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Question about Resting Obstruction

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kathyn2 Find out more about kathyn2
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  • Lisa Salberg
    replied
    Re: Question about Resting Obstruction

    973-983-7429 Call anytime!

    Leave a comment:


  • Lisa R.
    replied
    Re: Question about Resting Obstruction

    Lisa, Linda, Jim
    It has been awhile, I sometimes need a break from reality, just do my life with all of it's ups and downs, so I don't get so down, having this can sometimes get to me, but knowing that God has me here for a reason and I need to live and enjoy take care of my family and experience so many things brings me back up, When it comes to all of the DR stuff, I thought I was seeing a specialist this time, he just is not at Mayo, he has worked with dr. that are affiliated with this site, hummmmm.
    My brother is in the medical field, a medical physicist, so has total access to so much info and understanding of what it all means, I am glad he is wanting to research then he can explain things so that I can understand it better. I am trying to get a hold of my cousin, who had heart issues a few years back, I think he got a diffibulator, but really I am not positive as to what all was going with him, I have emailed him again to try to get info about what took place with his testing, no one else in our family, that is living has had issues like I have. though I have requested to them to be checked again, more so to pay attention to the nieces and nephews that are 9,7,6,5,4, & 3!
    I am now wanting to find out about diet and exercise, what is a good balance of all of it, what surgeries I may need to think about in the future. I think when I see the dr. they are telling me all the same stuff, with maybe one or two new things with the new DR., whom like I said we liked he had a sense of humor, which is a really big thing to us, but so is honesty and being open with everything. We just felt this Dr. Mankowitz was listening, taking me in. and learning about me and how I deal with it and what is going on, I see him again in July and wonder if I should wait until then or check out this Mayo clinic in Minnesota, Lisa, pass your number my way again, and I guess I can call to talk to you about what you think.
    all of your support info and experience is so appreciated by me, my family and everyone that comes to this site, What a blessing you all are.
    talk soon, thanks again, have a great memorial weekend
    Lisa R.

    Leave a comment:


  • mtlieb
    replied
    Re: Question about Resting Obstruction

    Hi Lisa!

    Nice to hear from you again

    I don't have a lot of time right now, since i'm trying to get things packed up here before i head back out to Montana in a couple days. As usual, i've let way too much go till the last minute. I'll send you a more detailed note before i leave!

    I think i told you before that I am not a candidate for myectomy or ablation since my septal thickness is fairly small, so we are treating my obstruction with meds only. Mine is the same as yours it sounds like, 100mm at rest. Interesting that i would have more options available to me, if only my septum was thicker! Most people probably don't wish for a thicker heart, but it would expand my treatment options significantly.

    Talk to you more soon, and thanks for the note!

    Jim

    Leave a comment:


  • Linda
    replied
    Re: Question about Resting Obstruction

    Lisa, good to hear from you again. Sounds like you are ready to call Lisa in the HCMA office and talk about seeing someone with a bit more expertise in HCM management. A gradient of 100 at rest (if I understood you correctly) is significant. You might feel reassured with another opinion. It never hurts to talk. Best wishes, Linda

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  • Lisa Salberg
    replied
    Re: Question about Resting Obstruction

    Nice to see you Lisa! It has been a while. It sounds like your brother is getting on top of things. RE the timing of screenings - things change so fast for kids it is a good idea that through puberty the screenings are every 12-18 months... I have one case of a completely normal echo at age 14 ...3 mo later an episode of chest pain lead to a new echo and a diagnosis of HCM septal measurement of 1.8???

