After meeting with my cardiologist last month, I had a TEE test completed. That sure wasn't fun! I did not fall asleep after the initial meds were given through my IV, so they doubled it... and I was still awake for the entire procedure. I was definitely more relaxed, but vividly remember everything... and the gagging! That was possibly the most uncomfortable procedure I have ever been through.. definitely was worse than the two amniocentesis procedures I had with my pregnancies! My initial echo had shown me to have moderate regurgitation, but the TEE showed it to be at the mild level. I have mitral valve prolapse as well and my aortic, mitral and tricuspid valves were all listed as "myxomatous". I asked the doctor what this meant and he just said that there was a weakness in the tissues but that the tricuspid and mitral were both functioning fine. Has anyone else head of this word to describe their valve(s)? I refuse to google anymore... because google has caused entirely too many panic attacks. Speaking of which, I feel like since my diagnosis in early December, I have been consumed by anxiety and depression. I started taking anti-depressants and am waiting for them to kick in. I feel a constant worry about all of this and obsess over reading and researching as much as possible. I feel like it is more the aneurysm part that has me so turned upside down. I am trying so hard to figure out how to deal with my "new normal" and accept this as part of me and move on... but I am still very much in the "why me" phase and worrying that every single palpitation, twinge or pain means something significant. My cardiologist does not have the best bedside manner and the very first thing he said to me when he walked in the room... before even introducing himself was "you're not panicking over THIS, are you??" and looked at me incredulously. I told him that yes, I was, and he plainly told me not to and that my husband, who works on an offshore oil rig, was at much more risk than me and that if I wanted to worry about something, worry about that. I have a second opinion coming up with another doctor in the area who is a specialist in CHD in hopes that she will understand the make up of bicuspid aortic valve/ aneurysm a little bit more... and hopefully be a little bit more compassionate. I do want to thank everyone on this site for already being so supportive and informative. I am so glad I found this group!!!
Jim Kelly-Evans Kimberly, so sorry to read about your horriffic experience with your TEE. I had one in December and, ... Read more
Jim Kelly-Evans Kimberly, so sorry to read about your horriffic experience with your TEE. I had one in December and, even though I have swallowing difficulty, it went smooth because I was OUT COLD. I guess they new that the only way I could have it was under full sedation. I hope will do better with your second opinion and find doctors who are more sympathetic. In the meantime keep on posting here and let us know how you are doing.
Clare Auten Yes. I agree the TEE was the worst. Sorry your cardiologist has a lousy bedside manner. Mine did the ... Read more
Clare Auten Yes. I agree the TEE was the worst. Sorry your cardiologist has a lousy bedside manner. Mine did the TEE himself and has reassured me every step of the way. I hope you are able to find doctors that you are comfortable with. I know the anxiety can be bad, especially as a mother of young kids. Hang in there.
Wiliam Height Couple of thoughts after reading: another cardiologist or 2nd opinion is first order. I had the sam ... Read more
Wiliam Height Couple of thoughts after reading: another cardiologist or 2nd opinion is first order. I had the same terms used describe my valve with a range in MVR and really can't speak to aortic conditions but the TEE shows a pretty good picture and if it's truly "mild" I would follow it every 6 months if you are asymptomatic. There are definitely stages on this journey of everyone goes through the "denial or I can't believe this", "why me", "fear and anxiety", "knowledge and understanding", gaining support" to "going to the other side and enlightenment--but most importantly better health. With 3 weeks to go I'm where I should be and looking forward to getting it behind me. You don't need antidepressants, you have this group.
Cheryl Batzing Kimberly, I had a very similar experience with my TEE...not very fun and I was awake the entire time ... Read more
Cheryl Batzing Kimberly, I had a very similar experience with my TEE...not very fun and I was awake the entire time and heard every word the doctors said. HOWEVER, I do have a great cardiologist in Dallas and have had many good experiences. I am post surgery almost 4 weeks with surgery at Heart Hospital Baylor Plano. If you are interested, email me at pcbatzing@att.net. I live in Richardson and would love to chat or meet you somewhere in the Dallas area to just talk. Blessings.
