I found out I had a BAV a few months ago and basically havent stopped crying since. I am a 54 yr old worman. I found this site and it has calmed me down some. I cant believe how this diagnosis has turned my normally boring world, lol upside down. Suddenly to family and friends its what defines me, I dont want to talk on phone to them much cuz its all they talk about mostly. I am so grateful that its a doable problem and I can get through this but my question is, do you ever forget that you had this, does your life ever feel normal again. And now on top of facing surgery, I have three children and two grandchildren that I worry I passed this genectially on too. I am ashamed that I have allowed myself to feel so sorry for myself. Is that normal too?
AVR scheduled for Jan. 7th
- Thread starter katm
- Start date
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WELCOME to our OHS family and my answer is ...... NO you never get over / forget it, but then again you dont want to...... LIVE LIFE AS YOU HAVE NEVER LIVED IT BEFORE ..... as corny as it sounds, after your procedure YOU ARE FIXED and have a whole new world to explore and get the gift every day you wake up........Jan 8th plan a new LIFE PARTY ........Godspeed you along and looking forward to your reports of a smooth recovery.
When I was first told it was time for surgery I was freaked out too. Now I'm 8 months post surgery, and I haven't totally forgotten, but the memories are pretty blurry. For the most part, my life is back to normal (well...as normal as it can be for a mom to a 4 year old). My surgeon said, with time, I will think about it almost as much as I think about my left ear. I know it's there, but don't really pay much attention to it. (Quick Note: My Story is a little different because I had a repair rather than replacement, so no Coumadin and hopefully no re-op for me.) I can say that pre-surgery, I wondered with every funny heartbeat how long my bad valve would make it. Now, I am free from that anxiety, and it is FABULOUS!
Fundy
Well-known member
Its been a year since my surgery and I often forget about it. Its sort of hard to actually believe it even happened.
Your right, the solution to such a deadly problem is definitely a good one.
Even if you did pass this problem on,like you said, the solution is fairly good.
Your right, the solution to such a deadly problem is definitely a good one.
Even if you did pass this problem on,like you said, the solution is fairly good.
Rachel
Well-known member
I also found out that I was born with BAV at a later age (I was 45 when I found out). It took me by total shock as well!!!
My surgery was 16 months ago and since then I've come to terms with the fact that I am a different person than I thought I was. For me, having lived for so long without the knowledge of a heart condition I just saw myself very differently when I found out.
I have been changed from the experience for the better, I am much more grateful for my life and I live it knowing that there are no guarantees. My recovery was a full year (physically about 3 months, emotionally, a full year) but I do feel normal now.
Don't beat yourself up too much; I think this is a life changing experience.
I'll be thinking of you on the 7th.
Rachel
My surgery was 16 months ago and since then I've come to terms with the fact that I am a different person than I thought I was. For me, having lived for so long without the knowledge of a heart condition I just saw myself very differently when I found out.
I have been changed from the experience for the better, I am much more grateful for my life and I live it knowing that there are no guarantees. My recovery was a full year (physically about 3 months, emotionally, a full year) but I do feel normal now.
Don't beat yourself up too much; I think this is a life changing experience.
I'll be thinking of you on the 7th.
Rachel
katm,
Consider this way of looking at things, it has always felt right to me...
Rather than feeling down that I have medical problems and have needed heart surgery two times, I have chosen instead to be grateful. When I pray, I thank God for my many blessings including the blessing of being born in 1962 instead of 1862. With all our modern medicine and knowledge, I'm so grateful that problems like mine can be addressed and I can go on with my life. That wouldn't have been true if I had been born 100 years earlier.
This Thanksgiving season, say a prayer in gratitude for the blessing of aortic valve replacement surgery and see how that feels for you.
Consider this way of looking at things, it has always felt right to me...
Rather than feeling down that I have medical problems and have needed heart surgery two times, I have chosen instead to be grateful. When I pray, I thank God for my many blessings including the blessing of being born in 1962 instead of 1862. With all our modern medicine and knowledge, I'm so grateful that problems like mine can be addressed and I can go on with my life. That wouldn't have been true if I had been born 100 years earlier.
This Thanksgiving season, say a prayer in gratitude for the blessing of aortic valve replacement surgery and see how that feels for you.
Thank you, I need to hear those words. I do know how lucky I am and on a good day I am very thankful but need that encouragement every now and then. Have you noticed a difference between your previous valve and your mechanical one? There is so much to consider between the two, my doctor at U of M is encouraging me towards a bovine one.
I received my bovine valve at age 41. I expected and hoped it would last 15 or 20 years but my body had other plans. The valve became completely calcified and narrow in 8 years. I'm told this was unusually quick even for a younger patient. With my bovine valve, I took a baby aspirin once a day. My bovine valve was silent and I only thought about it when I took my aspirin or saw my scar in the bathroom mirror. My new valve is a mechanical valve because my surgeon and I concluded that we don't really know why my body calcified the old valve so quickly but we have to assume it would happen again, and again...
