If this is your first visit, be sure to check out the FAQ in HCMA Announcements. You may have to register before you can post: click the register link above to proceed. To start viewing messages, select the forum that you want to visit from the selection below. Your Participation in this message board is strictly voluntary. Information and comments on the message board do not necessarily reflect the feelings, opinions, or positions of the Hypertrophic Cardiomyopathy Association. At no time should participants to this board substitute information within for individual medical advice. The Hypertrophic Cardiomyopathy Association shall not be liable for any information provided herein. All participants in this board should conduct themselves in a professional and respectful manner. Failure to do so will result in suspension or termination. The moderators of the message board working with the HCMA will be responsible for notifying participants if they have violated the rules of conduct for the board. Moderators or HCMA staff may edit any post to ensure it conforms with the rules of the board or may delete it. This community is welcoming to all those with HCM we ask that you remember each user comes to the board with information and a point of view that may differ from that which you hold, respect is critical, please post respectfully. Thank you

Announcement

Collapse
No announcement yet.

Please read!

Collapse

About the Author

Collapse

Party of 5 Find out more about Party of 5
X
  • Filter
  • Time
  • Show
Clear All
new posts

  • Please read!

    Hello everyone, we are new here.

    On Friday July 14, 2017, my 41 yr old husband was just DX with HCM. About a year & 1/2 ago he went to urgent care complaining about chest pain. He got an EKG, results came up abnormal. Nuclear stress test was preformed, also abnormal. We finally got a referral to see the cardiologist.

    Upon our appointment the cardiologist, pretty much dismissed our concerns, very nonchalant, saying that everything was fine. That he just had a blocked arteries on the left hand side of his heart. To live our lives as if he has heart disease. Then said " I hope to never see you again" Dr.Paney did not want to do anymore testing, that if he got a heart cath that there would be at risk of heart attack or stroke. That she felt that there was no need for it. Being new to all this we foolishly went with her advice.

    A year and a half later, (Tuesday) my husband found himself at urgent care, for the same symptoms. His blood pressure was high. They did an EKG. Totally off the charts compared to the one preformed 1 year & 1/2 a go. They gave him nitro and transferred him to the hospital thinking that he had suffered a heart attack. Once at the hospital they gave him nitro, once again. They did another EKG at the hospital, due to the results being off the charts, I guess they wanted to double check. They did blood work, X-ray, and ultrasound of his heart. The next day the cardiologist at the hospital recommended a heart cath. He was transferred to another hospital that had a cath lab. This entrie time we where under the impression that he had blocked arteries and probably needed a stent. To our surprise my husband was DX with HCM. The doctor who preformed the cath came out to talk to us. She mentioned that he was at high risk of having cardiac arrest. That he was at risk of a heart attack or stroke. That he is not doing well. Said that his heart was working at 30% efficiency, due to the left side of his heart being too thick. No plaque, no blockage.

    As as the doctor repeated herself, that his heart was only working at 30% due to the abnormal thickness, we immediately felt as if it were a death sentence. Husband was prescribed:

    •Low dosage of aspirin 1x a day

    •Lisinopril 5mg generic for Prinivil; Zestril 1x a day

    •Carvedilol 6.25mg generic for Coreg 2x a day

    •Furosemide 20mg generic for Lasix 1x a day

    • K-Tab 10 Meq Extended Release 1x a day


    They said to follow up with the cardiologist in 4 weeks. I called to make an appointment and was told that he would see Dr.Pandey. I do not want my husband to see this doctor, switching Monday. I feel that if he would had had the heart cath then, we wouldn't be faced with thickening of the septum and would had treated a lot sooner. Pure negligence on her behalf. The stress test already showed abnormalities. She choose to brush it off. She didn't even open his medical file. She just basically showed us that she did not care about my husbands well being.

    We live in Southern California and have Kaiser HMO as our insurance. We have 3 boys under 10, one boy is special needs. I cannot imagine my life without my husband. I want to do everything possible to help him. The medication that my husband is taking, is it common medicine for Hypertrophic cardiomyopathy? Where do we go from here?
    I am thankful to have found 4hcm.org. Please oh wise ones help us.

    Thank you so much for your advice.
    Sincerely,
    Party of 5

  • #2
    Living in Southern California, I recommend that you contact UCLA Medical Center, which is designated as HCM Center of Excellence. Be persistent that you need an appointment this week.

