Introduction... new to the forum

[Kelly2632]

Hello, my name is Kelly. I will be 51 years old on January 7th. I did not receive my BAV diagnosis until I was 38. I had been to a doctor (doc-in-the-box) a few times when I was 36, and he said I had borderline high blood pressure every time I visited. (Probably in the 140/90ish range). He suggested I see my General Practitioner. I did that, and was put on Lisinopril for a year. My blood pressure did not stabilize over that time, so she recommended that I see a cardiologist. It was at that time that the cardiologist discovered I had a BAV. He also mentioned that I had a mitral valve prolapse with “slight” regurgitation.

I have always been asked about my “murmur” when at any doctor appointment.

Long story, short – at one point I was on 3 blood pressure medications – 2 of them Calcium Channel Blockers. I have visited my cardiologist once a year since my diagnosis.

In June, through a CT Scan of my neck for lymph nodes, it was discovered that I also now have a 4cm aneurysm on my Aorta valve. I found this forum through Facebook. I have joined to discover as much information as I can prior to my next appointment with the cardiologist (on January 8th).

I feel so ignorant of my own diagnosis. I have spent the last 5 years learning about cancer. Pancreatic cancer for my Mom, and Non-Hodgkin’s Lymphoma for my husband. Both of them have now passed away. No time like the present to focus on myself, right? I have so many questions…

My most recent TTE has the following results and I'm angry with myself for not understanding what the numbers mean! I know that no one here is a medical specialist, but would truly appreciate any feedback!

Indications: Aortic stenosis and Bicuspid Aortic Valve.

LVEDd: 4.68 cm
LVESd: 3.18 cm
IVSEd: 1.03 cm
LVPWd: 1.12 cm
AO Root Dimension: 2.69 cm
RV Dimension: 2.62 cm
LA Dimension: 3.27 cm
LVOT: 2.11 cm
EF Estimated 55%
FS: 32.05%

Doppler Measurements:

AV Velocity: 387 cm/s
AV Peak gradient: 59.91 mmHg
AV Mean gradient: 37 mmHg
AV Area (Continuity): 0.65 cm\S\2
MV E' velocity: 8 cm/s
MV E/A ratio: 1.11
MV Peak gradient: 1.87 mmHg
MV Peak E-wave: 68.44 cm/s
MV Peak A-wave: 61.89 cm/s
MV P1/2t: 55.2 msec 3.99

I appreciate any information in advance!!

 

[harrietW]

Kelly2632
Don't be mad at yourself for not known what all that means. It is confusing and overwhelming but don't be upset with yourself you have obviously experienced great loss and l am sorry you have had so much to deal with.
Welcome to the site.l cannot speak to or try and make sence for you your results and numbers as it has taken me 3 yrs to try and understand mine.
Just ask questions l know sometimes these results can be scary and we don't even know what we're looking at.
This forum is so comforting with so much knowledge and personal experience. Maybe someone with BAV can help you disifer some of it as BAV is not my personal issue.
I have both sever mitral valve regurgitation & stenosis as well as aortic valve stenosis and regurgitation.lm going in hopefully Jan 5th for a double Valve replacement surgery mechanical valves.
I really just want to welcome you .. don't forget to breathe and try not to be to overwhelmed. They answers come little by little and it all starts to make sence.
Best of luck keep posting and work your way through the site. You wouldn't be sorry. Hang in there. There's lots of BAV here to share there experience.
Hugs to you. Xx

 

[Paleowoman]

Hi Kelly - welcome to the forum. You certainly shouldn't feel ignorant at your diagnosis. Few of us know what all the measurements on our echocardiograms mean, we're usually only told about the ejection fraction, the pressure gradient, the aortic valve area size and the measurement of the aorta if there is an aneurysm, plus if you have mitral vavle problems te measurements to do with that. When you see the cardiologist in January ask him to explain what your measurements mean and what the indications are for surgery.

 

[neil]

hi Kelly, agree with paleogirl ask your cardiologist your questions and fire away them, they are the experts and have been asked every question going, good luck and you will be just fine

 

[honeybunny]

Welcome Kelly. Personally, I have not paid attention to any of my numbers because when I was diagnosed with BAV and severe aortic stenosis in June of this year, I was told I would need AVR within a year. That was all that mattered to me. For those in the waiting room with perhaps years to go before surgery, the numbers would make a difference and need monitoring. But please don't be angry with yourself. As suggested above, follow up on your next doctor's visit.

I'm sorry for the loss of your mom and husband. I was widowed in 2001. My husband had a BAV and surgery at age 15 in the 1960s to create two cusps out of one. He was not forewarned about the procedure or recovery and as a result was traumatized and refused to go to a cardiologist from then forward. Had he followed up, he'd proably be here today. The autopsy was inconclusive but I'm certain his death was a result of his heart condition. Though he wasn't with me physically, I very much felt him watching over me during this journey.

Keep us posted.

 

[dornole]

Sorry you have had to cope with so much caregiving along with grief and loss. I hope you still have family nearby to support and care for you.

