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jlynne

jlynne

New member
Joined
Mar 26, 2009
Messages
3
Location
Indiana
Hi,
I am a new member as of today. I have snooped around and read posts, stories, etc for some time. I was really excited to find this site. I was born with my bicuspid aortic valve. I am now 26 years old. It has become stenoic--to what degree I'm not sure. It is also leaky. My valve area at my last Echo 6 months ago was 1.2 - 1.1 cm. My cardio told me the critical stage was .9 - .8. I am having my routine 6 month Echo on April 1. (cross my fingers) I don't really have any of the common symptoms of BAV. I exercise well without feeling short of breath or having chest pain. I think it was about 7 years ago, I finally (or the Dr.'s its all foggy) realized 'what' was wrong with me. I was always told I had a heart murmur. So, at my last appointment with the cardio 6 months ago, I was told 'well you will probably have to have surgery in the next year or two'. AHHHH This started a downward spiral of emotions and issues for me. During this time I just couldn't stop thinking about my heart...I felt like it was beating funny, I was having anxiety non-stop, I thought I was going to up and die just instantly. I was looking on the internet too much and was convinced I was going to have an aortic aneurism or something or was having a heart attack. Needless to say I needed a little extra help after dealing with this for a year. I had a history with anxiety and panic attacks so I decided to let go of my hold and get some medicinal help. I went on Lexapro for my anxiety. I am not a big medicine taker so this was hard for me. I like to do things the natural way. Well I am not kidding you the Lexapro was almost instant help. The bad side--I am pretty convinced it was the medicine was I gained 15 lbs. NOT FUN! So, I have since switched to Cymbalta and while I am having trouble losing, I haven't gained anymore. I actually also take 25mg of Metoprolol to help with the palpitations I was having---which funny enough haven't really been present since my anxiety has decreased 95%.
So, that is my story. Now I am on here as I mentioned, uneasy, confused and overwhelmed. I feel like I have so many questions. I worry about when I will have to have surgery, going through the surgery ( I have never been in the hospital for anything) dealing after the surgery.... and on and on. I would love anyone's advice, suggestions, tips, ect..... I would love to contribute my thoughts as well, once I get them a little better figured out. I have researched some things...but there is still so much to know. Here are some of my 'things' I just question:

Surgery itself--- recovery
Waking up with the breathing tube in
my sternum being cut and pulled apart!!! Aghhhh
glued or stapled shut ( I have been told the glue is a lot better for scaring)
dealing with Coumadin (my cardio says mechanical will be the best, I agree)
Good surgeons in Indianapolis?? How to choose...
Recovery time down.
Time spent in the hospital... and the list probably goes on. Sometimes I just don't know where to start.
Anyway...I appreciate any and everyone who reads my post and wants to offer anything. If you want to e-mail me, please use [email protected]

Look forward to reading, and sharing more!
Jess
 
Hi Jess.
First, welcome. As you've likely realized, you're in the right place. There's a ton of information and support to be had here.

Reading the description of your concerns, it's fair to say you're not alone. You can find many posts from people who have also had some challenges emotionally dealing with their surgeries. There are lots of suggestions and strategies on here for how to improve the situation. It sounds like you're on top of it already, but know that your feelings are normal for many.

As for the surgery itself, this place is an encyclopedia of useful info. The same is true for the recovery process. The best first step, I'd argue, is to get set up with a cardio and surgeon you trust and are happy to work with. That will help you participate in the decision-making process and understand what's going on with your body.

All the best.
 
Hey Jess,
Welcome to VR. It's a lot to think about isn't it? You are smart to educate yourself before your potential surgery even if it's years away. That education will make the whole process a lot easier.

Regarding some of your questions, you might consider asking some of them in a separate post in order to get more replies. You know, I was scared about the sternotomy too but it was actually not so bad. The pain was minimal and the scar has healed nicely after a year. They wired the bone, used absorbent suture on the internal tissue, and glued the outer skin. I think glue is the norm and staples are unusual any more.

