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  • Doctor Visit

    [Doctor Visit]

    Author: Amy Nierman (---.tnt3.seymour.in.da.uu.net)

    Date: 08-30-02 17:09

    I had my first meeting with a cardiologist. I fell like I've been on a rollacoaster and I'm not sure if I'm about to get off or if I'm going for the second round. An abbreviated version of what he said was - I don't want to label you with this yet. Let's see what your dad and son look like first. Then we can go from there. All people are different, for example, some have big hands. Norms are figured based on a certain number of people..blab...blab...blab... Pretty much lost me after the first sentence. Did mention something about that they're the best place in the world to get echo's done. Not saying my other one wasn't valid, but....

    So I guess I may be "normal" with a septum size of 1.5 cm. (if the other echo was correct). They did another echo today and I get to wear that halter thing for 48 hours. Oh I still have a wacky EKG, so I guess that's what the halter's for. My dad has an appointment in 2 weeks with the same doctor. They'll let me know if anything comes up, otherwise I should come back in say 6 months. Oh he did say something about if we did have it then we should get genetic testing done to help out my 18 month old - if he has it.

    So his decision to "label" me will be based on my dad, my son, and me. Part of me is very angry, and then a part of me is relieved. The 2 emotions don't go so well together. I had a major headache by the time we left the office 3 hours later. Now I feel I need to go to my dad's appointment. Not that my dad is unreliable or anything like that, but he hasn't done any studying on the topic and may not really understand what's important.

    Anybody else been on this same ride?

    Amy

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    [Re: Doctor Visit]

    Author: Tom (---.famvid.com)

    Date: 08-30-02 22:13

    Amy-

    My hope and prayer is that you are "normal" and that you don't get any thicker. I was VERY much like you. I had an abnormal EKG and my septal measurement was a 1.4 so my doc said that I "may" be getting HCM. That was just over a year ago.

    My mistake: I did not go buy life insurance.

    Why? Because it's now one year later and my measurement is 1.8-2.0 and I didn't think to buy life insurance because nobody told me anything but good, really. I had no reason to think of covering myself better. I did think enough to go find a HCM specialist who reviewed all of my tests and gave me even more to determine all of this. That's another key item to remember. I have some friends who get docs who tell them what they want to hear. Get a doc who not only knows his HCM, but also will tell you the truth.

    So, again...I hope you don't get any thicker and that all goes well. But, if I were you...with that EKG and them doing echos and everything on you...I'd be sure NOW that you are set in the life insurance area. And if you're not seeing a specialist yet, I'd still see one in a year or so to get his/her opinion. Better safe than sorry.

    Good luck-

    TM

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    [Re: Doctor Visit]

    Author: Sarah B--Board Moderator (---.client.attbi.com)

    Date: 08-31-02 00:47

    Dear Amy,

    First of all, Tom is right about the insurance and I would run, not walk, to getting some more and on your son, too.

    Second of all, I try very hard to be diplomatic about what I say on this board, but I'm going to break rank here and tell you that your doctor is a freaking crank!!!! What in the world is he on? He is going to base _YOUR_ diagnosis on someone else's results? Why would you even bother to show up in his office, as it is clearly a waste of time. I have never heard of such a thing in my entire life.

    Now, it is true that HCM is genetic and that if one of your parent's has it, then you have a 50/50 shot at having it. However, this does not mean that you can diagnose someone based on their family history. You diagnose someone based on their own symptoms and test results.

    PLEASE call the HCMA and get the name of a specialist to go to. OMIGOD. I can't get over this guy at all. You have every right to be very angry. That is not medical care.

    Furthermore, genetic testing will not help you son at this point in time. Please read the earlier posts about genetic testing. There is no real genetic test right now. The best way to help your kids is to get life insurance on them now and then have them get echos every 1-2 years till they are grown and then they need echos every 2-5 years after that.

    Please please please find a new cardiologist.

    Sarah

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Doctor Visit]

    Author: Sarah B--Board Moderator (---.client.attbi.com)

    Date: 08-31-02 04:00

    Dear Amy

    I was so upset when I wrote this, I want to clarify the genetic testing comments I made.

