25 y/o going in for valve surgery next Tuesday: Concerns

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barron6565

Member
Joined
Feb 18, 2012
Messages
11
Location
Pa
My name is Barron, im a 25 year old male going in for valve surgery next Tuesday. I was diagnosed with BAV disease at the age of 19 when i first started to experience some exercise intolerance. Since then i have become more symptomatic each year to the point now where my symptoms seem to be debilitating. I was in grad school and was unable to finish due to the symptoms that i am experiencing. Symptoms that i currently experience are shortness of breathe, tiredness, edema, and heart palpitations. I was diagnosed with severe aortic regurgitation 2 months ago and now require surgery. Unfortunately, this would have been done alot sooner and my life would have been in order if it was due to the incompetence of a few medical professionals who explained that this wont affect me until im in my 50's and would do nothing about it. However, its funny how they were unable to explain why i was getting any symptoms. Thankfully, with my persistence, i was able to find a Dr who would listen to me and perform a cardiac cath that would explain why i am getting these symptoms. Currently, i am going in next Tuesday to either get a aortic valve replacement or a repair. The surgeon explained that he does not know how shot my valve is and will only know once he has opened me up. If repair is unable to be performed i chose to be fitted with a pig valve.
I have gone through numerous posts here and saw that alot of people are still experiencing the same symptoms that they were having before surgery. Since reading some, i have developed general anxiety about the post op symptoms. I understand that this is not an easy surgery and there will def be a good time for a strong recovery. I would just like to know if there are some people out their who have had valve replacement surgery/repair that were symptomatic beforehand and the surgery has relieved these symptoms and they were able to put their life back together. I'm reading too many horror stories, i need some success stories.
To add a bit more. I do not have anything else wrong with my heart. My left ventricle is not enlarged and i do not have any hyper/hypotrophy. I have read some posts on here that were asking questions and people responded by explaining their condition in terms of heart failure. Just to clarify. A person that has an aortic valve with regurgitation and is symptomatic does not classify as congestive heart failure. Regurgitation/stenosis can lead to heart failure but the symptoms we experience mimic heart failure.
If you made it this far, i appreciate you reading my rant and hope that you can share a positive post op experience.

-Barron
 
Hi, Barron-
I can tell you pre-surgery that I often felt weak, like I had low blood sugar. I could not do inclines or stairs well. I would even get dizzy standing in line at the store if I was holding something that weighed more that a pound or so. I also had heavyness in the center of my chest--like a weight was there. I also couldn't lie on my left side for more than a few minutes or I would run out of breath. These symptoms were not there all the time, but when they kicked in I felt very anxious about my heart just deciding to quit on me. I didn't feel sick, but I felt less than strong and frustrated when I couldn't keep up with others my age, you know?


I am 1 year post op and can tell you that all of thoses sypmtoms are gone -- 100%. I can keep up with my friends we go out/walking. I don't worry about sudden death while exercising.

I do have afib (palpitations) that kick in usually at night if I'm overly tired or caffeinated, but it is well controlled with meds. I will have an ablation this year to try to fix it and get off the meds. However, those little flutters are nothing compared to how I felt pre-op.

Hope that helps you feel better. You have something to look forward to post-surgery!

Hope that gives you something to look forward to.
 
The runners, skiers and weighlifters will be along soon. I had a mech valve at 58, was out of hospital after 6 days and slowly built up strength through walking. The pain was astonishingly less than expected, and far less than I experienced with 'minor' problems previously. By 3 months I felt better than I had in years & my scar has now faded - so I only have my warfarin and a gentle ticking to remind me of surgery. Once it was over I really did wonder what all the anxiety had been about!
 
Barron,

I had a different problem than you (MVP with severe regurgitation), but I'm one of those whose symptoms went away completely after surgery. I was breathing better in the ICU unit than I had been for weeks leading up to the surgery. There are people who had post-op complications on the VR family, but I think they are in the minority. One thing you do have to consider is the people who are having problems are more likely to hang around the site for advice. Many others will forget about being here as they settle back into everyday life. Heck, if I weren't an empty nester now, I would probably be on here much less often. But you can look for posts from some of out most recent repair/replacement patients (Nancy, DCC and SB) to see that they are now a week to a month past surgery and things are much better for them than beforehand.
 
