Back On Track For Paravalvular Leak Closure

[Blake777]

I am back on track for my paravalvular leak closure in Texas at Baylor Scott. Some of you may remember I told you I had a leak and they were going to send me to Texas or it may have been an ablation I was suppose to get for my afib, can't remember which one. One cardiologist here in OK was telling me I needed an ablation and had put in a pacemaker for my uncontrollable afib, she has now moved back to the UK. Another cardiologist in the same building but in heart surgery clinic said I needed surgery for a leak around my onx valve and that is what is causing the afib and I also have moderate to severe leak in tricuspid valve. Well turns out I do need surgery for the leak and I was scheduled to have something done about it last year but with covid and me trying to contact cardiologist with no luck to see what was going on with my procedure. This was after July 2020 when I had my right heart cath. Someone had called me from heart hospital here in Oklahoma and asked me did I still need a cardiologist. Well that same clinic was a clinic I had called like a year before to if I could get a second opinion, so I did not return the call. Well turns out that was the call about the procedure that was going to be done here in OK at heart hospital where they do not even do that many of these procedures. So another 4 months go by and in the mean while I am still trying to see what's going on about procedure. So primary doctor sends something to cardiologist over PC in regards to what is going on ( he's in the same building too), still no answer as to when I would be doing anything, then pacemaker clinic in the same building called, no results. Guess you see this place is unorganized and somewhat unprofessional in my opinion. So fast forward I finally went back for yearly TEE and that's when cardiologist in surgery clinic says again I need to go to Texas to get a paravalvular leak closure and my tricuspid valve is leaking severe and they are saying it could be from a leaflet leak or pacer lead leak. And he goes on to say they may not be able to do it with catheter through my leg, since I have all the other leaks going on. He said they may have a trial for the tricuspid valve but thinks they may have to open me back up. So I am kind of nervous because my last surgery I almost didn't make it. I have to do another right heart cath Thurs my last TEE showed RV peak pressures at 67. Last years right heart cath showed RV pressure 50 x 10 whatever that means, don't know if its worse or not, maybe by 7 not sure. Anyway have to calm down, so worried things are getting a little bad for me now. I read on here and it gives me hope things will turn out okay. Thanks for hearing my nervous rants again. Good luck to anyone in the waiting room and those who have came out my prayers are with you.

 

[Blake777]

Meant to say this is suppose to be a great hospital and part of Cleveland Clinic and Mt Sinai in New York, all are top rated group of expert surgeons. Anyone been to Baylor Scott for heart surgery for what I am going for? Thanks in advance!

 

[tom in MO]

I've never been there, but have read good things. Good luck.

 

[Blake777]

I've never been there, but have read good things. Good luck.

Thank you tom. I have heard good things too, think I'm going to be in good hands. Just found out my 84 year old mother has to have major back surgery, she's really bad off, can't walk most times. So now I am scared for her or scared I won't be here when she has it. I can't afford to put it off any longer.

 

[tom in MO]

Do what you can but try not to torture yourself if you cannot do enough.

 

[charlottekaye]

I am back on track for my paravalvular leak closure in Texas at Baylor Scott. Some of you may remember I told you I had a leak and they were going to send me to Texas or it may have been an ablation I was suppose to get for my afib, can't remember which one. One cardiologist here in OK was telling me I needed an ablation and had put in a pacemaker for my uncontrollable afib, she has now moved back to the UK. Another cardiologist in the same building but in heart surgery clinic said I needed surgery for a leak around my onx valve and that is what is causing the afib and I also have moderate to severe leak in tricuspid valve. Well turns out I do need surgery for the leak and I was scheduled to have something done about it last year but with covid and me trying to contact cardiologist with no luck to see what was going on with my procedure. This was after July 2020 when I had my right heart cath. Someone had called me from heart hospital here in Oklahoma and asked me did I still need a cardiologist. Well that same clinic was a clinic I had called like a year before to if I could get a second opinion, so I did not return the call. Well turns out that was the call about the procedure that was going to be done here in OK at heart hospital where they do not even do that many of these procedures. So another 4 months go by and in the mean while I am still trying to see what's going on about procedure. So primary doctor sends something to cardiologist over PC in regards to what is going on ( he's in the same building too), still no answer as to when I would be doing anything, then pacemaker clinic in the same building called, no results. Guess you see this place is unorganized and somewhat unprofessional in my opinion. So fast forward I finally went back for yearly TEE and that's when cardiologist in surgery clinic says again I need to go to Texas to get a paravalvular leak closure and my tricuspid valve is leaking severe and they are saying it could be from a leaflet leak or pacer lead leak. And he goes on to say they may not be able to do it with catheter through my leg, since I have all the other leaks going on. He said they may have a trial for the tricuspid valve but thinks they may have to open me back up. So I am kind of nervous because my last surgery I almost didn't make it. I have to do another right heart cath Thurs my last TEE showed RV peak pressures at 67. Last years right heart cath showed RV pressure 50 x 10 whatever that means, don't know if its worse or not, maybe by 7 not sure. Anyway have to calm down, so worried things are getting a little bad for me now. I read on here and it gives me hope things will turn out okay. Thanks for hearing my nervous rants again. Good luck to anyone in the waiting room and those who have came out my prayers are with you.

Thinking of you.

 

[Blake777]

Do what you can but try not to torture yourself if you cannot do enough.

Yes, thanks Tom. I was able to move around yesterday and breathe pretty good, so did a little shopping for her and got her stuff for hospital stay. Felt good to be able to help.

 

[Blake777]

Just got back from Baylor. Talked to the surgeons and they said they will have to open me back up to fix the mitral and replace tricuspid valve. NOT what I wanted to hear. Doctor doesn’t think he will be able to go through my side, but will do a cat scan to see. This will be my 3rd heart surgery and I almost didn’t make it through the last one. I think cried all the way home. They told me to think about it but what’s to think about? I either have it and pray I make it through or don’t have it and eventually the fluid will take over. So stressed and scared. Please pray for me.

