RECOVERY FROM ABLATION - CLINICIANS' ESTIMATES VS REAL LIFE!!

 

 

RECOVERY FROM CARDIAC ABLATION - this is long, so get yourself comfortable!

I wanted to write at length about this topic as when I had my very first ablation, I thought there was really something very wrong with me as it took me so many months to recovery.  There is always a professional cyclist you hear about who had an ablation but was back on their bike within a week!!    All I managed was some slow, short walking (ie ten minutes) and very gentle yoga/stretching after a few weeks, but then found I was very fatigued. 

Posting on a so-called support forum I was then told that I was “undoing all your Electrocardiologist’s good work” and was absolutely devastated (It was never explained how someone could “undo” a burn scar – perhaps this guy should go and share his wisdom with one of the burns units…).  A phone call to the marvellous Arrhythmia nurses reassured me that the person that said that was talking out of their ******** (insert body part here – your choice!) and she said, at least five times, that what I was doing, and I quote, was “perfect”.

Also at that time, I found a really good study which reassured me massively. I will summarise what that study said and also what was in its follow-up as they are by the same team.  I will then include some direct quotes from the report plus add the links in case you wish to read the whole study.

I’ve had four catheter ablations:

(What type/how long the procedure took/how long before the Afib returned.)

1.       May 2020 Pulmonary vein isolation (PVI) – about 1.5 hours – worked about eight months

2.       April 2021 Radio Frequency (RF) – about six hours – worked about five months

3.       January 2022 – another RF – about four hours – worked about three months

4.       October 2024 – RF with Pulsed Field Ablation (PFA) – about four hours – worked about three weeks

 

Just for clarity I’ve also recently had a Surgical cardiac ablation (Minimaze) procedure but these studies do not cover those.

 

Summing-up

NOBODY in the study returned to work after one week ie 0%, mada, niente, nobody!  Average days off work in first month was 16 days. Only 50% were working at the one month point

40% of people had arrythmias between 0 – 6 months

95% were on their pre-ablation drugs for a minimum of two months; most for six months

EVERYONE experienced skipped beats and/or flutters for two months

All hospitalised patients needed a second ablation ☹

Everyone experienced fatigue/pre-syncope (feeling faint)/palpitations/disturbed sleep for 1 – 3 months.

25% still suffered from fatigue at six months (10% of patients suffered severe fatigue at that point)

Palpitations were variable – from 3 per day to 2-4 per year.

Patients were cutting down their activities for ten days per month pre-ablation; at one month activity was cut for eight days per month; at three months this was down to two days per month and at six months it was still two days per month.

Severe bruising lasted three weeks (or more in my personal experience)

Resting Heart rate was 20 – 40 bpm higher for several weeks (I never experienced this)

EVERYONE’S exercise tolerance was reduced at 3 – 4 months; 80% were able to return to physical activity at three months.  BUT NOBODY was back to normal levels of exercise tolerance at four months

Sore throat lasted 3 – 8 days

Migraines for up to three months.

Patients described the first three months as “challenging”; months 4-6 as quicker improvement but still more difficult than expected.  Patients described an “unexpected prolonged recovery”.

At six months 50% were symptom free and off their meds; a further 35% were “somewhat improved” but still on drugs.

My personal experience was it took me three months to feel a “bit better”; four months to feel “a lot better”, six months to feel “90% better” and a year to feel 100% better.  The recovery from my fourth ablation was several months quicker as they did so little.  The less they do the quicker the recovery, as you would expect.  And I guess that explains those pro cyclists – presumably they literally have just one tiny burn done and recover very quickly, perhaps?  Running is my first love and it was between 4 – 9 months before I felt able to start running again (I was told THREE WEEKS!)

As the more in-depth studies (below) show the slowness of the recovery is very traumatic for patients as they (we? Me?) feel that something has gone wrong with them.  Even the otherwise helpful fact sheets typically just cover the first two weeks. 

Another major issue was that many patients in other studies felt that the clinicians “were moving the goalposts”.  They felt they had been told (or at least had chosen to understand) that they would no longer need drugs to control the rhythm or rate nor anti-coagulation.  Also, that the ablation would leave them symptom-free. 

However, the success figures as provided by clinicians are measured on goals that are wildly different from how patients would define success.  For example, clinicians only talk about 12 months after the ablation.  Well, if it takes you six months to fully recovery from an ablation then that only gives you six months of symptom-free life within that 12 month.  Similarly, clinicians define success as “less symptoms” whereas most patients would define it as “NO MORE AFIB AND NO MORE DRUGS”. 

Caveats to all this is that the sample is self-selecting.  So perhaps those experiencing the worse symptoms would be the ones who chose to help in the survey? Perhaps those that recovered quicker were too busy enjoying life to join in a study like this?  This would skewer the results, but the fact remains that for many people recovery takes much longer than expected – it’s not just me!!!!  And, sometimes, just knowing that you are not the only one going through that can be helpful…

 

THE STUDIES IN GREATER DETAIL.

 

 

Symptom Challenges after Atrial Fibrillation Ablation 2018

Kathryn A Wood, Angel H Barnes, Sudeshna Paul, Kristina A Hines, Kevin P Jackson

https://pmc.ncbi.nlm.nih.gov/articles/PMC5811184/

 

This is the first study to longitudinally investigate the experience of recovery after an AF ablation from the patients’ perspective… over the six months post-procedure. The main study results demonstrated a range of symptoms that patients felt were more challenging to manage than they had expected. We have presented a beginning understanding of the trajectory of recovery after an AF ablation which presents a picture of rocky, slow improvement with many self-care challenges that ebb and flow during the first three months. The last three months (months 4–6) demonstrate improvement that occurs more quickly than over the first three months, but slower than previously understood, and that is if the ablation procedure was successful.

