Shocked, Overwhelmed, and Waiting.....Newly Aware New Member

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M

matbunch

Member
Joined
May 2, 2012
Messages
22
Location
Florida
It has been a LONG few weeks. I was born with a CoA, Bicuspid Aortic Valve, and VSD, though I didn't know about the BAV until I was 24. I had surgery to repair the CoA in 1977 (I was 6). After surgery, I was told that my heart was permanently fixed...and probably would never face problems again. Due to a lack of technology....I never had my first echo until I was ready to consider pregnancy for the first time. (@1996) I Saw the cardiologist after a long time of avoiding him...just to make sure it was OK to get pregnant. Before the visit.....I did my own research...and discovered that 50% of patients with CoA also had BAV. So......I thought I'd ask if I had a BAV. Unfortunately.....I did....and she wondered why I didn't know. She told me that what that really meant was that I would probably need to replace that valve when I was in my 70's. So I put it in the back of my mind...never to worry again....and kept my yearly cardio appts.....most of the time......

A few weeks ago I started this weird cough.....my mom panicked when she heard it and said it was a "heart cough". So I HAD to look it up! (here I go again). In the course of my searching.....I discovered the truth about BAV....and learned that it was REALLY important for adults with congenital heart defects to go to specialized clinics specifically for adults with congenital heart defects........in fear and shock....I scheduled an appointment for one week later......I thought this doctor would set my mind at ease...and tell me to STOP searching the internet.....because it was driving me crazy.......WELL........instead he confirmed all my research and suspicions. NOW....I am waiting to schedule a date with the MRI machine so we can measure my aorta...and detect any signs of CAD. All of this has been overwhelming and stressful.

I am a 40 year old woman 5'1" 159lb. I have BAV....and now I've learned that I also have trivial regurgitation. I am ALWAYS tired....and exercise and I do NOT get along. (especially cardio). (I cannot catch my breath) I get a little winded when I walk up steps...and do other simple things. I've always thought that my age, weight.....and fact that I do NOT exercise.....were the cause. Sometimes I wake in the night with a crushing feeling in my chest....and frequently feel quick bursts of chest pain, neck and jaw pain and arm pain. ( I always blame it on indigestion.) Once when monitored in the hospital, I discovered I had bradycardia......my heartbeat would drop in the 30's and below at night. My blood pressure has been great.....but my last 2 visits it was a little higher than normal. (128/68) Once when I had a chest x ray.....I was asked if I had previous aorta surgery because my aorta was a little larger than expected. The symptom that kick started the whole thing was a weird thing. I would be resting.....and as I breathed....it almost got caught.....and I couldn't get air until I coughed. I wish I could explain it better.....but I don't feel it is related to anything respiratory. That symptom is increasing through these few weeks......and leaving me with a "heavy chest" feeling. (Maybe it's anxiety????)

So....I am in a waiting game......I've had an echo....which detected the regurgitation.....and I'm still waiting to schedule the MRI.....I'm wondering if the doctor will recommend surgery.....or not. My doctor has been pretty silent over the last week and 1/2. The clinic uses a team approach....so I'm wondering if he is consulting his team of surgeons....pediatric specialists...and adult specialists to decide. Either way.....I have a feeling that surgery IS in my future....I just don't know if I should pack the sunscreen for the summer OR....pack the hospital bag.

I've diligently researched surgery criterion....until I've almost gone crazy.....and finally concluded that I can't figure it out.......so I'll just have to wait and see. I found this site in all my research and have been fascinated with your stories and experiences.

Do any of my symptoms sound familiar to any of you? Is surgery time mainly based on the size of the aorta? What is life like after surgery? What are the downsides to blood thinners? Will I be just as tired? How soon after surgery can I return to work (as a teacher)? What advice would you have for someone who is in that crazy waiting period?

I get a feeling that 15-20 years ago when they were diagnosing BAV.....the connective tissue/aorta weakness was not known....and doctors mainly took a wait and see approach to surgery......but now as research is revealing the dangerous nature of aneurysms and dissections ......doctors are taking a more aggressive and prophylactic approach to surgery. This makes me think my age....short stature....BAV diagnosis....symptoms..... and slight regurgitation may all send me on a "fast pass" to the OR. This is a ride that I would like to avoid......but probably won't.


Thanks for listening....Any words would be appreciated!
 
You have a lot going on there! Take a deep breath and try to relax.

