Pre-surgery

[pipersmith]

Good afternoon! I am so happy to find this. I was diagnosed a week ago.(severe AI) The doc told me my valve was not working, I would eventually need surgery - but not now - prescribed some meds and sent me on my way. The only reason that I know my diagnosis is that he wrote it on a wallet card about antibiotics.
From my reading, I know that I am certainly close to surgery, as I am very symptomatic. I am a 33 year old mom of 4 - any advice is welcome. I am certainly preparing a notebook of questions - I hope the doc is ready for a REAL appointment on the 30th.
Just FYI -
I have been to the doc for headaches, palpitations, chest pain, (sounds like a laundry list I know) . They were each attributed to something else - until he heard the murmur. The murmur that I can feel with my finger by the way...Thank goodness he heard it though
I have dizziness, fatigue, I am always aware of my heart and heart beat - although it does not always hurt. I have angina - mostly at night when I lay down. I am also having pain in my left arm, neck and jaw. My blood pressure is lower in that arm and my pulse in that arm very weak. I wonder if any of you have those symptoms(arm, etc) as I do not see them listed as much. I also have vision issues - brightness, light sensitivity. Just wondering and wanting to say hello

I look forward to getting to know you and learn from you. Best of luck to all who need it

 

[Marguerite53]

Welcome to this wonderful community!! You sound to be in very good spirits considering the impact of your news. That is a wonderful place to be!! These surgeries are very common now, and prognosis is generally very very excellent.

If you haven't already, please ask the doctor's office to forward you a copy of your most recent echocardiogram. Usually there will be a chart of numbers and then comments from the cardio. Seeing these numbers and discussing them with us will help you understand more about your alternatives, and your condition.

You do sound very symptomatic. You should definitely ask the cardio if there are any restrictions for you at this point. Please let us help you formulate some more questions for him. Can you tell us any more about what tests have been performed on you and any results?

Again, welcome aboard! There will be others along shortly greet you!!

Marguerite

 

[Superbob]

Piper,

Welcome to the Forum! You'll find all kinds of experiences here, and caring people to tell you about them.

I am not a doctor, but it certainly sounds as though you have an array of symptoms that should cause concern. I am glad you are preparing to grill your doctor about them. If the diagnosis points to heart-related problems correctible by surgery, my advice would be not to delay. Better to fix the problems and move on to a better quality of life than to let things run their course uncorrected.

All best wishes,

 

[pipersmith]

Thank you for the kind words. I cannot think of a better resource - I have had so many questions...

So far, I have had a normal EKG. I had an Echo my first visit to the cardio. I do not have any results in my possession- but that is the first thing on my agenda. He originally said make an appointment in a month to dicuss a TEE- but called Friday after further evaluation of the echo and does not want to wait. I will probably have that done this week. He prescribed Norvasc at my visit. That is all the medical info I have right now.

Basically, I think that symptoms showed up about a year and a half ago. The doctor and I both attributed them to other things - weight, hormones, family history of headaches. I do think that if he had listened to my heart beat - he may have heard the murmur and I could have started learning then - but shoulda coulda woulda is no good now I lost about 40 pounds - felt so much better - assumed that was the end of it - until May when strange symptoms started. I thought that I was overdosing on the beta blocker that the doc had prescribed - the symptoms are so similar. Shock when the symptoms continued when the beta blocker ended. That visit provided the first clues - loud murmur, odd blood pressure readings. Now - here we are.

I recently found out that my biological aunt was rushed to emergency surgery a couple of years ago - pertaining to her heart valves (that is all I know). Upon learning this in addition to my own news (congenital valve problem), I am wondering is this hereditary? Should I have my kids evaluated?

I would love to hear some opinions regarding valves. I will explore threads on my own - but please feel free to share opinions/ experiences here.

From those of you post surgery - I am wondering about recovery time. I am the primary caregiver of my four kids. I am trying to think ahead as to how long I can expect to need help with that. I know that sounds a bit premature - but significant arranging and travel will be involved on the part of my support "team," I am trying to think ahead.

My next visit to the doc will be this week - suggestions for questions welcome

Thanks for the reassurance and info - priceless truly....

 

[Marguerite53]

Hm. I'm not clear on whether you have stopped the beta blocker? Probably was a good thing that you were on it. Stopping it suddenly can be dangerous, I've read. I am still on it post op and until I lose weight and exercise regularly, they won't consider letting me drop it, even though I'm not experiencing the arythmmias (when stressed, caffeinated or hotly spiced).

