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doctors, whom handles what???


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  • doctors, whom handles what???

    Ok, I got 2 cardiologist, and It seems like they never communicate, and I was just wondering who's supposed to handle what? I know my specialist is more important, but like when I have a problem whom should I call first? Whom should handle medication changes? and when I end up in the ER, the ER never wants to call Cleveland, they are only interested in the local doc. being called. I have even been sick and called both doctors before (because of feeling freaked out about being ill) and one doctor has his nurse call in the past and chew me out for talking to the other, as if I was just out to insult someone. ( I don't see that doc no more)
    It seems like anymore I am confused about who should be called and who calls the shots, being how nobody talks to each other.

  • #2
    I would think that your local doctor is your first line contact person. If things aren't handled well by him, then call the specialist. If I'm wrong, I hope someone else will post to correct me.


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


    • #3
      Great question Jen. Just before Christmas I went to Cleveland to see Dr. Lever. So now who am I supposed to touch base with when I somethijng goes wrong? I am reluctant to give up someone who is right here, but really like the specialist angle. I would be interested in hearing from others.

      God Squad co-moderator
      Nothing is as gentle as strength and nothing is as strong as gentleness


      • #4
        I don’t think there is a correct answer to this one. I can only tell you what I do with my flock of doctors. (I have 2 cardiologists, a PCP, nephrologist, endocrinologist, neurologist, orthopedist, high risk caseworker, and a few others that come and go – like my pulmonologist, dermatologist, ophthalmologist and gastroenterologist. That’s eleven doctors – plus the group my wife uses.)

        I have MSN Word, with the capability to print letters at my computer plus the ability to fax the letter to whomever I wish. To avoid leaving a message with a doctor’s front office staff to abbreviate and pass on – usually garbled – I write a letter and fax it to the doctor I want to communicate with. That way I can say exactly what I want, - and that’s the way they get the message.

        Now, beside the doctor I fax to, I also list all other interested doctor’s at the bottom (CC and send them copies of the letter. I will never send to one cardiologist without including the other. I will always include my PCP (who renews my prescriptions) and my high risk caseworker, plus anyone else who would be interested in what I am writing.

        Periodically I will also issue a Status Report including my recent blood tests, my current drug list and doses, any x-ray reports, etc. – plus the way I feel and how I am coping with the current situations. This way I keep all doctors up to date and in the picture. I have had a number of doctors and most nurses say they appreciate these messages, as it makes there job much easier. I prefer doing it because any conflicts would be highlighted and addressed much sooner then otherwise, and I feel a lot safer with all my doctors working from the same page.

        Hope this helps clear the picture for you.


        • #5
          Burt, I like your idea of faxing letters to your doctors when you have a question or problem, hate how things seems to get all twisted by the time the message gets to the doctor, plus with your idea its also in writing, I never thought of faxing. All the same I am also interested in hearing from others about whom does what. Handling 5-10 different doctors does get confusing enough by its self, I also have a lot of doctors, and it sucks trying to coordinate everything.
          it just seems so confusing on how is the most effective way to manage ones health care, its sometimes easy to have the tools ( doctors ) but not know how to use them to get the most effective health care.


          • #6

            In the past i have always contacted my specialist for issues that relate directly to my last visit with him, and use my local cardio for routine maintenance and face-to-face visits. When my local cardio sent me to Cleveland, he was in effect deferring to Dr. Lever for my immediate care (i.e. medication adjustments, surgical procedures) and has had no problem with my consulting him directly. Nor should he, since this is why he made the referral to begin with.

            As an example, i'm thinking now that after my myectomy, i can start backing off of the Atenolol a bit and cut my dose. I'll go see my local cardio for this, who will want to see how i'm doing, get my BP and maybe run a few tests, and he in turn will let Dr. Lever know what is going on. I will also send an email to Dr. Lever to let him know how i'm doing on the new dosage. It helps that all my cardios are good friends as well.

