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Doctor Rant!


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Toogoofy317 non-obstructed hcm, AICD 11-01-02 and 10-6-05 Find out more about Toogoofy317
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  • Doctor Rant!

    Can some explain to me why it is that my world renowned cardiologist thousands of miles away has time to talk to me, take time out to talk to other doctors, and have compassion. When my local guy less the ten miles away can't be gotten a hold of, cares only about numbers, and talks down to me like I don't know anything about healthcare!

    Secondly, why are we as a people think that a good doctor is one who just knows the problem but couldn't "talk" to you to save his or her own life." I even was that way myself when I first went to Boston. "As long as he fixes me I don't care what his attitude is!" Then when I found out that he was a human too and actually cared about me as a person and not just a beating heart. I realized that it really doesn't take that much more effort on their part to explain it to me or just to ask me how are you doing. Really how long does it take to say how are you? Three of my doctors do it all the time and guess what their practice didn't come to a screeching halt!

    I believe now that we are becoming more educated about our health and what is going on that we should expect more from our doctors. We should not let our doctors go with sloppy performance, or lack of attention, or a horrendous bed side manner. In every other aspect we expect people who provide services to be polite and perfect. I mean how many times have you gotten a waiter that was either rude or inatentive? What did you say well he was awful, not nice, or didn't pay enough attention to me. His job is to give you your meal not be nice to you right? So, why are we so attentive to the person that we pay 8.00 an hour for versus a sloppy cardiologist who charges us 85 bucks for a ten minute visit!

    I had to get this out! Getting off of my high horse now!

    Mary S.

  • #2
    Sorry, my ranting kept repeating itself! Could someone take care of it please!


    • #3
      You are absolutely, positively, absitively 100% correct. The good ones take the time to say hello and *hear* what you have to say. Dr. Nishimura and crew are like that at the Mayo Clinic and I've been fortunate to have a local cardio that's listened to me for the past 7 and 1/2 years. I've been through several PCPs, however, including the one who originally dx'd me with anxiety!

      Rant on!

      --Living life on the edge .. of a continent!
      Charter member: Tinman Club


      • #4
        Originally posted by Toogoofy317
        Sorry, my ranting kept repeating itself! Could someone take care of it please!
        You must've wanted to be sure you were heard! I took care of it.


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


        • #5
          Mary my now ex-cardiologist was so rude and insensitive that we had a screaming match in his office and haven't spoken sense!

          I might not have a cardiologist anymore but I'm here to tell you it was worth it just to let him have it at the top of my lungs. I could hear him berating the man before me from the waiting room for taking too much of his time up. Plus he was running late anyway and he didn't say sorry. I don't mind if he means it or not, he can just fake it but don't be late for an appointment and pretend you're not late, it's annoying. I had my husband with me for the first time as well and when I introduced them he didn't even look at him much less shake hands. And THEN he told me not to waste any more of his time he wanted to get through our appointment quickly he had a hard day... like HIS day was more important than mine but (as you rightly point out) I'm the one paying him for his "services" which include all the things that make a doctor worth seeing (including some bedside manner thank you very much) so mark me down for the agree 100% side too.

          *big hugs* for everyone who's ever had a rude doctor... it can make you feel SO HELPLESS and frustrated. Last time I was in for my echocardiogram at hospital the technician even agreed that everyone in town knows this guy is rude and unpleasant... which it's not every day you can get medicial people to agree out loud like that, but there was just no use denying it on this guy.

          You'd think a heart doctor would know better than to upset his patients wouldn't you? Hello?
          »-(¯`·.·´¯)-> HCMA LOVES YOUR HEART <-(¯`·.·´¯)-«
          Murmur detected in childhood (3rd gen, 3 clear siblings)
          Chronic dyspnea, dizziness & palpitations (21+)
          Echocardiogram showing 3X thicknesses 2000
          Cardiac CT 2009 no significant obstruction or plaque (Yay!)
          Cardiac MRI 2010 showing septal scarring (Boo!)
          Verapamil 280mg a day (metoprolol starved extremities)
          ICD MAR 2010 - Canadian Trials St. Jude FORTIFY


