I don't like to write about my own health problem - but it is a ready example and I already have another blog about it so here goes. I also don't need to worry about violating my own confidentiality. It involves a personal medical problem called paroxysmal atrial fibrillation. I have consulted 5 different Cardiologists and the rhythm problem is not due to valvular or coronary artery disease. It is probably due to excessive exercise - specifically exercise with sustained high heart rates. After a period of frequent episodes, I started taking a generic brand of flecainide 4 1/2 years ago and have not had an episode since. During that time I have had two episodes of influenza and 1 episode of acute bronchitis requiring prednisone therapy with no recurrence of atrial fibrillation.
Lately I have been seeing patients and about 40% of them have an upper respiratory virus and the various complications. I knew it was just a matter of time. Earlier this week I developed a cough, sneezing, facial burning, and a headache but no additional flu like symptoms. It is not flu season here, but respiratory viruses abound. Monday, Tuesday and Wednesday morning - I was awakened at 4 AM with an intense flurry of palpitations. Taking the pulse showed a pattern of 4 or 5 regular beats followed by what seemed like a pause or dropped beat that I recognize as the early transition (I think) to atrial fibrillation. In each case I drank a large glass of water, paced for a minute or two and I was back in sinus rhythm - the palpitations resolved. Initial BP check was about 130/80 with a pulse of 88 rapidly back down to 110/70 with a pulse of 58. The last readings are my typical baseline and I check them four times a day. I know how much physical, mental, and emotional exertion affects those readings and I try to stay cool.
When it happened Wednesday, I decided to do the responsible thing and take the day off of work and see my primary care physician. He did a physical exam, ordered labs and an ECG. Everything was normal. That is my ECG from that clinic visit at the top of this post. It is normal sinus rhythm with a slight bradycardia (less than 60 bpm). An interesting homage to artificial intelligence is that the ECG machine communicated with the electronic health record (EHR) and determined that there was no appreciable change between this ECG and one I had done 10 months ago. The cardiologist is out of that loop. The bottom line is that the tests were all negative and the plan was to see what happened and consider a Holter monitor if it persisted. A Holter monitor in this clinic is a 48 hour recording of the ECG looking for discrete events that might suggest a cause of the rhythm disturbance. It also allows the patient to mark any episodes of subjective disturbance on that record.
Yesterday morning I felt a little tachycardic at about 5 AM and got up and checked. Heart rate was 66 and blood pressure was fine. This AM, a flurry of palpitations wakes me up. They are gone in two minutes after pacing and drinking water. There was no chest pain or lightheadedness. In fact when I had the initial episode about 10 years ago, I was speedskating and my heart monitor showed a rate of well over 200 bpm. No chest pain or lightheadedness at that time and I drove to the hospital and told them I was in atrial fibrillation.
Today I respond to my primary care physician's note though the EHR and describe what happened. I recall that he is not in, so I go back to the EHR, agree that I can be billed if this is not a problem that I have been seen for in the last 7 days and attempt to cut and past my note to my primary care doctor into a separate email to his team. The EHR cuts me off because it says that I can only use 255 characters. It is the Twitter of EHRs. I edit it down and send it - no response to my request for the Holter monitor. I call the clinic and get on the phone with a triage nurse. The conversation goes something like this (not a transcript):
Me: (Relating the history and Holter monitor request).
Triage RN: "Well what is the emergency here? It is Friday afternoon, there is no way that we are going to get a Holter monitor today. It will be Monday at the earliest. Your doctor can call it in then"
Me (a little steamed): "Maybe you could suggest criteria that I can use to call an ambulance."
Triage RN: "What?"
Me: "You know - when I wake up from a deep sleep with this arrhythmia at 4AM tomorrow morning, what criteria should I use to decide when to call an ambulance?"
Triage RN: "I did not know it was still happening."
Me: "It happened this morning. That is why I e-mailed and called you. That is why I stayed home from work."
Triage RN: "Well in that case I will run it by one of the attendings who is here and ask them about what should be done."
