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My new autonomic cardiologist wants to hospitalize me for tests!!!

Discussion in 'Autonomic, Cardiovascular, and Respiratory' started by Gingergrrl, Sep 12, 2014.

  1. Gingergrrl

    Gingergrrl Senior Member

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    Warning... this is a long post :D

    I had the consult with the autonomic cardiologist today, Dr. C, and had been referred to him by my regular cardio. He was amazing and I cannot recommend him high enough. If anyone in LA (or elsewhere) wants his name, send me a PM.

    Back in Aug, I had an exercise echocardiogram (at my regular cardio) and was never given a copy of the results but she called and told me that I had "No ischemia or blockage." Well, this turned out not to be true and Dr. C showed me the results. It had the word "Ischemia" in three places and the final sentence said that I had two episodes in my EKG which (and this is verbatim) "Constitute an ischemic response to exercise." He said this is like a tightening where enough blood is not going through.

    Prior to seeing him, I met with his nurse & physician assistant who took my HR & BP in multiple positions (lying, sitting, and standing.) At one point I had to use the restroom and had to walk down a very long hallway twice. I became so out of breath, I felt as if I could vomit or faint and the secretary had to hold me up and get me water and bring me back to the room. It took about 10 min before I could catch my breath to speak again.

    Dr. C said this was beyond the typical EBV/CFS patient that he sees and even beyond the typical POTS/dysautonomia patient and that, again verbatim b/c I take a lot of notes, "I am in the 25% of sickest patients that he has seen" and he wants to hospitalize me for tests. He said I need to have a CT scan of the heart with contrast dye and that this is the definitive test and we'd get the results back in the same day. He said exercise echos can have both false negatives and false positives (in both the echo and ekg portion) and not definitive especially for the level of shortness of breath and tachycardia that I have every single day.

    If the CT scan finds something bad, I would need some kind of surgery (angioplasty?) to correct it. But if that test is negative, then he can diagnose that I just have horrible POTS/dysautonomia (from CFS or God knows why?) and he would do a tilt table test, an ACTH stimulation test, and other tests in the hospital. He would also try low dose Midodrine and maybe switch beta blockers.

    He truly captured the essence of how much I am suffering when he saw that I was a social worker for 16 yrs in a very demanding job and now I can barely walk across the room. He said, "You are extremely disabled" and it made me cry b/c he got it and understood. Then he told me that his mother and daughter were social workers and he had endless respect for us (which also made me cry) b/c many doctors have zero respect for social workers and I knew he understood how hard I worked and what a loss it has been to lose my entire career.

    So, while I am terrified about going into the hospital for these tests, I am also relieved that he is going to help me. He will facilitate everything and said he understands that I take tiny micro doses of medications (and most of his dysautonomia patients do) so he knows how to handle this. I am still very worried that the hospital could accidentally give me normal doses of meds which would make me very ill. It would not be at the hospital where I used to work which is also a big plus for me. I do not understand why my own cardio did not tell me the true results of my exercise echo and feeling angry about this.

    I e-mailed my CFS specialist, Dr. K, to see if he can coordinate with Dr. C. The two of them are the most thorough doctors I have ever seen and if I can get this done by Sept 30th, it will be covered by my insurance which I am about to lose. Dr. C said that he will call me today or over the weekend as soon as he speaks to my regular cardio. I told him, however, that even if she has a different opinion, I want to proceed b/c I really have no quality of life in my current state. I cannot do activities with my husband & step-daughter outside the home and if he can improve my shortness of breath and tachycardia so I can breathe while walking, I will do whatever it takes and would literally spend my life savings.

    Has anyone had any of these tests? All of them scare me, especially the tilt table, and doing so many so close together in time span (although at least I will be in a hospital if something goes wrong.) My husband was with me at the appt and absolutely 100% felt that I should listen to this doctor and proceed with everything.
     
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  2. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    I have no advice for the tests, and have not had any of those, but how amazing to find doctors who really understand and have compassion and respect.

    Sorry about your insurance situation and i hope that works out! If your exercise test was that bad, hopefully this will facilitate Medicare.

    hugs
     
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  3. AndyPandy

    AndyPandy Making the most of it

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    @Gingergrrl great that you have found a compassionate expert. Hope these tests lead to treatment which improves your health. Sending you hugs.
     
