Newly diagnosed BAV- surgery very soon- completely in shock...

[stilldreamin]

I?m an active, healthy 43 yr old woman, and I was diagnosed this week with a bicuspid aortic valve. A month ago I was in the emergency department for a completely unrelated issue when the doctor there told me he?d found a very loud murmur and was referring me over to a cardiologist.

Within this month I?ve had the initial consult with this doctor who showed concern over the diastolic murmur he heard, as well as others he said. I was sent for a ?semi-urgent? echo, and on Tuesday saw this doctor again for the results. I think the last thing I recall hearing is he wants me to have valve replacement surgery done by January.

I see another cardiologist at the hospital on the 9th of December, and before years end I?ll also be seeing my surgeon. I?ll apparently also be having a cardiac catheterization (or something like that) done.

Thanks to this forum I know why the catheterization is being done, although I?m still a bit nervous and curious about that procedure. Not to mention scared witless about the valve replacement surgery and the recovery from that. Reading the posts in here and looking at the pictures in TOOTS?. I feel I?m much more informed and although I haven?t as yet connected with anyone, I?m not feeling as alone.

I have so many more questions, and don?t even know where to begin. My cardiologist and I can?t understand why this has never been detected before now? I?ve had many minor procedures done and am in regular contact with doctors. I?m not sure what to expect with the catheterization, or even the surgery? although I?m learning more from others experiences here.

I think my biggest fear at the moment is what is happening now. Since the beginning of the summer my energy level has dropped dramatically. I had started running again and had to quit. I can barely walk a couple blocks now without getting winded, and stairs are almost out of the question. Heat is out? my family doctor said I?m not to go in the hot tub anymore, and last weekend I almost passed out and was very woozy from a hot shower? my pulse rate had doubled also. I get palpitations, tightness in my chest, and the occasional sharp pain. I?m exhausted all the time and have trouble concentrating. I?m not sure what is happening and if I should be afraid. My family doctor said if my symptoms get enough that I question what to do I should go to the ER.

Any thoughts and/or advice would be greatly appreciated. And thank you for getting through this very long post? I didn?t mean for it to be this bad?.

Jen

 

[skeptic49]

HI Jen,

Welcome to VR! I can certainly understand your shock and fear at this point. Many, many of us around here have been there, and you've come to the right place for support and information. You can poke around on here and learn a great deal quickly, which will help to decrease the fear level big time. One place I'd suggest looking is here in the Bicuspid valve forum. The "stickys" here...posts at the top...have a ton of information and links about bicuspid valves and they're associated problems. Actually, I myself am waiting as I write this for my latest echo because there is some question as to whether or not my AV is bicuspid.

So once again,. welcome...and know that you're among friends here. We can and will help. You'll be fine.

Best wishes,

Jim

 

[ctyguy]

Jen...

First off....welcome, this is a great place to get feedback from those that have been through what your up against. It sounds daunting for sure but let me assure you that not only will you get through it, you can get back to the lifestyle you knew before (running, lots of energy, etc...) once you recovered.

Im also 43 and was diagnosed with a BAV back in Feb of this year. I was triggered to see the cardiologist because I was not able to run on a treadmill for more than a few tenths of a mile before I had chest pain and SOB. I thought it was simply a training issue but I could tell that my problems were getting worse so I decided to see a cardiologist just to rule out heart issues. Well he looked at my echo and said I not only needed surgery but that I needed it ASAP. He wouldn't do a stress test out of concern that it might quite literally kill me. So after picking my face up off the floor I got on my horse that day and started looking at where to get a second opinion and to potentially line up a surgeon. I had a second opinion within a week at Cleveland Clinic and I had my surgery the following week. 15 days from diagnosis to surgery.

As far as your issue not being discovered until now I would say thats not at all uncommon. I knew I had a murmer since I was a baby but nobody ever said anything about a bicuspid valve or OHS. I was told I would grow out of it and not to worry. I did 6 years in the military, played all sports, have been consistently into exercise and fitness for the last 10 years after I quit smoking, I really didn't have an limitations. Of course looking back now I wonder if the valve was giving me issues and I simply didn't realize it. I attributed it to being an ex-smoker and conditioning. Running for me was always such a chore, especially if I tried a faster pace (8 min miles for example). By the time I saw my cardio I was struggling at 4.8mph on a treadmill after 2/10ths of a mile. Now I know why !