 

[pellicle]

Just got back from Baylor. Talked to the surgeons and they said they will have to open me back up to fix the mitral and replace tricuspid valve. NOT what I wanted to hear.

gee, that's raw ... I'm sorry to read that.

As ugly as it is if you fix your attitude on what must be done then I'm sure you'll find you can do it

Best Wishes

 

[Blake777]

gee, that's raw ... I'm sorry to read that.

As ugly as it is if you fix your attitude on what must be done then I'm sure you'll find you can do it

View attachment 887806

Best Wishes

Yes, I’m in that mode now. Just had to adjust to the bad news first. They are one of the top three quality hospitals in the United States. I believe they can do the job safely, it’s just I deal with excruciating pain daily from fibro and it takes all my strength most days to get through it. I will keep praying for strength and courage. Thank you pellicle!

 

[charlottekaye]

Just got back from Baylor. Talked to the surgeons and they said they will have to open me back up to fix the mitral and replace tricuspid valve. NOT what I wanted to hear. Doctor doesn’t think he will be able to go through my side, but will do a cat scan to see. This will be my 3rd heart surgery and I almost didn’t make it through the last one. I think cried all the way home. They told me to think about it but what’s to think about? I either have it and pray I make it through or don’t have it and eventually the fluid will take over. So stressed and scared. Please pray for me.

 

[charlottekaye]

I know you need to stay focused on getting through this, but I am wondering why paravalvar leaks happen. Is it surgeon error? I've been living with one for 24 years now. Maybe other members can provide information...

 

[Blake777]

Yes good question. I believe it’s surgeon error but they say the sutures calcify and pull away from valve or something like that. But if that’s the case seems like no matter what they do to fix you it will happen again. Someone needs to invent another way to do this if there is a way.

 

[Luckyguy17]

Yowsirs Blake, it sounds like pretty much every heart valve, will have been tweaked or replaced by the time you are done here.

am I right in reading you have an OnX Aortic mech from a previous surgery? Are you about 60 years old?

all the best on your preparation for these next procedures.

 

[tezza]

gee, that's raw ... I'm sorry to read that.

As ugly as it is if you fix your attitude on what must be done then I'm sure you'll find you can do it

View attachment 887806

Best Wishes

Love this quote....going up on my wall so I remember that every day!

 

[carolinemc]

I am back on track for my paravalvular leak closure in Texas at Baylor Scott. Some of you may remember I told you I had a leak and they were going to send me to Texas or it may have been an ablation I was suppose to get for my afib, can't remember which one. One cardiologist here in OK was telling me I needed an ablation and had put in a pacemaker for my uncontrollable afib, she has now moved back to the UK. Another cardiologist in the same building but in heart surgery clinic said I needed surgery for a leak around my onx valve and that is what is causing the afib and I also have moderate to severe leak in tricuspid valve. Well turns out I do need surgery for the leak and I was scheduled to have something done about it last year but with covid and me trying to contact cardiologist with no luck to see what was going on with my procedure. This was after July 2020 when I had my right heart cath. Someone had called me from heart hospital here in Oklahoma and asked me did I still need a cardiologist. Well that same clinic was a clinic I had called like a year before to if I could get a second opinion, so I did not return the call. Well turns out that was the call about the procedure that was going to be done here in OK at heart hospital where they do not even do that many of these procedures. So another 4 months go by and in the mean while I am still trying to see what's going on about procedure. So primary doctor sends something to cardiologist over PC in regards to what is going on ( he's in the same building too), still no answer as to when I would be doing anything, then pacemaker clinic in the same building called, no results. Guess you see this place is unorganized and somewhat unprofessional in my opinion. So fast forward I finally went back for yearly TEE and that's when cardiologist in surgery clinic says again I need to go to Texas to get a paravalvular leak closure and my tricuspid valve is leaking severe and they are saying it could be from a leaflet leak or pacer lead leak. And he goes on to say they may not be able to do it with catheter through my leg, since I have all the other leaks going on. He said they may have a trial for the tricuspid valve but thinks they may have to open me back up. So I am kind of nervous because my last surgery I almost didn't make it. I have to do another right heart cath Thurs my last TEE showed RV peak pressures at 67. Last years right heart cath showed RV pressure 50 x 10 whatever that means, don't know if its worse or not, maybe by 7 not sure. Anyway have to calm down, so worried things are getting a little bad for me now. I read on here and it gives me hope things will turn out okay. Thanks for hearing my nervous rants again. Good luck to anyone in the waiting room and those who have came out my prayers are with you.

I can understand where you are coming from. So much confusion coming from different directions. I pray that the chaos will end and they all get on the same page. I am confused, why does he want you to go to Texas for your surgeries? They have many cardio in Oklahoma City and several teaching schools that could the repairs and main surgery. Praying that they get it together and helps you.

 

[carolinemc]

? Comment missing.

 

[nobog]

Yes good question. I believe it’s surgeon error but they say the sutures calcify and pull away from valve or something like that. But if that’s the case seems like no matter what they do to fix you it will happen again. Someone needs to invent another way to do this if there is a way.

In an effort to get the biggest EOA (flow area) the manufacturers "up size" their valves - how do they do this? by putting a teeny-tinny sewing cuff on the valve, thus they can stuff a "bigger" size valve into a X-sized hole. well, the cuff is the gasket and the smaller the gasket the greater chance for a paravalvular leak. That's one reason the biggest sized valve might not be the best.

As for fixing the paravalvular leak, they have looked into a PFO device however there is no such device on the market (that I know of) at this time.