I need some help.

[Toogoofy317]

I am really not sure what to do. Actually I'm not sure anyone knows what to do! I gave Dr. Maron a call in Boston because I have been admitted to the hospital twice in the past month for chest pain, sob, and dizziness. After the first admit he raised my verapamil to 480 daily. I think I have just went down hill since. I have no energy and the lightheadedness is getting worse. I called him again on Monday and he said he was not sure what to do next that he had to confer with Dr. Udelson. He was worried because my bp had been hanging at 90/60 and if they added anything it would most surly drop it even more. That was on Monday I have not received a call back as of yet. When I went to cardio rehab on Wednesday I had gained 7 pounds in one week the nurses said it was probably fluid retention.
I am not sure if I should go ahead and give Dr. Maron another call or wait . But I am really feeling miserable right now and I have work in two hours. don't know how I'm gonna get through the day at work. Any help would be greatly appreciated!

Mary s.

[Reenie]

Mary,

I think it wouldn't hurt if you called Dr Maron again. That's what he and his office is there for. It sounds like you should consider not going to work today, if you are weak and not feeling well. Please give them a call and let them know that you feel worse than you did when you called on Monday.

Reenie

[Sarah]

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

[Lisa Salberg]

CALL HIM if he is not available ask to speak to Dr. Udleson -

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

[Dolly W]

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.

[Toogoofy317]

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.

[Reenie]

Mary,

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

Reenie

[cynthiaG]

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!

[Lisa Salberg]

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

[Sarah]

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

[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.

[cynthiaG]

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

[Sarah]

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

[Lisa Salberg]

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

[Toogoofy317]

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.