    There are about a dozen known genetic mutations for HCM right now. Testing is a long, involved process and it doesn't necessarily change your treatment plan. So until we know more and until the tests are cheaper and easier, it just isn't really done the way it sounds like this guy is telling it to you.

    S

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    [Re: Doctor Visit]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 08-31-02 10:34

    Amy... We need to talk again..if the septum is 1.5 and your ekg is abnormal...well frankly it sounds like HCM to me and if someone (dr) is holding off so they do not "lable" you ...well that makes no sense to me whatsoever.

    I was hoping that you could stay with in a driving distance from your home ... but a trip to Minnisota or Cleveland, Ohio may be well advised at this point.

    Regards,

    Lisa

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Doctor Visit]

    Author: Amy Nierman (---.tnt2.seymour.in.da.uu.net)

    Date: 08-31-02 12:52

    This will be my third attempt to post under this topic. The first two times I had a helper who likes to push buttons. First he shut down the whole computer and then he pushed the buttons on the phone which I think caused me to get disconnected to the internet. While he's taking a nap, I'm going to try this again.

    Like I mentioned to Mary on another post, I'm a what if person. When I went to the doctor I had all the what ifs planned out. (So I thought) I just never thought he'd say I don't want to label you. And now that I think back he might have said something because of the implications (maybe, I can't remember now). So maybe he was thinking insurance issues.

    After a nights rest with my brain still working on the puzzle I think somtime that maybe I've jumped to the wrong conclusion. Maybe he doesn't want to label me based on the year old echo since it wasn't from their facility. (I don't know if they're the best in the world, but I do know that Jerry mentioned from another posting that they are one of the best places (Krannert Institute of Cardiology) to have an echo done.

    Then I think - but if I show signs and my son shows signs of hypertrophy then what does that imply. The echo machine at our local hospital isn't good? (We both had our echos done there, but by different technicians and looked at by different cardiologists.)

    I have to go back to the doctors office on Tuesday to return the holter. I'm going to request a copy of the new echo report. (Keep your fingers crossed that it will be ready.) I've also decided I have to go to my dad's appointment. I find it odd that they didn't schedule an appointment to find the results of my echo and my holter and that he would talk to my dad about how to procede instead of both of us. He did mention something about that I should not go to the doctor or ER for chest pains or if I did to let them know I have an abnormal EKG reading otherwise they might do "something" that could really harm me.

    Being a person who likes to have a plan of action, I've decided to enjoy this weekend and not worry about the doctor. I'll wait two weeks and go from there. By that time my son will have seen the pediatric cardiologist, my daughter will have had an echo, and my dad will have had an echo and a visit with the doctor.

    As a whole our family appears to have few symptoms if any. So I hate for us to bother the real specialists, but then I don't want to end up later in life wishing that we had gone either. I think at this point it's best to wait and get the results back from these tests and see what happens from there.

    Thanks for the support,

    Amy

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Doctor Visit]

    Author: Sarah B--Board Moderator (---.client.attbi.com)

    Date: 08-31-02 13:03

    Dear Amy,

    I agree, enjoy the weekend, however, I want to point out a couple things about this doctor.

    First, never ever ever think twice about "bothering" a "real specialist" --that is why they exist. HCM is a very complicated disease and just because you are not gasping for breath and can climb stairs, that doesn't mean that you shouldn't start getting treated for HCM --espcially since your ecg is abnormal--there is a LOT of evidence that taking a beta-blocker or a calcium channel blocker BEFORE it gets bad will make a big difference later.

    Second, um, I've never heard of a doctor telling someone NOT to go to the ER if they have chest pains. What are you supposed to wait for? He is also implying that your local ER can't read an ECG and would malpractice on you. I can't imagine what he is thinking that they would do to you. Now, it is really easy to malpractice on _me_ because I've got all kinds of weird medications in my system and I react strongly to most medications as well, so I'm a disaster waiting to happen. However, an abnormal ecg is something most hospitals are prepared to deal with.

