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  1. trinitymcdermott

    Afib 6.75 years after OHS AVR??!!! WTF!!!??

    My son who had his OHS for a mechanical aortic valve over 7 years ago had a bout with afib last year. He thought he was having panic attacks and dismissed the feeling until he felt really bad 3 weeks post Covid infection and went to the hospital with a RHR of 150-170. Cardioversion (shock)...
  2. trinitymcdermott

    I will have my aortic valve replaced with a mechanical valve next week

    Your partner may notice it while sleeping. My son who has it and I do not notice at all when sitting next to him in a quiet space.
  3. trinitymcdermott

    I will have my aortic valve replaced with a mechanical valve next week

    Is it a breathe into or out of thing? In the US it is a breathe in - suck hard enough to move the little ball to a certain level. My son did not enjoy that.
  4. trinitymcdermott

    I will have my aortic valve replaced with a mechanical valve next week

    Excellent suggestions. I am adding to this based on my son’s experience. He was 11 when he had his aortic cal he replaced (mechanical). It was his second OHS. For your phone/electronics, an extension cord if they will let you, charger for your wireless ear buds (the wired version gets all...
  5. trinitymcdermott

    Early tissue valve failure. Anyone else? (Also have complex issues w/ meds.)

    In addition to what others have mentioned above, i agree with your cardiologist that getting the HI issues under control with a solid gastro is essential. I wonder if the bacteria helicobactor pulori (h.Pylori) could be to blame. It is easily treatable, but first needs to be diagnosed with a...
  6. trinitymcdermott

    Failure of Onx valve and problems with lowering INR

    If I recall correctly, even if this is just reported to On-X, they're required to inform the FDA. By reporting the issue, you're not intending to hurt On-X --- you may help the FDA to put some attention at the On-X ridiculously low INR recommendations. Yes, if you call “customer relations” or...
  7. trinitymcdermott

    Foldax valve trials

    Thank you Again. Less worried about INR testing - he’s a champ. It’s the potential brain bleeds if in an accident and not being able to snow ski any longer. You long time warfarin takers have experience there?
  8. trinitymcdermott

    Foldax valve trials

    I’m keeping an eye on these types of things as well. I anticipate science/technology will improve enough that one day my son may want to have his mechanical valve valve removed and a valve with longevity like this without coumadin requirements. Downside would be another OhS, which might not be...
  9. trinitymcdermott

    Tissue Vs Mechanical

    EDIT: Meant with AAA’s open surgery is no longer the gold standard as endovascular placement of grafts and treatments of the aneurysms have. Even out longer so they have more experience on how long these will last. Still a 40’year old would be more likely to get an open procedure rather than...
  10. trinitymcdermott

    Tissue Vs Mechanical

    Funny, I’m reading this while sitting in a conference listening to interventional cardiologists discuss TAVR’s (etc). 😉 I believe TAVR’s are going the way of the AAA’s, open is becoming the gold standard as we have longer term data showing the safety and efficacy for younger patients (longer...
  11. trinitymcdermott

    Reinforcing the need for weekly testing

    We work with children’s hospital anticoagulation Group. There have been a few occasions of a missed dose over the last 2 1/2 years since my 13 year old son’s AVR. Recently at his dad’s, where he is responsible for administering his own medicine and was not using a pill box or alarm. He had...
  12. trinitymcdermott

    Still struggling cardio wise running, etc. 2.8 years after Aortic Valve replacement

    So true! “Playing” now is in front of an Xbox console. If we were bored we’d figure it out. So much has changed. The school year has started and I’m excited for the additional structure and no electronics during the school week. “go outside and play!!”
  13. trinitymcdermott

    Still struggling cardio wise running, etc. 2.8 years after Aortic Valve replacement

    Really good thoughts. Thank you. Maybe the focus on “do what you CAN do” and do it consistently. Just keep it up. Be proud of just getting out there for a run or a walk or whatever feels right on that day. Push yourself a little bit each day. He thinks his battle scar is cool (it’s his second...
  14. trinitymcdermott

    Still struggling cardio wise running, etc. 2.8 years after Aortic Valve replacement

    He’s just a little chunky right now (I am sure a growth spurt and puberty are about to hit and will help) and want to find a good activity for him. Walking and swimming may be the best bet. The crashing in a bike scenario in coumadin makes me steer away from that. His cardiologist is not a fan...
  15. trinitymcdermott

    Still struggling cardio wise running, etc. 2.8 years after Aortic Valve replacement

    This makes me feel curious about what to expect out of my now 13 year old son - aortic replacement - mechanical - 2 1/2 years ago. He struggles with running but I figured it was because he is not conditioned. His cardiologist told me he has no restrictions as far as running goes. I wonder though...
  16. trinitymcdermott

    Recovering alone

    This is the reason we did not go with a biosprosthetic valve for my 11 year old (he is almost 14 now). Not wanting there to be a next time. The body is only able to safely endure OHS a number of timeS - our cardiologist suggests that number is no more than 3 and then the complication rates get...
  17. trinitymcdermott

    Worried about my Mechanic AVR's status

    Zoltania, this is beautiful advice! I love it for many aspects in life. He’s away this week at Young Life sleep away camp in Oregon. One of the busses (not his) veered off the road (going slowly) and tipped over! No kids were hurt but I can’t not think about “what if” it were my son’s bus and...
  18. trinitymcdermott

    Worried about my Mechanic AVR's status

    I love hearing from you. My 14 year old son had his AVR replaced 2 1/2 years ago with a St Jude. I don’t recall the size, but I’m curious now. I’m imaging him now as a 25 year old man. :)
  19. trinitymcdermott

    Should I Have a Stent?

    True. And at least in the US, the cardiologist is the one you have a clinic appointment with, the Interventinal cardiologist is the one whondors less invasive procedures (like deploying a stent from groin or arm access point into the coronary artery) and the cardiac surgeon does the open (or...
  20. trinitymcdermott

    Should I Have a Stent?

    Spot on - imagine the $$ he’ll likely be paid for being their spokes person. And that little thing called HIPPA prevents the hospitals from saying anything.
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