shah. Do you have experience with them regarding your heart? I will do my research about MRI stress tests, @AndyP. I'm not crazy about the idea of having those organ-threatening chemicals injected into me, but for this it could possibly be worth it; if indeed that's what they do. I suppose if I turned down the MRI she'd go so far as to write it in my chart, "hostile patient" which of course would make it all the harder to find a primary care doctor! Never been called that by a doctor before; I'm your basic smiley, friendly patient.

    Judy
  7. Ayaju

    Ayaju Senior Member

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    You are right, there are risks involved from the different chemicals they put into you for the MRI. So, just think of the additional risks for me that no doctor I know of would even know about (or care about). Funny how the cardiologist didn't even mention anything about chemicals and risks.

    I, once again, feel like "f@ck 'em!" I did politely put in a call to her expressing my concerns about unknown risks, but I intend to fire her and to stick with the holistic and nutritional approach to health and healing. I really do believe in structured water and hydration to cure many (if not most) ills. Even that book from 1992, "Your Body's Many Cries For Water" describes in detail how most diseases are caused by dehydration.
  8. Ayaju

    Ayaju Senior Member

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    Furthermore, I'm even more upset because the ONLY reason I even went to that doctor was for a consultation about the nutritional approach to heart health. That's it! I just wanted to discuss nutrition with her because she has in her online profile that she is all about nutrition and the nutritional approach to healing the heart! And she wouldn't even talk to me about nutrition! She treated me like I didn't have a brain and wasn't capable of or even supposed to make decisions for myself about my own body and health.

    So now, here I am with more stress on my heart than ever because of her. And with the very real possibility that when I turn down the MRI and thank her but tell her I'm seeking help elsewhere, she might put in my chart "hostile patient." Which of course will then be a red flag to any potential and perspective primary care doctor that I continue my search for.

    What a racket.
  9. Wayne

    Wayne Senior Member

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    Hi Ayaju,

    I'm sorry you had to go through this experience, but alas, it's sort of par for the course for many pwCFS. One thing I keep in mind when engaging with conventional doctors, is that they've essentially been trained to be arrogant and dismissive, which puts them in the power position. And most of them don't take kindly to patients who want to empower themselves. They prefer submissive patients who defer to their "authority".

    It's risky business dealing with these kinds of dynamics. I usually try to brace for possible uncomfortable situations, and try to smooth out as well as I can any disharmonies that may arise. But in the end, it's my body, and my health, and I have way more invested in this than any doctor. So it's my choice whether or not to do anything my doctor may recommend.

    There seems to be a perennial battle going on within the world we live in of love vs. power. When doctors are coming from a place of love, they will be attentive, supportive, and understanding. When in power mode, it's more like arrogance, impatience, dismissal, etc. I try to spot as soon as I can what kind of doctor I'm dealing with, and avoid the latter to the best of my ability.
    Last edited: Jan 30, 2014
  10. Ayaju

    Ayaju Senior Member

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    Me too whenever possible. I was blindsided by this one though. I can almost laugh about it now because of the support from you all. I reckon the only way I'll see a cardiologist again is if I end up in the ER for a heart thing... which I pray won't happen and which I am doing everything in my healthy-minded power to not manifest.
    maryb likes this.
  11. Wayne

    Wayne Senior Member

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    :thumbsup::balloons:;):balloons::)
  12. CFS_for_19_years

    CFS_for_19_years Senior Member

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    I have a wonderful cardiologist at an HMO in Seattle. Like Wayne said, some doctors are arrogant and some are loving and attentive. Since I've seen about 25 specialists in about 10 specialties, I would say the specialty itself isn't the determining factor, it's the personality of the doctor. I've fired two primary care docs just to find one I feel comfortable dealing with, so I'm not afraid of walking away if my needs aren't met. My cardiologist isn't a CFS specialist, but he will discuss how CFS could impact the heart.