    I'm begging you to get a new doctor asap.

    Sarah

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Doctor Visit]

    Author: Sarah B--Board Moderator (---.client.attbi.com)

    Date: 08-31-02 13:11

    and the bit about talking to your dad and not you is pretty sexist if you ask me.....

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Doctor Visit]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 08-31-02 14:15

    Bothering a specialist... I have never heard of such a thing... You have HCM in the family..it is a rare disease. You will not be a bother because you have not had a "serious" problem. You do have a condition that little is known about and that few can treat well...

    No I do not think you should drop everything and get the next plane to a specialist... but I do think it is reasonable to see a specialist in the near future. I also think you will sleep better knowing the complete picture.

    Best wishes,

    Lisa

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Doctor Visit]

    Author: Karla (---.proxy.aol.com)

    Date: 09-01-02 10:02

    Amy,

    I'll throw in my 2 cents here....I understand your frustration! Hubby was diagnosed in May, and we haven't made much in the way of any kind of treatment plan for him. He has seen 2 cardiologists here...(we live in Central FLorida) both who are obviously NOT familiar with HCM. Long story short, they side-step our questions, keep referring to his hypertrophy as 'mild' (even though the word SEVERE is in the report staring them in the face!) and follow that comment with a gloomy 'sudden death' warning. (read the boards here and you'll discover the real truth on that) My husband is symptomatic - extreme fatigue, heavyness in his chest and chronic cough. (He also has an extraordinary EKG) This last "bozo" told us he wasn't convinced that his heart was causing his fatigue! When my husband asked about seeing a specialist, the doc just laughed at us and said, 'sure, if you want to"...like we would be foolish to do such a thing.

    I will tell you his - I, personally, will NOT be satisfied until I hear from a specialist - someone who KNOWS what this disease is really all about and hubby is on the right track for treatment.

    Stay informed -this web site is a great source of info - and follow your instincts...keep searching and educate yourself. As frustrating and time-consuming as it is, don't stop until you find the right doctor.

    I'll step off my soap box here....

    Good luck to you!

    Karla

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Doctor Visit]

    Author: Amy Nierman (---.tnt3.seymour.in.da.uu.net)

    Date: 09-02-02 00:35

    Well it appears that quite a few people in this world think we make things up. Maybe it's symptoms or information, but either way were not making things up for fun. It's for real! Good Luck to your and your husband Karla and you can get on your soap box anyday and I'll listen.

    Well I had a talk with my mom to see if she interpretted some things the same way I did. She said she didn't hear the doctor say "Don't go to the dr., ER for treatment for chest pain, etc." Where I thought he did, and thought it strange because where was I supposed to go. But that I was supposed to let them know that I had an abnormal EKG so they wouldn't misdiagnose me. We did agree that he didn't tell me how I was going to get the test results back. He just said something about talking to my father. Of course mom pointed out that I didn't ask how I was going to get them back either. (Where was my head?) She agreed that he wanted to look at my dad's and son's stuff, but she didn't think necessarily in order to make a diagnosis, but then again he didn't say how I would find anything out. The genetic testing part we agreed on.

    I brought mom along so that I could have another set of ears, but we just didn't "hear" things the same way. I guess we also had two points of view when we went in. Mom's point of view is that he's a doctor he knows all. My point of view was - Does he know enough about HCM? (Maybe I was too critical, jury's still out on that.) My mom thinks I have read way too much and am making a big deal out of this. Afterall if my dad has this, he's about 57 and seems to be fine other than an abnormal EKG. Then she goes on to quote the doctor and his "They take 500 people to come up with the "normal" ranges. Even if you're not in the "normal" range that doesn't mean it's not normal for you. I believe that's what she wants to hear, we don't have it - we're just a little bigger than the normal person. My response was that based upon my old echo and son's new one, we fell within the range to be "labeled" HCM. Althought the echos were done at the same hospital, we both had different technichians and different cardiologists make the reports without knowing about what was on the others echo. And both echos show the same thing. I could consider it a bad echo, but because they both show the signs of hypertrophy I just find that a little too odd.