            Anything myectomy-specific however, i would of course call Dr. Lever's office directly. But now that i'm what you might call 'stabilized' and feeling great, i don't envision having to call Dr. Lever's office very often at all. I'll have an annual visit with him in June, but unless something happens, i'll do most of my follow-up now with my local.

            Take care,

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


            • #7

              Just wanted to send you good wishes. Hope the new year brings you better things than the last.



              • #8

                Just wanted to say I hope life gets a little easier for you in the future.

                For what it's worth, my opinion is that YOU are the one calling the shots...

                " Real Courage Is Being Scared To Death But Saddling-Up Anyway "


                • #9
                  the handoff

                  My experience has been that the local card is primary and he confers with the specialist on any changes to meds or treatments.

                  Ideally, they are acting as a team and making decisions together. It is better when you can see the local doctor and then he can talk about you to the far-away specialist in doctor-ese as opposed to the specialist trying to diagnose and treat over the phone.

                  The key is having a local doc who talks to the specialist. Insist or change if you have to.

                  take care,


                  (but I know what you mean. I was in the ER once and the doctor --not one I'd seen before--looked at me like i'd asked to see a garbage man when I mentioned calling the Mayo Clinic. Hello! It is the freakin' MAYO CLINIC. I didn't let that guy touch me.)


                  • #10
                    Nobody here referred me to see Dr. Lever, I think I found out about him from Lisa, thank God and I have never found a doc. that seem to care about talking to him about my care, and out of all my doctors they all seem to want to be in charge of making changes in my meds. and do not consult each other. I in the past have have changes made in meds that I found out wasn't the greatest move in my best interest, and past cardiologist sometimes didn't want to help me with getting "samples" or assistance in getting meds, when I knew that they had the ability to do so, and had to turn to my specialist (he couldn't understand why not) anyways I got rid of that other doc too. I will keep in mind to e-mail my doctor, as I go to keep him informed about changes and concerns.
                    I am an Ohio Medicaid recipient and that limits me to just a few doctors that I can find to handle my care and there for makes it seem imposable to find a really good doctor to handle my care.
                    That alone scares me that someday I won't have no coverage and won't be able to find a doctor to care for me, being the cost of living is so high alone.
                    But so far I have heard lots of good opinions and idea's here to help me manage what I got more effectively. I just wish my doctors would touch base a lil more often.
                    By the way does any one run into ppl whom can not understand why ppl like us travel to see specialist? I know someone whom has "cardiomyopathy" and she does not understand why I don't just stick to the local hospitals and doctors?? and we have also been trying to figure out what major differences there is in hcm compared to cardiomyopathy? and is cardiomyopthy easier to take of? Just wondering
                    Oh... and i just want to make sure I making good decisions in calling the shots... being it only takes one decision to cause life altering changes that you can't go back on to fix.
                    with all the doctors and trauma in my life I have found that I constantly feel confused.


                    • #11
                      car·di·o·my·op·a·thy ( P ) Pronunciation Key (kärd--m-p-th)
                      n. pl. car·di·o·my·op·a·thies
                      A disease or disorder of the heart muscle, especially of unknown or obscure cause.

                      Refers to any disease predominantly involving the heart muscle; cardio refers to the heart and myopathy describes an abnormality of the heart muscle.

                      Cardiomyopathy just means heart disease in simple terms. It encompasses a lot of different types of heart problems, but the main ones are hypertrophic cardiomyopathy, restrictive cardiomyopathy, dilated cardiomyopathy, and another one that I forget. Cardiomyopathy is a general term and we don't have enough information on your friend to know what type she has.


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


                      • #12
                        Hi Jen
                        I'm sorry to hear about the confusion in your medical treatment.

                        I'm so fortunate. My cardiologist, family physician and dentist keep "in touch" with each other concerning my health.

                        When I'm feeling CHF, I go to my family physician and he determins the amount of diuretics I should be taken. If this treatment doesn't work, he calls my cardiologist and has a consultation with her.