    Be well!
    Lisa

    Leave a comment:


  • Lisa R.
    replied
    Re: Question about Resting Obstruction

    hey Jim,
    it's been awhile since I have been on the site, my brother for some reason decided to do some researching and called me today to get my figures, well when I told him , I knew what he would say, and I know I am a fool for the way I don't take care of myself, i.e. the occassional smoking, or having a drink Big fool, it has made a mark on him though to be tested again, he is 39, and at slight risk for a heart attack anyway, our father survived one in his late 50's, he also found his children need to be tested as well. My new dr said every 5 yrs, Ken found out a Mayo clinic said every 3yrs.
    anyway I am typing after reading some of the posts and found that you have a gradient like me, of 100 at rest. I didn't understand this gradient thing much, though Ken explained it this morning when he phoned me for my info. It's not good, I had a thallium test done a few years back as well as a stress test, unless it was all part of the same thing, I had to go on a treadmill and like I said in the past I am no athlete. no one ever really says much to me that is new or outstanding, it is all the same, take it easy, get rest, drink water, pay attention to yourself.
    well seems more lately that I have these feelings, come from the chest, I don't know if they are palpitations of what, I was put on a monitor for it since I almost pasted out while working one evening. My personality and stubbornness though will not let me do so, What if I do pass out and those around me have no clue, so I guess I don't. The holter showed nothing other than some increased beats. He says to sit if I think I am light headed. take the break.
    I have thought about going to a Mayo clinic to see what someone else has to say, I know of someone that went to the doctor I am seeing now, he is a specialist, but told her she was fine and she ended up crashing, she now has a diffibulator I believe, so it has me wondering. Just curious as to what you think about the gradient stuff, what surgeries you have been told that may need in the future, my measurement for the left atrium is over 4.5cm, the right is normal. I got the ok to have my medicine increased from 25mg x's daily to 50mg of metoperol. I find that during womenly times I need the 50 in the morning and 25 in the evening and I do well. other times I am ok with the 25 at both x's I still say that sugar has an effect and so does carbination, I don't normally drink soda, though I love a mug rootbeer, well sometimes I have a bit of breathing issues afterwards. Anyway
    Even though I have seen doctors, I sometimes feel like I am lost in what this all means for my future.
    Lisa R.

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  • Cynaburst
    replied
    Re: Question about Resting Obstruction

    A normal gradient is 0.

    Also, gradients can change from echo to echo depending on hydration levels and other factors.

    Leave a comment:


  • shirleymahoney
    replied
    Re: Question about Resting Obstruction

    please tell me what a normal gradient is mine is 50mm

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  • kathyn2
    replied
    I am by far not an expert in hcm or hocm but from what I know you are receiving all the wrong drugs. Is your doctor an hcm expert? Does he know much about this disease? Ace inhibitors are contraindicated. most drugs with a pril on the end are ace inhibitors. Also, unless you have congestive heart failure I think diurectics are also contraindicated. I do not know what the V drug is. Usually the doctors start you out on beta blockers if you can take them. If they don't help then they try calcium channel blockers. I would get another opinion if I were you.

    Leave a comment:


  • Sarah
    replied
    whoa is right

    I don't think your current treatment plan follows the latest standards for care. Digoxin and ace-inhibitors are not typically beneficial in HCM. Furthermore, while losing weight will improve your general health and take some strain off of your heart, it should not be considered frontline treatment (in my opinion).

    Please call the office at 973-983-7429 today to find out about specialists in your area.

    Lisa is going out of town tomorrow for 4ish days, so please call today if you can.

    S

    Leave a comment:


  • Lisa Salberg
    replied
    First I see something very odd... LV dilated??? and you EF is 70%?? this is very odd...
    Digoxin is not a med we ofter seen given to those with high EF's...50% is normal EF... many HCMers are 55-75% EF meaning that we have strong output.
    Are you seeing a specialist?
    Lisa

    Leave a comment:


  • DLCC2
    replied
    My curiosity is peaked in realtion to my obstruction and oth

    Ok I'm going to give all of you out there some techical mumbo jumbo that I'm learning and I would like to hear what you think?

    I was evaluated 6-25-02 with a Stress Ech that showed significant asymmetric septal hypertrophy with a posterior wall thickness of around 14mm and an upper septal thickness of 21mm. It showed a hyperdynamic left ventricle. At rest peak velocity in the left ventricular outflow tract was 4.4 m/sec; that increased during excercise to 5.4 m/sec.