Hi Barron and welcome to a forum that can provide you with support and practical information. I am an old man now(76 tommow), but I had my one and only surgery when I was 31. I was also a grad student at the time, and while I had some shortness of breath, I had no other symptos, as far as I knew. Sh-t happens, but in our cases, it is possible to have a corrective surgery that will return most of us to a normal, active life. Education about your condition and available corrective solutions is your best ally. Read and ask questions......I guarantee that there is someone on here that has "been there, done that".
 
Hi Barron. Like Boston Tiger, I also had MVP with severe regurgitation. At the end, I went into A-Fib. I had a MV repair with mini maze procedure. I had no complications afterwards. It's true that I felt like I had been run over by a truck when I woke up, but every day was better than the day before.

Let me add that I was 60 years old when I had the surgery.
 
barron6565,

First off, this is relatively a common procedure and modern medicine is truly on your side as the medical profession has the heart down - like riding a bike for them! I am 42...This upcoming Wed., (02/22) I will be 5 weeks post-op from bicuspid aortic valve replacement / OHS. I had the best experience...came to singing Go, Tell It on the Mountain and when I finally had the breathing tube (in my opinion, the worst part) removed, I was able to make some calls to family members a few hours later the same day, not that I remember the conversation so much - LOL. My pain level stayed at 1.5 - 2.5 (on a scale of 10 being worst). Except for when I coughed, which hurts very much, but they give you a pillow to squeeze to assist a little. I never sneezed, but heard that is much worse. I have been off of my prescribed pain narcotics since week 2.5. I am now strictly taking OTC Tylenol (not recommended to use Advil as Advil supposedly has ingredients that slows the bone healing). Was in hospital for 3.5 days, putting a couple of hours in at work, albeit from home, my first week home. Cleared to drive at 3 weeks (which I hear is typically 4 weeks, but varies). At 4 weeks, was told I didn't have to sleep on my back anymore, although I choose to do so. My next milestone is six weeks where I will be able to lift more than 5 pounds, which means I can start holding my young children again! At 8 weeks I begin Cardiac Cardio where they monitor the vitals as you begin to work getting your stamina back. Oh, by the way, you will most likely be walking the next day or two after surgery with the expectation to build it up to 1 or 2 miles of walking a day over the first couple of week. My 3 month anniversary (04/11) I am being told that ALL my restrictions will be removed.

Many factors play into healing and our bodies all heal differently. So don't look too deep into how one has healed so well or maybe not so well. Age, lifestyle and many other factors will play into your own personal healing. 80% mental...stay positive, but have that resource where you can release your valid emotions! Waiting is difficult, but once you have your operation, you will be on the road to a speedy recovery! I will send you a private message of a document that I sent to family and friends the day prior to my surgery. Do your research and get all of your questions answered by your doctors. Keep your chin up!

Good luck,

Scott
 
Hi Barron,
Welcome to the board,
Good luck for next week, will be thinking of you! Keep us updated! :)
Love Sarah xxx
 
Barron,
I was starting to get symptomatic before OHS but after surgery I got into a great cardiac rehab program with really good nurses and trainers and five months after surgery ran my first 5-k race. I wasn't fast but I ran the whole thing. There are other more fit athletes on here who returned to running within a few months or less. You are much younger than I and I would expect that your recovery will be faster and better than mine. I think you will find relief from your symptoms, but everyone heals at different rates, so take it easy at first, but then get out and exercise, especially by walking at the beginning and as you feel better increase the physical activities that you enjoy. I will be 4 years in March and I feel great!

As far as the heart failure thing. The way I understand it, you are in heart failure when your heart starts compensating for it's defect. Once that BAV is repaired or replaced the heart should remodel back to it's normal self or at least not compensate for the bad valve anymore.

