So i can see in my journals that every cardio since May 21(op feb 21) has found mild pvl (let ranlækage) , i dont know why it was not seen before may, could ...Read more
So i can see in my journals that every cardio since May 21(op feb 21) has found mild pvl (let ranlækage) , i dont know why it was not seen before may, could be it be because i had nearly a liter of fluid removed from around the sack a few weeks after the op?. Anyways my anxiety got the better of me and i googled. The studies i found didnt help as all of them mentioned increased morbidity:-(Have any of you lads dealt with it,both minor and major?
Marie Myers Is that perivavular leakage? Or slight regurgitation of the valve? Not sure what that abbreviation is ... Read more
Marie Myers Is that perivavular leakage? Or slight regurgitation of the valve? Not sure what that abbreviation is. As for as Google-induced anxiety, I understand that. Sometimes the information and statistics quoted in online articles only pertain to a small , select group of patients. We shouldn’t generalize all information online as applicable to our own situation. It isn’t uncommon to need fluid drained off the lungs and sometimes the heart after surgery. I needed the lung drained, and I know I have read other stories on here about pericardial sac drainage in the post op period. Best to get information from your doc about your particular situation.
patrick frømling Yep its a Paravalvular leak, and i know Googling is foolish and self harming, but its really hard not ... Read more
patrick frømling Yep its a Paravalvular leak, and i know Googling is foolish and self harming, but its really hard not to when you want answers to the questions anxiety asks
Marie Myers I hope you can get some answers on the leak!
Hey so wanted to post and update as it's almost been 2 years since i got my on x and graft, I've been doing good, working out and been working on the mental ...Read more
Hey so wanted to post and update as it's almost been 2 years since i got my on x and graft, I've been doing good, working out and been working on the mental aspect of the surgery. But as good as I've been and had a massive setback last month, my girlfriend noticed my right anckle was a bit swollen st the left side of my Achilles tendon, i was taken to the doctor who said that it wasn't water but like bruise, and had a echo done the day after on my leg where everything was fine. But two days later i started having s sore feeling in my chest bit left from my stern, about s quarter in size and was dizzy/lightheaded that was worsened by walking around. So i was sent to the ER, ekg, bloodwork and echo, and a CT week later. everything was fine, except my trinponin which was 35 (was 140s pre surgery) where it's supposed to be 5 in normal people. so i was sent home, and had to get appointment with the cardiologist I'm being followed by, at a different hospital. she did a scan aswell, and everything was fine, so fine that she said, the next appointment would be in two years. I was happy but scared, as i still had this wierd soreness/squeezing feeling, and dizziness. I started doubting if both hospitals missed something, and getting really anxious about it. My own doctor doesn't take is seriously, and i'm starting to feel like I'm wasting people's time.
I'm lost as to what it could be and I've been getting terribly depressed over it. Do hope everyone else is doing good
Marie Myers How frustrating for you! It sounds like a baffling set of symptoms, so I hope you find some answers. ... Read more
Marie Myers How frustrating for you! It sounds like a baffling set of symptoms, so I hope you find some answers.
Patty Parrish Patrick, I am so sorry to hear of this new trouble. I strongly to keep pushing for answers. Whether ... Read more
Patty Parrish Patrick, I am so sorry to hear of this new trouble. I strongly to keep pushing for answers. Whether it's another doctor or internet research, I wish you good luck.
Pamela Gregory You are not wasting anyones time! You know your body and how you feel. Its good the tests are not sh... Read more
Pamela Gregory You are not wasting anyones time! You know your body and how you feel. Its good the tests are not showing anything major wrong, but something is going on that is making you feel the things you are feeling. Stay on top of it and try not to panic (easier said than done). I will be sending my best prayers that you get a solution ASAP
Klara Čičić Oh dear Patrick, I am so sorry you are going through this setback. Sounds like they excluded major em ... Read more
Klara Čičić Oh dear Patrick, I am so sorry you are going through this setback. Sounds like they excluded major emergencies. It is frustrating since you still have this terrible feeling but try to trust medical judgement that it probably isn't that serious and therefore don't let panic overtake. It is so hard to establish a diagnosis sometimes... I hope you find your anwser soon! Keep us posted and hang in there, warrior!
Rose Madura Patrick, I'm a strong believer that nobody knows your body better than you. You may try to get a seco ... Read more
Rose Madura Patrick, I'm a strong believer that nobody knows your body better than you. You may try to get a second opinion. Your symptoms are odd. There's nothing worse than knowing you don't feel right and then being told nothing is wrong. I hope you get some answers. Please keep us posted.
