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Help Need Support


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kathyn2 Find out more about kathyn2
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  • Help Need Support

    I just came home from the hospital tonite and had a horrible experience. They wanted to keep me there (they had admitted me) but I left against their advice. I have been quite symptomatic since my doctor started me on a blood pressure medication. Candesartan which is an angiotensin II receptor blocker. I have had periods of pressure in my chest, a total aversion to any exertion walking etc., palpitations, irregular heart beat etc. I haven't taken the drug for 2 days now and this afternoon I am feeling better.

    Anyway, while in the ER they wanted to give me a nitro patch and I remember reading here that they were contraindicated so I told them no. I told them they were not good for HCM. So they didn't give it to me. I feel like when you go to the hospital that you are at their mercy and that you had better know your stuff. Is it true that you shouldn't have nitro? I felt like no one knows about this disease. I felt so bad and so alone and didn't trust anyone there. I was not having a heart attack. No one would believe me when I told them the pressure in the chest, palpitations etc were symptoms of HOCM. They also mentioned a heart catherization but I told the doctor I was allergic to the dye and didn't want that test. I felt like they wanted to put me thru the wringer of tests that were detrimental for a disease that I already know is causing me these symptoms.

    The doctor on call didn't seem to think that hcm causes these symptoms. I felt at such a loss. Doesn't the medical profession think that hcm has symptoms? These symptoms? I got the impression that they didn't think hcm was a very serious illness and that it didn't have symptoms! I am very upset right now. No one told me when I would be able to leave the hospital, what their intentions were etc so I left against their wishes. I have an 82 year old mother to tend to and a bunch of animals. My heart settled down and didn't appear to have any irregularites for several hours before I left. Has anyone else here experienced this? I am suppose to see Dr. Shah on Wed but I don't know if I will get there as there is a big rain storm coming in and I don't care to drive in that so far away. I may have to postpone my visit. I don't want to have to submit to any of these EP studies etc until I have seen him.

    Does anyone else have stories like this? They were also trying to feed me a cardiac diet there that was awful. LOL all sorts of chemicals, sacchrine, skim milk etc that I don't eat or use! And lots of fruit that makes me feel weak. I can't eat all that sugar. I thought everything they were trying to do was contradictory to what helps me. Any advice or help is appreciated. I felt like I was going to be killed over at that hospital with no one that know HCM to help me there! thanks for listening. I am so upset tonite but so glad to be home in my own bed! Kathy

  • #2
    Dear Kathy,

    I am so sorry you had such a bad night. I don't know what to tell you. Yes, nitro is contraindicated in HCM. Please do a search on this site and you will find a lot of info about it. I don't know if you should've checked yourself out of the hospital against doctors orders or not, but you do have a right to good care, not just what they would do if a regular person went in with chest pains, but what they need to do with an HCM patient. Sometimes you have to educate your docs. We're here if you need us.


    Husband has HCM.
    3 kids - ages 23, 21, & 19. All presently clear of HCM.


    • #3
      been there!!!

      Dear Kathy,

      The medical wisdom used to be that HCM can't cause chest pains (I don't know why they thought that), but some of them who don't keep up with HCM still think so.

      I have had almost your exact same problem several times. Please do whatever you can to get to Dr. Shah for your appointment, while staying safe, of course.

      You should tell him about your experience at the hospital. Ask him to write down the medical terminology you need to use in case you have to use the ER again. You can get a Medic Alert bracelet (medicalert.org) that says no nitro on it, too, which will help.

      I also NEVER ever eat hospital food if I can help it and if they try and give me a "heart healthy diet" (what a joke) I change it and if they change it back, I ask for the dietician/nutritionist and let them know that HCM is not heart disease and tell them your cholesterol level is very low and that you need salt for the arrhythmias. That should blow their socks off.

      I have also walked AMA (against medical advice) when they wanted to do an angiogram, an EPS, and a TEE because my troponin level was high. Despite having super low cholesterol, low blood pressure, having had an EPS a few years before and having been on coumadin for 6 months. It was all "cover our asses" tests. I refused and never regretted it.

      Oh, if I know I'm going to the ER --I bring food with me if I have time. And a book.

      take care and tell us how your appointment goes,



      • #4

        I think Sarah sums it up nicely. Learn what you need to do for yourself and if ER personnel won't help you, go elsewhere as you did. There are many great people working in the medical profession who geniunly care about patients, however, we the patients must be responsible for our health first. Keep us posted.

        Cleveland Myectomy Crew
        Member since November 2002

        \"Chance favors the prepared mind!\"


        • #5
          Oh, another suggestion!

          One time, I ordered a pizza sent to my room!!!!! The nurses freaked out and said I couldn't have it, but my doctor just smiled and said I could (it was already in my hands at that point anyway!)

          So next time, request a phone and order Chinese (no msg, please)!!

          Take care,



          • #6
            Sarah, Why no msg? Is that just for you?