Take care of yourself and best wishes for your surgery next Tuesday,
John
 
I too am 25, and go in for my first AVR on Thursday, you and I must be on 2 different sites. OHS is to be taken seriously, I was a wreck when I found out, than this site was recommended to me. With it came knowledge, with knowledge came the power to help calm the nerves. I find myself reading more success stories than horror stories, there will be some things that are probably not pleasant, however unless I'm missing something, I rarely see anything but good advice and usually smoothe recovery updates. Either way, welcome to the board, nice to have someone the same age around, good luck on your big day. I'll be rooting for you.
 
Hi Barron,
I am scheduled for surgery on the same day! For me, it's a mitral valve, but as far as I can tell OHS is OHS no matter how you slice it. I just turned 40 and have always been asymptomatic (for the most part). I also have a 3 year old daughter, so you can imagine it was pretty tough for me to decide to move forward with this surgery. This site has been very helpful in calming my fears. My favorite thread is the Post Surgery Sticky about what surprised people most. Many are surprised about their LOW pain levels and SHORT recovery times. Sure people have a few bumps and some painful experiences like coughing, sneezing, tubes, but that doesn't last, and when your all done you have a heart that works right! I think that's worth it.
Good Luck on Tuesday...I'll be right there with ya!
~Lisa
 
OK, so here I go.....sure, some people have problems, it is major surgery. Others, like myself, are back in shape in no time. I ran a half marathon in September 2006, became symptomatic in November (could not run a mile!), had surgery in January 2007, ran a marathon in October 2007. So, yes, all my symptoms are gone. Try not to get overwhelmed by the bad....concentrate on doing everything you can to get better.
 
I had a similar experience. My bicuspid aortic valve was diagnosed at 30 but they said it would be 20-30 years before I'd need surgery. I then moved, found a new cardiologist, and he said within 5 years. After a couple of tests and everyone shortened it to 6 months. My regurgitation progressed to severe in a year. I am now 9 weeks post-op with a mechanical valve. During 2011, I saw a steady decrease in my running and cycling speeds. In the fall, I noticed a general tiredness. I would get home from work, eat dinner, and fall asleep on the couch by 8 pm. It would be a struggle to stay up to 10 pm. After surgery, I am getting back the strength I had and more. I started running again on the treadmill at cardiac rehab and I wasn't gasping for air with my mouth wide open like last summer, I could run at the same pace and breath just fine through my nose. I can spin on my bike trainer for an hour at a decent pace and not be huffing and puffing like before. It isn't until now, after surgery, that I can really identify what my symptoms were. I thought I was asymptomatic for the most part. However, now I see how I should have been with the amount of training I was putting in. My body had gotten so used to the limited output by my heart that I didn't realize how depressed my exercise output was.

I did have some enlargement of my left ventricle, but the TEE after my surgery showed no enlargement. I don't understand that. I have found my symptoms are pretty much gone. I do notice that stairs still get me breathing hard (my office is on the third floor), but I don't avoid them. For the most part, the only thing I am putting off is starting weight lifting until I'm 12 weeks post-op. My surgeon said in mid-March I will have no weight restrictions and will have permission to lift/push/pull whatever I want. Once I reach that point, I will be doing more strength training along with cardio.
 
A heart felt WELCOME to our OHS family glad you found the site most of the community are OHS brothers and sisters,(read no medical professionals) there are some minimally invasive surgeries as well so ask away, there is a wealth of knowledge here for the future .....


Bob/tobagotwo has up dated a list of acronyms and short forms http://www.valvereplacement.org/forums/attachment.php?attachmentid=8494&d=1276042314

what to ask pre surgery http://www.valvereplacement.org/for...68-Pre-surgery-consultation-list-of-questions

what to take with you to the hospital http://www.valvereplacement.org/forums/showthread.php?13283-what-to-take-to-the-hospital-a-checklist

Preparing the house for post surgical patients http://www.valvereplacement.org/for...Getting-Comfortable-Around-the-House&p=218802