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  4. NK17

    NK17 Senior Member

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    I'm stunned and relieved for you @Gingergrrl at the same time.
    I'm choosing to see the glass half full and hope that you can get this awful cardiac problem fixed.
    I think your husband is right and really hope that you'll get all the necessary tests done before the end of this month.
    It's not going to be a walk in the park (sorry for the pun ;), but you might have a chance at a better life.
     
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  5. Sushi

    Sushi Senior Member Albuquerque

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    I also think this is great. The hospital is the place to do these tests and it is important to get them done. I had a high speed cat scan with dye and have had the TTT. I've also taken midodrine. I haven't had the ACTH stimulation test, but many others here have had it and can tell you about it. Try a google site search to hear others experiences with it.

    As far as the meds you will receive in the hospital, you can find out the proper dose of drugs ahead of time and check before they give them to you.

    This may sound scary but the symptoms you are having must also be scary and this is the first step toward resolving them. So glad that you have a thorough cardiologist.

    Sushi
     
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  6. xchocoholic

    xchocoholic Senior Member

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    Sounds good to me too. I had multiple heart tests run in the hospital too and was fine. That was about 10 years ago so I can't remember which ones. It was a very thorough workup tho. My cardiologist was excellent.

    Good luck. X
     
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  7. Gingergrrl

    Gingergrrl Senior Member

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    @WillowJ Thank you and he did re-affirm my faith that there are compassion and respectful doctors out there and to never give up your search. My insurance through my employer ends Sept 30th (which will cover this Dr, hospital stay & tests.) Or at least it should- although these days I have little faith in insurance. I will have a new insurance through Obamacare (Covered CA) for Oct but it will not be as good of a plan, and no way to check in advance what will be covered, so I hope to do all of this before the transition (especially in case there is a gap in coverage.)

    Thank you @AndyPandy and your ongoing support has meant the world to me, especially as I know you have been feeling so poorly yourself. Thank you so much!

    @NK17 I am trying to see the glass half-full, too, and not let fear of the unknown take over. Honestly, if i could be able to walk and do basic tasks again without the extreme shortness of breath/tachycardia, I would never ask for anything ever again. It is worse than the fatigue, nausea, pain, or any other symptom I have ever had. Thank you also for all your support and I am very blessed to have it.

    @Sushi, thank you and that was very reassuring. I had felt that having all these tests so close together might be too much for my system to recover from but it sounds like you are saying that the hospital is the best place to do them all. I was a bit worried about the level of radiation from the CT angiography and possible allergic reactions from the dye (b/c I have never had it before) but I guess the hospital would know what to do. I also have terrible veins and significant difficulty with IV's.

    The TTT scares me a lot after reading people's horror stories but Dr. C said I might just do the first part of the TTT and not the second part where they inject you with something that speeds up your heart (Isopril?) I might have the name wrong. I really need to understand what info the TTT would add that cannot be obtained from other means. I need to research the ACTH stim test and don't know much about it. I am not afraid of trying Midodrine or other beta blockers and that part is okay. I guess my worst fear is if the CT scan finds something horrible and I need some kind of open heart surgery (after I had just wrapped my mind around the fact that this was all autonomic- per my regular cardio.)

    Also, how would I find out the proper doses of meds in advance? Can you bring your own meds to the hospital for prescriptions you take daily or does the hospital have to administer them? I take such a tiny dose of Armour Thyroid, and am afraid they could give me a wrong dose.

    @xchocoholic Thank you and that was very reassuring, too. Was this before or after you were diagnosed with ME? Do you feel that all of the tests improved your life from a cardiac and/or autonomic perspective? I know our situations might be very different but just curious.
     
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  8. Sushi

    Sushi Senior Member Albuquerque

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    @Gingergrrl You should be able to bring your own meds for things you regularly take--check with your doctor. Also, ask your cardio to write down the doses of any meds that might be part of the testing.

    There are different types of dyes and some are tolerated better than others. Find out from your doctor what they will give you and research it.

    The TTT doesn't have to involve injecting you with meds, though some doctors do this. My autonomic specialist didn't think this was necessary as he wanted to find out want my body did naturally. The TTT is a difficult test though, as it puts your body in the position that stresses it the most. If done well, (I had about 5 different tests within the TTT) it will help diagnose the aspect of the autonomic nervous system that is causing the problems. This helps a great deal with prescribing meds.