As far as surgery goes. You probably won't be allowed to drive at all for 6 weeks. I was okayed at about a month, but I tried it and it was no fun. Twisting to look properly, etc. was really uncomfortable and I still felt really spacey. And I was enjoying my vicodin, still, and didn't want to stop taking that right away, just so I could drive. You will need a driver!

How old are the children? Have you told them anything? My 3 are grown, 18,21,23. Others who have younger children have lots of feelings about telling the their children. Start a new thread with a title reflecting that, and I bet they'll chime in for you with their experiences.

There is confusing information about inheriting BAV. I think they are studying it closely now and new statistics and presumptions will be surfacing. Right now, you really need to focus on you. Don't worry about the children. You will have plenty of time while you are recovering to scan the internet, talk to us, etc.. Chances are they are not in any danger at the moment. Let's get you back to par first, okay?

That said, many of us have had our children tested. Please do a search on heritablity of BAV here on VR.com and you should come up with quite a few discussions.

Please take any and all offers for food to be delivered the first 2 to 3 weeks home. You just won't have the energy to cook or clean. Some, yes. But it shouldn't really be expected of you, okay? Start looking around for delivery places -- gather menus -- buy frozen dinners and snacks, etc.. Mostly, say yes to anyone who offers anything. With 4 kids, I really think you will appreciate it. Could you manage after 2 weeks....probably. Will it completely tax your healing body...yes. So give yourself a break and let all those people who want to help you, help you!!

Keep firing away the questions. Start new threads with different topics and that way more people will see the titles and respond.

Good luck. You seem to have a phenomenally great attitude. That will serve you well. Stay optimistic. After all. You are getting a new lease on life. Whether you feel bad or not, your body is failing you. This is all good stuff. Just a bit of a temporary hardship.

Marguerite

 

[RandyL]

That is some great advice that Margarite gave you, this is a great place with tons of info

 

[Liz]

Welcome to the site!

Welcome to the site!

I'm so glad you found us. Like others have said, it sounds like you have a great attitude and that is a huge help when getting through the amazing journey/challenge of heart surgery. Feel free to ask all your questions, and if you don't get as many responses as you would like, sometimes starting another thread with a specific question in the thread title will get more responses. There is a wealth of knowledge/experiences here.

Sounds like you are having a wide variety of symptoms, and I'm glad that you will be talking to your doctor about them. One thing I will tell you though, is that I had all kinds of strange symptoms before surgery (including arm, leg, and neck pain) which my cardiologist said were not related to my heart valve problem, but those pains are gone now (post surgery) so what does that mean? And I've read the same thing in posts from other vr members. What I have learned is that doctors don't know everything (although they usually don't want to tell you that), and a lot of doctors, even cardiologists, have not seen huge numbers of valve patients, and all valve patients don't have the same symptoms. Sometimes you have to trust your own intuition about what is going on with your body, and if your sense is that some weird symptom is related to what is happening with your heart, it probably is.

Regarding preparing for your recovery, and especially planning for your kids, I hate to tell you this but you are going to need a lot more assistance, for a lot longer, than you probably ever could imagine. I looked back to a couple of earlier threads where this question came up:

http://www.valvereplacement.com/forums/showthread.php?t=15886

http://www.valvereplacement.com/forums/showthread.php?t=7274&highlight=leighanne

Assuming that you have a smooth, complication-free surgery and recovery, for at least the first 2 weeks you will need somebody caring for you 24/7, and for at least the first 4 weeks (and really more like 6-8 weeks) you will need to make your recovery your priority. Quite a challenge for a mom!

Again, I'm so glad you found us, and I look forward to getting to know you better.

Take care,
Liz

 

[JohnnyV_46]

How is your blood pressure? Cholesterol levels? The pains in the arm,chest, and neck would worry me. I had 3 blocked arteries that caused my pain. Then again, I also had a BAV and aneurism.

 

[pipersmith]

How is your blood pressure? Cholesterol levels? The pains in the arm,chest, and neck would worry me. I had 3 blocked arteries that caused my pain. Then again, I also had a BAV and aneurism.

My blood pressure in my right arm is usually right on normal. The last time I checked my blood pressure in my left arm - at Wal-mart -the reading was 85/34. All of my own readings in that arm are low. When I went to the cardio - the first nurse could not read my blood pressure - she said she could not hear. They brought a digital cuff - i am not sure of the right arm - but they never got a reading on the left. The doc even said he could not find a pulse in that arm. I have not seen this symptom listed for this condition - I have wondered if there is not another problem.

