New and looking for some clarity

[Orangebrittainy]

I know I have had heart issues as long as I can remember, but I never really understood what was going on. It used to be because I was young and used to doctor's talking over me. Also because so many different terms and rules were thrown about. Literally every time I had a cardiologist appointment I would have a new and completely set of dos and don'ts. Most of the time they contradicted what I was told previously. That being said, I am horrible in biology, and just don't get it.

As I get older I am starting to understand a little bit of it. (I am 24 now)


From what I understand I have a bicuspid valve and some regurgitation. My Aorta is also enlarged on one end (more so than the other I guess) When I had my last Echo in Feb. the technician showed me the valve (because he was awesome and realized that I had no real clue what was going on) and It looked like a rainbow to me, (Small and arched and getting bigger as it went) It has been 4 years since my last appt. and the cardiologist was not happy about that, but there was nothing I could do without insurance.

He said I was measuring at 4 (cm I think) and 5 was the point of operation. He told me that at a slow pace of .2 cm a year I had about 5 years, but if it was rapid growth I could have as little as a year. He went through the list of symptoms, but I was really nervous at hearing this and really didn't answer him honestly. I left out a few things. (plus I didn't know what a palpitation was at the time) He asked about shortness of breath (yes) dizziness or fainting (Yes to dizziness, no to fainting, but one near fainting spell) Palpitations (which I said no to, but when I looked it up, found out I had been having them). I also told him about My arms and legs falling asleep frequently. (I can't sit for 30 minutes without my legs falling asleep no matter what position they are in)

He ordered a CT scan to get an accurate measurement, and then told me to come back to see in in 6 months. (which is monday week)

I was wondering what you could tell me so I can better understand him next time. What questions to I need to be asking to figure all of this out better?

Also the palpitations have been getting worse. I have been out of work most of the summer (preschool teacher who works the same schedule as public schools), and I am just going back but before I got out I was having bad palpitations about once a week, that would keep me awake at night for 2-3 hours.

Anything you can tell me will help. I have more questions that I will be asking later, so please be kind to me.

Thank you for input!

 

[Equusz]

Hi there:

I would do a lot of reading up on this forum and find out about the anatomy and physiology of the heart, aortic valve, and aorta. It's really not hard...a lot of people on this forum are more informed than some doctors. From what I've seen, there are a lot of great sources and references on here.

About your symptoms: you need to be perfectly honest with your cardiologist about the symptoms you are feeling. Being dizzy and having shortness of breath and the other symptoms you mention could be signs of valve failure. You must let your cardiologist know about all this and let him order the appropriate tests. You are symptomatic and that can mean danger. Also, don't let yourself be intimidated into not asking questions. Ask your cardiologist to clarify everything you don't understand. Keep asking until you understand and have a clear picture of what's going on. This is your life, and you must be totally informed in order to make the right decisions now and in the future. Stay in that office until you have all the clarity you need.

Things you need to ask, and keep asking until you understand:

-How much regurgitation (backflow of blood) or stenosis (constriction/stiffness) of your aortic valve is present?
-Exactly where in your aorta is the aneurysm?
-What is the condition of your heart muscle, specifically the left ventricle, which can enlarge and/or become damaged after compensating for a problem aortic valve for years.
-What kind of surgery would your doc recommend, keeping the valve or replacing it, when they fix your aneurysm?
-You want to have a full EKG to identify your palpitations. They may just be sensations, or they may actually be PVC's or PAC's. Usually palpitations are more of annoyance than anything...if you don't have coronary artery disease they're usually not bad signs in themselves. I had PAC's (premature atrial contractions) after a heavy meal or when recovering from exercise. They went away when I went on beta-blockers for my blood pressure. But it could be A-Fib. The place to start is to take your pulse when you're having palpitations and see if your pulse is irregular/skips a beat when you have them. A-Fib, PVC's, and PAC's are all easily controlled with the right medicine.

Not trying to scare you here, but you have to be your own advocate for understanding, and hiding the symptoms from your cardiologist is basically throwing your money away. If he doesn't know, he can't help. It's scary, but your not doing yourself any favors by burying your head in the sand. And it may turn out to be nothing. But you owe it to yourself to get all the answers, whether they're scary or not. And then you find support (lots of it here!).

And for Heaven's sake, if you don't understand a medical term your doctor uses, ASK HIM WHAT IT MEANS!

Good luck,

Equusz

 

[Luckyguy17]

Brittainy,

Firstky welcome to the forum.

Good on you for gathering information ahead of time, in preparation for a probably future surgery. All members on the forum are kind and caring and you can and should ask what you need to.

Not sure about your stated 4 and 5 measurements?
A normal aortic valve has about 2cm square opening and surgery is often considered as required ASAP/critical, when aortic valve is reduced to about .5cm sq opening Replacement aortic valves are normally in the range 19-23 mm or at about 2cm in diameter, to mach the approximate norm of a human aortic heart valve.

