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.

I need some help.

Collapse

About the Author

Collapse

Toogoofy317 non-obstructed hcm, AICD 11-01-02 and 10-6-05 Find out more about Toogoofy317
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • cynthiaG
    replied
    no response

    Mary,
    I thought of my father, who moved to Florida a few years back (he had HCM and resulted in end stage CHF). He passed away four years ago. My brothers and I flew down to be with him when he was admitted to the hospital...we made umpteen attempts by phone and left messages with nurses and never ONCE did his cardiologist return a call or met us at the hospital to discuss his condition. We were livid to say the least. Here we came all this way from Massachusetts and were there for a week and never once met him or spoke with him. I'll never forget that. I'm not targeting Florida, as I know that can happen anywhere, but it just brought that to mind.

    Leave a comment:


  • cynthiaG
    replied
    an appointment with Dr. Udelson

    Mary,I just found out the name of the doctor I was referred to in Boston. It is Dr. Udelson at the NEMC in early March. I was told that I'll be having an echo, EKG before I see him...it's almost an all day type of thing at the clinic. I've heard good things about him. take care...well wishes

    Leave a comment:


  • Toogoofy317
    replied
    I can assure that I was not in the least bit upset with the amount of time that it took for Dr. maron to return the call. When I made that post I did not know that doctos actually call patients after business hours! I thought those days were long gone. When I did get the call from Dr. Maron we talked on the phone for almost an hour so he could get the whole picture. Because he took the time to discuss the matter with my other doctors up there I think he made a better discision. As Lisa said Doctors are humans too! Sometime they just don't know all of the answers. What I do find kinda disheartening though is that I can get a hold of my cardiolgist a thousand miles away and can't see my local cardiologist who is just around the block. Go figure. I had been admitted to the hospital twice and still have yet to see him.

    I did in fact get another call from him today wanting to know how I was doing. He wanted to make sure everything was as good as can be because he is going on vacation this week. He begged me not to let you know Lisa that he was taking a vacation. As a result I am feeling much better only having some mild chest discomfort when I exercise.

    All in all the staff up there are the greatest I have ever worked with! I would recommend them to anyone ! As far as bad docs go I have had my fill of that too! Maybe sometime I'll get the chance to write my story and post it for all to read. It is a very confusing and frustrating story but I think it may have a happy ending!

    Oh yeah Lisa! Thanks for the conversation the other day! I can't believe you called me as sick as you were. Unfortunatly my mind is very lousy lately and I did not get a chance to write the one thing down that we discussed. If you could PM me the name again it would greatly be appreciated!

    mary S.

    Leave a comment:


  • Lisa Salberg
    replied
    Cynthia - I agree if a doc is unresponsive in a timely manner then its time to look for a new one. I also respect your comments...many people just sit back and take it. I myself believe we are all CONSUMERS of HEALTH CARE and as such we must remember we have a right to good service.
    I do not think it is a bad idea to place a 'reminder' call to the doctors office if you have not heard back in lets day 24 hours (or less if it is a more serious matter). By simply placing that 2nd call you make sure that your 1st message was not misplaced - doctors offices are busy places you never know if something failed to get to the person you left the message for - I think that will clear up most matters of unreturned calls... IF that is not helping...find a new doc by all means.

    Best wishes,
    Lisa

    Leave a comment:


  • Sarah
    replied
    mostly true

    Dear Cynthia,

    You are right that -most of the time- if a doctor is non-responsive once, they will be again and again. It just so happens that this one example was an abberation from the norm.

    Also, the HCM specialists the HCMA recommends are very responsive, and much more than any local doctor I've ever heard of --but for a small few.

    Sadly, your experience with your local person is very typical.

    I think you will be pleasantly surprised by the Tufts-NEMC team.