Ana Brusso Patrick, how is your Achilles now? As far as dizziness and lightheaded there have been a few of us on ... Read more
Ana Brusso Patrick, how is your Achilles now? As far as dizziness and lightheaded there have been a few of us on this site that have had that happened after open heart surgery and a few months. I had that and ended up in the ER. After many tests they couldn’t find anything wrong. But like Rose I believe in second and third opinions until you are satisfied.
patrick frømling Thanks for all the replies ☺️ I've been checked twice in total with two echoes one CT and multipl ... Read more
patrick frømling Thanks for all the replies ☺️ I've been checked twice in total with two echoes one CT and multiple bp and egks. I doubt it's major but it is terrible not knowing what to do. I've had my eyes checked and they're fine. Next is ears and il continue to bug my doctor
patrick frømling @anna brusso what did you do after? Did you ever find out what it was? And did it appear years after? ... Read more
patrick frømling @anna brusso what did you do after? Did you ever find out what it was? And did it appear years after? Achilles is still swollen but it's not majorly swollen or anything just a little
Ana Brusso No Patrick it didn’t come back and no one told me what caused it. Praying you heal soon, God bless ... Read more
Ana Brusso No Patrick it didn’t come back and no one told me what caused it. Praying you heal soon, God bless you
Did anyone here, have a high heart rate months after surgery? I'm 3 months out, and find my resting heart rate( 80-90s) is alot compared to the 60s before the ...Read more
Did anyone here, have a high heart rate months after surgery? I'm 3 months out, and find my resting heart rate( 80-90s) is alot compared to the 60s before the op. Had a 3month checkup where they said everything's fine, but I'm super anxious about it. As i can feel my heart constantly beating when laying or sitting with my back on something.
Lynn Loudermilk prior to surgert 60-80 now 80-90s. I try to ignore it, normal bpm goes to 100.
Deena Z normal, Patrick. No need to worry. My heart rate is higher than yours three months out. You sound ... Read more
Deena Z normal, Patrick. No need to worry. My heart rate is higher than yours three months out. You sound like you are in good physical shape.
Marie Myers Anxiety itself can raise your heart rate also. It is a tough cycle to break. Are you on any anxiety m ... Read more
Marie Myers Anxiety itself can raise your heart rate also. It is a tough cycle to break. Are you on any anxiety meds? Sometimes beta blockers can help decrease your heart rate and help lessen your response to stress and anxiety. Wishing you a speedy recovery!
Rita Savelis I still have a high heart rate 6 yrs later. Usually one is on a betablocker for some months or years ... Read more
Rita Savelis I still have a high heart rate 6 yrs later. Usually one is on a betablocker for some months or years after OHS to slow the heart down and give it a break. I stopped betablockers after a year, but my heart rate is sill high. No doctors are worried about it.
As for hearing your heart beat, yes, one does and it can be very loud and strong. It's hard to get used to. And then you do. And it comes and goes.
It is still very very early for you. Your heart has been through a lot. It should slow down after a few months and you should become less aware of the beating.
I hear you on the anxiety. Post-operative anxiety is a thing. You've been through a lot. Wishing you some peace as you recover.
patrick frømling Thanks all for the replies, yes I'm on anxiety meds, and I know it's a viscous cycle to break but I f ... Read more
patrick frømling Thanks all for the replies, yes I'm on anxiety meds, and I know it's a viscous cycle to break but I feel like the high heart beat is a waste of my time (in a sense that the heart only beats so many time in our life)
Thomas Brusstar It has been almost 3 years since my mitral valve repair, and I would say my resting heart rate is abo ... Read more
Thomas Brusstar It has been almost 3 years since my mitral valve repair, and I would say my resting heart rate is about 10 beats per minute higher than before the surgery. It's fine, as it was very low before, so now more like 65, instead of 55.
Marie Myers I feel that way also, about having only so many beats on that valve. I asked my cardiologist if I was ... Read more
Marie Myers I feel that way also, about having only so many beats on that valve. I asked my cardiologist if I was too active playing tennis and pickleball, and they assured me that it is better to be active and in shape. I hope they are right, cuz t I feel better being active. But I do understand the anxiety of it all!
Deena Z Patrick, it is a scary journey, yet you got through it. Listen to your cardiologist and surgeon. The ... Read more
Deena Z Patrick, it is a scary journey, yet you got through it. Listen to your cardiologist and surgeon. The stress is on them to tell you what you need to know. Believe in their expertise.
Else Reed Had mitral valve surgery 3 weeks ago. Before surgery, my resting heart rate was 54. Now it is 79. I h ... Read more
Else Reed Had mitral valve surgery 3 weeks ago. Before surgery, my resting heart rate was 54. Now it is 79. I hope it will come down more once I start rehab.