            • #7
              msg is yucky

              Well, no one really needs it anyway, but it makes my stomach very unhappy and some people are just downright allergic.



              • #8
                This is like reading the same old story over and over again, except the names and places change. What a shame, but that's one of the reasons for the founding of the HCMA. Lisa and I spent long hours, planning and agonizing, and just see where she has brought us to today! Thank goodness she had the know-how, resources, and drive to forge ahead. We've reached a lot of the right people, but so much more to do......... Linda


                • #9

                  I'm sorry to hear about your horrible experience. I'm new to the HCM world and still learning, but i can still offer my 'hang in there, we're all here for you if you need us'. And of course, we are. I can't tell you how many times i've just needed to vent my frustrations and fears to someone, and i've found the HCMA to have provided an immeasurable service in that area. I'm just waiting for Lisa to tell me 'okay bud, you've posted enough, time to get a life'. LOL.

                  (But please, not yet Lisa, i still need you!)

                  Hope everything goes better for you from here on in

                  "Some days you're the dog... some days you're the hydrant."


                  • #10
                    Oh Kathy,

                    You've just described practically every experience I've had in ER and hospital. The last time I went to ER, I actually yelled at the ER doc for telling me that blockage and obstruction were the same thing! (He was referroring to arteries and I was referring to septal obstruction). I also have to fight them on the Nitroglycerin thing too.

                    At any rate, thank God you are educated enough to be your own advocate!
                    HOCM, Septal Myectomy 10/02 (Mayo Clinic), Medtronic ICD 10/07, TIA 10/07


                    • #11
                      I know one time my dad went to a hospital in the Florida Keys and they started trying to give them nitro and my mother stopped them.

                      What is really scary is what happens to the patients that are not in a position to talk for themselves in a hospital? Or have not educated themselves on things like the harm nitro can do??

                      Kathy, probably the best thing you can do to help protect yourself in the future is try to help educate the staff at the hospital. Buy them one of the books that Lisa and Dr Maron wrote. Send it to the chief of the ER with a letter outlining your experiances. Explain up front that you are not trying to place blame or threaten a law suit, but rather that you just want to help educate the hospital medical staff on advancements made in HCM research and treatments.

                      If each person who visits this web site does the same thing, think about how many medical professionals would get educated on HCM!!!



                      • #12
                        Dear Kathy,

                        How awful! We all want to believe the "experts" know and will do what is best for us. It must have been very difficult for you to be in enough discomfort to go to the ER, then to find the doctors/nurses wouldn't give credence to what you have experienced and know, then to have to decide what to do in terms of leaving AMA. Wow!!! It sounds to me, also, that you made the best decision for you.

                        Do keep your appointment with Dr. Shah, though! If you have to, take the Metrolink and a cab. The Orange County line comes to Oceanside in San Diego County--it can't be too far from you. Get off at Santa Ana which is a fairly short cab trip to Hoag Hospital. The 6:44am train gets you to Santa Ana at 7:43am. And there are a bunch of return trips in the afternoon.

                        And ask Dr. Shah for ideas about where to go & what to say if you need to go to ER again.

                        Take care of yourself,


                        • #13

                          Thanks you little sweetie! I am going tommorrow. Hopefully the rain is over but it is still raining tonite. LOL But we are going. I have my echo tapes in hand and have warned them that they are not very good according to my reg. doctor here. I can't wait to see him and have a long list of questions. Can anyone here give me any hints as to what I should ask? I think your idea, Pat, about the ER problem is excellent and I will ask him about it. Pat, did he do a report for you to give your doctor? Or did they send one to you? I was hoping to get a report full of recommendations etc so I would have something to show these doctors should I need to. I feel so much better. I know it was that medicine but no one believes me!


                          • #14

                            I'm glad to hear you're going! As to the reports. I asked Dr. Shah to send my regular cardiologist a full report & he did--the doctor had received it before my next visit a month later. I asked him to give me copies of all the test results and his consultations and he gave them to me, commenting that he believes the information belongs to me since it is my body! I didn't request a copy of what he sent to the doctor; I think he would have given me a copy had I asked.

                            By the way, I didn't request copies of the reports until after he & I had discussed his findings and conclusions. And I know many physicians would consider it unprofessional to give the patient a written report without first talking it over with the patient. For me, reading what is written helps me grasp what I heard in the consult.

                            I will look forward to hearing your impressions after your appointment!



                            • #15


                              First, write down all the questions you have --regardless of how small or silly you may think they are. Second, be sure to have your list in front of you when you talk to Dr. Shah.

                              If they do another echo, they send you a report.

                              You want to know if you have any obstruction, how thick your septal wall is, what meds you ought to be on and any side effects to watch our for, what can you do if you have to go to the ER again, are you at risk for sudden death --need an ICD, and anything else you want to know.

                              Take care and keep us posted,