But with the number of symptoms and severity of symptoms you describe, would be surprised that surgery would be 1-5 years away, it sounds like it would be sooner. If I am understanding correctly, you will soon be meeting the cardiologist and may be getting another echogram/ultrasound?. Be sure to discuss all of your symptoms with cardiologist and also request copies of your test results, for discussion with cardiologist as well as for sharing and questions for the forum.

All the best with the process and ask away

Gil

 

[Equusz]

"4 and 5" were measurements of her aorta. She has a 4.0cm dilation and 5.0 is the usual number for surgery.

 

[Greg a]

​

WELCOME and as a preschool teacher you must undestand the power of the question !!!

While none of us here are medical practicioners many live parallel or similar lives and answers can be forthcoming from many fronts

ONCE AGAIN WELCOME :thumbup:​

 

[nngbwh]

Welcome to the board.

 

[ALCapshaw2]

Welcome Aboard Brittany !

First, you need to know that there is a Lot of GOOD NEWS about your situation.

You live in a time and age when Heart Surgery is a Highly Refined Art with GREAT SUCCESS Rates, especially for First Timers.

It would be wise for you to obtain copies of all of your previous test reports, especially the echocardiograms, or at least your last one(s). These can be obtained at the facility where you had your tests by signing a Release of Information form for 'personal use'. There may be a copying charge. There is information in the Reference Forum on interpreting test results or we can help with specific questions. Once you 'know your issues' and the measurement parameters, it's pretty easy to read and interpret the reports. You can also request copies of the Letters from your Cardiologists to your Primary Care Physician. These reports and letters will tell you much more than is typically discussed during office visits.

Based on your symptoms and results, it sounds like you do have Heart Valve issues but are NOT yet in the Severe or Critical stage so your Doctors have time to develop a treatment plan.

As others have stated, it is Imperitive that you tell your Cardiologist the "Truth and the Whole Truth".

I know that "palpatations" can be 'disconcerting' but most are benign (you can tell when your Cardiologist yawns) and are controllable with appropriate medications. Your cardiologist will probably order an EKG for before he even comes in the room. Hopefully they will be able to see and identify them while you are there. If your EKG is normal in the office BE SURE to tell him about your 'palpatations'. He may then order a 24 (or 48) hour Holter Monitor for you to wear in hopes of capturing those events. There are also 30 day "Event Monitors" just in case nothing shows up in the shorter test.

When you get anxious, take some Deep Breaths and try to relax.
It sounds like you are in good hands and you will be OK.

Here's hoping your next Cardio appointment is informative and productive.

'AL Capshaw'

 

[Allisoninoz]

Welcome. It is scary but there is a great deal of good information and you need to ensure you understand what is going on. I see you are a mum. If you do need surgery soon, make sure you talk to your cardiologist about what impact different valves have on further pregnancies (if you hope to have any more children) as there is important information you need to know (I won't pretend to know it all).
There are so many helpful, friendly people on this forum so educate yourself and ask lots of questions of your doctor and here!
Good luck

 

[Equusz]

While none of us here are medical practicioners many live parallel or similar lives and answers can be forthcoming from many fronts

Some of us here are medical practitioners.

 

[Ross]

Most importantly, get copies of all of your medical records now! What your describing is BAV with aortic aneurysm. You cannot afford NOT to be checked frequently. Aneurysms have a mind of their own. They can stay the same size for years or they can suddenly enlarge and rupture. For most people, that means instant death. I was lucky enough (or unlucky enough) to survive a rupture. You do not want to go there!

 

[Mentu]

OB, welcome to VR; here you are among friends who share many of your experiences. What the others have said in their responses about talking with your Cardiologist is essential. You cannot make this a guessing game for your Doctor. If you don't tell him/her what you are actually experiencing, he is less likely to understand the progress of your disease. A good thing to do is to write a description of what you are feeling throughout the week. Don't try to categorize it as heart related/not heart related because you may not recognize some symptoms. Make notes about how you sleep, how you wake up, how do you feel in the morning, afternoon, evening, what is your exercise level, how far do you walk, does anything make you feel less well, do you associate palpitations or shortness of breath with activity, dizziness, do you have problems concentrating during the day, what makes you tired, when do you get tired, do have you ever have chest pains? Take your notes with you and discuss what you experience with your Doctor. I know I am repeating what has already been said but, your Doctor works for you. You pay him for his expertise. If he uses terms you are not familiar with, ask for definitions and ask for copies of your tests.

There is a lot of information here in VR. If you cannot find what you need, ask us where to go. You don't need to become a biologist to understand the basic mechanics of what is happening to your heart and that information is readily available. As a place to start, review the basic anatomy of the heart and aorta. Once you know where things are and how they work together it is easier to understand the changes that damage causes and to appreciate the symptoms the damage causes. At that point, it is a lot more clear what surgery can do for you.