After another call back to get more of the usual information about cardiac symptoms, the Triage RN called again and connected me with the Holter Monitor tech. I can apparently get in next Wednesday. He told me the entire procedure would take 5 minutes so I would only have to miss a half day of work instead of a full day. I did not pursue the obvious "Well why can't I just drive down there now and have it put on." Everyone must be scheduled. Schedules must be adhered to.
So that is where it stands tonight. All of the bullshit that passes in the press for medical news does not apply. There is no IBM Watson computer out there that knows more than I know about this condition or how to treat it. There is no personalized medicine. I have not encountered a single cardiologist interested in the genetics of atrial fibrillation or why I might have it. Most physicians assume I have neglected hypertension or have done something wrong with regard to my self care and therefore deserve it. I still encounter physicians who doubt that I have never smoked a single cigarette in my life - even though it is true. Hard to believe that somebody could bring this on by excessive exercise. Isn't exercise supposed to be good for you?
I am probably being overly dramatic. This is most likely a benign atrial arrhythmia. On the other hand - why am I so certain if my physician wants another Holter? I did a Holter and a longer event monitor 5 years ago. I run a heart rate of 130 bpm during 4 hours of exercise per week and have tolerated a sustained heart rate of 140 bpm from a medication side effect - calmly pacing and taking incremental amounts of beta blockers to slow it down. The final instructions from the triage nurse were to get to a hospital if a sustained heart rate of 120 bpm or greater and call an ambulance if chest pain.
Personalized medicine in the early 21st century is in many ways inferior to medicine the way it was practiced in the 20th century. In those days, there may have been an interested physician who said: "Spend a night on telemetry and we will see if we can capture the beats and figure out what to do about it." I saw those people being admitted when I was a medical student and an intern. That was before you had to be dying to get into a hospital and the admission rules were dictated by case managers. In those days personalized meant a long term personal relationship with a real physician who could make things happen.
Now like me - those people are sitting at home waiting for something to happen and guessing about when they should call an ambulance.
George Dawson, MD, DFAPA
Disclaimer:
Don't try any of this at home. This is not medical advice. Only your personal physicians and consultants can give you that advice.
I am a psychiatric PA in the twin cities area, a transplant from California where I started out as a PA working in Ophthalmology and then Urgent Care Medicine for 20+ years. I enjoy your thoughtful Real Psychiatry blog, and read with great interest your experience with PAF. I too have struggled with PAF.
ReplyDeleteMy first trip to the ED for PAF was when I was 30 in California although I remember when I was 12yo having an episode of something that in retrospect was likely AF ( it came on when I was riding my bicycle up a steep hill and lasted for about 3 days and spontaneously converted). As an adult with episodes of AF, I too was found to have no "structural" (valvular) heart disease, no hyperthyroidism, was and am not a cocaine user, nor did I consume alcohol or caffeine for at least 15 years after this episode at age 30. Long considered to be a benign, non-life threatening arrhythmia, this is where the concern of my cardiologist and internist initially ended--I was otherwise young and healthy and they legitimately had plenty of patients with serious life-threatening conditions that were more pressing. One colleague of my cardiologist once at my bedside in the ED during an episode chided me for scaring my pregnant wife and told me to "stop doing this" to myself (this same cardiologist some years later apologized and confided to me that he had subsequently developed PAF and now knew exactly what it felt like). But I was left without a plan and wondering how to live with this problem (eg. what to do and when to go to the ED) and how to manage the anxiety about it's unpredictability and the fatigue and weakness associated with an episode. After several episodes and visits to my cardiologist, but no clear plan, a Holter and a referral to an electrophysiologist yielded a recommendation to come back every 5 years "until we have something to offer". Since I spent 99.99% of my time in NSR, and a 20% success rate with ablation with the risk of ending up with a pacemaker was the state of the art at the time, checking back in 5 years was a rational plan. I memorized the locations of EDs on my travelled routes in case I had an episode. With each new episode I began to have more anxiety and then panic symptoms which contributed to uncontrolled heart rates and more anxiety. After several more trips to the ED my cardiologist started me on digoxin for rate control. I spent at least a decade on digoxin sporting resting heart rates of 42 but no significant rate control during episodes. My cardiologist then added atenolol 12.5 mg ( a tiny dose) which I found to be somewhat helpful at controlling rate during an episode, but of limited utility as dose increases contributed to bradycardia already present from the digoxin.