Im 9 months post op now and Im running without any issues in regards to my heart. Im still conservative when I run in that I wear a heart monitor and I don't let my heart really get above 150bpm. My cardio told me to train at 145 so thats where I try to stay. So whatever pace it works out to, thats what I run at. Currently Im running about 10 to 10 1/2 minute miles. I'm running anywhere from 5 to 15 miles a week depending on the weather. I loath the treadmill so its only when the weather is good do I get outside. Today Im going to run 4 miles when it warms up a bit more.

To your concerns of what your feeling right now. I know that as soon as I was diagnosed it seems everything little thing I felt was pronounced 10 fold. The time between diagnosis to surgery it the worst part of this whole process. Your going to hear this ALOT ! The anxiety and uncertainty of it all is far worse than the recovery process. The best thing you can do is keep your activity level down and avoid anything overly strenuous. I had just about all of the same symptoms you are having and was stressing out over them also. My cardio also told me to avoid any extreme temp changes so no saunas and no outside activities in the cold. So no snow shoveling for you ! Maybe you can see if your doctor can perscribe you something like Xanax ? I took it during the time between diagnosis and surgery and it helped take the edge off from an anxiety perspective. I also did virtually nothing leading up to surgery, not even walking our dogs out of fear that I might have some type of issue. That may have been an overreaction on my part but I thought it best to be conservative.

Just know that your not alone, there are others who have been in your shoes and are now back to living full healthy lives. What you have is fully fixable and as you will see your gonna be feeling 1000% better a few months after the procedure. Ask all the questions you can think of and do your research on valve types. Lots of folks here who can help you and give insight into what they have experienced.

Hope this helps some....

 

[WayneGM]

Welcome to the VR community. Sorry for the circumstances, but glad you found us. Like you, I discovered the heart murmur out of the blue. At my annual check up the previous year it wasn't there, and then at my next annual check up it was. The next thing I knew I was having OHS. While fear is normal, I can honestly say now that I've been through it that it's not as bad as I expected.

The catheterization isn't too bad at all. I was actually quite facinated by it as you are awake during it and can watch the monitors. Whe they insert the dye, you get a warm rush....kind of like taking a shot of whiskey Other than the prick when they penetrate the skin (i.e. just like a needle) you don't really feel a thing. The hardest part is after it's over and you have to lie very still until the insertion point has clotted properly. Unfortunately, I had a bleeder so they had to apply a lot of pressure to stop that bleeding and that wasn't too pleasant. However, that's pretty rare from what I was told and from reading the experiences of others in this forum.

Best wishes and good luck to you.

 

[pamela]

Hi Jen and welcome. You are in a city with some of the best valve surgeons in the country (or at least when I was researching in 1999 it was). There are pioneers at the University of Western Ontario who are well versed in the management and treatment of BAV patients.

The reasoning behind heart catheterization prior to OHS is to use the tools at hand for a complete look at your blood flowing through your great vessels, recording the passage of your blood for use outside the lab and to note any leaks or blockages that can be seen. If you have your chest open and show a dodgy artery or two, the surgeons will fix that problem as well as replace your aortic valve. The last thing anyone wants is to have you back on the table for CABGs within a short time of AVR surgery.

You may want to ask your cardiologist to order a 64 slice CAT or MRI of your heart and aorta. Dilations of the aorta are statistically common enough in BAV patients to warrant this imaging be performed. ref: Medscape article on BAV patient management

Take Heart, the waiting is the worse part,
Pamela.

 

[stilldreamin]

Thank you so much for all the information and encouragement. Its not so scary when I don't feel so alone.

Scott: it's nice to hear someone else talk about the anxiety... I'm never sure how much of what is happening is real and how much is nerves. I was taking ativan for panic attacks before, and my GP told me to continue with that as I need it. And its nice to know that I'll be back to my normal high energy self too. I used to drive my friends nuts, but I think they miss my usual go-go-go self. One friends said I'm going to be dangerous when this is fixed. Its frustrating right now not being "me"...