    The CAT scan does involve considerable radiation but it is something that you are likely only to do once in your life and is much safer than other types of angiography. I don't remember feeling any side-effects but it was years ago so I don't remember much about it except I know I walked around NYC after the test. :)

    Sushi
     
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  9. AndyPandy

    AndyPandy Making the most of it

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    @Gingergrrl I can only speak from my own experience when I spent a week in an Australian hospital when I was really ill at the end of 2011.

    I wasn't sure how the system operated so I took all my meds and supplements in with me, as well as my diabetes tester. I'm glad I did because they did not have any of the private script meds and had none of the supplements. Their timing of drug administration was haphazard as was their sugar level testing. I just did my own testing and took my own meds and supplements according to my own schedule. I did tell them what I was doing.

    The takeaway lesson for me was always take your meds and tester with you to hospital and administer them yourself if you are well enough ;)

    I also took some healthy foods in with me. :p

    Best wishes my friend :D
     
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  10. Gingergrrl

    Gingergrrl Senior Member

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    @Sushi, Thanks and I have an extensive list of questions I will be asking him before I make a definitive decision re: the hospital and tests. And I will definitely bring all of my own meds and supplements with me. I take specific brands & versions of things that are not interchangeable for me. As far as the TTT, I want to find out from him exactly what new info it could add that could not be obtained in any other way. And he told me we could do the version where nothing is injected to speed up your heart (which is the ONLY way I would consent to it.)

    Lastly, I have never had a CT scan in my entire life so although I know it is a lot of radiation, it is a one time thing. This is the one test I am 100% certain I will do b/c it is the only way to definitely rule out a cardiac issue. I thought the exercise echo had done that but now I see I was wrong. Dr. K at my first appt at OMI said that we could not assume all my symptoms were from CFS until we ruled out another cardiac cause and Dr. C solidified that today. Both of my uncles died of heart disease and one died instantly of a heart attack at age 46 (and I am 43) so I do have that genetic history. If the CT scan is clear, then I can decide which other tests to consent to (and am still very iffy on the TTT.)

    @AndyPandy Thanks and I will definitely be bringing everything with me and the food is something I hadn't thought of b/c I am on a very restricted diet. I will of course tell them all the meds I take (and comply with anything needed to be done for testing that I consent to) but will not take other versions or doses of meds than what I know is safe for me.
     
  11. justy

    justy Donate Advocate Demonstrate

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    Hi Ginger - it's great that you can have this extensive testing done, but I understand it is scary.

    I have had three CAT scans in the past 6 years and they are not hard to undergo at all - although I didn't have the dye. I have also had an ACTH stim test which was also not a difficult test to undergo. They injected me into the muscle (a bit ouch, briefly) and then they took my blood to test a while later. I just sat quitly in a chair and didn't feel strange or anything.

    My test came back normal and the only side effect for me was feeling the calmest I have ever felt for the rest of the day. the next day I was a bit more tired than normal - I don't know if this was the stress of going to the hospital for the morning or the result of the stimulation of the adrenals. But it was absolutely all fine. At leats if you are in the hospital you can be laying down and resting in between tests, and I presume you get a private room (not like the mixed ward system here - no privacy at all!)
     
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  12. zzz

    zzz Senior Member

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    The current generation of CT scanners (which has been around for a while now) produces only a fraction of the radiation that the original CT scanners did - often not much more than a regular X-ray. I've had to have a bunch of these scans, and I'm still here to talk about it. :) Unless you're allergic to the dye, which is rare, these scans don't cause any problems. They're much easier to endure and much faster than MRI scans. As they're basically just an extended X-ray, there are no side effects. You shouldn't have them every month, but a handful in a lifetime is quite safe.
     
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  13. xchocoholic

    xchocoholic Senior Member

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    Hi. I've had me/cfs since 1990 so these tests were done after contracting me/cfs and before eliminating gluten so my body was still under constant stress of gluten antibodies. And I was still ok.

    Imho, my medical team for all this was excellent. I felt they understood my me/cfs and took it into consideration.

    I went into the ER for extreme heart pain that was later dx as gastritis. All tests were normal other than my lbbb and I can't do a treadmill stress test so I had to have the chemical one.

    Assuming the goal was to see if I needed surgery, these tests were productive. But my quality of life was unaffected.

