Uneasy, confused, overwhelmed, yet Thankful

[Sunshine susan]

As Ross said...

As Ross said...

Welcome to the best circus in town! I just posted on "Heart Talk" that I had my 10-year anniversary of ARV....please read it if you want to. And don't fear...while it's not a cake walk, it's not usually that big of a deal. Just take one thing at a time and you will do well. Good luck and many blessings!

 

[Sunshine susan]

To answer your questions...

To answer your questions...

Recovery time...I was back at work in 6 weeks full time and have had only one sick since (uh--that's 10 years) and was a dratted cold. I was also twice your age at the time of the surgery.

Don't arbitrarily put the surgery off...you will do better the better shape you are otherwise in.

You won't remember anything about the tube. Apparently I didn't like it much (I have been told), but don't remember any of that. I worried about that as well.

I have a scar and had staples, but it's not that noticeable...especially over time. Small price.

Mechanical will last you the rest of your life. Down-side is taking the "blood thinners" for one so young. However, repeat surgeries are hard on a body and you have a lot of years ahead of you....mechanical is probably best. Advancements cover all the tricks such as childbirth, etc.

In most all circumstances, I do circles around everyone. I work full time and am active in community non-profit organizations.

My point is that you will do fine....don't risk your health. Your fears are normal, but not insurmountable. If you have any questions, this is the best site ever. You can e-mail me (or anyone) if you need more one-on-one.

Best of luck and hang in there...you will be much better for it! Blessings, Sue

 

[vprnet]

Welcome Jess,

besides your selection of a surgeon, your choice of valve remidy will be one of the most important ones considering your age and any desire for child birth down the road. You realy should discuss this with your doctor and review the risks and benefits of each option. The good news is that you have the time to do this so you can be comfortable with your decisions when the time comes.

You will do great and you may just find that anxiety you feel will just fade away after the operation. I know mine did.

Best wishes ... Vincent

Dec 08 BAVR with ON-X and conduit Dr. Leonard Girardi, NY Weill Cornell Prysberterian
http://www.weillcornell.org/lgirardi/

 

[johnfreeman62]

The Waiting

The Waiting

Hi Lynn

I was diagnosed with BAV when I was 12 - an proceeded to ignore it until I was 45. I was always told I would need surgery someday but was pretty much asymptomatic. When the doctor said you need surgery now, I was devastated, had a hard time thinking about anything else.

I had surgery November 13th and every day since then has been better than the day before. There really wasn't much pain and just four months later I am doing everything I was before and more.

I have a porcine valve and am very happy I do. I don't take coumadine and I don't hear any clicking noises. I expect to get 15 years out of it and after having been through the surgery once I know I can again

 

[drivetopless]

Hi, Jess--
The others here have given you great advice. I just want to comment because your post brought back so many memories of what I went through when I was initially diagnosed 12 years ago. Like you, I had lots of anxiety triggered chest pain In the days before your diagnosis you probably felt fine with little to no chest pain. If so, it is probably anxiety. I find that if I keep busy and laugh as much as possible and try to stay out of my head, I don't have any chest pain. My chest pains do seem to magically occur around the time of tests and Drs. appts.

Your valve is narrow but what you don't know yet is how fast it is narrowing. My valve stayed at 1 cm2 for 10 Years. I, too, was told at first diagnosis to expect surgery in a couple of years. In the last year, my valve has suddenly narrowed to .7cm2. I'm still asymptomatics, so now I get it checked evey 6 mos and am told to expect surgery in the next year.

I found a medical study a long time ago tha indicated that the stenosis tends to be stable (no significant narrowing)for several years and then the narrowing suddenly accelerates. When this happens is when it is important to get the valve fixed. If you are asymptomatic, it is a good indication to just keep an eye on it but not worry to much yet. You have youth on your side.

Sounds like you are doing everything right. I remember after 3 or 4 years of check ups with no change I started to relax. I hope you have the same experiene.

I also like to remind myself that there is no better time in history than today to have a heart surgery. The technology is advancing at a rapid pace, so we are all lucky.