    By the way, it occurred to me that your cardiologist wants to rule out any underlying cardiac issues before treating you with nutrition. Makes sense to me. However, if you think a stress test would be too much for you, it's good for you to speak up.
    ahimsa and Valentijn like this.
  13. Ayaju

    Ayaju Senior Member

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    Wayne likes this.
  14. Wayne

    Wayne Senior Member

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    My first reaction was "barbaric":
    Valentijn likes this.
  15. CFS_for_19_years

    CFS_for_19_years Senior Member

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    I've received good nutritional advice from naturopaths at Life Extension (lef.org). It costs $6.95/month or $75/year to join. Your phone consultation is limited to 30 minutes and you can ask to speak with an M.D. or naturopath, whomever you would like. They recommend other brands in addition to Life Extension products. Your consultation with them does not constitute a doctor-patient relationship and they will tell you that before they begin.

    When you go to renew the second year, the $75 goes towards a $95 product credit, which you can use any time and never expires.

    If I could afford more than $75/yr I'd see a naturopath on a regular basis in person, but this is working out OK.

    From their website:

    "Health Advisors
    Our team of naturopaths, nurses, nutritionists, and personal trainers is yours with a toll-free call and free-of-charge, every day of the year. They'll help you customize a regimen of nutritional supplements, diet, and exercise that's just right for your needs."

    http://www.lef.org/magazine/mag2008...llness-Health-Advisors-At-Your-Service_01.htm

    For $6.95 (one month) you can see if you like their advisors. You don't have to commit yourself to a whole year right away.
    http://www.lef.org/membership/pricing.htm

    I am not affiliated in any way with Life Extension. I've learned about supplements that have been beneficial to me (PQQ and boswellia) that I wouldn't have considered had I not spoken with one of their naturopaths.
  16. Raindrop

    Raindrop Senior Member

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    Judy,
    I completely related to your Cardiology experiences!! I have gone to about four different Cardiologists.
    The first actually understood a tiny bit about CFS and claimed that HE had "had it because he had
    EBV but cured himself". At least he understood Cardiac Insufficiency!! Had that test done (which
    no other doctors seemed to believe in, yet it was developed at Mayo....go figure)
    It showed very significant Cardiac insufficiency. Over-all I quickly learned he was not a good
    all around Cardio doctor, so went to another. The other was "nice" but all he could say about
    my extreme symptoms was that I had "autonomic dysfunction". Tell me something I don't know!:aghhh:

    Then I saw this female - third Cardiologist who was completely annoyed that I wanted to ask questions
    and discuss my many severe POTS and OI episodes and ONLY wanted to have me do
    a Stress Test (treadmill). I, like you, had been avoiding it for about 10 years. Much of that also
    had to do with not only the PEM (fear of major worsening overall CFS illness) but also
    of the fact that I was totally incapable of doing such a scary test in the AM when they only had this available.
    She was not only dismissive but rather insulting.

    So now I am with a fourth Caridiologist. He is a nice enough older fellow, and even has
    another patient he recognizes to have CFS, but he doesn't get just HOW disabled I am
    by the EXTREMELY labile BP (can change 40 pts in just a few minutes!!!), frequent
    near-fainting episodes whenever I try to grocery shop or wait in a line.
    I tell you all this to let you know that you are SO not alone with frustration over these
    specialists. The thing that really angers me is that I feel most of my ME symptoms --
    the ones that are most disabling --- are heart and circulatory related. Just TOTAL
    Left Diastolic Dysfunction. My heart testing even SHOWS this!!!! Yet they are
    not even paying attention!!!