                        When I must be hospitalized, my cardiologist calls my family physician and keeps him updated as to what has happened while I was in the hospital and what meds were changed. Also, requesting that he schedules a check up with me in a period of time.

                        My point is, my cardiologist and family physician do keep in touch for the best treatment for me.

                        Maybe you should contact Dr. Lever and ask his opinion. Having you so confused certainly is not helping your health.


                        • #13
                          Hi again Jen,
                          Why not try writing to the Ohio Medicaid office and ask for a list of doctors in your area that accept Medicaid – with emphasis on cardiologists and any other type of doctor that you have but are not happy with. I don’t know if they would have such a listing, but it is at least worth a try.

                          Next, what I do when I start with a new doctor I tell them I expect them to work with any other doctor I have. If they do not agree to do that I replace them. (A couple of warning shots might work if there is a problem changing from a doctor that doesn’t want to join the ‘team’.) Then with the faxes, I always include everyone who would be interested in what I am writing. This keeps everybody together.

                          An example is my nephrologist. He is my fourth one, and has this strange idea that he is in charge of my care, and I have no say in the matter. I am either approaching or already in end stage renal failure (it changes almost daily.) The doctor, on his own decided that I should be set up for Hemodialysis, and ordered a surgeon to build a fistula in my arm. We never discussed this choice or Peritoneal Dialysis or Transplant, or the pro’s and con’s of each choice. Of course I checked it all out on the computer and tend to agree with his decision – except I am still examining the alternatives further. The one thing I will not abide is his ‘take charge’ attitude. We have addressed this issue in the past, and I guess he has selective deafness because he will not change his attitude. I will have a battery of tests run, of which I will get copies, and will see him again at the end of the month – for the last time.

                          While in the hospital with renal failure just before Thanksgiving I met and talked with an associate of his, who gave me more information in that three minute talk then my current doctor ever gave me. I will be switching to this doctor – he talks straight from the shoulder and lets you know exactly where you stand. I am sure he will also be happy to discuss any available choices I have, and guide me in MY choice of which to select.

                          It is real tough to build a group of doctors who will work together with you, and each other, to give you the best possible care you can get. But it is something which must be done. Let’s face it, in the final analysis it is your health and life itself we are talking about. Good luck Jen – keep your spirits up. It is your first line of defense.


                          • #14

                            I went to see Dr Barry Maron on my Cardio's request and was very pleased, as far as meds are concerned my doctors talk to each other, Dr, Maron talked to Dr. Gilligan and Dr. Gilligan talks to my primary Doctor and then i talk to the pharmacist about the different meds being they went to school to study on all meds, if your doctor's don't communicate with each other then they are just hurting themselves as well as you, it is like you not know what the left and right hands are are doing

                            I hope you get all this straightened out and stand up to these people, i tell my doctors they way i would prefer it done, i mean after all this is your life and you have that right Take Care JEN

                            Diagnosed 2003
                            Myectomy 2-23-2004
                            Husband: Ken
                            Son: John diagnosed 2004
                            Daughter: Janet (free of HCM)

                            Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9


                            • #15
                              Shirley, you sure are lucky. I am having the same problem as Jen. And it seems my doctors all have a big ego to boot. Some of them know I rely on Dr. Shah's expertise for my disease and it irks them. They seem to refuse to consult with him or anything. Well...not my main cardiologist down here but the EP he sent me to wouldn't talk to him. Now my main cardiologist tells me if I need a pacemaker/icd to get it done up by Dr. Shah which is quite a drive for me to come back after having that installed etc. And he made fun of Dr. Shah long distance telling me to hold off on the icd or not in agreement on the pacing. Said something about him deciding what to do from the phone etc and not even seeing me yet....I don't know if making fun is the correct terminology but he was being sarcastic. I really like the guy tho.

                              I am upset about all of this and I don't know what to do. Right now I am on hold waiting to see Dr. Shah in 2 weeks and get his opinion on the icd.


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