          • #6

            You are so right that is why i decided to go 2 hours away to see Dr. Gilligan he listens and seems to care for me and these doctors 2 blocks from me makes me feel like i'm wasting their time , put the stethascope on my chest for 3 seconds and says i'll see you in 6 months and leaves, i 'm really starting to beleive it is because they are afraid to treat us in fear of getting sued which is last thing on my mind i just want good quality treatment and someone to listen to me, I hope you get things worked out soon Hang in there ok

            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


            • #7

              Okay, here is one. I had some weird things going on with my feet, they were very swollen and extremely painful. My regular doc (A first class doctor in my book) had no idea what to do so he sent me to see a kidney specialists because of my lab work. The kidney doc was very nice to me until she listened to my heart, (I had been down with a virus, running a high fever and I knew I was dehydrated, I had also told her I had hcm) I do not think she meant to say "damn", but she was pretty impressed with the mumur.

              After all was said and done over the period of 3 weeks the doctors do not know what was wrong, probably just the remnants of the virus playing havoc on me. The kidney doctor called me yesterday and she made the mistake of saying that since I had IHSS I needed to get an appointment with my Cardio doc. I went into the Lisa Salberg mode and quickly corrected her on the difference of what IHSS meant and the better more correct was hcm. After I went on my little rant I apologized and told her about this web site and how people do not think I have a problem and think it is all in my head and that I am always doing my bit to educate people. I get to see the kidney doctor again in a few weeks and it will be interesting to find out if she remembers what I said.
              Every day is a present I was diagnosed when I was 38, I have asthma which made me assume it was ashtma, getting old, and being about 30 lbs over what I should be. I have days when I would rather not know. Myectomy club 3Jan06 CCF, my life is so much better!!!!


              • #8
                I hear ya! -- Joining the rant....

                When I came home from Cleveland (after my Myectomy), I called my local cardiologist's office to schedule an echo and a post-op follow up visit. On the phone, I was given the scheduled times for the echo and the doctor's appointment.

                Then, when I show up on time for my echo and doctor's appointment, the people in the office said that the doctor did not order an echo so it would just be an office visit.

                I told them that when I made the appointment weeks ago, I said that I needed to have an echo done because this was my 7th week post-op follow up.

                I told the people in the office, the lady on the phone even told me the time scheduled for the echo, so I thought "okay I have an echo scheduled" -- nope

                But when I went in for my appointment, they kept saying... "No, the doctor did not order an echo." -- huh?

                I told them, I just paid the receptionist $900. for an echo when I walked in the door.

                I had to wait an extra hour for them to get an echo ready for me.

                They don't know what they are doing over here.

                Also, while in the examining room, I had to SPELL the word Myectomy and explain what it is to my cardiologist's nurse. She had no idea what this surgery is. - wow.

                And the whole time I saw the cardiologist, he kept saying "Well, I'm glad they were able to help you in Cleveland." That's it.
                And, I asked him to up my dosage of Verapamil because of the dosage they wanted to give me in Cleveland.

                I think that they are just clueless over here when it comes to HCM/HOCM.

                I do mean any disrepect to any of the cardios here in Phoenix, I know they went to med school for many years and such, but boy, they don't know much about this heart disease or how to treat it.

                Thank God for the HCM/HOCM Specialists.

                49 yrs. old
                Diagnosed at 31.
                Cardiac Arrest 2003, RF Ablation in AZ, no positive result -
                First ICD 2003 - In 2006 lead went bad, abandoned lead, threaded new one & new generator
                Myectomy 5-5-05 at The Cleveland Clinic - Dr. Lever & Dr. Smedira -heart surgeon.
                Currently have Grade 2 Diastolic Dysfunction with pulmonary hypertension & pulmonary edema.
                My brother passed away suddenly at 34 yrs old from HCM.
                2 teenage children, ages 17 and 15.


                • #9
                  Thought I would renew this topic. Because if I don't get this last three weeks off of my chest I'm gonna explode!

                  Why is it that when doctors can't figure out exactly what is wrong with you the first thing they go for is it's all in your head or its depression or anxiety. I think if I hear one more doc say it's anxiety I think I may have an anxiety attack.

                  As I had mentioned earlier about my experience in Gainesville I had never encountered such a cold person. They absolutly refused to talk to Dr. Maron. Why on Earth would they have a problem doing this? After they refused that I was also told I have a very "mild" form of HCM because I am non-obstructed. I also found out that the echo tech completly screwed up my echo. At Gainesville my septum "measured" a whopping 1.3cm just two weeks earlier it was measured at 2.4! My average has been 2.2. The echo tech was also a jerk he shoved the transponder so far into my rib cage that I was sore the next day. He even said "you don't have HCM you have ASH. Which I later found out to stand for Asymetrical septal hypertrophy. What is the difference? I mean he's had all of these years of training right to diagnose me.

