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Shortness of Breath and strategies needed !

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meggy8868 retired teacher; had my first echo which indicated HCM in 1999 but was not told I had the condition. Find out more about meggy8868
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  • Shortness of Breath and strategies needed !

    Hi The last time I wrote was a concern about ablation because of AFIB.Feb 2015 after a visit to Heart Institute and subsequent dehydration from appts too close together along with stress echo and no water, I ended up in an ER on the way home from Minneapolis. The treatment was so despicable even though I was carrying a letter from Cardiologist with instructions for medication. Anyway, I declared "I am not going to have that again. And I'm never going to an ER again." I had it one more time March 1015 and rode it out at home and decided that would be the course of action. No more AFIB until Last Saturday Nov. 12th. 2017. I was caught unprepared but managed to take 50 mg of atenolol and drink a bottle of Power Aid. I was unable to function with dizzyness, lights flashing in front of my eyes. The AFIB resolved in about 38 minutes but I had difficulty moving. IN fact could not walk or even crawl and was in terrible distress. After six hours of lying there, I was finally able to crawl to the door o unlock and then to bed where I took 2mg of zolpidem for sleep which relaxed the crashing in my chest. Has anyone every had such incapacitation? The last year and half I have been having more shortness of breath and in fact any hurry or walk gets compromised by SOB. I never had such SOB in the beginning, but now it is always. Since I am 76 and at the last exam passed the stress echo and doc saying he did not expect my septum to grow( 2.4) Surgery was not advised. I can see no reason to continue to doctor but I do need strategies for dealing with spells when these attacks come.
    HOCM diagnosed Mayo Clinic Aug. 2010

    25 mg of atenolol.

  • #2
    Are you being followed by an HCM Center of Excellence? What you are describing sounds like a case of HCM ...that is not on a maximally beneficial treatment plan. There is always room for second opinions .... even among experts. There are many ways to treat afib judiciously, there are many ways to treat obstruction if it is there ( 2.4 cm septum is quite thick), I just spoke with a woman who had a myectomy at the age of 78 and has a new lease on life. There are many medications to help with chest pain depending on its source of origin......So it all depends on where you are getting your advice and your treatment. I am sorry you had a bad experience in Minneapolis......I am not familiar with the heart institute but am familiar with Mayo Clinic Rochester. These " episodes" sound devastating. If it were me I would take a deep breath, forgive the past and give another try at getting a more helpful plan of action from an HCM Center of Excellence. That is the way I see helping you get through the next episode.
    After years of symptoms:
    Officially Diagnosed HOCM 2006
    Myectomy 3/11/13 at non-COE
    Extended Myectomy 7/23/14
    At Mayo with Dr. Joseph Dearani

    Comment


    • #3
      Hi Meggy,
      So sorry you're going through this! It's been a long time, and I can't recall many details about your situation (though I do remember that you live a long way from Mpls - in N Dakota?). But it does sound as though Jill hit the nail on the head: why not talk with your HCM specialist (I seem to remember you having one) and see if they'd like to change your treatment or have you come in for some tests. This experience sounds miserable, and you shouldn't have to go through that.

      Gordon
      Myectomy on Feb. 5, 2007.

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      • #4
        I had been going to Mayo, but had a mildly negative experience there and decided to follow my old Mayo doc, Dr. Sorajja and see Dr. Maron once again who is at Abbot Hospital in Mlps. especially because the local cardiologist urged me to go there. February, 2015. It turns out that the scheduling was very tight. I had a stress echo but could have no food or water prior. I passed the stress echo with flying colors but they only gave me a Dixie cup of water afterwards and then on to the next and to the next appoint. No water, no lunch break.

        It is now 3pm, waiting to see Dr Sorajja (Maron was snowed in in Boston). I am sitting in a cold room in a gown for two hours. I was so exhausted I decided to go back to the hotel, where I ran smack into Sorajja in the hall. I was ushered back in the room which was filling with people scrambling around and I couldn't have a decent conversation with him. Nurse Ratched (Maron's officious nurse) was there dominating everything. Sorajja said I didn't need surgery because the septum remained stable and the stress was excellent, but suggested perhaps an ablation ( I didn't know what that was). I had gone an entire night and most of a day without food or water.