Tammy Pilcher Kimberly, I'm sorry you had such a horrible experience! That would be a nightmare for me too! I'm g ... Read more
Tammy Pilcher Kimberly, I'm sorry you had such a horrible experience! That would be a nightmare for me too! I'm glad the only TEE I had was done during my surgery so I obviously didn't know anything. I hope your next doctor is more understanding. There's nothing more frustrating than someone who's never gone through this acting like it's silly for you to worry. Of course you're worried. We all have been. Just know you are not alone! You can come here and find support and understanding! Prayers and best wishes!
Amy DiGiovanni Noack Kimberly, sounds like you are taking all the necessary steps and I hope you find a cardiologist you a ... Read more
Amy DiGiovanni Noack Kimberly, sounds like you are taking all the necessary steps and I hope you find a cardiologist you are comfortable with. When I start to get the "why me" I just remember that we are fortunate that something can be done to improve out quality of life. I know it's a hard path to have to walk down and at times it's lonely, but we are here for you:) I have calmed myself so much through this forum and I hope you get the same comfort as well. All my best to you!
Daniel Spurgeon I went through the same phases as you, and also dove deep into the research. Depending on the diamet ... Read more
Daniel Spurgeon I went through the same phases as you, and also dove deep into the research. Depending on the diameter and your surgeon's opinion the date of the fix is up to you. I saw no benefit in waiting longer when I was at 4.7 (which was actually 5.0)
Joseph Ballett Hello Kimberly,it's to bad you had to run into a doctor with bad bedside manners, I hope your second ... Read more
Joseph Ballett Hello Kimberly,it's to bad you had to run into a doctor with bad bedside manners, I hope your second one will be better. For the nerves we have all been there and can relate. I am sure you will be fine we are all here for you, in any way we can help put your mind at ease just ask any one of us on this site and we will tell you your stories and how we dealt with it.
Kimberly Biddick Thank you all so very much for the insight, support and kind and encouraging words!! I appreciate it ... Read more
Kimberly Biddick Thank you all so very much for the insight, support and kind and encouraging words!! I appreciate it all so much! Knowing that you all have walked in my shoes helps so much to calm my nerves and makes me not feel quite so alone!
HI Kimberly, I just wanted to drop you another note, as I felt bad when I read your post and can so r ... Read more
HI Kimberly, I just wanted to drop you another note, as I felt bad when I read your post and can so relate to how you are feeling regarding the aneurysm. Allow yourself to go through all the emotions - you need to move through it so you can get to the acceptance stage - maybe find someone to talk to (a therapist) and continue journaling. I will share I used Clonazapen ( I have no idea how to spell it right now, but it is not an anti depressant) and that relaxed me, yet helped me to stay focused. I liked it a lot actually, but the downside was I did not need it every day, and if you do not take it everyday, you can get dizzy. Need to gradually taper off. I decided after two months to stop - I did not need that on top of everything else. But it did help me calm down before the surgery. Talking to someone other than your family helps, as I feel those closest to you can get emotional, or they just do not know how to help, because they are not going through it, but of course do the best they can. You are doing the right thing getting another opinion. I saw three cardiologists in TN over 5 years - just wanted to see what they all would say. I am not sure why the TEE, I always thought the echocardiogram was great for valves, and the MRA or CT scan for the aneurysm. I also learned toward the end of all this that the echocardiogram picture of my aneurysm size was not AT ALL the same size of the CT scan size. (4.4 vs 4.7, plus it was bigger when he went in to remove). I hate CT scans, but had read they have the clearest picture and I decided the last two years I would have the CT scans instead. Glad I did. No one made me, it was all through reading. You are completely normal to have huge anxiety over this, and I am pretty sure if your cardiologist found out he had one, he would be the same way! It is almost to the point of funny, yet sad what comes out of the mouth of some doctors. Some of them can be so bossy! You have this sight to use - I had nothing but John Ritter's story. You WILL find the inner strength to get through this, and sometimes you have to lean on others when you feel like you do not have the strength, and that is OK. You are SO LUCKY that you know about this in advance. Keep saying it over and over. Think about the things in your life that help calm you down. Is it journaling? Talking to the right people? Yoga, walking? Walking and easy bike riding is good, nothing that will raise your blood pressure and put pressure on the walls. I hated hearing that, as I was used to playing tennis and other things, basically pushing myself, and that took a while to accept also. It seemed like everyone around me was running or whatever, and I felt so left out. I went every six months for an echo,( no radiation) annually the open MRA. Much better experience than the MRI, open, with music, comfy and so fast! In and out! Right before my surgery, my mother's friend's daughter died from an aneurysm. She did not know she had one, went running, came home, lied on the sofa, and died. She was in her 30's. I felt so bad for that person, and you wonder why some of us learn in advance, and some do not. So take this gift that has been given to you, and use that anxiety you have, and drive it towards research and staying on top of things. Because the more you feel in control, the better you will feel. And even then, you will have moments where you are afraid, and that is normal, you are only human.