    After my test I went to see my Dr. a week or two later and we sat down and discussed the tests he gave me. He told me at that point about losing weight and eating a better diet could actually reduce my obstruction, explained with the arrythmias and changed my meds and said I should start doing better and have more stamina. (That was not the case)
    The Verelan medication was taken away and Lisiopril 5mg 1x daily & Digoxin .025/day were added to my medications.

    Several weeks later so SOB and scared out of my mind I went to see him and we decided to do the Heart Cath.

    On 8-23-03 admitted for right and left heart cath. Coronary angiography showed normal arteries with no obstructive coron. disease. There was systollic compression first septal perforator, consisitent with increased contractability in the upper septum. Hemodynamics and left ventriculograpy showed 3-4+ mitral regurgitation.

    Results during procedure: The left ventricle was dilated, the end diastolic pressure was significantly elevated at approx. 35mmHg before and after the left ventricular cinieangiogram. The wedge pressure was concordant with this. Visual estimation of the ejection fraction was 70 percent. Cavity Obliveration was seen. When the pigtail catheter was pulled from the apex out, some ventricular premature beats were produced and post extrasystolic beats showed a doubling of systolic pressure to over 200 mmHg. In addition the ventriculogram raised the question that there may be some element of subvalvular stenosis which my be nothing more that the manifestation of the hypertrophic contractility and the hypertrophic obstructive cardiomopathy. In on injection of the left coronary artery, the first septal perforator shows milking of the vessel compatible alos with the diagnonsis of HCM.

    The next section of this report at the bottom says"The patient has significant pulmonary hypertension with a peak systollic pressure of 80. The right heart pressures are concordant with this. Thermodilution cardiac outputs are approximately 5.8 to 6.0 "

    Ends with Conclusions:

    1. Normal Coronary artery anatomy with a right dominant system.
    2. HOCM
    3. Significant mitral regurgitations (estimated at approx. 3+ on a scale of 4. Pulmonary Hypertension


    After reading the previous strings regarding ejection fraction, upper and lower septum and mitral valve. I could you some councel on making sure I'm reading my report correctly.

    Thanks Diana

    Leave a comment:


  • Robert Hartwell
    replied
    Jim,

    Glad I could help. I actually was on meds for just over two years. Thoughts of surgery were just too much to handle and I talked myself into continuing the meds too far.

    Give them a shot. They do help many folks and hopefully they will help you too.

    Bob

    Leave a comment:


  • mtlieb
    replied
    Hi Bob, and thanks! (Lisa too)

    Yes, it is my septal measurement that is 1.5 cm. However, i've had enough echocardiograms done now that i was looking at the monitor pretty closely when the technician was doing the measuring. I remember seeing numbers like 1.8 and 2.2 as she was measuring different parts of my septum, however the final report hadn't yet been completed when i left the clinic so maybe the official numbers aren't in yet. I do also recall seeing my gradient measured and it was anywhere from 5 to 7 m/sec so i do believe that 100mmHg is correct. This is resting, i have not been tested under stress.

    I have seen a specialist, spoke with him on the phone last tuesday, and on wednesday emailed a list of questions to him regarding all of this. It's been almost a week and i haven't heard from him, so i may place another call tomorrow.

    My increased dosage of Toprol-XL does seem to be slowing my heartrate some, however it is still a very 'hard' beat that i feel pretty consistently, and especially when i am trying to sleep

    Please do not mistake this as meaning i am impatient with the meds or not willing to give them an honest try. That was never the case. Quite frankly, i can't afford anything else anyway so i would like very much for the meds to do the trick. I just wanted to know your personal experience with your meds, and thanks for your post!

    Jim

    Leave a comment:


  • Lisa Salberg
    replied
    With a septal measurement of under 1.6 Ablation is not an option for septal reduction... myectomy is still an option.
    It is odd but very true that some have smaller septal measurement yet have large gradients... In fact it seems that we have had a run on this over the past few weeks...Jim your not the only one.
    Lisa

    Leave a comment:

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