Carlos Banuelos I was active before surgery and continue to be so after surgery. I too experienced a higher heart ra ... Read more
Carlos Banuelos I was active before surgery and continue to be so after surgery. I too experienced a higher heart rate after surgery for about 4 or 5 months as I got back to my normal exercise routine. As I type this message almost 2 years post surgery, my heart rate is high 40’s. Even slightly lower than presurgery. I’m sure yours will go back to normal soon as well. Try not to focus on it too much. I stopped wearing a watch bc I didn’t want to see my pulse - it only created anxiety.
So im pretty much set for operation in the next few months (avr and getting My 4.8 aorta fixed) ive sorta Come to terms with it, but f💢ck me im scared, not ...Read more
So im pretty much set for operation in the next few months (avr and getting My 4.8 aorta fixed) ive sorta Come to terms with it, but f💢ck me im scared, not so much for the recovery, but for the chance i May never wake up once they put me under anesthesia.
Or the chance for clots to form and hit me with a strokes.. Not the Thing Any 25year old wants to deal with.. Pyuh
Civita Fahey your feelings are very normal. We have all been there and felt that. But, trust in your surgical team ... Read more
Civita Fahey your feelings are very normal. We have all been there and felt that. But, trust in your surgical team and that this to them is a routine surgery. I know its sounds crazy, that they will open you up and cut into your heart etc and its routine, but, they have been doing this type of surgery for over 60 years and they have it down pat. that's what got me through and of course had trust that the Lord would watch over me. Best of luck and I know you will do just great!
Civita Fahey Let all of us who have come through it be your guide. You're young and that's a huge plus! The nerves ... Read more
Civita Fahey Let all of us who have come through it be your guide. You're young and that's a huge plus! The nerves will get to you, but, try to relax and focus on recovery. Let me know if you have any questions, would be happy to answer.
Marie Myers Totally agree with what Civita says. I am sorry you have to go through this surgery at such a young a ... Read more
Marie Myers Totally agree with what Civita says. I am sorry you have to go through this surgery at such a young age. But, your body is more resilient and will heal quickly. I was totally surprised to find out that my surgery ( AVR, aortic root and ascending aneurysm resection) is considered a routine procedure! Try to focus on the recovery, not the “what-ifs “ that your thinking/ worrying brain throws out at you. Wishing you a smooth trip through surgery and recovery!
Steven Methot I just had my CT scan today to compare with last year's, then it was 5 or 5.1. So I may be joining y ... Read more
Steven Methot I just had my CT scan today to compare with last year's, then it was 5 or 5.1. So I may be joining you soon.
Jim Archer Patrick, it sounds like Marie and I had similar procedures, just the same as many others on this site ... Read more
Jim Archer Patrick, it sounds like Marie and I had similar procedures, just the same as many others on this site, Mine was last April for the AVR and of repair the 6.8 cm dilatation of the ascending aorta. Just a bit of Dacron to replace the root, a Dacron sheath above that, and a new bovine valve from Edwards.
Going in to the 8 hour procedure I was very relaxed, maybe being 71 and knowing the odds were 20 to 1 in my favor helped. Even though I felt fine, knowing there was a high probability of an aorta rupture certainly influenced my attitude. Your trepidation is normal, but if some old(er) dude like me can do it, so can you. Just so you know, I am off most meds now, and working out for 90 minutes a day. Good Luck! You will be fine.
You can see my story on my journal here.
Chris Hall Anyone who tells you not to worry has never been through what you are going through. Everyone of us h ... Read more
Chris Hall Anyone who tells you not to worry has never been through what you are going through. Everyone of us has thought about our mortality as we navigated through this. With that said trust your doctors, research research research, lean on this community and plan your recovery. Plan your recovery. 8 weeks ago I had the same thoughts. 7 weeks ago I had surgery. 7 weeks later I can't believe how good I feel. Good luck!
so doc told me i might have this. so far this heart thing isnt going all that well.
Marie Myers I think there have been a couple people on here who had a unicuspid valve. Hopefully they will see th ... Read more
Marie Myers I think there have been a couple people on here who had a unicuspid valve. Hopefully they will see this and relate their stories. I totally understand your feeling of overwhelm at your newly diagnosed condition. Take 1 day at a time, 1 doctor visit at a time. Try not to worry about the “what-if’s”. And write down your feelings and questions in this forum. Be easy on yourself, it is a tough, but doable journey.
Lorraine Willmann I put my comment and link in the wrong place below. Just don't want you to miss it in case it could ... Read more
Lorraine Willmann I put my comment and link in the wrong place below. Just don't want you to miss it in case it could be helpful. Marie, Thank you for saying what I was feeling but couldn't put into words.