It's true, your cardiologist will go over these results with you. My guy told me "we look for these four things . . . " and explained what would trigger surgery. They basically have a flow chart logic "if this, then look at this, etc." that includes both your echo results and symptoms you are experiencing, if any. Then they can decide to go to surgery, order some other test, or monitor. Most of my "career" as a heart patient that has meant a yearly echo, a couple of times put on six months echos and thought "OMG this is it!" only to go back to yearly. The progression is not linear so even if you do understand all your numbers, you can't necessarily predict what the timing will be. They might be able to give you a vague window of how far out is statistically likely (mine was 10-15 years, I'm on year 13). They'll also be able to tell you what problem(s) you have (stenosis, regurgitation, aneurysm) and how severe they are (mild, moderate, moderate-severe, severe). This article goes through some of this (super long and technical) if that comforts you, http://content.onlinejacc.org/article.aspx?articleid=1838843 but if I were you I'd try to just pause till you see your doc in a few days. Keep in mind this could be anything from a call for prompt surgery to simple monitoring where you could remain medically boring for many years to come.

Keep us posted how it goes.

 

[Warrick]

Hi Kelly, you sound very similar to my situation, murmur "arrived" eight years ago, I only found out I had a bicuspid valve four years ago and was told by my ignorant GP it's nothing to worry about just have it checked in 10 years time...,. Got the muck end of the stick earlier this year I was just starting to get some chest tightness, 22nd September had a TOE and told need surgery as leakage was severe, last thing I expected at 39 and the next thing new valve 6 weeks later, aortic artery was dilated to 4.27cm, I got a copy of the echo report which told me the bits that they were worried about, the cardiologist reckoned they would replace the artery root but then the surgeon said there would be enough scar tissue to keep it pulled in, I guess time will tell , my mitral valve was decalcified while he was in there as it was a bit leaky like yours but it was from the regurgitation jet squirting back onto it. My Dad had a mechanical aortic valve from rheumatic fever back in 1984, smoked for another 29 years and drank like a fish, he's still going at 73!
If you can get the report copies it explains a lot. I'm seeing my pre surgery cardiologist next week so see what his take on is on the surgery and recovery. Good luck to you

 

[Kelly2632]

Thank you everyone! I had no idea I had new posts. I guess I don't have my notifications set up properly on this forum.

 

[pellicle]

hi and welcome aboard

Thank you everyone! I had no idea I had new posts. I guess I don't have my notifications set up properly on this forum.

notifications are patchy, so its nothing you have done "wrong"

I am not very knowledgeable on the numbers you quoted so I didn't know what to say when I saw your post (and I was staying with friends out of town).

Myself I try not to concern myself with stuff I can't manage, so I leave that to the cardiologists ... I believe you are in good hands.

Best Wishes

 

[Kelly2632]

Sorry you have had to cope with so much caregiving along with grief and loss. I hope you still have family nearby to support and care for you.

It's true, your cardiologist will go over these results with you. My guy told me "we look for these four things . . . " and explained what would trigger surgery. They basically have a flow chart logic "if this, then look at this, etc." that includes both your echo results and symptoms you are experiencing, if any. Then they can decide to go to surgery, order some other test, or monitor. Most of my "career" as a heart patient that has meant a yearly echo, a couple of times put on six months echos and thought "OMG this is it!" only to go back to yearly. The progression is not linear so even if you do understand all your numbers, you can't necessarily predict what the timing will be. They might be able to give you a vague window of how far out is statistically likely (mine was 10-15 years, I'm on year 13). They'll also be able to tell you what problem(s) you have (stenosis, regurgitation, aneurysm) and how severe they are (mild, moderate, moderate-severe, severe). This article goes through some of this (super long and technical) if that comforts you, http://content.onlinejacc.org/article.aspx?articleid=1838843 but if I were you I'd try to just pause till you see your doc in a few days. Keep in mind this could be anything from a call for prompt surgery to simple monitoring where you could remain medically boring for many years to come.

Keep us posted how it goes.

Thank you for posting that article. SO much information there!

 

[Kelly2632]

Well, I thought I'd update this post. On May 26th of this year, I had my aorta valve replacement surgery (Carpentier-Edwards PERIMOUNT Magna Ease)
via a mini-sternotomy at Emory University in Atlanta. Though my numbers still didn't show that I was ready for surgery, I had severe problems breathing the last few months. Recovery has been relatively easy - once I got confident that I wasn't going to pass out when I started walking!

I actually found this forum again because I'm dealing with hair loss. Ugh.

 

[Kelly2632]

Well, I thought I'd update this post. On May 26th of this year, I had my aorta valve replacement surgery (Carpentier-Edwards PERIMOUNT Magna Ease) via a mini-sternotomy at Emory University in Atlanta. Though my numbers still didn't show that I was ready for surgery, I had severe problems breathing the last few months. Recovery has been relatively easy - once I got confident that I wasn't going to pass out when I started walking! Now I can breathe again!!

I actually found this forum again because I'm dealing with hair loss. Ugh.

 

[honeybunny]

Welcome back, Kelly! Glad to hear surgery and recovery went well. Breathing is a good thing

Double ugh on the hair loss. I have very fine, thin hair and not much of it. The right front forehead area is particularly patchy and I cried alot on the days my hair came off in my hands in the shower and looked really really bad. Eventually the loss stopped (I forget how long it took). I also restarted taking biotin and using minoxidil (for men) on the balding areas. I can see some hair growth. It will never be fully covered but it's a little better and I don't cry anymore.

Hugs,
Michele