(continued)
The summer of the year I turned 44, I was in northern Michigan on vacation with my wife and kids and extended family at a remote location. By now I was on zoloft for anxiety and panic as well. It was hot and I dove into the cold lake. I immediately converted to AF. The more fatigued I felt, the more anxious and the higher and more uncontrolled my HR became. I was still on digoxin (0.5 mg daily and atenolol 12.5 mg daily). One hour to the nearest hospital with my wife driving, I nearly got a helicopter ride when we stopped at a fire station for help. I spent 4 days in Traverse Hospital. The cardiologist there took an interest in my case, spoke with my cardiologist in CA and decided to load me with 400mg of flecainide and convert me with a dose of quinidine which was successful without causing torsades (phew!).
ReplyDeleteThose years before flecainide were notable for an average of 3-4 trips to the ED a year for AF with an uncontrolled rate. Each visit I was asked the same questions (prior to EMR) about my thyroid, cocaine use, alcohol use and when none of these were found to be the problem, told AF was not life-threatening and that I could just followup with my cardiologist. I would go home feeling weak and anxious and wait to convert spontaneously or if that didn't occur in 3 days call my cardiologist. Eventually my cardiologist decided he wanted me out of AF sooner and started pharmacologically converting me overnight in the hospital. I received a procainamide drip for conversion several times, each of which was successful (I still remember to ask for a larger dose of beta blocker as my resting HR would increase uncomfortably to the 130s-140s just prior to conversion).
I am now 62. I am fortunate to have this condition under control with flecainide, but all the caregivers who knew me and my PAF are retired and in another state. I doubt I will be lucky enough to find another cardiologist in MN with a personal experience of PAF or one with an interest in my case. Fortunately, I have had no sustained episodes since starting flecainide and currently take 50 mg twice daily. I still have occasional short runs of what I believe to be AF (lasting less than 10 seconds), but rather than drink water, I cough when I feel palpitations, although I've noticed that doing nothing also seems to work (i.e the flecainide is doing its job). Of course, I no longer take digoxin, but when I was a poor PA in CA struggling to make ends meet with a family, I thought it might be possible to sell my blood for the harvesting of Fab fragments to digoxin, but oh well, that ship has sailed.
Thanks for your detailed response. With 32 years of experience with PAF - you have me beat. I have also seen electrophysiologists and they had two schools of thought - we can fix this right now or wait until the technology gets better. The guy who gave me the latter advice is one of the most experienced in the state and has done thousands if not tens of thousands of these procedures. I also read a paper recently that suggested that the response rate to ablation is in the range where they should do trials against the sham procedure to see if it is an elaborate placebo effect. Although that is undoubtedly a minority opinion, after seeing the size and depth of the lesions in a cardiology text (Braunwald p804) - I am in no hurry to rush into that.
DeleteFor me the psychological impact in terms of exercise limitation is significant. Even though I know I can maintain a great lipid profile by diet and walking I am used to greater intensity exercise. After my initial bout I was able to exercise for another 5 years with a HR in the 150-160 range on the advice of a sports cardiologist. In retrospect I wonder if that was a mistake.
I have encountered many people who took digoxin for decades for what sounded like early onset afib. I have also encountered many people who had several rounds of ablations until it finally worked and they thought they had hundreds of radiofrequency lesions before it worked.
Glad to hear that the flecainide is working for you.
Just marking time here today. The Holter monitor is being completed this afternoon, about a week after the original request. I may have figured out the problem as a change in one generic version of flecainide to another. No problems so far with the previous generic but is took 4 days to get it from the pharmacy.
ReplyDelete