 

[dick0236]

Hi,
..but there is still so much to know. Here are some of my 'things' I just question:

Surgery itself--- recovery
Waking up with the breathing tube in
my sternum being cut and pulled apart!!! Aghhhh
glued or stapled shut ( I have been told the glue is a lot better for scaring)
dealing with Coumadin (my cardio says mechanical will be the best, I agree)
Good surgeons in Indianapolis?? How to choose...
Recovery time down.
Time spent in the hospital... and the list probably goes on. Sometimes I just don't know where to start.

Jess

Whoa Jesse, this is one elephant you got to eat one bite at a time. Welcome to this Forum. You can get all your questions answered. Feelings of anxiety are the "Norm" for folks like us. I won't try to answer your questions since so much has changed since I went thru this, so I'll leave that to the newer people. My only comment is that when the time comes, you will do fine.

Indianapolis is a nice town....my grandaughter just graduated from IUSouthEast and has relocated to Indi. I like your dog

 

[dazzzlingdani]

Wow I am also new here and have been lurking, your post describes me to the tee. I am 32 and was always told you have a heart murmur and I just went with it never bothered to really see what it was about until last month when I had my yearly echo. I said to myself let me see what all this is about and so I keep reading on the net and driving myself crazy that I am going to die at any minute. I have bicuspid aorta and it is slightly stenosis and leaky, I exercise also and am not out of breathe, I have no symptons. I already have panic attacks before all this research and now I am just on the brink of insane over it all.

So not to hijack your post, but I wanted to let you know I feel exactly like you and thank you for posting cuz now I know I am not alone.

 

[dick0236]

Hi dAzzzlingdani....and welcome. Many, many heart valve recipients, including myself, had NO, or few, noticeable symptons. Stick around. Although it's a bummer, OHS need not be a "life-altering" event.

 

[SHEEPDOG]

Guess I am late in this one.

Guess I am late in this one.

Hey Jess,
I spent 10 years living in Indiana. 1 in NAPP and 9 in Blomington.
I was told about an EVENTUAL valve replacement when I was 13ish. Last July, that day came. I was 43 years old, a cop (riding a BIKE everyday), a 7 year old son, what I THOUGHT was pretty healthy. I had gone through the academy in 2005/06 and did pretty good. NEVER "symptomatic", I was not passed in a medical for a new department I was trying for. That really PI^%#D me off when I first was told but it may have saved my life.
I was scared too. Anyone that tells you they weren't is a liar. LOTS of the same questions too. I also had the problem of being a cop on coumadin. (some departments say NO and some don't care. I was at the former and just moved to the later) This place was a GODSEND!!!!
6 days in the hospital, 1 month out of work, 1 month light duty, and I was back to riding my bike on the streets of Atlanta. Being in shape and active will really help you. I was really SOO drugged up that I knew the tube was there but it didn't bother me. (they give you LOTS of really GOOD drugs!) I had internal stitches, pain was from my shoulder, Coughing and the dreaded SNEEZE was NOT fun, I have lots of time in the hospital that I DON"T remember (drugs again) Don't stress about the sternotomy, it is all done and healed before you know it. The 9th of April will be my 9 month VALVERSARY and it all seems like an uncomfortable dream (not even a night-mare). The important things are INFORMATION, A GOOD DOC, FAMILY SUPPORT and YOU MUST BELIEVE THAT IT WILL ALL BE OK. The alternative is a sure and certain, very uncomfortable demise. This is getting a very "ROUTINE" procedure for the medical community now. This will probably be the only one you'll go through but my DOC does 3-4 a day!!! GET A GOOD AND EXPERIENCED DOCTOR!!!
I know this is long so I will end there. Let us know what happens.

 

[mitchhollar]

Just had Surgery in Indy.

Just had Surgery in Indy.

Hey Jess,

Welcome first of all, this is a great place to be. I just had my 3rd surgery down in Indianapolis. Dr. Mark Turrentine did my last two as my first one was done at Rileys by Dr. King. I really like Dr. Turrentine, I would not use anyone else myself for the Indy area but that is just me. There are other good surgeons in town, Dr. John Brown and Dr. Turrentine are with Clarion. There is also some good ones at St. Vincents.