        The next day on the ride home about 150 miles away went into AFB of the most severe kind. My son drove me to the ER where they refused to give me water and I was begging for it and anxiety upon AFIB upon anxiety . I begged them to call the clinic where I had just been. Surely they would give the ok to hydrate me. The NP in the ER finally called the Abbot reaching Nurse Ratched. I talked to her and she told me to "snap out of it." Then told the male NP that I was non-compliant because I had refused surgery and and "wanted to take vitamin e" (I merely asked about it? some kind of a new sin? ). And the ER NP threw all her nastiness back in my face. I had now been in the ER for 40 minutes in acute distress, crying and making those AFIB noises, but they finally gave me a drink and an IV still treating me as if I were mentally ill. Nurse Ratched having compounded the scene. I always carry a letter with me for ER instructions from the local cardiologist which primarily said, "No Cardizem. Give instead 10 mg of metoprolol by IV. It was on a Clinic letter head electronically signed. Gasp! They accused me of writing the letter myself. !!! I am not only mentally ill but clever and devious! After 4 hours I was in good enough rhythm to leave, but scarred. Permanently!

        When home and I got the notes back, Sorajja had written that I was confused and was not able to tell about prior incidents. In truth I had all events written out in full description with dates, but had handed the paper over to Nurse Ratched earlier that day. She had not entered the data nor had she given the information to him. No one in that 3x5 room let me talk.

        It was a comedy of errors and compounded by the most heinous ER experience of my life. That was February 2015 and I never had another episode of AFIB until last Saturday. Maybe it's about forgiveness, but maybe it's about fear of doctors and their arrogance and fear of ER's and fear that all they have is their charts and numbers and absolutely care nothing about people. They seem to make a human connection only if the arrows on the tests line up to some kind of already established symptom. God forbid if your symptoms happen to be an anomaly. If so, the experience is not validated. I wasn't going tell about this because I shouldn't burn my bridges, but I don't really care!

        Prior to the Minneapolis incident , I had gone to Mayo. 2013. Eager to see the doctor, Dr. Ommen, who I had heard so many great things about. He showed up around 5pm, an hour late, obviously hadn't looked over the tests. Okay, that can happen. Not a big deal. They must be cut tons of slack as they deal with unknowns and emergencies. I get that. However, there was no eye contact with me at all, just eager to be on his way with the lady he was with. But what happened next? He walked out of the room, closed the door behind him, leaving me there. Seconds later lights were turned out. I was in pitch blackness, trying to crawl around to find my way out of that room and off the 6th floor. Sixth floor was plunged in darkness.. Luckily someone came about 5 minutes later, turned on a light and I was able to escape with my mind still intact. The next day I told the receptionist that I was going home, no point of hanging around.

        She rescheduled Ommen and he was on good, pleasant behavior with some helpful tips. I get the impression that young doctors have little respect for old people, automatically thinking our IQ's are about 50 points lower. They may have facts and figures, but do they validate what one is going through unless there is an established stat? Although willing to continue with Ommen, hadn't been able to because one time he rescheduled and there was a communications problem and the second time because I had car trouble in January, no heater working, so driving on Sunday to make it there Monday, no mechanics to see to it, I turned around and went home. So probably destroyed that potential relationship anyway.

        I am riding it out by myself.

        I was just wondering if anyone else has ever had trouble moving due to an episode and if so what do you all think is the cause? I have SOB all the time ( a new wrinkle,)and I have no one to drive me to surgeries or take care of me afterwards. So, I really don't care to have surgery. The stress of planning would be too hard on me at this stage. I am on the maximum dose of beta--25 mg. I have incidents of plunging BP . I did see the local cardiologist last Friday. He just said needed to be reevaluated and that I wasn't in AFIB. Oh yah, really? I kinda know when I am as it feels like ****.

