Hey bud, Sorry you're feeling so crappy. (I originally said s**tty but I guess some people get offended reallllllly easily and youtube does too! :) Yeah that would really bug me if I spent that much on drugs and couldn't use them. I've actually had that happen and ended up giving them to my doc to give to someone else who couldn't afford it. Not suggesting you do that just saying what I ended up doing one time. Well lets hope you start feeling better right quick! I'm guessing you've taken the blood thinner before as you've mentioned blood thinners prior so you're probably pretty confident that's not the issue. Just hang in there and you'll be feeling better in no time! That's terrific about the hole closure bringing up your E/F. I didn't know that was one of the possibilities. I understood that you E/F was where it would be and the hole closure would just keep it there so I'm glad I was wrong about that! I have a friend who's having breathing problems who also has a heart issue. I'm not sure exactly what his heart issue is but something I heard you say in one of your videos really struck home with me and I mentioned it too him and he's seen his cardiologist and that's exactly what it was! So know your video really helped someone in a similar situation. Probably not much consolation but I thought I'd mention that you really helped him. He was at his wit's end. Anyway I tend to be wordy so don't feel you need to respond to this, just know we're thinking of you and praying and hoping for the best! Stay strong brother and you'll be feeling better before you know it! I say that confidently as getting over any procedure takes time as you well know. Okay I'll stop now before I end up getting banned! peace
Thanks, and that's part of the reason i do these videos is to help educate others so great to hear it's helpful. Def getting better, just gotta keep being healthy every day until i'm in a better situation, at least as good as before surgery!
Question: Is it normal to wait months for an appointment? My doctor referred me to cardiology, but my appointment is 4 months away! I’ve had a funky mitral valve for years w/o any issues, but now having concerning symptoms (SOB, chest pain, fatigue). I went from being VERY active & healthy to hardly able to take a shower. And now I have to wait…it’s very stressful. Thank you for your videos; they are so helpful.
Unfortunately that can be the case. the way i manage some of that is for instance, i needed to see my interventional cardiologist, but by the time the appt came, they told me they had to delay it 3 months, so i went to my general cardiologist, who could see me sooner, he ordered tests, found the problem, and i was able to get a procedure by the interv. card. you can also try a primary care doctor. if he sees a serious situation, he can start things in motion and might be able to get you in sooner that way. It's good you identified the issue, i know it's not fun as i'm going through more breathing issues again myself, but try knocking on other doors too. Appreciate the kind words and glad the videos are helpful!
I think you're onto something with those meds for an otherwise healthy person. I've quit every statin or bp med they've ever put me on. They all make me feel horrible! Like HORRIBLE horrible!!
i totally get things like thinners for the stroke risk, but logically, a med that drops blood sugar or blood pressure for someone who has good numbers is going to make the numbers too low. that was the worst/puniest i've felt throughout my entire heart journey. sorry you're having issues too. have to think about everything in detail along the way!
I was going to ask if you if you had experienced any mental deficiencies with your heart medications. I didn’t think I was having any mental issues but clearly everything is more difficult by quite a bit. Ramping up the entresto and been noticing it more. Just added Spironolactone. I have low blood pressure. Zero heart attacks. My. Bp was super low to point they called code and put me in heart ICU. I’d have to look at my records to verify the numbers. Entresto through CVS mail order is $100.00 for 90 days (blue cross blue shield health insurance internal pharmacy) Just an fyi . Safeway quoted $1,000.00 for 30 days. Might be an option? 1/10 cost
The super fatigue is my experience too. The drunk driving feeling was my feeling too. So I just don’t even consider getting on my S1000RR. But I’ve done it a couple times. Just to temp death right?😂 kidding. But not completely. Maybe testing the grim reaper more accurately. 😅 It’s a real tough choice making these choices knowing nobody has a crystal ball and perhaps something could rapidly alter an outcome. And the side effects are fairly significant. Especially combined. I’m on 5 right now. Pretty difficult to hear they are permanent. I missed the ‘chronic’ part of the diagnosis of “chronic heart failure”. Perfect example of the mental deficiencies. Entresto label said “take one…” I stopped reading. The full label said “take one tablet TWICE daily” It took me a month to notice my oversight in a single sentence. Wow.