    I also want to tell you that I tried for gee....I think it was TEN years at least to avoid the Stress Test.
    I refused to do the Chemical type.....where they inject you instead of using the treadmill.
    I have very bad reactions to Epinephrine and I think it is this sort of drug. Speeds up your
    heart, of course, terribly. I intuitively knew I could be heading for REAL danger with that
    chemical. So FINALLY .......after all sorts of mental contortions.......I decided to DO the
    stress test on the treadmill. They had assured me that I would be able to STOP the test
    whenever I felt I needed to and that some information on me was better than none.
    * I got through it with flying colors*. Of course I did make sure I was rested up as much
    as possible. It was shorter than I ever would have thought! I had several chats with
    the Nurse Practitioner who did the test prior to actually doing it. That helped me to
    feel confident in the whole thing.

    If your doctor OR you feel that you really do need the information from this test,
    I would encourage you to think a little more about doing it. Perhaps talking to the staff
    more about your fears and how they can individualize the whole thing to your
    needs. You may still decide not to do it. At least you have heard from one ME patient
    who got through it surprisingly well *in spite* of having a pretty severe case of this illness.
    When I learned that I could *stop* the test If / when I felt I needed to, it made me much
    less fearful! (as it was I didn't need to stop it early). I am also glad I did it because
    it is objective clinical evidence that I DO have Left Diastolic Dysfunction. Now
    to figure out if there is anything that can be done about it. Might any of you know?
    Seems like that hasn't completely been figured out yet and if it is, then it might
    be a type of "cure" in this sort of case!

    Whatever you decide to do, I wish you the VERY best!! I also hope that you are able to
    find someone who is able to have the nutritional expertise you are seeking.
    Raindrop
  17. Valentijn

    Valentijn Activity Level: 3

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    I did a stress test recently, but it was at the clinic of a real ME/CFS specialist, Dr de Meirleir, who is also a cardiologist. So I knew that he knew what to look for, and that his staff would be prepared for the expected reaction. Basically the nurse was immediately physically supporting me when I got on and off the bike, without even having to be asked, or waiting until I started looking wobbly.

    And nothing injected, just a lot of cycling. Plus there was a hospital across the street, if anything went wrong :lol:
  18. CFS_for_19_years

    CFS_for_19_years Senior Member

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    I also did the stress test long ago, didn't die, then drove home OK. Your mileage may vary.
  19. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    My mother had a 24-hour Holter monitor a few years ago. We thought at the time that if they had left it for a few days, problems would have shown up. When my uncle needed a Holter monitor it was left in place for 3 days. I have read that cardiologists tend not to take female patients seriously.

    If you do turn down the MRI, be sure to remind her that you came to her for nutritional advice based on what she says on her website.
  20. Ayaju

    Ayaju Senior Member

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    Well, I love all this information. I almost missed it because I didn't get email notifications that there were new posts. I'm going to bookmark the LifeExtension site, thanks. I FIRED the doctor and feel EXCELLENT about it. I fired her because she ignored my call with questions regarding the risks of the chemical MRI; and I only called out of consideration to her; before she went to the trouble of trying to order one for me. I mean, I could have just not made the MRI appointment instead. Then, the next day I called to request she add that LDL Particles Number test to my labs before I went to the lab to get the cholesterol panel she ordered. (That's the test Dr. Mercola recommends, and he says it's easy to get), and the next day the nurse called and said she said NO to that test! I said, "Please cancel my appointment with her."

    I see my Integrative Medicine thyroid doctor next month and will get the lab tests through her.

    And, heck, even if there IS something wrong with my heart, it's not like I'm going to take any meds or have any procedures; it's just not my style. I'm already doing everything right nutritionally... and getting righter there with the help of all the great resources at my fingertips.

    I'm reading "Your Body's Many Cries For Water" and darn if even back in 1992 this doctor figured out that MOST diseases are caused by dehydration; there is a DROUGHT going on in our bodies. And I'm well on my way to hydration.

    I even got confirmation about that from Archangel Raphael! If you will permit me to admit that! I have an Angel Card Deck, did a reading for myself about my health improving, and I got the "HYDRATION" card! I didn't even know that card was in there!

    Hugs to all and tons of healing, Judy xoxox

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