                  I was also livid when the doctors told me that people with non-obstructed HCM cannot have symptoms! This is a freaking research hospital does that mean I have to bring them all of the research articles on HCM to prove to them that yes us nonobstructed ones can have symptoms too!

                  Then these wonderful people brought in the doctor I absolutly detested in to consult on the case! I told the transplant doctor at our first visit that I did not want this doctor on my case. I was trying to be civil about it and not go into details. But, I guess I should have told him that she almost killed me! So, imagine my delight when she walked into my room. I guess I should have lost it right then but I wanted to be a good patient and show that even when I am stressed that I don't have these stupid anxiety attacks! After talking to her for a few moments guess what she wanted to do? That's right another experiment. She thought that Viagra would help women with microvascular disease! I have a hard time keeping my bp above 80 these days and she wanted to give me a vasodilator. I expressed my displeasure with the transplant doctor the next day. His excuse was "she's the only one that knows about hcm" we are just consulting she has no say in the decision making process. Funny how the next day I was told there was nothing wrong with me and sent me packing.

                  Another thing I detested about this visit is that I didn't even get to hear the finding from a doctor. They sent in the PA. She said I wasn't a candidate for a heart transplant nor would I ever be. I guess in a way a part of me was let down but a part of me was quite happy I didn't need a new heart. But what she said next I believe is what sent me into an anxiety attack and solidified their opinion. She said " that giving you a transplant would be unethical" She also told me that I was out of shape and needed to do more and so they wrote a script for me to have cardiac rehab and they also gave me a number to a psychiatirst because they would be better suited to help my psychological problems.

                  So, now with this wonderful news in my record. My insurance company thinks I am magically cured! They also will not cover the experimental therapy because I do not have a problem. I'm also sure I will be denied disability again because it is all in my head and no doubt be able to work full time!

                  What on Earth can we do about these horrible doctors. Can we sue them for being overlly stupid? There has to be something we can do? I just don't appreciate being told the things I was told at a so-called reputable research facility.

                  Any ideas?

                  Mary S.


                  • #10

                    I'm so sorry you are having trouble yet again have you called Lisa maybe she can help you, I hope you have better luck then i did, They didn't tell me i couldn't have a transplant it is just not worth putting me on the list now because i would be put at the bottom of the list and that would be like not being on the list at all

                    But as far as counseling I would take it, Because you will have to go through counceling if they decide you have to have the transplant that way you are one step ahead of them

                    Please don't give up, Believe me I wanted to too but if you want to live you can't give up

                    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


                    • #11
                      This is a very sensitive topic for me, because I suffered for years, and even had surgery, all because I couldn't get a Dr to run the neccessary tests.

                      At 17/18yrs old, my symptoms began. Chest pain, SOB, lightheadedness.
                      I didn’t look like the stereotypical heart patient, I had no family history nor did I have a murmur.
                      An abnormal EKG was blamed on a faulty machine and never put into my file.
                      BUT the label ANXIETY was. Again, and again.
                      I later had a chest Xray and a breathing(asthma?) test. Both normal.

                      Finally one Dr thought he had it all figured out and suggested I have a breast reduction. That was sure to be most of the cause for the chest pain.
                      I was 20 at the time. I went through a battery of pre-op tests, including an EKG. I assume everything came back normal.
                      I had the surgery. It didn't help the pain, but it did leave me with severe scarring and nerve damage.

                      Stumped, they went back to the original idea of anxiety and recommended I get therapy. I did.
                      I took antidepressants.
                      My symptoms got worse and worse, until I was SOB just moving around the house, never mind climbing stairs. I felt horrible everyday, and was sinking into a deep depression.

                      So they did another EKG. Abnormal=Faulty Machine.
                      My dosage of antidepressants was upped.

                      Then a tragic event took place, which actually DID cause me anxiety and panic attacks.
                      And one day, with my heart racing and skipping , the anxiety, chest pain and SOB, I got the mother of all panic attacks, and didn’t know if I was going to make it to the clinic. I thought my heart was on the verge of exploding.