@@EtaSoon777 i don't plan on ever touching entresto again after my experience. i'm surprised they still have you on it with your BP that low?? mental stuff...after anesthesia, which i had twice that week, i tend to get weird dual reality dream worlds in my head for a bit, little foggy, but usually that clears out.
@@EtaSoon777 nice, and no judgment, i was on the aprilia 2 days after my colonoscopy too haha. i was only taking one entresto a day, lowest dosage, and it screwed me up bad. low blood pressure isn't good, and me being very active and barely able to get out of bed? no thanks. i don't care how long it might add to my life, i'll take a little more time of quality living over feeling like death any day!
Lots of history, but the first surgery was an attempt to repair native valves, gave out 4 days later, chordae were trashed he said. i went with tissue as there were no limits on daily life, no blood thinners, diet constraints, etc. this last time, we had the discussion again on mech vs. tissue. i did more research, and still took the tissue approach, not only for the quality of life day to day, but you do have higher stroke risk with the mech valves and have to be really careful about your blood thinness meds, testing, results, etc. the way mine is failing now coming loose at the edge, a mechanical would've had the same issue. had i gone mechanical the first time, i may have had a lot less issues, but daily life would not have been as enjoyable and the higher risk of stroke. to each their own, this is just what i've chosen.
Why cant u get another tossue valve a third time?? My doctor told me they can put 3-4 in my airtic valve no problem Is it more of a mitral hyprid valve issue as to why or is it just so damged bc i need to make a decision here 3-4 months myself
Heart update on serious problems around heart medication lesson i had to learn.
Hey bud, Sorry you're feeling so crappy. (I originally said s**tty but I guess some people get offended reallllllly easily and youtube does too! :) Yeah that would really bug me if I spent that much on drugs and couldn't use them. I've actually had that happen and ended up giving them to my doc to give to someone else who couldn't afford it. Not suggesting you do that just saying what I ended up doing one time. Well lets hope you start feeling better right quick! I'm guessing you've taken the blood thinner before as you've mentioned blood thinners prior so you're probably pretty confident that's not the issue. Just hang in there and you'll be feeling better in no time! That's terrific about the hole closure bringing up your E/F. I didn't know that was one of the possibilities. I understood that you E/F was where it would be and the hole closure would just keep it there so I'm glad I was wrong about that!
I have a friend who's having breathing problems who also has a heart issue. I'm not sure exactly what his heart issue is but something I heard you say in one of your videos really struck home with me and I mentioned it too him and he's seen his cardiologist and that's exactly what it was! So know your video really helped someone in a similar situation. Probably not much consolation but I thought I'd mention that you really helped him. He was at his wit's end.
Anyway I tend to be wordy so don't feel you need to respond to this, just know we're thinking of you and praying and hoping for the best! Stay strong brother and you'll be feeling better before you know it! I say that confidently as getting over any procedure takes time as you well know. Okay I'll stop now before I end up getting banned!
peace
Thanks, and that's part of the reason i do these videos is to help educate others so great to hear it's helpful. Def getting better, just gotta keep being healthy every day until i'm in a better situation, at least as good as before surgery!
@@NoLimitsNoRegrets Fingers crossed!
Question: Is it normal to wait months for an appointment? My doctor referred me to cardiology, but my appointment is 4 months away! I’ve had a funky mitral valve for years w/o any issues, but now having concerning symptoms (SOB, chest pain, fatigue). I went from being VERY active & healthy to hardly able to take a shower. And now I have to wait…it’s very stressful. Thank you for your videos; they are so helpful.
