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100mm Gradient Good or Bad?

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  • 100mm Gradient Good or Bad?

    Hi All,

    After a lot of months of dealing with doctors that don't have any expertise with HCM, i finally broke down, borrowed a couple thousand dollars from my family, and drove to Boston to see the folks at Tufts-NEMC. I wish i could tell you that i had a great experience there, but i did not. I'm sure that's a big surprise to many of you, and i'll probably be kicked off the HCMA website for speaking ill of the folks in Boston.

    I was hurried through what i thought was to be a comprehensive HCM clinic, and when i left there at the end of the day, i did not feel that i had any more answers than when i arrived. I can't tell you how disappointed i am right now, and being unemployed and without health insurance, i have to tell you that borrowing this kind of money was a pretty big deal for me. I'm not looking for sympathy here folks, i'm just plain mad

    At any rate...

    I was told that although my septal measurement is only 1.5cm, that i have a gradient of 100 mm/Hg. After meeting with edited(doctors) , and some unnamed doctor or med student who just stood in the corner and watched, i didn't get the impression that this was a very big deal. The end result of our brief discussion was that my dosage of beta-blockers would simply be doubled (to 100mg a day), and i will call them in two weeks to see how everything is going.

    What's the deal here? I have read previous posts that suggest that a 100mm gradient is actually something to be quite concerned about. Could somebody please shed some light on what this gradient thing is all about? Also, how exactly is my beta-blocker going to reduce or eliminate this gradient?

    Thanks much for your response!

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

  • #2
    phooey

    Dear Jim,

    I'm very, truly sorry you were not impressed with T-NEMC. I do understand excactly how you feel; I would be very pissed.

    If I were you, I could call them up and let them know how you feel or write a letter if that makes you more comfortable. This is especially true if you didn't get answers to all of your questions, in which case it is sometimes easier to write them all down and then fax them.

    Honestly, I've never figured out this gradient stuff myself (don't tell!) I may get "fired" for it. However, from what I remember, 100 isn't good. But if your septum is only 1.5, I'm not sure how a gradient that high is possible.
    edit from Lisa Sarah - -the data is clear that this is a documented situation and very possible Septal measurement and gradient are not linked

    In all seriousness, give them another shot by letting them know your a. disappointment and b. unaddressed concerns and seeing how they respond.

    If they don't meet your needs after that, then I suggest you try again with another center. Since your funds are severely limited, I recommend scheduling phone calls with prospective doctors to discuss your situtation and get a feel for them and their demeanor before traveling again.



    How frustrating and just plain stinky. Let me know what they say.

    and take care and hang in there!

    S

    Comment


    • #3
      Jim,

      I don't have anything to add, but I'm sorry you had such a stinky day. I sure hope you get some answers soon.

      Reenie
      Reenie

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

      Comment


      • #4
        Sarah and Reenie,

        You have given good advice as usual. And of course, i will follow up with edit Doctor and let him know that i feel i got sloppy work from him at the clinic. I'm just waiting a few days until i calm down first! LOL. It will serve no useful purpose to be upset when i call or write, and i really don't want to walk away from the time and money i've already invested in them. (I left a large deposit prior to my visit to cover most of my bill in advance.)

        You know, i realized at the end of the day after leaving the clinic, that nobody had even taken my blood pressure! Even my own crappy GP takes my blood pressure when i see him. Is this something we don't care about any more, or are the guys in Boston so good that they can tell my blood pressure just by looking at me? It's just one of many little things that when it's all added up, makes me feel that my visit wasn't so 'comprehensive'.

        Thanks again,

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

        Comment


        • #5
          Wow! I am really sorry with what happened . When you said it was from Tufts that really shocked me. When you said edit doctors it blew me away. I have a great relationship with these guys.

          I strongly suggest when you call back to them let them know how you feel! Especially if you are talking to edit the doctor. My whole regimen of treatment is pretty much done by phone since I live in Florida. Please give them a second shot.

          I know all to well about getting shoddy service from the health care community and it makes you mad. Stay well and don't get stressed.

          Mary S.

          Comment


          • #6
            Jim, like you, I find it best to wait a day or so to calm down and try to make sure I have things in perspective. Write concerns and questions down so you don't forget anything, then call again and address each area you felt to be lacking. Be sure to tell them what your expectations were and that they had been chosen after careful thought and many high recommendations. Even tell them how you felt the need to "vent" on the message board. That will give them the opportunity to read exactly how you felt during the emotional time after the visit without you having to say those things to them. I really think you will get some better info and explanations going this route. As for the med, maybe they are moving cautiously and want to be very conservative with the gradient, if the med can help. The beta blocker should reduce the force of contraction and maybe that will help the gradient??????? Ask them. Remember, you are just beginning treatment, and it's easier to add to, than to take away something that hasn't gone well. As much as we all have learned about HCM, we are still referring to certain doctors as the "HCM experts" and with that comes the need to understand that we won't always know what every reason is or means. When we don't understand, we have to ask(ask them why no BP was checked). I'm really hoping this leads you to more satisfactory results. Good luck and keep us posted. Linda

            Comment


            • #7
              Gradient and Beta Blockers

              Jim - First of all, sorry you had such a crappy experience!