    ADDR: 757 Westwood Plaza Los Angeles, CA 90095 United States Phone: (310) 825-8816

    Eugene C. Depasquale, MD- Program Director
    Eric Vilain MD, PhD.- Scheduling

    Comment


    • #3
      Being in Kaiser HMO you are going to need a sympathetic cardiologist that will make a referral to an HCM Center Of Excellence . There is a list of COEs on this website. This may be difficult but use the leverage that your husband was already mis diagnosed once, which allowed his heart to deteriorate.
      If your husband was truly determined to be at risk for sudden cardiac arrest, they should have discussed putting in an automatic defibrillator/pacemaker. They also should have discussed genetic testing.The location of the thickness is important in case he is a candidate for septal reduction. An MRI of the heart also is important, as well as a hoelter monitor. ...... Read up about HCM and push hard for that referral. You may want to call the HCMA office and have a phone consultation with Lisa, the HCMA founder....she can help you figure out next steps.
      I belong to Kaiser HMO Colorado....I have a very good cardiologist.... BUT ....his experience over 20 years was limited to a few mild cases of HCM that responded well to low level treatment with medication. When my condition became intractable to medication....he had to start studying up.....When I needed surgery....I was sent to the local hospital which was inexperienced and I had to have the surgery redone at COE Mayo Clinic. That cardiologist championed my referral to a COE after the local surgery failed.
      Most cardiologists are well versed in CAD and heart failure but not HCM...and most do not realize the deficits in their knowledge. Your husbands 30% Ejection Fraction is compatible with a " heart failure" type diagnosis....But all heart failure is not the same...I cannot emphasize how important a second opinion at an HCM COE could be.
      Last edited by JillC; 07-17-2017, 01:21 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


      • #4
        Thanks for the feedback everyone.


        Jill, I totally agree with you. He definitely needs tbe seen by someone with more experience. Here's where I'm confused, discharge instructions indicate a diagnosis of HDM. Cardiologist did not say if it was hereditary, that he does not know if it is due to genes or mentioned something a about possibly being brought on due to a virus. Which is it and how do they test for that?

        We are basically in limbo. I feel as if we are not getting answers. Basically feel like we are going nowhere. They are making it seem like a "big deal" yet nothinhg is getting done. Not sure if that makes sense.

        Comment


        • #5
          If the diagnosis is truly Hypertrophic Cardiomyopathy HCM ...... It is a genetic disorder that can be caused by any number of gene malfunctions....**Many of which have not even been identified** I have HCM but my genetic test was negative for the genes identified so far for the disorder. True HCM is not caused by a virus....Maybe they are calling it HCM because they don't know what to call it? If you would like to read accurate info on HCM I would encourage you to buy the book available on this website or Amazon .... If you go on the web or utube .... Read view .... info from Mayo Clinic or Cleveland Clinic on HCM. If you like more technical stuff ( I do!) Read the 2011 ACCF/AHA guidelines for diagnosis and treatment of HCM. This document outlines the standards used by COEs .....
          Your husbands echo cardiogram is the first diagnostic tool....A cardiac cath is not necessary for diagnosis but since he had one it would give confirmation....EKGs are not as helpful in diagnosis but play a role in treatment especially if he has arrhythmias ....thus the need for a 3 day or one week ongoing monitor. A cardiac MRI will show how much scarring he has as well as thickness and structure.....Scarring is part of the evaluation concerning his risk for sudden cardiac arrest.
          In a lot of instances, I'm sorry to say, physicians do not step up and say this is out of my league. As I said, you may need to stand up and say that you have done a lot of research and that your husband needs to be seen at a Center of Excellence and give them the name of where you want him evaluated.
          The COE, once they do further testing and set up a treatment plan......can then work with his local cardiologist.
          If you go to the website HCMbeat.com try getting in touch with Cynthia Waldman......She lives in LA and I think she still runs an HCM support group in the area.
          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
            I agree with Jill's advice. I'd just add that you'd do well to call the HCMA and ask them to help you get oriented: what do you need to know, how do you handle your uncertainty, etc.

            Gordon
            Myectomy on Feb. 5, 2007.