    Oh except that I never again ate the creamy soup I think caused my gastritis. Lol.

    Good luck. X
     
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  14. taniaaust1

    taniaaust1 Senior Member

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    Severe dysautonomia can cause those symptoms you have eg the severe breathlessness, tachycardia etc. Its the dysautonomia with this illness which has me in the wheelchair. Most ME people do have some form of dysautonomia.

    Tilt table testing or a standing poor mans test is the only way to pick up some of the ME/CFS dyautonomia forms as unpleasant as those tests are so you dont have other options there. (apparently if you have a saline IV given immediately after, it can stop crashing from this kind of testing). The CFIDS assoc of America and other places recommends that after TTT (there is stuff online).

    *** Warning.. Beware as there is a common heart issue in ME .. a hole in the heart which opens up at times causing back flow of blood..sorry I cant think right now exactly what its called (I think that can cause breathlessness??) but Dr Cheney says in us it should never be operated on as its a compensatory thing to our issues and possibly helping us to stay alive. There was something online about an ME person who did have it operated on and it was a disaster.

    As far as test results being hidden from you, that commonly happens in ME/CFS due to the discrimation around this illness (people sometimes think those with ME/CFS are psych cases so dont want to give us anything to "play" on and will hide abnormal results unless they think they are very serious).

    Ive been told too before my tests were normal when they werent even in normal ranges etc. I always CHECK my test results now and do not believe something just cause another tells me it was fine. (I had my blood sugar levels at levels low enough to cause unconsciousness in some people and that was withheld from me. I wasnt informed either when my sodium was out of normal range and low).

    best luck at the hospital.. and yeah always take your meds in with you. They may hold onto them and give them to you or they may let you keep them in your room and do your own meds as per normal.
     
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  15. anciendaze

    anciendaze Senior Member

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    There are a number of possibilities this cardiologist has to rule out. I recall one which turned up in a close friend, who didn't get taken seriously until she walked into the ER while having a heart attack. (I drove her there, but she wouldn't stay in the car while I got a wheelchair.)

    This patient had a series of stress tests, and even repeated catheterizations, before reaching a specialist who recognized that a heart muscle fiber growing over a coronary artery was temporarily closing that artery during exercise stress, producing transient ischemia. When she had a bypass operation, the surgeon was simply instructed to "nick that muscle" while he was working inside.

    Not all heart problems show up in ways convenient for diagnosis.
     
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  16. Gingergrrl

    Gingergrrl Senior Member

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    My new cardio, Dr. C. called me this morning and I had stayed up until 3 am typing out a list of questions I had re: the hospitalization and tests. He answered every single one and I am going to post about that in a second post after I respond to all of your wonderful posts from last night. Thank you so much for all the feedback!

    @justy Thank you for sharing your experience with CT scans and the ACTH test. I researched the ACTH on-line and found a few scary things about people getting tachycardia or horrible side effects (like what happened to me with over-methylation.) I asked the Dr and he said he has not had this happen before but that I will be meeting with the endocrinologist at the hospital for this test (and even gave me her name in advance) and she can answer those questions in more detail. He said if I did get tachycardia from it, they would counteract it with IV beta blockers which would not effect the test results.

    @zzz I asked him about this, too, and the dye is called "iodinated constrast." He said unless I am allergic to shell fish or iodine (which I am not) then I should be okay with the dye. He said it is not a nuclear dye and does not speed up your HR (which were my concerns.) This would be the very first test we do which will then help coordinate the rest of the sequence.

    @anciendaze Wow, I am sorry about your friend and glad you were able to get her to the ER! I agree that not all heart problems show up in convenient ways for diagnosis and am so glad I found my new cardiologist. I had gone to the ER twice this year due to extreme shortness of breath and both times they were horribly condescending and useless. So when my new Dr said he wanted to admit me to the hospital and that my current disability was in the worst 25% of patients he has seen (and he is the director of cardiology at his hospital) although it scared the crap out of me, it was very validating.

    @taniaaust1 Thank you for the good wishes and I have confirmation from the Dr that I can and should bring all my meds and supplements with me to the hospital.

    In your case (if you are comfortable sharing) how did they determine that it was dysautonomia vs. cardiac cause that led to using a wheelchair? Thank you for the info re: TTT and he said I can have saline IV after and that saline IV's will be good for me.

