What they won’t tell you at a teaching hospital…

This post from an atrial fibrillation support group:

“I had an ablation at Johns Hopkins this past week and am very upset at the outcome. I haven’t had any [afib] symptoms but experienced severe shortness of breath.  After xrays and tests it was discovered that the phrenic nerve was damaged and I now have parylasis of the right diaphragm. I have a continuous dry cough and such SOB I can’t lay down to sleep. I can’t even sniffle.

“I’m told if it doesn’t resolve in 24-48 hrs [which it didn’t] that it may take 3 months to a year to recover and that is not guaranteed.. I’m very dissappointed and confused. I’m also on amiodarone and worry about lung involvement with a weakened respiratory system. I was released after 4 days and an appointment for 3 months from now. I don’t know where to start to figure out what I need to do now to make this better.”

That’s what happens when you get clipped at a teaching hospital—the bum’s rush. This was supposed to be a safe and minimally invasive outpatient sort of procedure, and here you are at home after an unexpected 4 day stay at the hospital; wounded, scared and confused, with more questions than answers and hardly able to breath.

The person who caused this situation is Dr. Hugh Grosvenor Calkins, who is,  according to the victim of this story,  the best doctor at the best facility in the land. That is what they would have you believe, and that is what most of us do believe. People want to believe it, and once you’ve put your life into the doc’s hands, you have got to believe it.

As for the complication, Dr. Calkins has reassured you that he himself did the procedure and that it was a very rare thing that happened in your case, so rare that he didn’t think it worth mentioning. And actually, when you think about it, it’s sort of your fault because your anatomy is different than everyone else’s. Your atrium is smaller than a normal person’s, or the walls of your heart are thinner.

“I was informed of many side effects but not that one. When I asked why I wasn’t informed I was told it is rare.

“Also talking to the radiologist and Drs. and looking at the ct scans and TEE results I have an abnormal heart anatomy. Things are not where they are supposed to be. "

It makes you feel bad somehow, that America’s Best Hospital has deemed that you have odd body organs.

Maybe Hugh Calkins is behind in his journal reading, otherwise he would have seen that phrenic nerve injury is “a well-described complication of AF,” and he would have read about “currently available tools to avoid the complication.”  Or maybe a doctor who was training for his fellowship in electrophysiology did the job. After all, that’s what they do at a teaching hospital, and the head of the EP lab at Johns Hopkins is on record as saying that for ablation procedures at Hopkins, “the attending shows up to be there during the burn.”

What did you expect?

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18 Responses to What they won’t tell you at a teaching hospital…

  1. I am also a victim of phrenic nerve palsy. Hope may be found via Dr. Matthew Kaufman in Shrewsbury N. J.

  2. Linda Stevenson - husband Garry says:

    My husband is a 67 year old who starting having problems in 2010. After a year of emergency room visits they finally pinpointed that he had atrial fibrillation. In the beginning the heart would go back into normal sinus rhythm, but as time went on it would not. We consulted with cardiologist in Twin Falls, Idaho, then in Pocatello Idaho. He had multiple testing to rule out heart disease. The Pocatello Cardiologist have a Rhythm specialist who comes to from Salt Lake City to Pocatello, ID once a month. After trying medication to keep it in rhythm with no success, the Salt Lake doctor recommended an ablation. My husband has a-fib with dextrocardia, and we discussed this issue with our doctor and he assured us that he could do the procedure. We had a first ablation and months later a second ablation and both times trying different medications to try to keep the heart in normal rhythm. After no success with these two procedures and battery of toxic medications, our doctor recommended an AV node ablation with pacemaker installation. We pondered this option for months. We asked lots of questions – one being – “have you ever done this procedure on a person with Dextracardia; he said no. We asked if he knew of any surgeon who had or if he knew of someone with whom he could consult. He said no, but he was sure he could do it. In August 2012 my husband had the procedure done in Salt Lake City. After the procedure the physician came to talk to us and said that it was difficult because of his dextrocardia and the equipment being set up for persons without that condition. But, he said he “thought” he had got it and just for good measure left a place on the outside where they could hook up a wire if needed without going through the artery again. (Forgive me I am educated in correct medical jargon-trying to explain it as best I can.) He suggested that our local physician monitor my husband and within a couple weeks he discovered a problem. My husband was very weak, and after testing and consulting with Salt Lake doctor he advised us to come to Salt Lake as we were in “limp in mode” When we got there they prepared to do some kind of procedure and the technician for Boston Scientific Pacemaker adjusted the setting, and he felt great. They adjusted setting several times and each time the 7 year battery life was reduced because the increase in voltage. Our Surgeon told us that there was nothing more he could do for us, that what he did was not at fault and that my husband needed pulmonary testing because he was so short of breath. Short of breath, as in hardy able to shower, or to walk from the garage to the house. We finally made an appointment at the Mayo Clinic and the Rhythm Specialist there said he was not a “text book case” and adjusted the Boston Pacemaker and the next day my husband was able to jog. But it didn’t last, so went through procedure at Mayo Clinic and they were able to properly place the wire and set him up to biventricular paced. Now——-we are still fighting extreme shortness of breath and fatigue. His legs literally buckle under him by the end of the day. Wondering after reading this article, if it might be possible that his phrenic nerve was damaged during the procedures he underwent, especially with the dextrocardia condition. We don’t know where to turn. He needs help. Any recommendations?