    Mom thought he was trying not to scare me. I said I'm not scared, I just want to believe that he knows about HCM. I don't want to be 20 or 30 years down the road and say "If I only new that."

    Does anyone know how the normals are figured? And how likely is it that we would be "normal" with a little bigger septums than the average? The later statement is something that both my local physician and the cardiologist stated. I'm not saying that I believe it, I just want to know if there is even that possibility.

    As always thanks for the support!

    Amy

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Doctor Visit]

    Author: Sarah B--Board Moderator (---.client.attbi.com)

    Date: 09-02-02 11:00

    Dear Amy,

    So, if I understand this correctly, the doctor is saying that your septum is 1.4 but that this is so close to normal that it could merely be normal for you and he is not going to diagnose you has having HCM unless your dad and your son are also out of range, too. Does that sum it up ok?

    Well, I will give you that someone can have echos done and the results can be slightly different, but usually only by about 2/10s of a centimeter. So if the margin of error is 2/10s, you are still outside normal (1.0). You would have to be about 7 feet tall for the "normal" range to not apply to you.

    Frankly, all his talk about norms is all fine and dandy, but between having a normal ECG and a septal wall of 1.4 --I think the NORM would be to diagnose you as having HCM.

    You are NOT making a mountain out of a mole hill, as your mom seems to think. You are asking the questions you need to ask to make sure you are getting the care you require. Please call the HCMA at 973-983-7429 to get the name of a specialist.

    take care

    Sarah

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Doctor Visit]

    Author: Reenie Smith (---.snbrca.adelphia.net)

    Date: 09-02-02 11:46

    Amy, I agree with Sarah. It seems your doctor needs some more information. If you have an abnormal EKG and a septal wall of 1.4cm, you most likely have HCM. It's not the worst thing that can happen to you. When you get a "true" diagnosis, you can begin real care. That might consist of watching you closely for quite some time, medicine, etc. It's hard to say right not. It's wonderful that you don't seem to have any symptoms. That doesn't mean it will always be that way. Especially since you have a need to be prepared for whatever comes your way, I would really get a specialist's opinion on your condition, and your son's. What happens when 5 years down the road they say, "Oh, yeah. I see what was happening then.........." And maybe you could request the HCMA packet be sent to your doctor so he can learn a little about HCM. It just sounds to me he doesn't have the experience to be effective with an HCM patient. That's just my opinion. Good luck.

    Reenie

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Doctor Visit]

    Author: Amy Nierman (---.tnt1.seymour.in.da.uu.net)

    Date: 09-03-02 16:41

    Lisa,

    I tried to e-mail you this afternoon, but am not sure if it went through or not. My e-mail has decided to do "funny" things. If you didn't get my e-mail, let me know. Basically it was about my new echo with a new 1.2 cm septal measurement which was described as "upper limits of normal" on the echo report. Haven't heard anything from the doctor though.

    Amy

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Doctor Visit]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 09-04-02 15:56

    Amy - 1.2 is upper limits of normal... how is your EKG?

    Lisa

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Doctor Visit]

    Author: Amy Nierman (---.tnt2.seymour.in.da.uu.net)

    Date: 09-04-02 22:18

    Lisa,

    My EKG was abnormal, but I don't know anything about the 48 hour holter yet. From what I can tell from the preliminary echo report is that everything appears to be in their normals. I thought 1.2 cm was the upper limit, but wasn't sure. On my echo it listed .6 - 1.1 cm as the normals for both IVS and LVPW. My LVPW diastolic thickness was 1.1 cm. Still within the normal range, but the high end. The only thing that really didn't fit in the range was my LV Diastolic Diamter Base which was 3 cm and they had the normals listed as 3.6-5.2. I have no clue what that means and can't seem to find anything about it on the internet. If anyone knows what that means, I'd love to know. I'm hoping that since I can't seem to find anything about it, it's not that important.

    Amy
    NOTE: This is a post from the previous forum message board.
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