The majority (85%) of the study sample did improve at six months, but the process was much slower and more difficult than expected. Although the symptom burden post-ablation did decrease over the six months, only 50% of subjects were symptom-free and off anti-arrhythmic medications at six months. The remaining 35% were somewhat improved, but still on antiarrhythmic or rate control agents at the six-month point. In the 85% of subjects who did improve, they reported that most improvements were not seen until 4–5 months after the procedure. Subjects found the first month to be the most difficult, but the first three months included many more symptoms than expected and a difficulty returning to “normal” as fast as expected. A minority of subjects experienced no change or a worsening in their symptoms after ablation. These subjects had increased health care utilization in an effort to manage the recurrent AF or other atrial arrhythmias, including electrical cardioversions, multiple office visits, as well as numerous additional medication changes.

Although fatigue is commonly reported as a symptom in other types of cardiac patients and with AF unrelated to ablation, the severity and duration of fatigue reported by the post AF-ablation patients in this study has not previously been reported. In 40% of the sample, fatigue prevented return to even part time work at three weeks after ablation, which differs greatly from ablation recovery for other types of arrhythmias where patients return to full time work in two to four days.

Restricted activity day data showed that these subjects reported their activity continued to be quite limited at one month after the ablation, having to miss work or normal activities for almost half of the month. The increased severity and duration of fatigue post AF ablation is frustrating for patients, and may lead to other distressing symptoms, such as anxiety and depression

Fatigue scores support the patient perceptions reported in the interviews, namely a slow improvement in fatigue with only mild improvement noted before three months, but great improvement between 3–6 months.

Anxiety scores at baseline in this sample are worse than those found with normative samples of adult women receiving outpatient psychiatric treatment or those reported with patients having 50% chance of death within one year. Anxiety after AF ablation may be related to a patient’s feeling that their recovery is “abnormal”. Thus, a more thorough discussion by health care providers about expected post-ablation symptoms (bruising, headache, elevated heart rates, and fatigue) might alleviate some of these feelings and improve the patient’s recovery. This information is important to discuss and reinforce in future educational preparation of patients prior to the ablation, at discharge after ablation, and at each follow-up interaction.

Our findings of patient reported motivation to stop anticoagulation as a primary reason to undergo the ablation were similar to those found by Badin and colleagues, who reported 43% of patients and 44% of referring physicians surveyed believed that an AF ablation would eliminate the need for anticoagulation. Misunderstanding of ablation outcomes by both patients and providers, where both perceived ablations to improve survival and decrease rates of stroke, were also reported. It is unclear why these unjustified expectations continue, however, similar unjustified expectations are found in other patient groups such as cardiac patients undergoing percutaneous coronary interventions and patients treated for osteoporosis or hypertension. It is up to EP healthcare professionals to more clearly explain to patients and referring colleagues what outcomes of AF ablation are realistic and evidence based.

 

 

 

Trajectories of Recovery after Atrial Fibrillation Ablation

Kathryn A Wood , Angel H Barnes , Bonnie Mowinski Jennings 2022

 

https://pmc.ncbi.nlm.nih.gov/articles/PMC8801207/

“This is one of the few studies to provide evidence of patients’ perceptions of their experiences during the six-month recovery period after an AF ablation. These results demonstrate that the recovery process following AF ablation does not conform to the clinically understood pattern of recovery.

The importance of physical activity to these participants was noteworthy, as they perceived that “recovery” also meant they could return to their desired level of physical activity quickly after the ablation. In the experience of these participants, however, achieving the desired level of physical activity lagged behind the resolution of other symptoms.

The education provided to all participants fell short of preparing them for the realities of the actual experience compared to what they expected. These participants expected a quick return to normalcy based on pre-procedure education that was modelled after knowledge about SVT ablation (rather than an Afib ablation). As a consequence, there was an inaccurate understanding of what to expect during the initial six-month recovery period. This finding is consistent with work from other investigators who found that AF patients lack adequate knowledge leading to false expectations about the disease, benefits, and risks of AF treatment options (Lane et al., 2015; McCabe et al., 2015), as well as increased psychosocial distress and negative coping (McCabe et al., 2020).

The knowledge gap about what patients experience post-ablation has hampered clinicians’ ability to provide realistic, evidence-based patient education to patients undergoing AF ablation. Although no participants criticized the education they received, they did express concerns that their recovery experiences were not what they expected.

Providers aware of the variability of recovery trajectories after AF ablation could provide more realistic anticipatory guidance to help patients and families manage their expectations and better adapt to the slow recovery process after AF ablation.”

Above underlining and/or italics are all mine – added for emphasis.

 

And, finally, I know I shared this previously, but a gentle reminder of why we should not be surprised at our SLOW recoveries…

So just why does it take so long to recover from an ablation? And why does the EP say you can run after three weeks yet at my three-month review when I told the arrythmia nurse I was still ever so tired she said, in a kind way, “What do you expect – you’ve had a serious heart procedure!”.

Here are some reasons I have found out:

·        It’s a BIG procedure!

·        They do 50-75 burns inside the heart!!

·        The heart is stunned!!!

·        Deconditioning

·        Drugs

·        Ablation alters (and intends to!) the neurons and thus the function of the heart

·        Inflammation of the heart

·        Effect of anaesthetic

·        Stress

According to medcitynew.com "Radio frequency ablation takes 4-6 weeks to heal with regrowth of blood supply, rebuilding of tissue factors and prolonged inflammation"

 

 

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