        What else can be done except some strategies?. And what is it like to die with this? If in AFIB are the ventricles going crazy too? Just some questions and I was hoping I would benefit from someone's experience. I have learned my lesson about staying hydrated. Am I missing any key ingredient except to be seen by a center of excellence? Has SOB ever incapacitated anyone to the point of not just slowing down, but stopping?

        Jill, I know this sounds bitter. But I needed to unburden. Thanks anyone for listening and for any kind of tidbit. I will listen and weigh carefully. Meggy
        HOCM diagnosed Mayo Clinic Aug. 2010

        25 mg of atenolol.

        Comment


        • #5
          Hi Meggy...
          I now remember parts of your story.... we had talked about the negative first experience at Mayo....and you giving it another try....but it was the middle of winter etc
          You don't sound bitter, you sound frustrated and tired and wondering if this is IT....do I just stay home and manage symptoms and die?....and THAT is a pretty awful and lonely place to be....and it is Okay to share.
          First of all, let me validate that SOB and being unable to move can definitely be true...It takes oxygen to the brain and the muscles to get you up and going, depending on how erratic your afib is and the response of your ventricles to the rapid atrial rate, your cardiac output to brain and body can be greatly diminished.....also the feeling of anxiety is a hormonal response to hypoxemia that does not mean you have an anxiety disorder or are mentally ill!.....I, as a nurse, am embarassed down to my core when I hear of a nurse treating a patient the way you say you were treated. I am sorry.
          I am a patient of Dr. Ommen and I am surprised at what went on....but as you say, sometimes we are just in the wrong place on the wrong day.....For reasons unknown to us. I too live alone and went to Mayo for surgery without anyone, but my daughter insisted on showing up for the procedure....afterwards she flew home with me but I went directly to my own apartment and stayed by myself.
          All that being said....Where does that leave you? 1) Sitting home, in fear waiting for the next horrible episode and wondering if it will kill you? 2) Or leaving the past behind, deciding you can be better and live the rest of your life more happy and comfortable if you have a better medical plan?
          Afib can come and go without you knowing it..... it isn't always so symptomatic. Are you on anticoagulation to prevent a stroke? The ablation they spoke of could be for the afib where they do a cardiac catheterization and freeze the spots where the afib is coming from.
          The biggest question in my mind is the origin of your SOB...Is it Obstruction, is it Diastolic dysfunction? or systolic failure? This can only be determined with testing and clinical exam. Each of these 3 would be treated in a different way. I would be glad to personally email Dr. Ommen and let him know your fears and the issues you have run across if you decide to return to Mayo. I communicate with him often and have not found him prejudiced against women of age (I am 68). Feel free to PM me Meggy.
          Jill C.
          Last edited by JillC; 11-20-2017, 03:50 PM.
          After years of symptoms:
          Officially Diagnosed HOCM 2006
          Myectomy 3/11/13 at non-COE
          Extended Myectomy 7/23/14
          At Mayo with Dr. Joseph Dearani

          Comment


          • #6
            Hi: By experimentation, I have found that the 25 mg of atenolol was the culprit and plunging my BP and making me SOB I took it down to 7mg last night and had a normal day today. Either it is a batch of bad drugs or I no longer should be on this medication. Good luck Wastive! Hope things work out. I still have an upcoming echo.
            HOCM diagnosed Mayo Clinic Aug. 2010

            25 mg of atenolol.

            Comment


            • #7
              Wastive Welcome....
              Maybe take some time to introduce yourself and your HCM story to the forum..there is a special section to post an introduction....This forum is a bit quiet ....You might get more of the support you are looking for through the HCMA Facebook group .....it is very active. Also you can call the HCMA office to sort through your issues and get advice. Posting your questions and feelings on the forum allows you to receive multiple answers and opinions. But certainly you can PM.
              After years of symptoms:
              Officially Diagnosed HOCM 2006
              Myectomy 3/11/13 at non-COE
              Extended Myectomy 7/23/14
              At Mayo with Dr. Joseph Dearani

              Comment

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