    Re: the discrimination issue with PWME, I don't feel this was the issue with my old cardiologist in my case. I have worked with her for a while and she has been very supportive and usually does get me copies of my test results. I am just perplexed why she felt the exercise echo was normal when it clearly showed ischemia. My feeling now is that she is much more limited in her skill and knowledge level which is why she referred me to this new cardio who knows dysautonomia (which she admitted she really did not.) I think she may have viewed my results as a "false positive" b/c the echo portion was normal but I am very curious to see how she explains this.
     
    Last edited: Sep 13, 2014
  17. Gingergrrl

    Gingergrrl Senior Member

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    And now for my update... I am going to post all details in the hope that this will help another PWME down the line who is in my shoes.

    Dr. C called me this morning and said that he had not yet reached my cardio but is sure he will on Mon. He said that he plans to admit me to the hospital on Tues or Weds and will give me a day notice to pack, etc. He knows my insurance situation and even if I am in the hospital for a while, it will all be done before Sept 30th.

    He said I can bring all my meds & supplements and either take them myself or hospital will administer (but I will NOT have to use other meds just b/c they are on the hospital formulary- which had been my fear.)

    As far as CT scan, he explained the procedure and type of dye used and I am comfortable with this test and glad it is the starting point. He said the results of this test will determine the sequence of other tests and that he will go as slow as needed and that with each test, I give consent- nothing is forced on me.

    He said probably the TTT will be next and the reason he wants this info is to see my BP response which would help him determine if Midodrine is right for me and what dose. He said he would start at an extremely low dose of Midodrine and that he will only do "Phase one" of the TTT which does not involve injecting anything into my heart. He said that is "Phase two" of TTT which I will NOT have and he will be in the room for the test. This reassured me and I will consent to it (which I would not have if something was going to be injected.)

    As far as the ACTH stim test, I will be consulting with an Endo in the hospital and he feels this test is needed to definitively show if I have adrenal dysfunction (which can be treated.) I will most likely consent to this test.

    Lastly, he said he had been thinking about my case last night and my worsening shortness of breath and also wants to do some tests for my lungs. He said there is something called a "ventilation perfusion scan" which can check for blood clots and if any area of my lungs is not getting perfused. This is a nuclear test (which scares me b/c more radiation and another substance for my body to have to cope with.) I am going to research it more before consenting (and this also depends what the initial heart test and other blood work find.)

    Has anyone ever had that test? I think @Sushi said you had a test involving some kind of nuclear dye (I will delete this if I am wrong) but if so, what was your experience?

    He told me not to get overwhelmed by all the info and I told him that I am actually the kind of person who craves having as much info as possible and when I know what to expect, I am more prepared, less afraid and actually less overwhelmed. He understood and I felt like he took a special interest in my case b/c it is so weird and complex (so it is a challenge to him) and also b/c he has several social workers in his family and I am a social worker and he felt a connection on that issue. In any case, I have lucked out beyond belief with him and Dr. K. I am scared but feel this is the right course of action.
     
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  18. OverTheHills

    OverTheHills

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    :hug: OTH
     
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  19. Sushi

    Sushi Senior Member Albuquerque

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    I had a cardiac test where they injected thallium:
    I actually have had two of them. I was assured that the thallium would be out of my body in 2 days but 10 years later I tested extremely high in thallium. :(

    @taniaaust1 mentioned a PFO. I have one, as do many of us. It is not a big deal and only in rare cases needs treatment.
    I was told that these PFOs can sometimes be open and sometimes closed according the the ratios of pressures in the heart chambers.

    Sushi
     
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  20. Gingergrrl

    Gingergrrl Senior Member

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    @Sushi, thanks for the info and this is actually a different test than I will be having. Although it scares me that you are still testing high for thallium ten years after the test!!! :jaw-drop: and :eek:.

    My heart test is a CT scan with dye but no nuclear material. But I researched the lung test (if we do it) and according to which website you read, it involves either "radioactive albumin" "radioactive isotope" or "radioactive gas." I am not sure what the differences are and all sound awful. In my case, it would be to check the lungs, not heart, but I guess the process is similar. Do you know if these substances are the same as thallium or different?

    As far as the PFO, to the best of my knowledge and many echocardiograms, I do not have this issue.
     

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