With the mechanical valve, I now take warfarin and try to make common sense adjustments to my life style. I still ride my bike 10-15 miles four or five times a week but I no longer ride on the street in traffic. I plan to get up on a ladder this weekend to clean my gutters but I won't get on the tall ladder again to paint the outside of my house. I still drink beer but no more than two. I don't consider these changes to be much of a sacrifice. So far, I've had no problems with the warfarin - no bruising and no bleeding. My new valve makes a clicking noise that I can hear when I'm in a very quiet room or going to sleep at night. My teenage son can sometimes hear it from a few feet away but he has that teenage bionic hearing we lost years ago.
At your age, I would not hesitate to get a bovine valve the first time. It may be the only valve you ever need. If it fails, by the time it fails, it will slowly calcify and narrow over time and you'll probably receive a transcatheter valve that is implanted within your first valve without the need for open heart surgery.
With the mechanical valve, I now take warfarin and try to make common sense adjustments to my life style. I still ride my bike 10-15 miles four or five times a week but I no longer ride on the street in traffic. I plan to get up on a ladder this weekend to clean my gutters but I won't get on the tall ladder again to paint the outside of my house. I still drink beer but no more than two. I don't consider these changes to be much of a sacrifice. So far, I've had no problems with the warfarin - no bruising and no bleeding. My new valve makes a clicking noise that I can hear when I'm in a very quiet room or going to sleep at night. My teenage son can sometimes hear it from a few feet away but he has that teenage bionic hearing we lost years ago.
At your age, I would not hesitate to get a bovine valve the first time. It may be the only valve you ever need. If it fails, by the time it fails, it will slowly calcify and narrow over time and you'll probably receive a transcatheter valve that is implanted within your first valve without the need for open heart surgery.
DMS
Active member
Katm
After you get over the initial shock of the diagnosis, reality will temper that and you'll feel better about the great benefits of being able to get fixed up. After having some stents done in 2010 due to a heart attack, I was told I had a murmur indicating a possible bicuspid valve. So, I went along with the job of getting healthy and shedding pounds and forgot about the murmur. In June of 2012 I was doing cross-fit exercise and running a mile on a regular basis and by August I was told to stop exercising. By September I had a valve job. So the point is, I feel for you and understand it.
However, even though it has only been almost 8 weeks I feel so much better in general. I still have aches and pains from the surgery but luckily, very minor stuff. You will feel so much better as you progress after your surgery that I'm sure it will surprise you. For me, prior to surgery, even on good days, the stenosis was causing some tiredness or lethargy until it got more severe. You may feel the same. Just wait 'till you feel the new you.
There are many times during the day I forget about all this and the BAVR and just carry on as normal. I guess it is just the "new normal". But, it ain't bad at all. As far as the hereditary concerns, I am not a mom but I can understand the issue. Good news is; it can be detected and monitored so they may have an easier time than you had. I just told my daughter to get checked. Really not much more to be done I guess.
Good luck and best wishes with your "new normal".
After you get over the initial shock of the diagnosis, reality will temper that and you'll feel better about the great benefits of being able to get fixed up. After having some stents done in 2010 due to a heart attack, I was told I had a murmur indicating a possible bicuspid valve. So, I went along with the job of getting healthy and shedding pounds and forgot about the murmur. In June of 2012 I was doing cross-fit exercise and running a mile on a regular basis and by August I was told to stop exercising. By September I had a valve job. So the point is, I feel for you and understand it.
However, even though it has only been almost 8 weeks I feel so much better in general. I still have aches and pains from the surgery but luckily, very minor stuff. You will feel so much better as you progress after your surgery that I'm sure it will surprise you. For me, prior to surgery, even on good days, the stenosis was causing some tiredness or lethargy until it got more severe. You may feel the same. Just wait 'till you feel the new you.
There are many times during the day I forget about all this and the BAVR and just carry on as normal. I guess it is just the "new normal". But, it ain't bad at all. As far as the hereditary concerns, I am not a mom but I can understand the issue. Good news is; it can be detected and monitored so they may have an easier time than you had. I just told my daughter to get checked. Really not much more to be done I guess.
Good luck and best wishes with your "new normal".
Katm-
You said U of M. Is that U of Michigan or one of the other M states. I had my surgery at U of Michigan (Dr. Bolling). I can't say I "enjoyed" the experience, but the fabulous doctors, nurses and aides definitely made it more tolerable. They even had a massage therapist who came to my room to help with some of the aches and pains.
I was talking to someone who was having carpal tunnel surgery today. Seems that people feel guilty when they "whine" to me about their surgeries because mine was "so much worse". I have to tell them, "maybe it was, but I was asleep for the whole thing." Ha ha!
Just another way to look at it...you go into some type of prep area (for some the actual OR, for me, just a big area). They start some IVs, and the next thing I knew, I was waking up...all fixed. I had some pain, but probably no worse than any average surgery. My recovery wasn't really that much worse than after having a C-section.
Happy thanksgiving!
You said U of M. Is that U of Michigan or one of the other M states. I had my surgery at U of Michigan (Dr. Bolling). I can't say I "enjoyed" the experience, but the fabulous doctors, nurses and aides definitely made it more tolerable. They even had a massage therapist who came to my room to help with some of the aches and pains.