              The way it's been explained to me, Beta-Blockers can help lower your gradient simply by slowing down the heart enough to improve it's function through the obstruction. At least, that's how it's been explained to me in my son's case - a slowed down heart will get you improved function and therefore a lower gradient. Hope that makes sense!

              Dee
              Dee, Mom to Dylan
              (Almost 7 yrs old, HOCM, Endocarditis/Stroke 1/01, Myectomy/Valve Repair 4/04)

              Comment


              • #8
                First of all... you are not going to be "kicked off" the board for not liking a center. Not every person has a perfect fit with every doctor or center.
                I will make a few comments...
                1. When going to a specialist some people can get up there hope that all problems will be solved and the "cure" is within reach...this is not obtainable for those with HCM and honestly it is disappointing that we can not look at that as an option.
                2.HCM management is not a one stop shopping issue..time is needed to adjust medications and try others to see what may help.
                3. We ALL have off days... I was not in Boston the day you were, I have no idea what was going on...but maybe someone had a bad day...the docs, the nurses, or you....

                I am the 1st to say tell a doctor if you are unhappy with treatment, attitude, or any part of their care of you... and you should call or write and let them know your concerns. First it will help you get the answers you need and even if you choose not to return...the next person down the line may not have the same problem as you.

                RE Gradient: 100 is on the high side and it is rather normal to see how it responds to meds before you take any big steps such as septal reduction.

                You are still very welcome here and to all who read this please know that you are free to make whatever comments you wish. I will tell you that if any comments are mean, rude or defamatory they will be taken off the board....simply not liking a center is not grounds for being taken off the board.

                Lisa
                Knowledge is power ... Stay informed!
                YOU can make a difference - all you have to do is try!

                Dx age 12 current age 46 and counting!
                lost: 5 family members to HCM (SCD, Stroke, CHF)
                Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
                Therapy - ICD (implanted 97, 01, 04 and 11, medication
                Currently not obstructed
                Complications - unnecessary pacemaker and stroke (unrelated to each other)

                Comment


                • #9
                  Thanks Lisa,

                  I realize that edit the doctor and the others have bad days just like the rest of us. I just wish it hadn't been THAT day. I can also assure you that i was well prepared, professional, and in very good spirits (heck you must know that i was overjoyed to be there!) I showed up an hour early to make sure they had all my records in case they wanted to refer to them before we got too far into things. It was obvious from the start that their attention was not on me in the least. Perhaps one of their other patients had some serious problem that needed attended to. That should certainly take priority over me. If that were the case however, i wish they had simply told me so and rescheduled me for another day.

                  I don't believe my expectations were too high. All that i really expected was a comprehensive evaluation of where i am right now, a discussion of how my treatment should proceed from here, and that i be given time to ask the questions i had prepared. Their communication with me was terrible, i was made to feel very uncomfortable, and i was rushed through what i thought was to be a pretty intensive day.

                  At any rate, there's no use going into every one of my gripes here and now. There are way too many to list here anyway, and i don't want to go too far into this until i've given edit the doctor a chance to address my concerns. One thing is for sure, i've got too much invested with them to simply walk away, and one way or another, i'm going to get my questions answered and receive the quality of service that i was assured i would receive.

                  Thanks everyone,

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

                  Comment


                  • #10
                    P.S. I'm done griping now
                    "Some days you're the dog... some days you're the hydrant."

                    Comment


                    • #11
                      Hey, gripe away if you need to. That's part of why we're here. I wanted to say that I'm glad you're waiting til you cool off before you contact them again. I think that's a very mature thing to do. So many times people fly off the handle and start in before they know the whole picture. *Even me sometimes.* I think it's wonderful that you will let them know in a professional way what your problems with them were. That really says a lot for who you are.

                      Reenie
                      Reenie

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

                      Comment


                      • #12
                        Jim, I am also very sorry to hear that your day at Tufts did not go well. What I did when I went to my specialist is take a big list of questions. I told him I had the list and he could see how extensive it was! Dr. Shah seemed very amiable about answering all of them and I proceeded. I don't know how it went with you but I think maybe you should write out all your questions in an email and ask that the doctor answer each of them. You might also mention that you felt you were hurried thru your exam and had many more questions.