Before you jump to conclusions, you need to wait for the results of your tests. Your symptoms of a crushing sensation in your chest with chest, neck, jaw and arm pain would concern me too. I trust you have made your cardiologist aware of this and your other issues (tiredness, odd cough). S/he would be the one to help you understand what this all means. I don't think anybody here is qualified to do that. Only a trained medical professional with access to all your medical information and who has done a careful physical exam can pin that down.

I do think you've got some grasp of how this is usually handled. Yes, the general approach has been to wait and watch for symptoms of at least mild heart failure before doing valve surgery. And symptoms still are important. But the test results which charcterize the state of your valve and aorta and how your heart is responding to this can trip the surgery indicator without symptoms. I don't see much in what you wrote that points to the valve itself or the aorta as being that bad yet. The tests should help determine the cause of your symptoms. Whether it's valve surgery with or without aorta repair, coronary artery bypass or something else, perhaps medication, remains to be determined.

Although I wouldn't wish valve surgery or aorta repair on anyone else, it's remarkably safe and successful. "Blood thinners" don't make you tired. Usually it's a couple of months before you return to work; some people return sooner. BUT we are getting the cart before the horse here - it's very premature to say exactly what you need to have done to relieve your symptoms.
 
Hi and welcome.

Bill's reply just about covers it all. You will have to rely on the upcoming tests to determine what the next step will be.

I would schedule the MRI so you can get a better handle on what's happening. On a positive note, the echo should have revealed any unusual enlargement of the aorta, but from what you've written, it doesn't seem to have done so.

I hope you keep reading the forums and asking questions. Please let us know when you get the results from the MRI. Maybe we can help with more answers at that time.

Mary
 
Hey there, welcome to the best place to go when you are feeling nervous, scared, etc. Some of the symptoms you described; jaw pain, SOB, tired) matched with the things I felt before surgery. But since you aren't me, I can't say for sure that you will need surgery right away. Just wait and see what the MRI says and what your cardio says. Also, if your doctor can't answer questions you have to make you feel comfortable, then if possible get a second opinion. My first cardio always put my knickers in a wad, so I found another doctor and now all is good. Best wishes to you and keep us posted on how things go. :)
 
Hi matbunch,
Welcome to the site. I hope the info & experience you can read here will help you get a grip on everything that is spinning you around so fast. Since you seem to be symptomatic of something (whether it is anxiety, deconditioning, a valve problem, or further connective tissue problems) I'm glad somebody has listened to you and started to pursue the issue at hand. Breathe. They will figure it out.

In my non-medical opinion, don't stress over "trivial regurgitation". That means there is a tiny bit, but barely enough to measure. My cardio says almost everybody has that.
I'm not so great with exercise myself at the moment, but I used to be more active, and I want to be active again, so I'm getting things fixed up pretty soon. Beware of the anxiety and stress. It confuses things and will make you feel more symptomatic. You obviously know how to research, learn, and reason. Try to approach it all scientifically instead of letting it get to you. (Yeah, easier said than done, but personally the denial thing has been working pretty well for me at keeping the stress level down.) Just try to relax and not stress. Find docs you believe are answering all your questions, and let them take over some of the investigating. Take care.
 
Thanks y'all!

I am finally getting over some of that initial shock and fear.....and I feel I am getting a pretty good grip on understanding the basics of BAVD (lots of research this past few weeks). I'm not very patient...and it has been almost 2 weeks since my appointment......and I still haven't talked to the Dr. ... or scheduled my MRI. I've convinced myself that if the Dr. is not in a hurry...that is GOOD news. In the meantime....I'm trying not to think too much about it.....with little success. It sure is good to read all of your experiences and be comforted.

I was only six when I had my last heart surgery.....and frankly.....I'm thinking that my ignorance back then probably made it easy on me...my parents had the HARD job.

My dad had CABG three years ago.....it was kind of a surprise! Mom went into emotional shock.....and had no clue how to care for him. When he was discharged....she picked him up at the hospital......dropped him off at home.....wnet back to work......and asked the neighbor to check in on him periodically.......not being able comprehend the level of care he needed. I took off for the first week and took care of him.....She laughs at herself now.....but I think I am much like her.......kinda go into shock at first. Now that the shock is wearing off......I'm thinking a little more sensibly.

I will keep checking in......and keep you updated.
 