            Comment


            • #7
              Please follow the link: https://hcmcare.com/

              Comment


              • #8
                Greetings everyone,

                My husband had his appointment with the cardiologist today. I voiced my concerns on HCM. Once again we saw Dr. Pandey, well in order for us to see another cardiologist we have to wait about 5 weeks. Figured we'd give it a shot. Anyhow, I voiced my concerns in regards to HCM, since that was the diagnosis that we received when he was discharged from the hospital. She said "who told you he had HCM?" I told her that two cardiologist had mentioned such. Dr. Pandey said that my husband has "nonischemic dilated cardiomyopathy", according to her it's not HCM. I told her, then why would they diagnose my husband with HCM. I noticed her body language and facial expression, instantly change. Flippantly said "you are welcome to see another cardiologist!" I told her, we will be seeking a second opinion. Once at the pharmacy, I called COE, I have already called COE UCLA. I asked what was the process to get a referral. Keeping my fingers crossed that his general physician will be able to expedite.

                With that said she added:

                •Carvedilol 6.25mg generic for Coreg 2x a day. Two tabs 2x a day. Total of 4 s. Vs 1 tab 2x a day.

                Added

                •Spirolactone 25mg 1X a day

                Removed

                •K-tab

                We don't even know what this new diagnosis is. Can someone please share knowledge? Link? This entire situation is getting more complicated to comprehend.

                Not sure if legible, I took a picture of her screen. Here is the final results:
                Last edited by Party of 5; 07-20-2017, 12:39 AM.

                Comment


                • #9
                  It won't allow me to upload picture. Said I'm not authorized

                  Comment


                  • #10
                    Here is a link to the SHARE Registry which is a web site for people with Cardiomyopathy: A CARDIOMYOPATHY REGISTRY

                    The goal of the Sarcomeric Human Cardiomyopathy Registry (SHaRe), a first-of- its-kind effort, is to advance the understanding of hypertrophic cardiomyopathy (HCM) and dilated cardiomyopathy (DCM), two types of heritable heart disease affecting nearly 2.4 million adults and children in the U.S. and Europe.

                    https://theshareregistry.org/

                    I am a member. They have conferences for people with the diagnosis. There is one coming up in September, I do believe.

                    Comment


                    • #11
                      Please call the HCMA office and ask them for help.

                      Gordon
                      Myectomy on Feb. 5, 2007.

                      Comment


                      • #12
                        Originally posted by Party of 5 View Post
                        Greetings everyone,

                        My husband had his appointment with the cardiologist today. I voiced my concerns on HCM. Once again we saw Dr. Pandey, well in order for us to see another cardiologist we have to wait about 5 weeks. Figured we'd give it a shot. Anyhow, I voiced my concerns in regards to HCM, since that was the diagnosis that we received when he was discharged from the hospital. She said "who told you he had HCM?" I told her that two cardiologist had mentioned such. Dr. Pandey said that my husband has "nonischemic dilated cardiomyopathy", according to her it's not HCM. I told her, then why would they diagnose my husband with HCM. I noticed her body language and facial expression, instantly change. Flippantly said "you are welcome to see another cardiologist!" I told her, we will be seeking a second opinion. Once at the pharmacy, I called COE, I have already called COE UCLA. I asked what was the process to get a referral. Keeping my fingers crossed that his general physician will be able to expedite.

                        With that said she added:

                        •Carvedilol 6.25mg generic for Coreg 2x a day. Two tabs 2x a day. Total of 4 s. Vs 1 tab 2x a day.

                        Added

                        •Spirolactone 25mg 1X a day

                        Removed

                        •K-tab

                        We don't even know what this new diagnosis is. Can someone please share knowledge? Link? This entire situation is getting more complicated to comprehend.

                        Not sure if legible, I took a picture of her screen. Here is the final results:
                        I know it is overwhelming when first learning about Cardiomyopathy. Try to relax and not let fear cloud your judgement. You are on a journey but there are many knowledgeable people to help you along the way. The knowledge of this diseases is growing tremendously.

                        I am including another link to help you research and learn more. It is for the parent company of the SHARE Registry, MyoKardia. They are one of the leading research companies.

                        http://myokardia.com/

                        Comment


                        • #13
                          Yes call HCMA office....They can help you set priorities and formulate questions and find resources. The truth is HCM there are a small percentage of cases that deteriorate into dilated Cardiomyopathy....There are treatment protocols for both and a knowledgeable secure cardiologist will not get huffy about your questions....You did very well! You stood your ground! Patient and family well being must always come before the doctors ego...... Take a deep breath and take one step at a time.... Mhochkins is right....Fear can be your worst enemy. Your answers are out there.
                          Last edited by JillC; 07-21-2017, 12:41 AM.
                          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

                          Today's Birthdays

                          Collapse

                          Working...
                          X