                        My heart thickness the last I knew (but I think it has worsened) was 1.6 and I have a huge obstruction. I don't think that thickness always has that much to do with the amount of obstruction. Gradients also change from one minute to the next according to Dr. Shah. Most of the good doctors will always try every non invasive method of helping your symptoms before doing invasive procedures on you like ablations or myectomies so please don't feel bad about that. AT least now you have established a relationship with these folks and you can get answers via phone and email hopefully. Did they do an echo on you etc? I wish you the best and I am sorry things did not go well at your first meeting. Hopefully things will improve for you there. Kathy

                        Comment


                        • #13
                          Hi All,

                          I'm 'nicely chilled' now, and in another day or so when i'm fully chilled i'll sit down and address all these issues. Thanks for all your advice!

                          In my heart i know the guys at Tufts are good folk and that they do really know what they are doing. That doesn't mean i don't have the right to be pissed about the particular day i was there, but i'm a pretty good-natured guy, and i have a really hard time holding a grudge against anybody. I'll let them know my concerns on monday, and i feel confident they will make things right.


                          In the meantime, i'm going to try to 'take the weekend' off, and not think too much about HCM. A person can drive themselves crazy dwelling on all this stuff

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

                          Comment


                          • #14
                            I feel a need to respond to several items here. I must admit I am a bit upset.

                            Jim,
                            You are making harsh comments and you had mentioned names in a way that is simply unfair. I have edited your comments and taken the names you mentioned off and replaced with "Doctors".
                            I am sorry you did not feel that your visit went well. I myself was a patient at the center in question and found my care far different. In my case the doctors at the center spent a great deal of time with me, my husband and even my daughter. The alterations made to my care have improved my quality of life dramaticly and I found the support staff knowledgeable, friendly and caring.

                            Your comments are simply one sided and I think you have been rather unfair to the doctors in question as they do not have an oppurtunity respond. Due in part to maintain your confidentiality.
                            From the information you stated you were there all day...yet they did not spend enough time with you? In earlier posts you mentioned your symptoms, it is very normal to treat symptoms with the dose of beta blockers you are now on. Maximum medical management is good management.

                            In future posting if you are unhappy with a doctor please do not give ANY names regardless of center... to state the name of a center is fine but naming names may lead to trouble. If a negative comment is made then found not to be accurate it is damage done... and may have grave effects.

                            We must remain fair and balanced here..doctors and patients have to respect each other..we are a team. In the field of HCM our specialist are few and far between...we need all of them.

                            As always I remind you and all readers that words have great power, caution is needed when making statements without the benefit of responce for the other side.

                            I do hope that you will make contact with the center in question, clear up all questions, concerns and ask any questions that you may not have asked or are still unclear about (such as the obstuction issue).

                            I wish you well and hope you are feeling well.

                            Lisa
                            Knowledge is power ... Stay informed!
                            YOU can make a difference - all you have to do is try!

                            Dx age 12 current age 46 and counting!
                            lost: 5 family members to HCM (SCD, Stroke, CHF)
                            Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
                            Therapy - ICD (implanted 97, 01, 04 and 11, medication
                            Currently not obstructed
                            Complications - unnecessary pacemaker and stroke (unrelated to each other)

                            Comment


                            • #15
                              Hi all,

                              I realize in retrospect that using the actual names of the doctors in question may have been poor judgement on my part. A message to my private mailbox asking me to edit them out would have done the trick quite nicely, and probably elicited an apology from me as well.

                              My motives in posting here were not to unfairly bash the good names of those in question 'behind their backs'. Quite the contrary. I felt that if i expressed my views to my peers here at the board, i could vent my anger at the situation and, with your advice and support, be able to more appropriately address my concerns directly to the doctors on monday. Vent here... preserve my relationship there.

                              I am not going to sit here and argue as to whether or not i had a poor visit to the clinic. Many things added up to a visit i found to be much less than comprehensive, and as the patient, only i can speak as to whether i received adequate care. There's no possible reason for me to do otherwise. I don't think it's so hard to believe that even the best of doctors have bad days occasionally, or that they can sometimes be just as scatter-brained as the rest of us. That is probably what happened in my case, but i do have a right to be quite upset about it.

                              I also realize that these doctors have done much for the HCM community, and in fact have reached somewhat of a celebrity status here. I do not doubt their contributions or their skill in treating patients.

                              With that said, i'd like to give a special thanks to those of you who were able to provide un-biased, objective help.

                              As always Lisa, thanks for providing this forum.

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

                              Comment

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