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Pulmonary Edema

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Gail1 Diagnoised with HCM this week by my cardiologist and referred to Mayo, Dr Nirashmur(sp?) I am 70 yrs old and have been tested for IHSS/HCM for the past 30 yrs and tested negative..My mother was diagnosed with IHSS over 30 yrs ago ..she died of lung cancer at the age of 79 in 1999..I am the oldest of her 10 children and the only one with symthoms..at this stage I do not know the specifics of my diesase...awaiting call from Mayo to schedule an appt to further test.Thank you for this forum..I have spent days reading these posts and have gained so much info !! Find out more about Gail1
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  • Pulmonary Edema

    I was diagnosed at 70 Yrs old at Mayo Clinic with a mild case of HOCM and mitral valve regurgitation and placed on Atenenol .
    It’s been 5 Yrs and I am currently having the MRI, ECHO and stress test repeated and compared to my Mayo results in order to determine if my condition has worsened. It appears my condition has gotten worse and I was just diagnosed with pulmonary edema. The next test recommended is an angiogram to determine the condition of my valves and to possibly try me on Disopyramide (Norpace) prior to recommending mitralvalve repair and alcohol ablation. Does the fact that I now have PEdema mean my condition has progressed so that surgery may be my only option?

  • #2
    Hi Gail....First of all the fact you are already hooked up with Mayo ....You were seen by one of the best Centers in the World for your condition....I could not tell if you are having your current testing done at Mayo but I would hope so. If the testiing is being done elsewhere, if it were me, I would have the doctors that saw you at Mayo originally look at the results and give their recommendations.
    Pulmonary edema basically means fluid in your lungs ..... treatment is based on the cause...they need to find out if the cause is your heart becoming stiffer, your heart becoming dilated and boggy, or your Mitral valve being incompetent causing fluid back up....or it could be a combination of more than one of these. None of these things in and of themselves say " you must have surgery" ..... Pulmonary edema can often be treated with just changes in medication....adding a diuretic and changing meds to support either a stiffer heart or a boggy heart. If stiffness or obstruction is the main problem, a Disopyramide trial would be useful. The main factor in choosing to go from medication to an intervention such as ASA or myectomy, or valve repair is the severity of your symptoms and your quality of life at this time.
    The most important thing is that you are getting recommendations from an HCM center of Excellence so you are not hurried into a procedure by a Cardiologist who may mean well but has limited HCM training and experience.
    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

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    • #3
      Thank you Jill for your response. Thankfully Mayo offered to provide a second opinion, the cd’s from my recent test/CD’s are being sent from my Nashville TN HCM specialist to Mayo. The angiogram is scheduled for next Monday the 16th, He states he needs to see more than the test have shown prior to putting me on Norpace (or the drug that means the same as Norpace) I don’t really know the questions I need to ask. The pulmonary edema has thrown me off since I associate that with heart disease. For the past 5 Yrs I have been seeing a cardiologist in Memphis and have had an Echo each year and been told , all is good, no problem!! Then I changed to a new primary care doctor in late Dec for a yearly physical and she showed an adnormal EKG. At the same time I received a letter from my former cardiologist that he had retired the middle of Dec 2017 . And I then decided to repeat my test from 5 Yrs ago . Unfortunately my insurance no longer covers Mayo. There is an HCM Clinic in Nashville TN and I travel there for testing. It now appears I am not “just fine”. I am grateful my Mayo doctor offered to look at my test (Dr Rick Nishimira).i should know more after the angiogram. If I’m able to take the Norpace, I hope it will help until I can switch insurance in Dec 2018 and then go back to Mayo.
      P.S how do I know when I receive a reply to my comment other than checking the site .. somehow I thought I would get an email ?? I just happened to check the site tonite and saw your message ?? Thank you again Jill!!

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      • #4
        Hi Gail.... I am not sure about the notification process on this forum..... you might try calling the HCMA office. I know if I get sent a private message I am notified by email.....but not necessarily on other occasions.
        I am glad your tests are going to Mayo for a second opinion..... One thing I am not hearing from you are what your symptoms are and if/how they have progressed in the past 5 yrs. No matter what numbers appear in your tests.... the numbers are not treated....it is the effects, the symptoms, that guide the doctors. Each medication and intervention has risks and they need to be able to evaluate the risk/ benefit ratio......that is probably why your doctor said .. he'd need to see a lot more before he would consider a Norpace ( Disopyramide) trial. Also, if obstruction is not the primary reason for your pulmonary edema, Norpace won't help.
        You may want to call the HCMA office and get a phone consult with Lisa Salberg to help you know what kinds of questions to ask.
        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

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        • #5
          The site doesn't send notifications that someone has responded to your post.

          A call to the HCMA does sound like a good idea!

          Gordon
          Myectomy on Feb. 5, 2007.

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          • #6
            Update: I had my angiogram Monday, no blockages and no plaque. The doctor also advised the pulmonary edema was minimal and not a concern to him. My only symptoms with HCM are shortness of breath and occasional dizziness after sitting and getting up ( driving to store, walking across parking lot and as I walk in to store have to stop for a split ace one to avoid what feels like passing out ..truly just a few seconds of stopping and then I can proceed. Results of angiogram cleared mecto try NorpaceCR. Ibwas admitted for 3days and given 250mg twice a day , wore s heart monitor, had an ekg 2hrs after each dosage, had no side effects except dry mouth and I use Biotine Mouth wash when needed. On Thursday morning I had a TEE ( Transesophageal Echocardiogram) , doctor stated that the gradient of the mitral valve went from 190 to 90 with Norpace and increased my dosage to 600 mg a day as opposed to 500mg. I go back May 8 for another echo to check progress. I am home now and have had no additional side effects and not experienced any shortness of breath or dizziness!! . Optimistic !!

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