Charles P Hello. Hang in there! I've still got my unicuspid aortic valve, but will need it replaced soon. Had m ... Read more
Charles P Hello. Hang in there! I've still got my unicuspid aortic valve, but will need it replaced soon. Had my ascending aorta replaced with Dacron tube 7.5 years ago. Best thing for you to do is stay healthy and exercise (safely) as much as possible. The better shape you are going in, will help recovery and success. Try to stay positive!
been at my cardiologist yesterday and and after a cyckle test,echo and a scan through my throat ive been told that it has calcified alot since 14, and i should ...Read more
been at my cardiologist yesterday and and after a cyckle test,echo and a scan through my throat ive been told that it has calcified alot since 14, and i should expect to have my aorta valve replaced soon.
im terrified and scared
Susan Lynn Welcome, Patrick! You've come to the right place. There are lots of aortic valve heart warriors ... Read more
Susan Lynn Welcome, Patrick! You've come to the right place. There are lots of aortic valve heart warriors on this site just waiting to answer any questions you have! Being terrified and scared is perfectly normal. You'll feel ready to get it done by the time your surgery date arrives. It's a definitely an emotional process, but you'll get there! ❤
Pat Bluemel I wish there was an easy way to let you know it all works out and not to worry but it's a process. On ... Read more
Pat Bluemel I wish there was an easy way to let you know it all works out and not to worry but it's a process. One we've all gone through. You've found a good group for questions and support.
Meredith Bray Hi Patrick, glad you found this site. If you're terrified and scared, you are normal - we have all be ... Read more
Meredith Bray Hi Patrick, glad you found this site. If you're terrified and scared, you are normal - we have all been there at some point. Please look around and read other's journals, and ask any questions you want. Every single person on this site is either waiting for surgery, or has had surgery. Some are near their surgical date, and some are quite distant. It'll be 7 years for me in March! Let us know what questions you have!
Meredith
Clearwater, Florida
USA
Lorraine Willmann Patrick, I found out I needed a replacement a few months ago and been delaying. Not the smartest thin ... Read more
Lorraine Willmann Patrick, I found out I needed a replacement a few months ago and been delaying. Not the smartest thing, I know. I'm getting braver, or smarter, and plan to call surgeon next week to set a date. Just curious, when you mentioned your valve had calcified a lot since "14". What date does the 14 refer to?
patrick frømling @meredith how do you deal with the feeling or rather fear, that you wont wake up from the surgery? im ... Read more
patrick frømling @meredith how do you deal with the feeling or rather fear, that you wont wake up from the surgery? im terrified of them putting me to sleep and never waking up again.
Rose Madura Hi Patro I, try to remind yourself that these operations are done every day and the doctors know what ... Read more
Rose Madura Hi Patro I, try to remind yourself that these operations are done every day and the doctors know what they are doing. The mortality rate is very low so the odds are definitely in your favor. Trust the doctors.
Pat Bluemel @Patrick - put the alternative (not waking up) out of your mind, that's what I've done. Don't even th ... Read more
Pat Bluemel @Patrick - put the alternative (not waking up) out of your mind, that's what I've done. Don't even think about it. If it's not an option, it won't happen. Easier said than done but wire your brain to default to waking up as the only option for you. As Rose said, these surgeries happen every day, everything works out, you'll be ok.
patrick frømling @rose @pat yes the mortality rate is on the low end, but shaking the fear is hard, i cant stop thinki ... Read more
patrick frømling @rose @pat yes the mortality rate is on the low end, but shaking the fear is hard, i cant stop thinking about leaving behind those i love should i pass
Susan Lynn Patrick - It's so admirable that your concern is for your family. As we always say, do your researc ... Read more
Susan Lynn Patrick - It's so admirable that your concern is for your family. As we always say, do your research and select an experienced surgeon, team, and facility. They want a successful procedure as much as you do! Your procedure will feel like a one minute nap and it will be behind you. The most important part of getting through this is staying positive - you can do this! ❤
patrick frømling @Susan im not sure if thats an option where im from, denmark is rather small with a limited number of ... Read more
patrick frømling @Susan im not sure if thats an option where im from, denmark is rather small with a limited number of hospitals that deals with such
Lorraine Willmann 2014, tx. you were so young. Patrick, I don't worry much about the not waking up because it's someth ... Read more
Lorraine Willmann 2014, tx. you were so young. Patrick, I don't worry much about the not waking up because it's something you can worry about but do nothing and if it doesn't happen, which chances are it will not, all that worry and wear on your mind is for nothing.
Lorraine Willmann Patrick, I found this website that has a name and number of a person in charge at the end. It also ... Read more
Lorraine Willmann Patrick, I found this website that has a name and number of a person in charge at the end. It also has links you can click on to email some people to find qualified hospitals and doctors
https://www.escardio.org/The-ESC/Member-National-Cardiac-Societies/Danish-Society-of-Cardiology