The breathing tube freaks everyone out thinking about it, but it too is not so bad if you are prepared for it. When I woke up with it I just tried to relaxe and took deep breaths; it seems I was aware of it only for a few minutes and then woke up and it was gone. Relaxation techniques (imagery audio tapes, meditation) before surgery seem to help.

This site is a testament to the ability of people to actively manage coumadin. If you've read anything here it is how to maintain an active lifestyle while on ACT. You need to pay attention, but it is manageable.

I spent a bit of time in hospitals as a kid and I think that made my adult surgery easier. I knew what to expect. Those that have never been sick seem to have a harder time dealing with a hospital and all its accouterments. Not sure what to suggest to get over that other than maybe a visit to one and visualizing it as a healing, rebirth place.

You might consider some yoga for exercise and relaxation.
Please keep us informed.

Take care,
John
 
Hi Jess--
Just want to welcome you and to tell you how wonderful and helpful the people on this site are. I had a thousand questions before my surgery, and almost all of them were answered here. I think the biggest problem for me was the anxiety beforehand. ( I found Xanax very useful the closer I got to my surgery date) The surgery itself was not as bad as I had expected, and the recovery has not been too bad either, although it does seem to take a good while before you feel totally yourself again. Let us know how things are going.
Nancy
 
Hello and welcome to this wonderful place! Those of us who were pre-surgery when we came to the forum had just as many questions!! I'm almost 3 years post-op and I still have questions!! :p It is a never-ending learning process...sometimes you get SO full of info you want to explode because you can't quite process it or build it into anything coherent or personally meaningful. That's when it's time to just step away for a little while and let it all sink in and find a sensible place in your brain.

But in the meantime, use the Search button to find specific threads. Ask as many questions here as you like! If you start a new thread with a specific question you will likely get answers from a wider variety of people here.

I am glad that you have dealt with your anxiety. I hear you say that the palpitations no longer bother you, yet you take a medicine for it. Please, please please please... do not consider stopping that medicine without strict and specific instructions from your cardio or doctor. If that is a beta blocker, it is not something you can just stop one day, safely. you will have to wean yourself off of it. Certainly, if the palps have stopped then it's working!!! Those can be very annoying...many of us know this!!

I was just about your age when I was first told that I had a heart murmur and that it was probably a bicuspid aortic valve. I was also told that I probably wouldn't have any issue with it until I was in my 70's or 80's. I had echoes every few years, never gave them any thought, since I was told I was fine. So when the stenosis reared up in 2003, I was pretty surprised. But that's all history now! :D

Many of the members are very good at deciphering echo reports should you want to become more familiar with what all the numbers are. When you go in on April 1st, you should sign the papers necessary to have the Records department release ALL the copies of your echoes to you. you may get curious and want to look things over as you learn more and more. They are yours, those reports. They have to give them to you. It is a good idea to learn to understand them.

Lovely to have you with us!!! Please stick around... this is a wonderful community of caring, supportive people. I would have gone insane waiting 3 years for my surgery, had I not had this amazing group to turn to day after day!

Best wishes.

Marguerite
 
Hi Jess, and welcome to a great group of people. I also have a Bicuspid aortic valve, with a narrowing aortic valve (now at 1.6)I really don't have any outward symptoms to speak of and that is not unusual. Be sure they are looking at the aorta also, Those of us with Bav have a high percentage of aneurysms of the aorta. mine is at 4.6cm and being watched. While the thought of going thru open heart surgery is daunting, the caring and knowledge of the folks on this forum were instrumental in me getting to a place where I am comfortable with what I must have fixed in the future. So keep up the questions, try not to stress over this, take it as a blessing that you and the doctors are aware of it and can fix it when needed on your timetable. Again welcome!

Jjay
 
Welcome to the best circus in town! :D

Read around, chalk your mind with the information presented and whatever you haven't gotten answered by reading around, just ask.
 