No one has discussed cholesterol levels - that is a question that I should ask.

I am assuming that the chest pain is from blood pooling in my left ventricle. I happens the most when I lay down.

Thanks for the input - these are definately things that I should ask at my next visit. I aksed nothing at the first one - I think that I was shell shocked.

I hope that you are doing well now.

 

[pipersmith]

Hm. I'm not clear on whether you have stopped the beta blocker? Probably was a good thing that you were on it. Stopping it suddenly can be dangerous, I've read. I am still on it post op and until I lose weight and exercise regularly, they won't consider letting me drop it, even though I'm not experiencing the arythmmias (when stressed, caffeinated or hotly spiced).


hotly spiced huh hehe
I was on Atenolol - 75mg. When the symptoms started, and my blood pressure appeared so low (all machines seem to test the left arm - I found out later that my right arm was not low) I asked the pharmacist what to do - my appt. was a month away. He suggested cutting the dose. 2 weeks on half did nothing - so I weaned myself off. I truly thought I was just taking too much. I had seen that doc before - only on the beta blocker. I am wondering if he could not hear the murmur while I was on the beta blocker - because he missed it the first time and heard it after I was off the meds. He was surprised when he heard it - said not to take it again until seeing a cardio. I can feel the murmur in my neck at this point - squirt squirt.

About the kids - they are 12, 11, 8, and 3. I have not told them yet. I thought that I would wait until after the TEE - when I have more concrete info about what will happen. I will take the advice and start a thread. Thank you...

I scheduled the TEE for next Thurs. I am a little nervous about that - can't imagine having a surgery date I will also start a new thread - but I know the doc will discuss the findings that day - so a crash course in all those little numbers would be a good thing - so I will know what he is talking about.

I cannot imagine a more knowledgable and supportive environment -
THANK YOU TO ALL

 

[pipersmith]

Assuming that you have a smooth, complication-free surgery and recovery, for at least the first 2 weeks you will need somebody caring for you 24/7, and for at least the first 4 weeks (and really more like 6-8 weeks) you will need to make your recovery your priority. Quite a challenge for a mom!

Again, I'm so glad you found us, and I look forward to getting to know you better.

Take care,
Liz

Spoken like a true mom
Thanks Liz - nice to meet you as well.

I am about to read the posts you suggest - and then start a few new ones - so get ready (just kidding) This isi just such a great resource. My doc my have a lot of info - but he has never had the surgery ...

 

[marilyn]

question to ask about surgeon

question to ask about surgeon

I am trying a different thread to see of I can get some questions to ask for Thursday. I will be seeing Dr. Lawrence McBride - a surgeon at The Mayo Clinic in Jacksonville. I have aortic stenosis and 5 blocked arteries. I was told the valve is playing off the arteries. I have symptoms that have gotten worse. The symptom that I am fatigued and fullness in the chest that lasts for 1-3 days is different the last 8 months. I ended up in an ER room in VA Jan. with balance problem, fullness in chest or pressure, extreme nausea, and then heartburn. I was told to have surgery there because of symptoms. I hope it is ok to put this in different threads, but I need to know what to ask. I do not want to do surgery right away if I don't have to. Thanks

 

[pipersmith]

Thank you much Rachel. I agree - from what I have learned. This is something that I am planning on asking Thurs. (TEE with another doc) and on my next appointment on the 30th. I will be shocked if he still says the same.

Marilyn - I am new here - so I have no answers to your questions. I have learned that this is the BEST resource for your questions - I am sure you will have dozens of responses shortly. Take care!

Piper

 

[pipersmith]

Afternoon everyone.

I requested a copy of my ECHO results today. From his notes, I do not think that they are far off of normal at this time. I also think that he does not realize the extent to how I feel the symptoms - definately a topic for discussion. I would be happy to know that all is ok for a long time to come - but physically, I feel like a different person than 3 months ago.

Here are the values.....any and all feel welcome to translate - it is still Greek to me

LV end diastolic dimension 3.9cm
LV end systolic dimension 2.3cm
Septal wall thickness 1.1cm
Posterior wall thickness 1.0cm
Aortic valve opening 1.8cm
Aortic root diameter 3.6cm
Left atrial diameter 3.2cm

EJ fraction 60%

He added - There seems to be severe AI with normal peak veloities across the aortic valve at 1.9 meters/second. Trace mitral regurgitation with normal mitral valve inflow patterns. Trace tricuspid regurgitation. Limited views - cannot tell if the valve is bicuspid or not. A TEE is scheduled for next Thurs.

Thanks in advance for the info...