Thank you Allisoninoz. Great writing! It's kinda my hobby too....hope to write a book someday. Thank you for sharing
 
Matbunch, a heart felt WELCOME to our OHS family glad you found the site , there is a wealth of knowledge here for the future ..... Much has been covered in this thread but as you have said the age of six was a while ago (just over 23 yearsago ;-) )and at that age you are not aware of a lot of what is going on and being done to you and FOR you........ following are links to information you may / may not know to help you on this journey....I am no Hemingway like Allison but I try read and ask questions and as always WAITING IS THE WORST PART


Bob/tobagotwo has up dated a list of acronyms and short forms http://www.valvereplacement.org/foru...4&d=1276042314

what to ask pre surgery http://www.valvereplacement.org/foru...t-of-questions

what to take with you to the hospital http://www.valvereplacement.org/foru...al-a-checklist

Preparing the house for post surgical patients http://www.valvereplacement.org/foru...House&p=218802

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


And Lynw recently added this PDF on what to expect post op
http://www.sts.org/documents/pdf/whattoexpect.pdf
 
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My son is only 3 months old and he was discovered to have CoA and BAV at 10 days old. He had his CoA repaired the following days at UNC Children's Hospital. This is where they went in through his side, cut out the narrow part of his aorta and I guess tied the loose ends up. However, there is always a small chance it could re-narrow again later in life, mostly within 6 months of the repair. If you didn't know that from your own personal research, I would note that the chances slim down as you get older too. From our specific surgery, it's 3% chance because of the procedure our surgeon did on our son. I know the internet notes higher, which is the base line for standard CoA repairs. You may want to find out what your surgeon did on you just to know.

When it comes to the BAV, our doctors really didn't tell us much about the defect even today. They were so focused on his CoA, they failed to explain to us about how serious BAV can be even before my son hits 40. I had to do my own personal research, find these forums and ensure my son knows he has BAV just so he follows up on it when I can't. So, don't feel totally lost in regards to not knowing as much about what BAV could mean to you. It seems that because the effects of BAV happen later in life, it's not as important for people to explain what it means now. Which in my mind, is insane.

Good luck with your results. I would wait till everything is found before jumping to any conclusions. I think no matter though, the advances in science and technology today are so good, that most outcomes are super great. That's what keeps me pushing forward for my son with his CoA and BAV right now and surely in the future if something crops up.
 
Hi Glen,

Your post touched me. Any parent who endures what you have endured is my hero! Your son's surgery was exactly like mine....and I believe that was the best option for a CoA repair. I am now 40...and I have enjoyed 34 years of a fairly symptom free normal life! The only imaging technology that was performed on me in childhood was an X-ray....and as you can imagine....my BAV was NOT diagnosed until much later.....during my first echo before I had children. Even then...they did not tell me much about it when it was diagnosed. So yes....my shock these few weeks have been equivalent to the shock you get with a brand new diagnosis.

As your child grows....encourage him to do all he possibly can safely! Do not be overprotective......as hard as that may be. If you caudle him too much....he will learn to caudle himself.....and may not live life to his full potential. Our hearts were created in amazing ways.....we can be very resiliant to such deformities. Always use prophylactic antibiotics.....and NEVER ignore strep throat......Enjoy your new life......You have already been through many amazing things....and the best is still yet to come!

matbunch
 
H Mat, sorry to hear you found a need to find us.. I know how hard it can be to sit around waitig for tests and results, sometimes it fells like your life is on hold and you dont want to make plans until you know what is going on with your heart and will need surgery anytime soon. it stinks
Of course as others said im not a doctor and dont have all the info they would or even just the echo results,(do you have them?) BUT hopefully since the only thing they mentioned trivial regurge, and nothing else I would guess you probably dont need surgery soon..but who knows what the MRI will show that the echo didnt.
I'm glad you schedualled your MRI, but another thing I would take as a good sign is they didnt schedual one or additional testing, for you right away, like most doctors would if something looked bad.
I'm glad to hear you aregoing to Adults with CHD secialist, they really do have the most experence with hearts like yours. You also might want to check out the forums at the ACHD orgs site http://www.achaheart.org/community.aspx there are probably a few members there who had intervention for Coarc as babies/young children and are adults now.
 
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Welcome Matbunch. I haven't been on the site much recently but a VR Friend emailed me about your post because they recognized some similarities with my experience. Funny how the Coarctation was such a big deal when we were little ( well, the possibility of "sudden death" made it a big deal ) and the valve thing was just something we were going to have to do when we got old. Well, I was 42 when it went south and it's not so old as it had seemed when I was young :)

Anyway, cough? Yes; I had it too. Just couldn't really get a deep breath. Couldn't climb hills. Still can't do that anymore. I developed some pulmonary hypertension while the bicuspid was still singing its sad song. I didn't realize then that I was having classic SOB, "shortness of breath." Also, I frequently did track walking and would get a sick ache up my back and up both sides of my neck. Found out later that was angina. I'd always been followed by cardios but the group I'd been with then was really inept. I will be kind and refrain from going into detail about those bozos :eek2:

Anyway, I began researching and decided it wouldn't be a bad idea to consult with an excellent surgeon and see what he had to say. Ended up consulting with three surgeons. I wanted to be sure. But it was clear I was in bad shape. The earlier advice from one lousy cardio could have put me in an emergency OHS situation.