I was talking to someone who was having carpal tunnel surgery today. Seems that people feel guilty when they "whine" to me about their surgeries because mine was "so much worse". I have to tell them, "maybe it was, but I was asleep for the whole thing." Ha ha!
Just another way to look at it...you go into some type of prep area (for some the actual OR, for me, just a big area). They start some IVs, and the next thing I knew, I was waking up...all fixed. I had some pain, but probably no worse than any average surgery. My recovery wasn't really that much worse than after having a C-section.
Happy thanksgiving!
TheGymGuy
Well-known member
Lots of good posts here already. The life will go on, you will do well, and after and a year you won't even think much about it. If you do remember it will be a lot less of a deal as the time passes and seem like a nice distant memory.
Thanks for the reply, my surgery is at UofM with Dr. Deeb. I live in northern michigan so we have had to travel back and forth three times so far and will be going back down in two weeks for my heart cath. So far the experience with U of M has been positve. I hate docs (except for the one I am married to) lol and hospitals so its a challenge everytime I go there but its getting easier each time. If you dont mind me asking what valve did you decide on, my husband and I are disagreeing some on this topic. He feels like Dr. Deeb that the bovine is best for me but reading on this site has made me question that. Lots to think about
I just want to get it over with, I want that peace of mind like when you wake up in the morning and the only thing you worry about is paying bills and whats for dinner. lol Thanks again for replying,everyone on these sites are so informative and compassionate. It has helped tremendously.
Happy Turkey DAy to you too!
I just want to get it over with, I want that peace of mind like when you wake up in the morning and the only thing you worry about is paying bills and whats for dinner. lol Thanks again for replying,everyone on these sites are so informative and compassionate. It has helped tremendously.
Happy Turkey DAy to you too!
katm,
I don't presume to tell you which valve will work best for you. That decision is entirely up to you and what you believe will work best for YOU and YOU ALONE. But in any case just getting a new valve will in fact allow you to resume your life with lots of energy and likely the only thing that you will need to think about is paying the bills and what's for dinner. Four and half years ago, I took that trip into the OR and the bovine valve I finally chose was the best choice I ever made. I now have energy, and most days I don't even think about that day long ago. I felt fine all the way up to my surgery date (maybe a little more tired but I thought that I was just getting older). Anyway, the first thing my family said to me after my surgery was "Gosh, Mom you have pink cheeks" What a surprise... So enjoy your family over the holidays and soon all these valve decisions will be but a memory... I shall be waiting to read all your updates.
I don't presume to tell you which valve will work best for you. That decision is entirely up to you and what you believe will work best for YOU and YOU ALONE. But in any case just getting a new valve will in fact allow you to resume your life with lots of energy and likely the only thing that you will need to think about is paying the bills and what's for dinner. Four and half years ago, I took that trip into the OR and the bovine valve I finally chose was the best choice I ever made. I now have energy, and most days I don't even think about that day long ago. I felt fine all the way up to my surgery date (maybe a little more tired but I thought that I was just getting older). Anyway, the first thing my family said to me after my surgery was "Gosh, Mom you have pink cheeks" What a surprise... So enjoy your family over the holidays and soon all these valve decisions will be but a memory... I shall be waiting to read all your updates.
I was lucky...mine was a mitral valve that could be repaired rather than replaced. I did choose a "just in case" valve. My husband and I also disagreed a bit on that topic. I didn't want to have to face more surgery, but hubby's father recently had some severe medical issues caused by a minor car accident and an out of whack INR. He didn't test like he should, so I didn't feel that was a good enough argument. I ultimately decided on tissue because I know am not very good at taking meds regularly or eating a consistent diet. I also figured if I didn't like the tissue valve after the first go round, I could switch it up when it wore out...I wouldn't have the option to change it if I didn't like the mechanical valve (at least not without it coming out of pocket). I didn't need it because my repair worked, but I think I would have been happy with my tissue valve decision. For me, the possibility of a re-op doesn't seem nearly as scary now because my first wasn't as bad as I had imagined that it would be.
There are pros and cons for both valve types, and no one can make that choice for you. The good news is that whatever type you choose will definitely be better than the one you have now, right?
You will be in good hands at UofM!
There are pros and cons for both valve types, and no one can make that choice for you. The good news is that whatever type you choose will definitely be better than the one you have now, right?
You will be in good hands at UofM!
Orangebrittainy
Well-known member
I knew all my life I was going to have a surgery and it affected much of my life until I made the choice not to let it. Now 2 years post-op I feel better than I have ever felt and I am grateful for that!
for 4-5 years I was aware of the fact that I would have to have it done sooner or later. Yet, I was very anxious when it came time to have it to done. I am only too grateful that my company provided decent health insurance to cover the costs and I didn't have to worry about the monetary angle at least. I sympathize with those who may have to have this done but do not have the necessary insurance coverage. Everyone deserves an equal shot at living a healthy life. Hope Obamacare will let these folks get back on track.(please don't read any political sentiment into this; I am looking at this purely from a humanitarian angle)