Thanks also Wayne for the info on the catheterization. I won't mind anything that feels like a shot of whiskey... and if I can watch, thats even better. I thought the echo was fascinating...

Through all this I'm trying to stay strong in front of my daughter... a very beautiful and sensitive 15 yr old. Her biggest concern was the surgery... of course. Last nite I showed her some of the pics on TOOTS, and the people that have had the surgery done. Like me, it seemed to ease her mind. She has been bragging to her friends that she's going to have a "Cyborg Mom"... I thought that was cute, and very positive.

Again, thank you for the responses... and for just being here.

Jen

 

[MrP]

You didn't mention whether or not you had a CT scan to measure your ascending aorta, and as you've most likely already learned, enlarged aortas and aortic aneurysms are often found in BAV patients. To avoid a possible second surgery, replacement of the ascending aorta at time of valve replacement may be advised. Aneurysmal dilatation often occurs even after aortic valve replacement.

I am concerned that your sharp chest pain may be a result of aortic media stretching or tearing. Please ask for a CT scan. The cath is primarily to evaluate your coronary arteries, and a CT scan or MRI will be most accurate in measuring your ascending aorta.

All my best,
MrP

 

[Bina]

Hello and welcome!
My murmur was found when I was in my twenties, but in my 40s the symptoms got more definite, just as yours are.
Now that I am post op, I have found out that I had a BAV so I'm checking out this section of the forum more often.
For the heart cath, take the tranq that they will offer, you don't need to be a shaky mess on the table.
Stick around with us.....we are a large group with so much to share.

 

[Cooker]

Hey there and welcome to the zoo.... this thing is scary but it is not near as bad as you might think... you are young and health, you will do fine... we are here for support and to walk with you up and over this mountain that has been placed in your path... there is a lot of accumulated knowledge here but always remember that "you and your doctors" will decide what is best for you....again, welcome

 

[The English Patient]

Hi Jen...glad to see you are still dreamin, it's the only way. The people on this forum have got so much to share you will get a really positive support. I have a leaky aortic valve like you, diagnosis came as a result of an appendix op!

Just wanted to say welcome.

 

[Freddie]

Yippee, another Canadian.
Welcome to the family Jen.
Don't you fret about a thing you'll be fine. Take one day at time.

If this catheterization is the same as an angiogram confused I had mine done in the wrist with no complications with bleeds and its just the way Wayne describe it - getting warm all the way down to your toes. Maybe someone could clarify these two procedures.

From the time I phoned my surgeons office to be put on the "on call list" to the time I had surgery was 4 days and I had just had a complete physical 5 weeks prior with nothing being detected. Yep, I know all bout feeling shocked (and dumbfounded).

Take Care,
Me

 

[Marguerite53]

Hello and welcome to this wonderful community. I had a 3 year wait for my surgery and would have certainly gone nuts had it not been for the amazing support and wonderful listeners on this forum. Sounds like your wait is more like 3 weeks!! Totally manageable!!

The surgery is no picnic, but the pain meds are fantastic and you shouldn't really experience much beyond a high discomfort throughout this. It's rather amazing actually, how little pain we experience. If the surgeon is using a full sternotomy (and significantly most do) you will have to mend from that for close to 2 months. No lifting, no stretching. Your sternum will have been sawed in half and sewn or wired back together and like any broken bone that has been "set" , needs time to heal. Because of this, your daughter can right now start planning on being very very very helpful to you when you get home. The first day home the weakness and general "coming out" of the whole experience can be almost laughable. You feel pretty darn good, but you can't even open a refrigerator door! That improves dramatically day by day. She will need to do all your laundry for you for weeks....lifting and stretching and pulling and such will not be allowed. She may have to fetch things for you that are deep in cupboards or in odd places since bending and twisting in everyday ways is very counterproductive to the healing. Perhaps the 2 of you can go through some of the lists here. You will need help cooking and such, but frankly, at 15, I suspect the 2 of you can manage quite well. She should know ahead of time what kind of warning signs to watch for, too. This could be a very excellent learning experience for her.

