Dr. Moiseky KmanParticipantDecember 6, 2017 at 8:16 pmPost count: 2
I am a well-read medical professional with 32 years of clinical practice, albeit not in pulmonary medicine, but I do know when something is not right when even the minutest of tasks precipitate shortness of breath, dizziness, extreme fatigue and positional lightheadedness on the verge of blacking out. Today marks the 2 year and six month anniversary of the start of my painfully frustrating, humiliating, and life changing experiences in an attempt to get to the bottom of what is causing my functional decline. I needed to stop working, retire my license to practice, and severely limit my activities to strategic levels of minimal functioning to carry out activities of daily life.
It was 2 years ago that I had a right heart catheterization which showed equivacable findings. Repeated echos do indeed display pulmonary vein narrowing. Recent CT angiography revealed ‘mild to moderate’ reduction in pulmonary vein diameter in my left atrium. According to the literature, this correlates with a reduction to 25-50% of the original size. Other findings on CT consist of left pulmonary artery enlargement, increased right ventricle wall thickness, left basilar atelectasis, and significant left pulmonary artery thickening and reduced vascularization of the lung tissue itself. Current thinking is that there is discordance with what is seen radiologically and what is seen clinically. This means that ‘what the patient feels is worse than it looks.’
My cardiologist disputed peer reviewed journal articles reflecting the current thinking on radio frequency ablation as a treatment for paroxysmal atrial fibrillation and its association with iatrogenic ‘pulmonary venous hypertension.’ The incidence of PVH has been cited as ranging from 3-26% of cases. But, that incidence is only with 1x ablation and not the 5x ablations which I had. The pulmonologist who I saw, touted as a PAH expert, reviewed the CT angio in my presence, looking solely at the pulmonary arteries, not the pulmonary veins, or even the radiologist report indicating the pulmonary vein pathology. In response to my worsening symptoms, he recommended having my CPAP air volume to be increased, and he told me to “See a left sided heart doctor because I’m a right sided heart doctor only.” This was a PAH pulmonary specialist telling me this. So I played along and asked for a ‘left sided heart doctor.’ Needless to say that ended the visit.
From my perspective, I just want to feel better, I don’t want to get any worse which is in fact happening. And, I certainly do not want/or expect to be treated the way I have experienced by ones entrusted with my care. Its extremely unsettling when your presenting signs, symptoms, and spot-on clinical history point to a problem which is causing a lot of suffering not only for me but for my family too.
2.6 years and counting, disabled, out of work, and only a minimally effective bronchodilator to show for it. PVH is a relatively new clinical consideration in the realm of PAH and needs to be recognized as such by the medical community because of the great number of patients treated by radio frequency ablation for atrial fibrillation.
NancyParticipantJanuary 5, 2018 at 8:52 pmPost count: 2
I am a prior nurse anesthetist now attorney who has specialized in disability law. I can so identify with what you have gone through – I had 2 lengthy ablations which totally occluded my upper pulmonary vein and 80% occluded the lower left pulmonary vein which they were able to insert a stent. However, the cardiologist did NOT tell me 15 years ago that he had also occluded my pulmonary artery! So for 15 years, I had mild PH which recently jumped to SEVERE. I am having to send many of my cases to other attorneys as my energy level is so low. I am discouraged about whether any of the medications will help since I have a “fixed” obstruction.
Dr. Moiseky KmanParticipantJanuary 7, 2018 at 3:52 amPost count: 2
Hi Nancy, I am very appreciative for your support and ‘validation.’
My next course of action will be to find a cardio-thoracic surgeon who has experience in cases such as these, although my research indicates equivocal results and I’ve gotten very tired of dealing with those entrusted with my care of this problem.
Having had 5x radio frequency ablation sessions, with one lasting over 7.5 hr, has an effect on soft tissue which extends beyond the benefit desired. Heat and subsequent scarring results, so as in my case, I expect the principles of wound healing to apply making scar tissue formation a sequela of certainty.
My PHA accredited pulmonary ‘specialist,’ as did my cardiologist, refused to entertain my CT-Angio results as significant, despite 25-50% PV occlusion and worsening signs and symptoms.
How did you go about locating someone familiar with PVS, maintenance, and therapy, including stenting?
NancyParticipantJanuary 13, 2018 at 10:19 pmPost count: 2
I had my 2 lenghty ablations at Duke University. The next year I began experiencing SOB with normal activities – a MRI was bizarre when I got a copy of it as so many people looked at it trying to figure out what it meant. I contacted my cardiologist at Duke who was in the process of moving to MUSC (Charleston, SC) – he and another cardiologist looked at the pulmonary veins – the upper one was 100% occluded and they could not get a stent in it – the lower pulmonary vein was 80% occluded and they did get a stent in that one. They did not address the pulmonary artery or tell me of its total occlusion.
My feeling about these totally occluded vein and artery is that is has been 16 years and they are likely so scarred that no one could get them open. However,I am now being referred to Duke where they have a strong program for PH patients who have pulmonary clots (that seems to be the closest category for me) – I was told that they had a good group including cardio-thoracic surgeons.
But my PH doctor is not convinced that my PH is totally related to the occluded vein & artery since I have had that for 16 years; I also have an autoimmune (Ankylosing Spondylitis) disorder that he wants Duke to see if they think that may have anytime to do with it.
I will be glad to report back to you after I go to Duke.
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