Don't worry to much about the tube. I can't lie it is not the most fun I have ever had but it goes quickly. I remember all three of mine coming out but a lot of people on here don't even remberer it.

I had my surgery at Methodist and absoulutely loved it. That sounds pretty sick sorry, I loved the nurses and care that I got. Private room in step down was nice and they really seem to care about you.

From my experience pre op don't beat yourself up. We all get nervous, our minds control our bodies more than most people think. Also make sure that your heart is not getting enlarged at all from the valve issue. Mine did before my second surgery and I developed Idiopathic VT from Scar tissue in my Left Vent. So in goes a defib. You don't want to have to deal with one of those as well. If you need any more help just let me know I have had all surgeries and cardios down in Indy.

 

[ccummins]

Wow I am also new here and have been lurking, your post describes me to the tee. I am 32 and was always told you have a heart murmur and I just went with it never bothered to really see what it was about until last month when I had my yearly echo. I said to myself let me see what all this is about and so I keep reading on the net and driving myself crazy that I am going to die at any minute. I have bicuspid aorta and it is slightly stenosis and leaky, I exercise also and am not out of breathe, I have no symptons. I already have panic attacks before all this research and now I am just on the brink of insane over it all.

So not to hijack your post, but I wanted to let you know I feel exactly like you and thank you for posting cuz now I know I am not alone.

I can understand your fear. However, it sounds like you could be years away from surgery. Spend some time talking to your cardio about this. I know I was told that if I did not have an aortic aneurysm I would not need surgery until I was quite old likely. As a matter of fact, I just had surgery to repair my aneurysm and they left my BAV in place because it was still healthy. So I still have my murmur and am hoping that I can keep it for many, many years!

 

[COLLEEN S]

Jess, Hi and welcome. You asked if there were other ways to assess progression of your BVD. Echo's, TEE, and eventually angiogram (cardiac catheterization) because when it comes time for your surgery, the surgeon will want to assess how good your arteries and veins are for the surgery. I have also had stress tests, MUGA scans, CT of the chest, ekg's ...all ways they assess your BVD. Wish I had known I would wake up intubated...my first surgery I did and was alarmed and couldnt swallow. I yelled for them to take it out. Since you're here pre op, you wont have that problem. You'll already know to expect it and just breathe as well as you can. Ask for them to wet your mouth and/or ice chips. And dont be surprised if they get you up and walking the same day after your surgery!

 

[jlynne]

Thanks everyone for your advice, support, etc. I haven't been on in awhile because there when I had posted and everything I seemed a little too into it. I started having dreams (not exactly nightmares) about having surgery. I had my 6 month Echo and got results 'valve hasn't changed since last Echo, follow-up with routine 6 month appt', so that is good. right? lol A part of me is like yep, same old---now I move on with life for another 6 months, but there is this other slight part of me that sometimes just wants to get it over with already! I don't say that lightly---it is just so hard to be in between... I don't think that it helped that about a year ago the cardio was like 'your probably going to need surgery sooner than later, maybe the next year or two'. I guess I almos expected the Echo to show the valve worsened.

--mitchhollar, I would love to talk to you sometime, as I get closer to that point of needing surgery. In the past my cardio said I would be going to St. Vincent Heart Center, he mentioned 2 surgeons, I have written down, but can only remember one name Dr. John Fehrenbacher. Ever heard of him?

---dazzzlingdani, feel free to e-mail me anytime, I would love to chat or help anyway I can. [email protected]

 

[MIKE69]

surgery

surgery

Lynn,
Just had surgery first week of April.
I had valve repair and a replacement of a aortic aneurysm.
I see below you are still ok. That great. My valve had minimul regurge but due to the aneurysm the surgeons rccommended to replace the valve with a mechanical valve. I really did not want to take blood thinners.
but after meeting with two surgeons it looked like that was the way to go.
But then I went into NYC and the surgeons felt the could correct my valve.
Well so far it is a success. The echo out of the hospital shows no signs of regurge or stenosis. The surgeon informed my famly the valve looked great.
I am in week three of recovery and right now i am still tired and anemic. Doctor has put me on iron. I hope all goes well and if you need to talk please do not hesitate.