Unfortunately that can be the case. the way i manage some of that is for instance, i needed to see my interventional cardiologist, but by the time the appt came, they told me they had to delay it 3 months, so i went to my general cardiologist, who could see me sooner, he ordered tests, found the problem, and i was able to get a procedure by the interv. card. you can also try a primary care doctor. if he sees a serious situation, he can start things in motion and might be able to get you in sooner that way. It's good you identified the issue, i know it's not fun as i'm going through more breathing issues again myself, but try knocking on other doors too. Appreciate the kind words and glad the videos are helpful!
I think you're onto something with those meds for an otherwise healthy person. I've quit every statin or bp med they've ever put me on. They all make me feel horrible! Like HORRIBLE horrible!!
i totally get things like thinners for the stroke risk, but logically, a med that drops blood sugar or blood pressure for someone who has good numbers is going to make the numbers too low. that was the worst/puniest i've felt throughout my entire heart journey. sorry you're having issues too. have to think about everything in detail along the way!
I was going to ask if you if you had experienced any mental deficiencies with your heart medications. I didn’t think I was having any mental issues but clearly everything is more difficult by quite a bit. Ramping up the entresto and been noticing it more. Just added Spironolactone. I have low blood pressure. Zero heart attacks. My. Bp was super low to point they called code and put me in heart ICU. I’d have to look at my records to verify the numbers. Entresto through CVS mail order is $100.00 for 90 days (blue cross blue shield health insurance internal pharmacy) Just an fyi . Safeway quoted $1,000.00 for 30 days. Might be an option? 1/10 cost
The super fatigue is my experience too. The drunk driving feeling was my feeling too. So I just don’t even consider getting on my S1000RR. But I’ve done it a couple times. Just to temp death right?😂 kidding. But not completely. Maybe testing the grim reaper more accurately. 😅
It’s a real tough choice making these choices knowing nobody has a crystal ball and perhaps something could rapidly alter an outcome. And the side effects are fairly significant. Especially combined. I’m on 5 right now. Pretty difficult to hear they are permanent. I missed the ‘chronic’ part of the diagnosis of “chronic heart failure”. Perfect example of the mental deficiencies. Entresto label said “take one…” I stopped reading. The full label said “take one tablet TWICE daily” It took me a month to notice my oversight in a single sentence. Wow.
@@EtaSoon777 i don't plan on ever touching entresto again after my experience. i'm surprised they still have you on it with your BP that low?? mental stuff...after anesthesia, which i had twice that week, i tend to get weird dual reality dream worlds in my head for a bit, little foggy, but usually that clears out.
@@EtaSoon777 nice, and no judgment, i was on the aprilia 2 days after my colonoscopy too haha. i was only taking one entresto a day, lowest dosage, and it screwed me up bad. low blood pressure isn't good, and me being very active and barely able to get out of bed? no thanks. i don't care how long it might add to my life, i'll take a little more time of quality living over feeling like death any day!
Did you consider having valvuloplasty, Ross or at least mechanical instead of sticking to tissue valves? Wouldnt it be better?
Lots of history, but the first surgery was an attempt to repair native valves, gave out 4 days later, chordae were trashed he said. i went with tissue as there were no limits on daily life, no blood thinners, diet constraints, etc. this last time, we had the discussion again on mech vs. tissue. i did more research, and still took the tissue approach, not only for the quality of life day to day, but you do have higher stroke risk with the mech valves and have to be really careful about your blood thinness meds, testing, results, etc. the way mine is failing now coming loose at the edge, a mechanical would've had the same issue. had i gone mechanical the first time, i may have had a lot less issues, but daily life would not have been as enjoyable and the higher risk of stroke. to each their own, this is just what i've chosen.
Why cant u get another tossue valve a third time?? My doctor told me they can put 3-4 in my airtic valve no problem
Is it more of a mitral hyprid valve issue as to why or is it just so damged bc i need to make a decision here 3-4 months myself
Was ur heart in really bad shape before ur first sirgery amd u didnt know it??? What was ur ejection fraction ur first surgery do u rememeber???
Im rooting for u big dog u have inspired me im 34 about to get my first surgery
@@billcastrodale4793 same age as when i got my first one!