                      My heart rate was over 160bpm and finally, a murmur was heard.
                      I was sent for an EKG, then another. Five in total that day. My heartrate went as high as 190 during one of the EKG's.
                      FINALLY I was sent for an echo. I had never heard of such a thing. I was scared senseless, but relieved that the waiting game would soon be over.
                      One test, if someone had only thought of it sooner.
                      The need for awareness is so very important. (Thanks HCMA).
                      I was a month shy of my 25th birthday. Almost 7 yrs to diagnose HOCM.

                      I had three really good yrs, with only a minor blip now and then. But when my symptoms came back, including a few new ones, I was reliving the Dr. nightmare all over again.

                      I think the Dr’s are a big source of my anxiety; I have lost faith in them. For 6+ years I new something was wrong. They didn't.

                      To end with, I want to share part of a conversation I had with a cardiologist I had switched to after issues arose with my regular cardiologist. I have since switched back.

                      He(Dr X) looked at my file and noticed my weight.
                      “That’s not a very healthy weight for someone with a heart condition.”
                      ‘I know, but its hard to get exercise when I am so SOB and tired all the time.’
                      ‘Then you are eating too much.’
                      ‘I watch my diet fairly well.’
                      “If you aren’t losing weight, then you are still eating too much.”
                      ‘I guess, but for the amount of excercise that I have been able to get lately, I'd pretty much have to starve myself.'
                      “If you are not able to excercise, then you are burning very few calories. Calories in must be less than calories out. Its as if you are carrying two great big suitcases around with you wherever you go. Pause You must have low self esteem being at that weight. If you lost weight I imagine you'd feel better both physically and mentally.”
                      SHOCKED…I agreed.

                      Then he noticed the 8 yr age difference between my boys and wanted to know why. THEN, then, he asked me if they had the same father. What does THAT detail have to do with HOCM?? I answered him nonetheless.

                      “Yes, they have the same father. I was really sick for several years until I got diagnosed. Then I had a few good years.”

                      After the appointment, we leave his office and he walks with me to the front desk to set up a follow-up appointment. My sister who had driven me to my appointment(I have given up driving ), stood up and walked towards us.

                      “Is this your sister?”
                      Pause. He looks at her, then looks back to me.
                      “Is your whole family overweight?”

                      My sister, bless her, had enough grace not to comment. But she was humiliated. I was too.

                      Coincidentally, I was taping the appointment. (My memory is horrible.) All but the conversation outside his office was recorded. My sister and I laugh about it now, but at the time it was embarrassing.

                      A Dr with manners and the capacity to understand his patients would be a refreshing change. I don't hold my breath.

                      Take Care,
                      It's not what you gather, but what you scatter that tells what kind of life you have lived.

                      Dx in Feb/99. Obstructed. No ICD, no surgeries, no family history. 2 sons ages 14 and 6.


                      • #12

                        I am very sorry to hear that this has all happened to you. Sadlly it is all too common a story for many of us with HCM. I had to fight most of my life through the humiliation and dismissive attitude of many uninformed and rather stupid ignorant doctors that somehow had MD at the end of their names. It was a battle frought with obsacles that often left me feeling that life this way was not worth living . I felt like a hypochondriac. Additionally these uninformed docs weild a lot of power and influence by writing in our charts their unexpert summaries.

                        The things I had that were most powerfull were my determination , investigational interest , knowledge and belief from somewhere deep inside that I was right and they were wrong, support from those around me that these things were really happening to me physically and not mentally and finding the HCMA / Lisa to validate and expediate my journey . Even after diagnosis and inital treatment there was a replay of sorts on a higher level of sophistication. Even through a recent experience I have had to rephrase incorrect words and descriptions stated by doctors in reference to my heart problem.

                        I believe for those of us with HCM it will be an ongoing battle for a time longer before HCM is understood.

                        Hang in there and be well informed , read ,read and read, ask questions here and be as well versed and acurate as poossible to help educate those less informed and who sadly often dispell eroneous information about HCM.

                        You are not alone with us.

                        Dx @ 47 with HOCM & HF:11/00
                        Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
                        Lead failure,replaced 12/06.
                        SF lead recall:07,extracted leads and new device 2012
                        [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
                        Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
                        Genetic mutation 4/09, mother(d), brother, son, gene+
                        Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin