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    • #15276
      Michelle
      Participant

      Hi,

      I’ve been diagnosed with 2 unrelated heart conditions a) a hereditary conduction disorder (2:1 heart block) for which I had a pacemaker fitted Dec 12 and b) a 3cm atrial septal defect & had perctaneous closure Dec 6

      A pre op TTE & TEE (TOE) showed a dilated right heart & elevated pulmonary pressures.

      No one seemed too concerned about the elevated pressures as I believe the hope is that all will reduce once my heart remodels itself. However, I feel more short of breath & exercise tolerance worse since the ASD was closed.

      I’ve got no swelling and peripheral oxygenation is above 95%. I’m only 53 and usually fit & well but suddenly feel very weary.

      Could this a sign that I have ongoing problems despite closure of the ASD?

      Many thanks 🤔

    • #15284
      Brittany Foster
      Keymaster

      Hi Michelle,
      This is definitely something you would want to bring to your doctors attention. I would even call them and see if you can get a sooner appointment just to make them aware of this. it seems like it wasn’t that long ago that you had the pacemaker placed and how long ago was the closure of the ASD? I know that sometimes it takes the body to adjust to the changes and your body might also be working harder post op so I would allow yourself to have as many breaks as you need. But definitely keep note of any symptoms, especially anything new that you are experiencing, make note of what time of day is worse/better for you and the triggers that set off your symptoms or make them worse. Keep this in a journal to bring to your appointment or even call and email these concerns to the doctor ! I hope you have a good care team that you trust to check up on all of this ! Keep us updated on how you’re doing.

    • #15291
      Anthony Collins
      Participant

      Hi Michelle

      Interventionists can be expected to make it very clear to their patients that there is no guarantee that ASD closure will result in favourable cardiac remodelling and an improvement in PAH. As you say, it is a “hope”. A relationship between the chances of these occurring and a person’s age at closure was certainly explained to me. Just the same, I doubt that the the length of time that the heart has been forced to adapt to the atypical pressures is always the reason for the persistence of PAH following closure. A good source to consult on this issue is: Vallerie V. McLaughlin et al, “ACCF/AHA Expert Consensus Document on Pulmonary Hypertension; A Report of the American College of Cardiology Foundation Task Force and the American Heart Association,” 2009). Secondly, the abrupt haemodynamic changes occurring with closure can result in some unanticipated and unwelcome symptoms. For me these at one time included waking apnoea and minor peripheral oedema. Following closures of ASDs it has taken me approximately six months on each occasion to regain my energy. All the best for your journey with this.

      • #15294
        Brittany Foster
        Keymaster

        Hi Anthony,
        Thank you so much for your response to this. I am guessing that you had an ASD as well? If so, did they notice an improvement in your pulmonary pressures after repairing the ASD? I know that when I had my VSD there was an improvement in my symptoms as a baby but then it progressed over the years. I know it’s different for everyone. Did they think you were born with this @mohare823 ? If so, I would suggest seeing an ACHD specialist (adult congenital heart disease).

    • #15300
      Anthony Collins
      Participant

      Hi Brittany

      I cannot give you any entirely satisfactory answer, I’m afraid. At follow-up, the chief surgeon told my parents that my paediatric ASD closure had not resulted in a resolution of the coexisting PAH. But there was no postoperative right-heart catheterisation to enable a comparison of pressures before and afterwards. Even if the prognosis was poor, I am clearly one of those fortunate ones in whom the pulmonary vascular resistance remained tolerable, perhaps non-progressive, for decades. My second ASD closure, almost half a century later, has been followed by routine echocardiography providing a wide range of conflicting results, pleasing, ominous and in-between, in no logical sequence. But I will not allow repeat catheterisation in order to get a definitive measure, in part because my cumulative exposure to medical irradiation is already very high.

      • #15308
        Brittany Foster
        Keymaster

        Hi Anthony
        Thank you for explaining all of that. I hope that you are being followed by a team of doctors who are working on treatments for you to make things more tolerable! I know it’s hard to have such ups and downs with diagnosis. Are they going to be monitoring your pressures with echo since you aren’t doing the right heart caths? Are you followed by a PH doctor too along with a cardiologist? Hope you’re doing as well as possible!

    • #15344
      Anthony Collins
      Participant

      “Yes” to both questions, Brittany. I see both a leading pulmonologist and an EP cardiologist. You will be well aware of the unreliability of echocardiographic studies when it comes to gauging the degree of PAH; none the less, I still attend appointments for these. My best wishes to you for Christmas and the New Year.

      • #15350
        Brittany Foster
        Keymaster

        Same to you Anthony ! I hope this new year brings you an improvement in some of your symptoms and a good treatment plan. I’m glad you are being followed by both doctors. And you’re right, they can’t just go by the echo when diagnosing PH and elevated pressures, especially for those (like me ) where the pressures are PH upon exertion. Hope you enjoy your time during the holidays !

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