    S

    Leave a comment:


  • cynthiaG
    replied
    Originally posted by bryan
    I have to agree with Lisa andSara. While doing "drug therapy" over the phone with Dr. M Maron there was only once that I had to call the office more than once. It wasnt a big deal to me, as I just thought it was he was probably very busy. Other than that he would call back within the hour I called. Personally I dont think I can say enough about the staff at NEMC. I think they are great.
    I haven't been given a name yet in Boston, however, I think that that's where I'll be going. What are they doing for you? I'm sorry, I would have to go to your original message. I don't remember. I know I went on about doctors not returning calls and as Lisa mentioned, I know they are human, etc. etc., but when a my preimary care doctor says to me"you may have congestive heart failure" and refers me to have an echo done and she herself said that she is not going to sugar-coat this, I thought being my primary care physician, that she would be taking a proactive role in my ordeal. she didn't. They should oversee and coordinate all testing, etc and be in touch with the specialist. Not even a phone call to me just to ask how I was doing?? I expected at least that. Anyway, I've got a take charge doctor now. Good luck with everything

    Leave a comment:


  • bryan
    replied
    I have to agree with Lisa andSara. While doing "drug therapy" over the phone with Dr. M Maron there was only once that I had to call the office more than once. It wasnt a big deal to me, as I just thought it was he was probably very busy. Other than that he would call back within the hour I called. Personally I dont think I can say enough about the staff at NEMC. I think they are great.

    Leave a comment:


  • Sarah
    replied
    doctors

    Dear Cynthia,

    The doctors that Mary referred to are actually usually really good about getting back to people and have had many good things written about them --and I suspect that the group you see in Boston is the same set!!! Tufts-NEMC, right?

    S

    Leave a comment:


  • Lisa Salberg
    replied
    cynthia,
    I would tend to agree with you with...however you must really look at the manner in which a doc is being unresponsive and over what time period. Doctors are human...they have sick days, vacations, and lives of their own... so if they do not jump they may be busy. OR as I have found with several of our HCM experts they may be doing some research to find out how to help you.
    If several calls go unresponded to YES...you may want to find a new doc...I have made that recommendation many times to people over the years. BUT if the doc did not call you back on one occation...or it was delayed by a day then lets be real...they are people too. IF YOU HAVE AN EMERGENCY MAKE SURE YOU TELL the person taking the message CLEARLY THIS IS and EMERGENCY!!!
    That is my 2 cents....
    Lisa

    Leave a comment:


  • cynthiaG
    replied
    reply to toogoofy

    My experience is, if you have a doctor that is unresponsive, he will ALWAYS be that way! Get yourself another doctor. I did. A new primary care physican . He is the best! And it just so happens he has expertise in HCM! I waited 7 weeks for them to compare a recent echo to one I had in 1998. I was fed up. If it wasn't for my phone calls to them, I would have still been waiting! Now my new doctor is already setting me up to see a HCM specialist in Boston. He ran bloodwork to check my thyroid level (I'm on Levothroid) which NEITHER of my previous doctors did...he said that it was VERY important to make certain it was at the proper level . He is fantastic. He told me as I was heading out the door, that we will get to the bottom of this. (I had fluid build-up, congestion, etc. in mid-November. So, PLEASE...there are plenty of good doctors out there...DO NOT HESITATE! good luck!

    Leave a comment:


  • Reenie
    replied
    Mary,

    I'm glad you talked to him. Let us know how it goes after you get used to the new doses.

    Reenie

    Leave a comment:


  • Toogoofy317
    replied
    I finally got a hold of Dr. Maron last night. He called me around 7:00 p.m. I was stunned. Doctors in Florida if it is after 4:00 forget about it. He said that my bp was too low to tolerate that much verapamil so he cut it in half to see what happens. he said it should help with the dizziness and fatigue. As far as the elevated enzyme levels go he said that it was an hcm thing and that it was ischemia that was taking place. He explained all about the micrscopic arteries that are probably in dissarray because of the hcm and that sometimes they cannot supply the enlarged heart with enough oxygen. Makes sense. My mind is a little bit more at ease.

    mary s.

    Leave a comment:


  • Dolly W
    replied
    Mary,

    I was on a lot of verapamil and it wiped me out. It kept my B/P pretty low too. All I can tell you is that if you feel bad, keep calling the doctor till you get results. Hope you feel better soon.

    Leave a comment:


  • Lisa Salberg
    replied
    CALL HIM if he is not available ask to speak to Dr. Udleson -

    If you need me ...call you have the #
    Lisa

    Leave a comment:


  • Sarah
    replied
    Call

    Dear Mary,

    Call. That is what he is there for ---for you to call when you are sick.

    Verapamil lays me flat out. You could just be on too much for your system.

    Let us know what happens and take care,

    S

    Leave a comment:

Today's Birthdays

Collapse

Working...
X