  3. Sandra Bauer says:

    Don’t ever get a cardiac ablation!!!!! They tell you the lab director will do it then they have their fellow and he pokes a hole in your ventricle and causes a cardiac tamponade. He caught me with the echocardio camera that was on one of the catheters. After all he had three catheters in my one leg. The thing about this is it is considered the normal risk for this type of procedure, therefore it falls back on you taking the risk. Wish to heavens never did it and would never have done it!!!!! Forget cardiac ablations if anything goes wrong it all falls back on you!!!! Thank you for the venting now that I have ruined my life!!!!!

  4. Sandra Bauer says:

    I have a bad case of pericarditis from the cardiac tamponade they created when they punctured my ventricle and A Fib that I have never had. I have been told it will take months on bed rest with heavy drugs anti- arrthymics and other cardiac drugs to keep my heart at rest to heal. Hopefully at the end of all this my heart will heal and the AFib will go away without damage. My days are spent lying around keeping my heart calm until it heals.

    • Anonymous says:

      sandra
      please get well
      never helps to plan your suit from the hospital room. there will be plenty of time for that

  5. Sandra Bauer says:

    What about malpractice is reached because fellow using echocardiogram camera on catheter is not schooled in inserting catheter at the right angle and in doing so in his learning experience nick my ventricle. Not malpractice?

    • Anonymous says:

      Sounds like malpractice to me. I the director of the lab told you he was going to do the job and then he handed it off to a trainee without your informed consent…

  6. Sandra Bauer says:

    I am damaged and lawyers telling me I should have stopped the procedure.
    I didn’t know. Boy would I have!!!

  7. Sandra Bauer says:

    I was told by the lab director he would do my ablation for me to my face. There was no question of a fellow doing it!

  8. Sandra Bauer says:

    I think why I am so upset and disappointed is that I really believed the doctor who was the lab director was truly going to do my ablation. I was assured by the head that he would let the lab director do his family instead I got his fellow and only the second time in five year poke in the heart! Very disappointed in docs.

  9. Mark says:

    Current guidelines dictate that informed consent consists of informing the patient of COMMON and SEVERE complications. Of which phrenic nerve injury is neither (in relative terms). Current incidence is 0.11 – .048% with 81% obtaining complete recovery.

    I encourage Dan Walters to look at the data and see that teaching hospitals have lower complication rates than private hospitals.

    Earl, malpractice is not defined as a bad outcome. Malpractice only occurs when the standard of care is breached. Example: Patient goes in for colon surgery and the aorta is accidentally nicked. Patients dies. Not malpractice. On the other hand, patient goes in for colon surgery and surgeon uses wrong stapler resulting in sepsis. Malpractice.

    • Dan Walter says:

      What data are you talking about Mark? The self-reported numbers in which patient injuries are routinely under reported?

      • Mark says:

        You are probably completely correct that adverse outcomes are under reported, however, what makes you believe that teaching hospitals under report more than private hospitals? Under reporting is likely the same, and may be increased at private hospitals due to less supervision, less care providers, who can each report a negative outcome, and less reporting by private attending physicians tending to private patients.

        By the way, here is one study comparing the two: http://journals.lww.com/academicmedicine/Abstract/2005/05000/Quality_of_Care_in_Teaching_Hospitals__A.12.aspx

        • Dan Walter says:

          “…adverse outcomes are under reported, however, what makes you believe that teaching hospitals under report more than private hospitals?”

          The question proves my point. You are asking us to believe that your dishonest data is not as bad as everyone else’s?

    • Dan Walter says:

      To reply to your comment that “Current guidelines dictate that informed consent consists of informing the patient of COMMON and SEVERE complications. Of which phrenic nerve injury is neither (in relative terms).”

      Tell that to the terrified patient person who was sent home with difficulty in breathing, no information, and a follow-up in three weeks. What explanation do you offer for that?

      And then there is this:
      “Maybe Hugh Calkins is behind in his journal reading, otherwise he would have seen that phrenic nerve injury is “a well-described complication of AF,” and he would have read about “currently available tools to avoid the complication.”

      The “current guidelines” on informed consent may be handy technical legalese which allow doctors to cover their mistakes, but I believe that a physician has a moral duty not only to inform the patient of a “well described complication,” but to also employ available tools to help avoid it.

      In the case above, neither was done, and if you read my book you will see plenty of proof that at this particular teaching hospital, at least, patient safety and informed consent take a back seat to corporate interests and the personal career ambitions of high-profile doctors.

  10. Dan Walter says:

    The point here is that the injured patient was not told of a recognized risk of the procedure, and that this is how they routinely conduct business at teaching hospitals.

  11. Dan Walter says:

    Well, Earl, here’s how you can tell that what I write is true: https://collateral-damage.net/source-notes/

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