Update posted on...
January 4, 2015
For those of you with Aortic Aneurysms... have you received any advice on whether or not you should avoid air travel? I have seen a few blurbs mentioning the pressure may not be good for the dilated aorta. My doctor said "no restrictions", but I want to make sure I am doing what is best for my body.
Jim Kelly-Evans Haven't been warned about air travel , only heavy lifting.
Jen S My ascending aorta and aortic root are both considered "dilated" at 3.8 cm but my cardiologist said I ... Read more
Jen S My ascending aorta and aortic root are both considered "dilated" at 3.8 cm but my cardiologist said I could fly, go skiing, and ride roller coasters. He said unless I'm totally risk-averse, I'm fine to keep up my normal activities.
Daniel Spurgeon The only restriction I received while I had my aneurysm was no heavy weightlifting. Remember modern ... Read more
Daniel Spurgeon The only restriction I received while I had my aneurysm was no heavy weightlifting. Remember modern commercial aircraft keep the aircraft cabin pressurized back down to 6-8 thousand feet so it isn't like your body goes from an atmosphere of sea level to 37,000 feet (unless pressurization fails which is rare). The Yale studies on causes for aortic dissection provided a lot of good insight for me when I was trying to gauge my risk while not turning into a couch potato.
Clay Rowe Mine is 5+ and I flew across county a couple of times this summer. Doc said ok.
Newly Diagnosed
Journal posted on December 29, 2014
I am a newbie here... I was diagnosed at the beginning of the month after my doctor heard a murmur and requested an echo to check things out. After an echo, CT and TEE test, I have been diagnosed with Bicuspid Aortic Valve, Mild Aortic Insufficiency, Mitral Valve Prolapse, and an Ascending Aortic Aneurysm currently at 4.2cm. I am asymptomatic, so being told that I now have heart disease has come at quite a shock to me. I am having the hardest time dealing with the thought of having an aneurysm and the terror and anxiety has been overwhelming. Everyone's response to my diagnosis is "you're too young!" at 32 years old... although I realize I have had my BAV since birth. I am a stay at home mom of two little boys, ages 4 and 7 and am married to Blake, who has been an amazing rock for me through the last month. I live near Dallas, Texas and my current doctors are at Baylor Hospital in Dallas, though I have a second opinion at UT Southwestern Medical Center with a Congenital Heart Disease specialist in February. I am enjoying reading other people's stories on here and they are giving me hope for being able to accept my diagnosis and continue on with my life. As of now, it feels like my world has completely stopped and the depression and anxiety have taken over.
Tammy Pilcher Hi Kimberly, it's nice to meet you! I know exactly what you mean about your world stopping. I felt ... Read more
Tammy Pilcher Hi Kimberly, it's nice to meet you! I know exactly what you mean about your world stopping. I felt the same way when I found out I had a bicuspid aortic valve with critical stenosis at the beginning of October. I knew I had a heart murmur since I was 13, but never knew why. I didn't even know what BAV or stenosis meant. Then the cardiologist, whom I had just met, told me I needed open heart surgery before the end of the year. Needless to say, it got my attention fast! I got home and got online searching for everything I could find on the subject. Thank the good Lord above I found this site and Adam's book! Through both I found my surgeon and a great group of people going through the same thing. I don't know what I would have done without the support and information I found here! You are welcome to read my surgery experience in my journal. Maybe it will help. I'll be glad to answer any questions you have also. You can do this, Kimberly! Best wishes, Tammy
Adam Pick Hi Kimberly, Like you I had a congenital BAV. Like you, I was 33 when I was told it was time for surg ... Read more
Adam Pick Hi Kimberly, Like you I had a congenital BAV. Like you, I was 33 when I was told it was time for surgery. Like you, I was mostly asymptomatic. Like me, you will do great. Let me know how I can help. I am very familiar with a few valve gurus in the Dallas area. Here's a little more about my story if you are interested. https://www.youtube.com/watch?v=9eh6xk28hc8
This American Heart Association video features Adam Pick, who was diagnosed with a heart murmur as a child and reached adulthood without having to deal with ...