So, tests are good. See how things are progressing. Or digressing. Don't be afraid to consult with more than one surgeon. Research and then trust your instincts. And he/she may have their favorite cardio group. That's how I found my current cardio, through the surgeon I selected.

I still remember how amazed I was to find this site! What a relief to read others' experiences.

The valve surgery was rougher recovery-wise than the coarctation surgery, for me anyway. But I was amazed at how much better I felt after recovering! Wow, how well a body can feel when its main fuel pump is working properly!

So welcome to the site and best wishes to you and please know and remember that there are no dumb questions here. We've been there and we understand. Take care :)
 
Thanks Lily,

I'm begining to think my cough is SOB as you have described. I'm hoping my workup will describe just why I am experiencing it. Cardio symptoms seem to be so subtle...that it's difficult knowing if they are there. Almost all of it can be expained away.....i.e. old age....not fit.....indigestion.....etc. I've had so many workups and echo's in the past...that I gave up complaining about any of it.....because it always turned out to NOT be my heart.......or was it. I just returned from my first ever MRI. 2 1/2 hours lying motionless on a bed....except for the incessant deep breath holds.....which kept me from sleeping LOL.

I desperately tried to get some feedback or results.....but didn't get much.....the technician did say she thought my aorta looked good....though she added that she is NOT a cardiologist. I am currently at Orlando Regional Medical Center....and Orlando Heart Institute....seeing a Cardiologist who specializes in Adults with congenital heart defects. I've definitely had a more thorough work up than I have ever had since my childhood visits to St. Christophers Hospital in Philly....including a detailed 4 hour visit with the doctor. If today's neverending MRI doesn't find any major concerns.....I'm pretty confident I can sleep a little better for now....and maybe (if in fact there are no serious concerns) I just had my baseline MRI.

I know that dizziness is another symptom......is this like vertigo dizziness and a loss of sense of balance.....or is this the dizziness you get when you hyperventilate....or your blood pressure changes suddenly.....(like a slow blackout) . I've had some strange vertigo over the last few years....and gone months without a sense of balance....During the worst....in ER visits....my EKG was always normal...so they never did any further heart work up. I'm assuming since a chiropractor finally relieved my symptoms by adjusting my neck.....that my dizziness is NOT heart related. But I feel like a frog in a kettle that slowly turns hot......all of my symptoms have been gradual...and subtle....and I've never thought of jumping out of the kettle and getting thoroughly checked out until now.

It has been wonderful talking with so many people who have walked in my moccasins. I really need to talk this out....and not many people around me are as interested. Thank you for your reply!
 
"Subtle, old age, not fit..." Yes! Before I found out it was my valve causing issues, I remember thinking, "Well, I guess I'm just not aging very well." My decline was gradual. But as the valve got worse, the decline accelerated. Many other members here have also noted this.

BTW, did you mention why your VSD wasn't repaired? (Is that the hole in the wall between the chambers of the heart?) Maybe they couldn't repair that during the back entry for a coarctation? I didn't have the VSD issue. I wonder how much that might be contributing to your symptoms also. I recall reading here, over the years, that some didn't know they had VSD and it was discovered during their valve surgery and repaired then.

I was surprised how many strange and random physical issues resolved when my valve was replaced. The body needs a healthy pump with healthy valves.

Oh, Lyn also mentioned your echo reports. Some here, me included, keep a file of all of our reports. You never know when you'll need them. The valve surgeons even wanted to see a copy of my op report from the coarctation surgery and I didn't have it and the hospital didn't have it anymore either. Just a 'heads up' on that.
 
Oh, I get where you guys are coming from. It was so tricky to discern between being early forties and busy, tired, not exercising enough etc and ... wow, is it actually my valve packing it in after all this time? Well, mine certainly was ... turned out to be unicuspid! So lucky I had the surgery when I did ...
And 15 months on ... feeling great ... we're lucky to live in the 2010s when the surgery is so available and so sophisticated.
 
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