 

[Orangebrittainy]

Thank you everyone for your information and the warm welcome. I am hoping that for me this is a new and improved chapter, in the story of my heart problems.
One of the reasons I am trying to seek this information is because I realized I have been highly irresponsible in the past. When I came home from my last appointment with the time frame from the doctor my husband shut down. He lost his mother when he was 12, the idea of major surgery scares him and he is terrified of raising our son alone. I keep trying to help him see that although it is serious that mortality rate is really low, and that it won't be too long and I will be able to resume to life as normal, but he just doesn't seem to hear me. He has always known one day I would have surgery, it was that one day factor that made him able to deal with it. Since the appointment He shuts down when I talk to him about any aspect of it, be it trying to figure it out or my next appointment or the CT scan.

In the past I have always had someone with me to help me to remember the details, and At my last appointment he could not get away from work, now though he really is extremely uncomfortable with the idea of going, and just distances himself from it. I know in the end we will be ok, and he will deal with it, but for now, I have to be able to explain everything well to my mother in law because my Mom is 10 hours away. I am going to start hunting for information.

Once again thank you.

 

[ALCapshaw2]

It sounds like your husband may need some sort of professional intervention to help him cope with your heart issues.
Most spouses eventually come around. It helps if they accompany the patient to his/her appointments and the cardiologist helps to put things in perspective in terms everyone can understand. If that isn't working, perhaps his Primary Care Physican can help him to comprehend the issues. If that doesn't work, he may need some professional counceling.

In the mean time, you need to do what you need to do for YOU, starting with a open and honest discussion with your Cardiologist after your next Echocardiogram.

Best Wishes,

'AL Capshaw'

 

[DavesMom]

Hi,

Welcome! I really can't add more to the terrific advice you've gotten already but I will second Al's point about heart surgery being so advanced these days that there is a terrific success rate. They had me up and moving quickly after my AVR/aneurysm repair and it was so much easier than I had anticipated.

So again, welcome and keep us posted on how things are going. Take care!

 

[ARGreenMN]

Welcome aboard Brittainy! You've found the best place possible to help you understand things, and not only get advice, but support too. I totally get the being "irresponsible" thing (did the same thing myself) but don't beat yourself up too much about what you did or didn't do in the past. Just start being smart going forward. You're going to be fine, and your hubby will eventually be ok too. There's some videos on Youtube by a guy named Dan in England which helped my daughter feel a lot better about the surgery. I'd suggest trying to get your hubby to watch a couple of them. Here's a link to Dan's blog, which also has the same videos: http://heart-valve-surgery-journey.blogspot.com/

Based on your symptoms, my guess is you're probably not too far away from surgery, so it's time to make sure your docs know the truth so they can get a good plan in place for you. There's no use trying to ignore the symptoms - they just get worse, not better (trust me - I found that out). It's MUCH better to go ahead and get the surgery over with. As you'll see in many posts in this forum, the surgery is scary, but for the vast majority, it's nowhere near as bad as most of us thought going in. The worst part is what you're going through right now - the waiting. The actual surgery itself is usually not that bad, as long as you catch things early enough. I'm not saying it's something you want to put your body through more than once if you can help it, but depending on your plans for more kids, you may choose tissue (which would mean at least one more surgery later). There are lots of threads on here that talk about the pros and cons of tissue vs. mechanical so I'd recommend reading them. Knowledge is power! Keep posting questions as they come up, and again, welcome aboard - this place rocks!

 

[Jkm7]

Welcome! Happy you found us but sorry for the reason.

I understand what you are saying about your DH and while he may be a little more extreme than some others, his fear and attempt to distance himself is not unusual nor unheard of around here.

The stark reality he must be forced to understand is that when it is time for your surgery, if you do not do it, there is no question but that he will lose you. These conditions never heal themselves and the only successful treatment for valves and anuerysms that require surgery, is surgery.
Of course, his help and support for you will be greatly desired but you can do it, if necessary, with his denial. The success rate for young (and not so young) patients is Hugely in our favor. No reason to think you won't do fine if you work openly with your doctors.

 

[Arbirey]

Same Condition. Operated 6 Days Ago.

Same Condition. Operated 6 Days Ago.

It seems that you already know most of the things you needed to know to understand your situation. Gil is right that this thing could be sooner so it looks to me like you should start focusing on "when" the valve will be replaced from now on. Things you should consider when you see you cardiologist next are":
1. The type of valves options you have to decide on to be put into you.
2. Where is the best hospital to handle to case in your city?
3. Who is the surgeon who is going to handle the surgery?
4. When are they going to give you an angiogram? (A small camera will be insert in your vein to see the extent of your condition in preparation for surgery)
5. How long are you going to stay at the hospital and how long will the recovery time be?

I hope this help you in anyway.

Reodello

 

[Orangebrittainy]

Just popping in quickly to check up on this before work. its funny you are talking about pregnancy. That is one of my biggest concerns. My son is 4, and We are ready for another one, but that is completely dependent on this next appointment. I didn't realize there were so many options. I will definitely check out the mechanical vs. tissue debates here soon. Thanks so much!

 

[Jkm7]

A pregnancy with a mechanical valve is not recommended and can be extremely dangerous to Mom and baby.
A pregnancy with a tissue valve is absolutely possible. We have Moms here who had their babies after their valve replacements.

There are lots of things you would discuss with your doctors in this regard.