Welcome Aboard

Welcome Aboard

Hello, keep the faith and things will turn out well. The alternative to corrective surgery sucks. As for me I didn't find this site until I was about 3 or 4 mos. post-op. It has been a great source of comfort for me to realize how many good people are still "out there". Advice or experience stories tells me I'm not alone. It's kind of like the old saying "until you've walked in my shoes". I too was told I had a murmur. 30 years later after becoming considerably more symptomatic I finally had a "TEE" procedure (trans-esophageal-echo) which showed clearly that I had more than a murmur. My ascending aortic anuerysm was already 2.5 times bigger than it should be. My aortic valve was first thought to be bicuspid but as my surgeon was doing his thing it was found to be anotomically correct however extremely calcified and worn out. This was in Sept. I tried to put it off until after Christmas but my surgery was in November. Three weeks before being accurately diagnosed I had been hiking around the hills and blazing trails while carrying my 3 yr. old daughter on my back. Timing is important. We had to rush through the typical pre-op preparations which was stressfull enough by itself. As for the breathing tube...when I realized I was still here I wanted that thing out of my throat the sooner the better. The first attempt to remove it was unsucessful, my mouth was very dry, a little moisture from an ice chip or swab? did the trick. It took me awhile to get back on my feet solidly but every one is different and you have the blessing of youth. A mechanical valve and coumadin is probably the best option. I didn't want to have a second surgery. Bless all who have had multiple surgeries. Once again Welcome.
 
Morning to All,
Thank you so much for the encouragement, advice and willingness to share. I am truly thankful for it all. I wish I had found this site a year ago, but am so glad I at least did. I know some of you weren't as lucky and didn't have this outlet till after surgeries... I will continue to look around, research, talk and share.
Marguerite53, thank you for the comments on the Metoprolol (generic for Toprol) and not stopping it because the palps have stopped. I do know I would have to wean off. :) Also, thanks for the idea of getting my Echo results/info. I love my dr., and feel I can talk to him and ask him questions. Sometimes however...I would just like to sit there and ask a billion questions and feel like he looks at me like ok...here is the worrier---the hypochondriac. My mom used to go with me to every appt. but the last couple it always seems like more of the same and I just have gone by myself.

I am now so anxious to have my Echo done and see what it shows. Besides the Echo---are there other ways they access the condition? At my previous cardio I used to do treadmill tests, (walking/running while being hooked up to an EKG type machine).

Thank you everyone!!
 
Hi Jess and a belated welcome!:)

Both our son and our grandson have a bav (I had mine replaced 4 years ago due to stenosis) and are being followed. I mention this because I consider your situation similar to what we might one day face.

Please remember that you are young and in good health, and that is a terrific predictor of how well you will do when you have the surgery. I was followed for several years with echos previous to surgery, and the only other test I had was a r/l heart catheterization. Hopefully periodic echos will be all you need to determine the state of stenosis.

Regarding your feelings of uneasiness, confusion, and being overwhelmed . . . we have all been in the same situation and understand completely what you're dealing with. We "get" it!:p

Once again, I'm glad you joined us!:)
 
Welcome to our family Jess. I am glad you found us. I came into the VR family in February of this year after finding out I needed to have surgery. I'm still waiting (it's next month) but the people on this forum will answer so many of your questions. I look forward to getting to know you.
 
Hi Jess and welcome to the Mad house, if it's advice, encouragement, shoulders to cry on or just somewhere to rant, you've come to the right place, you can even get a direct line to which ever is your chosen God through the prayers of the more religious members !
I'm really sorry to hear about your BAV diagnoses but you're amongst many folk in the same boat here all eager to help. Welcome aboard....
 