Well, please stay with us and we will carry you through this, anxiety and all. It can be helpful to start a new thread each time you have a new kind of question. That way, the title of the thread shows up and more people here (and there are a LOT of us!!) will respond.

You sound very close to needing your surgery. Please do your best not to pass out. Quiet yourself. Go into a Zen like mode and breathe more slowly, pace yourself much more slowly in everything. Avoid those things which seem to bring on the off feelings you've mentioned. Be gentle with yourself right now. Think about your whole body flow as being slow and consistent. Do not do things (like sudden lifting or bursts of action energy) that would cause your blood pressure to rise suddenly. Your valve is closing up and is under duress to function properly. The more gentle you can be with yourself, the better off the valve has it. Lighten up on the salt products, put the salt shaker away. No caffeine. No chocolate. (okay, it's the holidays....I just mean go much lighter on these things). Let your daughter know exactly what is wrong with you so that if for some reason you do pass out and she needs to call an emergency vehicle, they will know WHY you passed out and not have to guess. Maybe tell others close to you, too.

You are going to feel so much better when this is all said and done. But it will take some time. So learning patience with your body right now is a great start.

Happy that you found us. Best wishes.

Marguerite

 

[stilldreamin]

Wow, thank you so much everyone. What an incredible feeling I have right now. I CAN do this.... you all have, and you're here to help others through it with your wisdom and stories.... thank you so much. I'm so glad I found this site...

 

[vprnet]

Welcome

Welcome

Hello Jen and welcome. This is a great community and service for us.

One of the best reads on BAV I found recently was this article (2006). I also read many of the references but I have to say the authors did a terrific job capturing the main points of interest. It covered so may questions.

http://www.pubmedcentral.nih.gov/picrender.fcgi?artid=1464384&blobtype=pdf

PS. I am not a medical professional or a doctor. My comments in this forum are my own opinion and are not intended to be given as medical or professional advise or a recommendation of any valve choice.

Vince
BAV diagnosed 1997
ON-X scheduled Dec 10
FDA Clinical Trial PROACT http://www.onxlti.com/onxlti-hv-proact.html

 

[Cameron]

Hi from the Wet Coast!
Like many of the others that have replied, I had been having regular yearly medicals with no-one diagnosing anything wrong with my heart (55 year old male). Started to have a few uncomfortable feelings when walking fast so told the doc who then referred me to an internal specialist. He immediately said I probably had a bicuspid aortic valve and sent me for an echo and an angiogram that confirmed my valve is down to 0.6cm from normal 2cm. I still have almost NO symptoms so it is fairly easy for me not to dwell on things while I wait (I do think about it, but mostly positively) as I don't have symptoms popping up all the time to remind me - surgery probably in early 2009 although I will be going to pre-surgery clinic for orientation next Monday. I will be having an On-X mechanical put in.
During the setup for my angiogram, which went in in my right groin, I think a clamp or something slipped as apparently my artery was quite deep and he was having to put a lot of pressure on, so I did have a bit of sudden pain that the doc apologised for, otherwise, it was fine while on the table - about 40 mins.
In VGH where I had the procedure it was standard to clamp the site for the first 40 mins or so to ensure a good clot. I had 40 mins clamped, 40 mins on my back, 40 mins sitting up in bed, 40 mins in a recliner chair and then out! You will probably be at the hospital for minimum 6 hours unless everything on their schedule goes perfect. There was an emergency during my wait so I was at the hospital from 9am to 7pm!
Once home that night, and you should have someone to drive you, you have to sleep on your back and watch for any leakage - they will give you instrctions as to what to look for. No baths for a couple of days, shower only. I was sore the next day - deep in my leg - but tylenol helped. That eased off the second day and by the third I was feeling pretty much back to normal and could have gone back to work if I was not retired. I did have a great big bruise on my thigh which surfaced about 4-5 days after and lasted for another 10 days - not sure if that was normal or associated with the "slip" - I think the doc said that that could happen!
Keep thinking positively - better to find out now and get it fixed with a great prognosis for feeling better for a long time to come versus not knowing and you know what...
Keep posting
Cameron

 

[Jkm7]

Welcome, Jen.
Happy you found us but sorry for the reason.
I had my second OHS in four years last February and am doing very well. As the others say, this is very doable. To us, the patients, it seems overwhelming and monumental, but to the professionals who take care of us it is routine and everyday. I like that just fine!