Clare Auten Welcome. My two youngest were 4 and 7 when I had my surgery last year. I am just a lot older than you ... Read more
Clare Auten Welcome. My two youngest were 4 and 7 when I had my surgery last year. I am just a lot older than you. Best of luck. You can read my journal or ask any questions you have.
Jeff V. Hi Kim, I was diagnosed with almost identical problems... BAV, MVP and an ascending aorta dilation o ... Read more
Jeff V. Hi Kim, I was diagnosed with almost identical problems... BAV, MVP and an ascending aorta dilation of 4.1cm. I had surgery on 12/4 in Cleveland and think my story may be of interest to you. Regards - Jeff
Hi there! :) add me to the list of those who welcome you to read my journal entries. I am a mother a ... Read more
Hi there! :) add me to the list of those who welcome you to read my journal entries. I am a mother as well to two young girls- very difficult time prior to surgery accepting what was coming my way- but grateful to know about the aneurysm and get it out! :) I am 3 months post op as of today. :) and I am/ have been recovering well so far. :) You will too, especially with the love and support of your family.
Daniel Spurgeon Hi Kimberly,
I was 34 when I was diagnosed with an aortic root aneurysm. I also have two small chil ... Read more
Daniel Spurgeon Hi Kimberly,
I was 34 when I was diagnosed with an aortic root aneurysm. I also have two small children and worried what would happen to them and my wife if I dissected at any time, such as driving down the freeway. I went through a sort of parallel seven stages of grief, and even woke up one morning thinking how great it was that the aneurysm was only a dream. Then I realized I was awake and the aneurysm wasn't a dream at all. After lurking on this site and reading quite a few studies on aortic dissection risks, and not getting a logical reason to wait from any aortic surgeon (I could elaborate on that topic!) at multiple hospitals, I decided to get it over with. Four months ago I had a full sternotomy for a David valve sparing procedure. I was back at work on day 7 and haven't looked back since. I had hip surgery a few days ago and now am looking forward to getting rid of crutches and getting back into respectable shape. I'm sure you'll do well also, and if you have questions there are a lot of really good people on this site to message with. Adam also has a great library of reference materials.
Don LaPorte Hi Kimberly, like Cheryl I live in the Dallas area too(Flower Mound) I am 47. Appears we have a m ... Read more
Don LaPorte Hi Kimberly, like Cheryl I live in the Dallas area too(Flower Mound) I am 47. Appears we have a mini Dallas contingent. I went into the Cardiologist proactively without any symptoms a couple of months back, and discovered severe regurgitation of mitral valve. I am now scheduled for mitral valve surgery in Cleveland Feb 5. I am still on the journey of acceptance, but with the incredible results,technology, and medicine, it is very encouraging for all of us.
Bob M Kimberly, ditto from our heart sisters and brothers. It will be a new day when your doctor team will ... Read more
Bob M Kimberly, ditto from our heart sisters and brothers. It will be a new day when your doctor team will fix your heart.
Kimberly Biddick Thank you all for your words of support and encouragement! What a great community this is!! I am so ... Read more
Kimberly Biddick Thank you all for your words of support and encouragement! What a great community this is!! I am so glad to see some other Dallas folks as well :)
Amy DiGiovanni Noack Hi Kimberly, I am 37 and have heard the same feedback of "you're too young". I'm due for surgery at t ... Read more
Amy DiGiovanni Noack Hi Kimberly, I am 37 and have heard the same feedback of "you're too young". I'm due for surgery at the end of January. At this point it still seems surreal that I have to go through this but I know it's inevitable. I find my 3 yr old keeps my spirits up and spending the time with her is what is keeping me going. Keep reading on here, it's really changed my outlook having this network of people who are going through similar experiences.
Jen S Kimberly, just out of curiosity, how tall are you? I read somewhere else where you mentioned that you ... Read more
Jen S Kimberly, just out of curiosity, how tall are you? I read somewhere else where you mentioned that you are small. I don't meet many people shorter than me. :)
January 20, 2015
Did y'all see this? Shooting in the cardiovascular center at B&W hospital. So sad!!!