Hi Jess, and welcome to this incredible place. I was lucky enough to find VR almost the day I was diagnosed this past November. A shocker for someone like me that considers herself to be "young" and healthy... my teenage keeps telling me to grow up! lol!
I found strength and courage through everyone here, as well as a wealth of information... and these are the best shoulders in the world if you're looking for a place to just cry. I honestly don't know how I would have gone through everything without this group!
I'm 5 weeks post-op today... feeling better every day, and actually went out in public with my scar showing today! It's visible, but just barely... my surgeon was very concious of my vanity and did a marvelous job.
Everything you're feeling is normal... and you're doin a wonderful job of taking care of yourself. Your fears are expected, and although its easy to give reassurances from this side, you'll still have them. But there are enough of us here to let you know that you'll be okay, and you will get through it, and you will be stronger for it.
Best wishes with everything, and I'm so happy you found us!

jen
 
Welcome to VR. Glad you found us and decided to join. There's lots of information and support here. Your feelings and emotions are normal....we've all experienced them here. I had all the same questions about the surgery, recovery, the sternum, the breathing tube, etc....all I can say is that the OHS experience wasn't nearly as bad as I thought it would be. In fact, I was pleasantly surprised at how "not bad" it was. The pain meds work wonders, I had hardly any pain at all. When I woke up post-up I wasn't even sure I had even had the surgery yet. It felt like a split second from when they asked to count backwards and I started to doze off and when I awoke. Best wishes and good luck.
 
jlynne said:
I am now so anxious to have my Echo done and see what it shows. Besides the Echo---are there other ways they access the condition? At my previous cardio I used to do treadmill tests, (walking/running while being hooked up to an EKG type machine).
Click to expand...

There are many ways to get a good picture of the heart and how it is functioning.

First, should you ever begin to worry that you have an undiscovered aneurysm, remember that the presence on an aneurysm can be detected with a plain old EKG/ECG. That test won't give you fine details, but that is how many people's aneurysms were discovered. Since you have had many EKGs, and no one has mentioned an aneurysm, you're okay.

Next there is an echocardiogram, which is an ultrasound image of your heart. The technician puts his/her roller-ball thingy on many areas of your chest, abdomen and neck to get images of the heart from all angles. It takes about 45 minutes, and if you are in good shape and have no trouble lying on your left side, will not be uncomfortable.

There is also a transesophogealechocardiogram (TEE.) I may have spelled that wrong. For this test they put the camera INSIDE your esophagus. Do not ask for this to be done without sedation so that you can zip off to an appointment later in the day. Have yourself sedated and you will sleep through the whole thing. The doctor numbs your throat, then they give you the second bump of sedative, and while you are in groggy-land they put a tube down your throat, through which they can put a camera. I don't remember my test at all, although I did have a sore throat afterwards.

There are CAT scans and MRIs of the heart. These are done with contrast dye. (I have also had a CAT scan without dye.) I have had both of these tests, and they take lots of images before they inject the dye through an IV, and then they take more images.

There is also the angeogram. People here call it the "heart cath," short for cardiac catherization, because a catheter (long flexible tube) goes into your heart and then delivers dye into your heart so the doctors can have a look around. It seems that everyone has this close to surgery, although some people (me) have it further from surgery. This test is done in an operating room, and you will be sedated for it. Some people remember the test and some do not. I remember it, but I remember it as being about two minutes long, when in reality it takes way longer. Here is a great description of this test from the American Heart Association:

"This is a procedure to examine blood flow to the heart and test how well the heart is pumping. A doctor inserts a thin plastic tube (catheter) (KATH'eh-ter) into an artery or vein in the arm or leg. From there it can be advanced into the chambers of the heart or into the coronary arteries.

"This test can measure blood pressure within the heart and how much oxygen is in the blood. It's also used to get information about the pumping ability of the heart muscle. Catheters are also used to inject dye into the coronary arteries. This is called coronary angiography (an"je-OG'rah-fe) or coronary arteriography (ar-te"re-OG'rah-fe)."

This test takes most of the day because you have to lie still afterwards. There are different ways of doing this test that have different recovery times. I won't describe them here, but there are plenty of descriptions on VR.com.

So those are the major tests!
 
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