I'm 16 years out a ROSS procedure. About 3 years ago a perivalvular leak showed up on my echo. It's continued to grow each year. A perivalvular leak is one where the valve detaches from the muscle and blood passes around the valve. An article I read says this can happen up to 20% of patients. Preferred treatment is another open valve replacement.
Has anyone had experience with a perivalvular leak?
PACs 19,206 in 24 hours. That's a lot.
Premature Atrial Complexes (contractions)
arise not from AV node but in my case from excitable scar tissue.
These ectopic beats have an unnatural electrical pathway, disrupt the AV node and produce a weak or absent pulse.
On my last 24 EKG test I had 19,206 of these ectopic beats.
Not much is written about frequent PACs. Most often the only references say "a few PACs per day in an otherwise healthy heart could be considered benign". Some sources put the limit at 10 or 30 even up 67. BUT NEVER 19206.
Yet my cardiologists insist the 19206 PACs a day are benign, I should not notice them, they have no effect on me and that is in normal limits.
I strongly disagree. I feel the palpatations, I become shorter of breath and fatigued.
Many medical journal articles will say as little as 50 PACs a day can increase your risk of stroke, Atrial fib, sic sinus syndrome, block and heart failure.
Has anyone in this community have experienced frequent PACs ? And how did your cardiologists manage your heart?
Been in bigeminy for about a week now. Cardiologists not so concerned but with existing low cardiac output I feel drained
TAVR after Ross?
Journal posted on January 6, 2017
I had a Ross procedure in 2001 then a Pulmonic redo in 2013.
Now my transplanted Aortic valve is failing by insufficiency.
I don't look forward to another open heart procedure, but I would consider a TAVOR .
My cardiologist tells me this cannot be done.
I have read that there is a trial for valve inside a tissue prosthetic valve.
Can anyone tell me if this is true, and if so which institutions are participating in these trials.
I've read many post about recliners. I did not use a recliner .I would scoot to the edge of the bed , roll on my side facing out of bed. Swing my legs out and let them dangle. The push my self up with one or both arms to a sitting position .
I met a valve recipient . she had a mechanical valve and she said she wished she had a tissue valve instead ,because she was so tired of taking anticoagulants and having her INR checked .
of course everyone's experience is different.
but for me I had two tissue valves for my Ross procedure . The pulmonic implant stenosed very quickly and was replaced and now the aortic valve is showing signs of failure.
So for me there was the original surgery and then a long period of declining health before a second surgery then a short time of Health and now the aortic valve is declining .
I have lost way too many years from being short of breath fatigued not being able to participate. also I consider the years of anxiety as my heart valve stenosis and the anxiety of the next upcoming surgery .
and I consider the extreme out-of-pocket costs after OHS .
I would like to hear from others with Aortic valve replacement.
Did you get a mechanical or a tissue valve.? do you think you would have preferred the other ?and how long has your valve lasted?
I was being interviewed for insurance reasons. She asked what heart medications are you on?
I said none.
She said ,really, but you claim to have a heart condition .
Yes I have two replacement valves . I have a low cardiac output, I'm short of breath , one valve is failing and will need to be replaced soon. The management of valve disease is surgery not medictions.
She said, surley you must be on meds if it's a significant condition.
Again it said, I do not take meds , my blood pressure is fine my heart rate is fine. and for now the runs of dysthymia are self limiting. the management for valve disease surgery.
she replied well , I don't think this qualifies
I've been reading many member stories.
One valve patient did a 30 mile bike ride the day before surgery. I like a proactive heart team.
But for me my Drs waited until I couldn't do stairs, couldn't walk and talk at the same time. I couldn't even ride my bike for the past 5 years.
I was being followed with yearly echoes.
I was complaining each visit of increasing shortness of breath and fatigue.
Yet every year I was told both you valves are fine , nothing to worry about ,these valves will last you the rest of you life.
Until year 10 when a valve went from fine to life threatening, replace it now.!
I still find it hard to believe it could go that bad in one year, especially after reading the pathology report.
I believe the valve was stenosing at the same rate as my declining health.
I can't read echoes, so I have no idea what they saw or why the dicounted my symptoms.
I would have liked to of had my redo surgery years earlier.
In these extra years of a stenosed valve ,things happen. My heart inlarged, I developed a bundle brach block , I gained weight. I lost muscle mass. I became unconditioned. And the worst is as the valve stenosed so did the outflow tract. ( the big vessel).
Being so unconditioned slowed my recovery .
It took over a year to lose the weight .
Over a year for the heart to reshape and retime itself. Over a year to regain some strength and breath.
Most things recovery to a point but others are permanent. The runs of dysthymia. The bundle brach block , and because of the stenosed outflow tract. My replacement valve was downsized.
I know my body better than anyone. I should have listened to my body and sought a second opinion.
During Many valvular procedures the heart must be stopped( it's hard to work on a moving object ) To take the place of a beating heart and lungs my blood must be perfused . That means running my blood across the room to a very large machine it's not as simple as just one hose in and one hose out Besides supplying blood to the aorta it must also Supply blood to the lungs and the cardiac muscle. The perfusion machine itself is not just one pump but 4 or more with reservoirs coils.
The point of telling this is because the volume of blood needed for all this is about double. The blood is diluted with saline and thinned with an anticoagulant.
At the end of the surgery they want me to have back all my red blood cells and plasma , so they pump in as much of the blood saline mix as they can, and the rest they hang in bags and let gravity flow it in.
The result is that the fluid goes everywhere in my body I'm surprised my hair didn't swell up. My face is Puffy , my eyes were nearly swollen shut, my fingers looked like sausages.
The morning after surgery Dr. Walton ,
a great general surgeon and all-around nice guy stopped in to see me. .The first thing he said was , Paul, you look like the Michelin Man
I was born bicuspid Aortic valve. I had it replaced by a Ross procedure in 2001.
I was told this is the only surgery you will ever need.
Only a few years later I was short of breath again.
I had my pulmonic valve replaced again in 2013 again I was told this is the only surgery you will ever need.
Now I'm getting short of breath again and will need to have the Aortic valve replaced again soon.
I understand now, this may not be my last surgery.
Do you remember your first walk after surgery?
I sure do. Still in CTVU just 15 hours post op physical therapy arrives to walk me. She and a nurse stand me behind a wheelchair. They put an oxygen tank in the chair. Next the pleuravac from the chest tube goes in the chair. The Foley catheter bag and the JP drain all in the wheelchair. The Swanganz is disconnected but still dangling out of my neck. Same for the arterial line in my wrist. An I V pole with two drip machines. Standing there wearing that gown open in the back . And now they say do you think you can walk? I said yes , just try and stop me . To their amazement made a full lap of CTVU. But I've always been a little headstrong
Don't confuse ejection fraction with cardiac output. Cardiac output is more discription but harder to compute.
Ejection fraction is most often a visual estimate of how well the left ventricle contacts. A higher E J does not nessesarily mean a healthy heart, especially if you have valve disease. I have had two life saving heart surgeries ,both times my E J was above 60%.