The surgeons work their magic and the wonderful nurses take such good care of us. My nurses stressed to me they consider pain control as another vital sign. They take our temps, blood pressure etc and rate our level of pain. With both surgeries (in the same hospital with the same surgeon), they kept me very comfortable.
I had a very easy time with my cath (angio). My cardiologist who did it is very expert and I didn't have so much as a bruise. He used a plug to close the wound where he inserted the cath and though I had to lie still for about 2 or so hours, I was fine to go home, and was permitted to drive and go about my usual routine the next day. I felt absolutely no pain or discomfort from the cath. It really was a breeze and I was nervous in advance as I didn't know what to expect. (I'm told I had one as an emergency just before my first OHS but I was so ill at the time, I have no memory of it.)

The waiting is very stressful, high anxiety and you would be most unusual to not be anxious about the surgery.

You sound otherwise very healthy and young and strong and this is a hugely succesful surgery. There is every reason for you to believe you will be fine.

You'll have a bit of a rough stretch but you'll get through it. It really is not as bad as we all envision it will be. Most of us agree, the wait really is the worst part.

We are here to help you in any way we can. Ask all your questions. We all had them and there is almost always someone here who can answer or head you in the right direction and everyone here is happy to do so.

 

[ottagal]

Hi Jen,

Welcome from another fellow Canadian! I really don't have much to add to what the others have said except I wanted to wish you a warm welcome.

 

[Woodbutcher]

I too am going through pretty much the same as you... 42 and and recently diagnosed with a BAV and needing surgery in the next few weeks. It's scary stuff alrightbut atleast you were diagnosed in time and the medical people getting things in place to get you sorted out ? Hang in there, you'll be fine...

 

[abbanabba]

Hi Jen (((hugs))) I remember when I first was told I needed a valve replacement... it freaked me right out!! Even though I have a congenital heart defect and had 2 heart surgeries as a child, as far as I knew that "fixed" me and I never suspected more surgery would be in my future, so it was a very nasty surprise!

Through this forum (and one for us congenitals) I have found so much wonderful support and advice which has really helped prepare me for my upcoming PVR. Mind you - I've also had 5 of years living with the symptoms you have now, and believe me, at this stage the surgery is by far the more attractive option! I can't wait to have it finally done and get back to living life again.

Hang in there, focus on all the positive things in life - and all the things you will be able to do again once they fix your heart. I'm sure you'll do just fine.

YES - you CAN do this!!!


A x

 

[dlangton]

Bon courage

Bon courage

I had similar news delivered to me two years ago in September, also during followup for an emergency room visit for (in my case) having been bitten by a Lyme-bearing tick. They heard the loud rumor, gave me the tests and the diagnosis of bicupsid aortic valve with severe regurgitation was confirmed with a recommendation for surgery sooner rather than later. I was pretty freaked out at first and believed myself to be facing imminent death, but it turned out not to be the ordeal I expected. (Maybe I'm weird, but for me some kind of wacko psychological reaction kicked in and I actually started to enjoy the whole thing, but don't tell any of these other folks. I was astounded and impressed, the more so since I live in the US with no insurance and had to include the $$ factor in my decision about which way to go. There's no way I can come up with $150,000.) There is a strong likelihood that you will have a similar experience. Strong and physically active people like you do extremely well with this procedure.

I don't know what kind of advice you are getting about the valve choice. I think one thing that is often not mentioned is the fact that the technology is rapidly advancing, so if you do go with a tissue valve, which probably means a second surgery in 20 years or so, the second round will likely be much easier (no sternotomy) and the new valve will be grown from your own stem cells, or something similar. I wish this technology were available now for you, but at least we can see it on the horizon.