These are from various forum stickies and there is plenty more to read as well


And Lynw added this PDF on what to expect post op
http://www.sts.org/documents/pdf/whattoexpect.pdf
 
barron6565 said:
My name is Barron, im a 25 year old male going in for valve surgery next Tuesday. I was diagnosed with BAV disease at the age of 19 when i first started to experience some exercise intolerance. Since then i have become more symptomatic each year to the point now where my symptoms seem to be debilitating. I was in grad school and was unable to finish due to the symptoms that i am experiencing. Symptoms that i currently experience are shortness of breathe, tiredness, edema, and heart palpitations. I was diagnosed with severe aortic regurgitation 2 months ago and now require surgery. Unfortunately, this would have been done alot sooner and my life would have been in order if it was due to the incompetence of a few medical professionals who explained that this wont affect me until im in my 50's and would do nothing about it. However, its funny how they were unable to explain why i was getting any symptoms. Thankfully, with my persistence, i was able to find a Dr who would listen to me and perform a cardiac cath that would explain why i am getting these symptoms. Currently, i am going in next Tuesday to either get a aortic valve replacement or a repair. The surgeon explained that he does not know how shot my valve is and will only know once he has opened me up. If repair is unable to be performed i chose to be fitted with a pig valve.
I have gone through numerous posts here and saw that alot of people are still experiencing the same symptoms that they were having before surgery. Since reading some, i have developed general anxiety about the post op symptoms. I understand that this is not an easy surgery and there will def be a good time for a strong recovery. I would just like to know if there are some people out their who have had valve replacement surgery/repair that were symptomatic beforehand and the surgery has relieved these symptoms and they were able to put their life back together. I'm reading too many horror stories, i need some success stories.
To add a bit more. I do not have anything else wrong with my heart. My left ventricle is not enlarged and i do not have any hyper/hypotrophy. I have read some posts on here that were asking questions and people responded by explaining their condition in terms of heart failure. Just to clarify. A person that has an aortic valve with regurgitation and is symptomatic does not classify as congestive heart failure. Regurgitation/stenosis can lead to heart failure but the symptoms we experience mimic heart failure.
If you made it this far, i appreciate you reading my rant and hope that you can share a positive post op experience.

-Barron
Click to expand...


This posting is now on the family calendar
 
I don't know how you got the impression that AV repair or replacement does not resolve symptoms of heart failure, like you have. That is simply not the case. This is the most successful form of OHS, period. Perhaps all 10's of thousands of people this surgery helps each year are simply out enjoying their new-found energy and stamina rather than hanging out and posting here. Yes, people who are having post-op issues do tend to come here more seeking help. But without a doubt the huge majority of AVR patients do very well and lead normal lives. As my surgeon made abundantly clear, after a recovery period of about 6 months, there would be ABSOLUTELY no restriction on my activity. NONE. ZERO. NADA. And that is despite a repair patch job made to my rather fragile ascending and transverse aorta. So, I encourage you to look at the other side of the coin. Without this surgery you will do progressively worse and worse. Without it I would have been dead as a doornail by now. Instead I'm able to do anything I want to do. I ride motorcycles, race cars (even over 200 MPH), work on cars, whatever. Not bad for a 64 year old. And I don't plan to slow down anytime soon. Get the surgery, endure the recovery, and start enjoying the rest of your life, young man.

I will add that one of the key things to a very successful recovery is cardiac rehab. This is a monitored exercise program beginning about 6 weeks post-op and continuing for 12 weeks, and universally covered by insurance. These programs are staffed by nurses and exercise therapists who know what they are doing and will get you back in shape. You will likely be the youngest guy there, but don't let that distract you from the plain fact that you will do much better if you go though this program than you would do left to rehab yourself.
 
I've came back home on 2/13 from my AVR. Let me start by saying that everyone has a different experience and recovery. But this surgery was NOTHING like I had envisioned it. The surgery went extremely well and I was discharged a day early. While my energy level is still low, I can't believe how well I'm doing. Coughing isn't easy but a necessary part of recovery.

As everyone posts - waiting is the worst part of it. Best of luck to you. I'll be watching for your messages when you come home.
 
I am bumping this thread to see how Barron is doing. I think his surgery was last week on Tuesday and wanted to make sure he is doing well and on the road to recovery.
 
Hey. Thank you everyone for the replies and words of encouragement. I'm 5 weeks post op now and am feeling a little better. I do tend to get tired quickly but my endurance is building up slowly. I know my recovery will prob take a bit longer since I have been symptomatic for around 3 years.
 
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