Sad and scared!

[lichelle]

Okay, silly as it is I have known this time was coming...just that I never ACTUALLY expected it to come! LOL I'm having my Ross Procedure done hopefully in Sept. I am terrified. I am finally having a will made out next week, even scarier. I just know they will be dragging me to the OR kicking and screaming. I don't think I have quite made it through all the stages of grief yet, and I seem to keep coming back to the ones I thought I was already through. I can't even describe how pissed (pardon me) I am that I had to be born with this. I am even more furious that my previous cardiologist, who I fired in May, was so negligent and irresponsible. He led me to believe that it would be YEARS before I needed surgery, like when I am an old lady. Then, long story short I knew that shortness of breath was nothing to mess around with and there you have it folks I got a second opinion and I am having surgery in Sept. Yay for me and my child I am grateful that there are still competent cardiologists out there, and that I have found one. I am also grateful that I was born 29 years ago and not 100 years ago because there is actually medication, surgery, and testing for all of this. I am also grateful that my ascending aorta is okay since there was a chance I had an aneurysm and would need it repaired as well. So I guess what my long, drawn out question to all of you is, when does the fear go away? When am i going to be my happy and relaxed self again? Any words of encouragement would go a long way!

 

[Karlynn]

Welcome! I'm glad you found us. You are not alone! It is a very scary thing, but since it sounds like a newer thing for you, you need to give yourself time to get used to the idea. Having a September surgery will help you do that, and seeing all the people here who have been there and done that and the support we have to offer, will also help.

Your experience with your first cardio is not all that unusual. Some doctors just have a hard time thinking of young adults having any issues with their hearts that would require them to do something about it before they are old. When my mitral valve prolapse was diagnosed, I was also told I would be an old lady before I MIGHT have to have something done. Then I had my 2nd child and started having all sorts of problems. My doctor at the time chose to believe I was making a mountain out of a mole hill, conjuring it all up in my head, rather than believe a 26 year old woman would be having heart issues.

The good side is that over 20 years later, almost 15 since my valve replacement, I have a great life, thanks to the care of good doctors.

While open heart surgery is a big deal, it's also and often done, highly perfected "deal" and I know you will do just fine.

Best wishes!

 

[BDMc]

Hey I Remember When...

Hey I Remember When...

Lichele, Welcome! I still remember how shocked and scared I was when I was told. I was 29 too. The good news is it's been almost 22 years since then! Find a good surgeon. Ask lots of questions. Hang out here, and we'll hold your virtual hand all the way to the OR! Brian

 

[DeWayne]

I don't know if I can offer much here but let me try.
47 years ago I had my first open heart surgery. I spent my 5th birthday in the hospital. Since then I have never led a normal life as most people would call it. I was never allowed to play in any competative sports and I loved baseball, but was not allowed to play it. In 1959 when I had my surgery the first time it was a very new thing. They did not want to operate on me till I was like 10 , but felt at 4 it was then or never.
I have a very large scare horizontally across my chest, probably 14 inches long or so. it has always been my battle scar.
I too am now facing surgery, but I don't really remember much about my first one, so yeah its scary. on the 27th of July I will have my bicuspid valve and a portion of my aorta replaced. I had to do the wills, among many other things I have done to prepare.
I am not angry, I am thankful that my body told me it was time to get it checked, I once told my wife I never expected to live past 40, now I am hoping for 80.
As I see it surgery today is so advanced from the first time I had it that everything should go well, I have no other problems or illnesses and expect that I will make it through this without problems. But the realist in me tells me there is that chance, but the chance that the worst can happen is 100% without it. Be thankful that medicine has made this possible, be thankful you are still here. Be confident in your surgeon, be confident in your ability to overcome anything and go on. It will make things a whole lot easier for your self and your peace of mind.
I tell myself if my mother, who is in pretty bad health can make it through a major heart attack, quadruple bypass and amputation of her leg then by gosh I an get through this with ease.
Just remember you are not the first person to go through this, many many others have done it before you and they made it possible for medicine to advance and make things a whole lot better today. Be thankful everyday for waking up, that is how I have lived my life for the last 47 years.

 

[Ozmercy]

Welcome Lichele

Welcome Lichele

Lichele,
Welcome to the site I am in a similar position as you waiting for surgery. I noticed that you are an RN and I am sure you are educated in the implications of what you have been told. Knowledge is power, but sometimes it can also be misleading. The problems you have are very treatable and the success of OHS in your situation is very good. So hang in there and keep learning. I may be jumping the gun a little bit here, but I was possibly going to have the Ross procedure (the surgeon brought it up as an alternative) but because of having a Bi-cuspid valve my cardiologist recommended not having it there are possible complications with sometimes under those conditions. I am new to all this stuff so you should get advice of this site. There are quite a few strings that have discussed the Ross procedure. I recommend using the search function on this site and put in "Ross procedure." There is a lot to read there.
Lastly I really understand where you are coming with all of the mixed emotions with your situation. In time you will adjust. One of the things that I have been trying to do is turn those emotions in a positive direction. We can't change what we have, we can only decide what to do with it. Everytime I begin to go downhill emotionally I turn to prayer or something positive to try and turn it around. I hope you can begin to see the positives in all of this, but until then know that there are many people who care about you.

Randy

 

[JohnnyV_46]

You are so lucky to have found the Board when you did. I'm sorry you have so long to wait to think about it tho. I had one day.None of my doctors had ever caught that I had a Bicuspid aortic valve or a heart murmur and no one caught the Aortic Aneurism that was ready to go until I started having chest pains. Statistics are definitely in your favor. Do plenty of research and find a surgeon your comfortable with. Just think, you could have an inoperable Brain Tumor....I'm betting there is a bulletin board full of people somewhere talking about their colostomy's.....When I get worried or feeling sorry for myself, I just take a look around and it doesn't take long to find someone in worse shape than I am. I mean that in a good way! I think its wise to prepare for the worst, pray and hope for the best. But think positive or the worrying will make you sicker than you are.

 

[Leah35]

Don't be Sad!

Don't be Sad!

Hi Lichelle!

First of all, welcome to this site. It is a wealth of information and support, as you will hopefully find out! I'm sorry to hear that you are mad about your situation. It is scary and emotional. I had my first surgery at 5 weeks, so I have lived my life with this "condition" as some like to call it. I have lived a very normal life. I married, had two wonderful kids, and played baseball my whole adult life. In a way, I consider myself lucky that I have a heart condition because I am closely monitored by my team. Some people never know they have heart problems, until the day they have an attack....and then it's too late. Like everyone on this site has said, technology has come so far and will only continue to get better! I go through phases of being scared....out of my mind scared.....for my kids more than myself. But it's not in my hands anymore and you just have to trust your doctors and yourself. What is that old saying.....Life is 1% what happens to you and 99% how you react to it?? Please try to keep a positive attitude, because it really helps! I am having AVR on July 21st and, as you said, am so scared, that I can't even bear it sometimes! My ascending aorta is a mess and will have to be repaired or replaced....So you're not alone and we're all here "to hold your virtual hand".....every step of the way. If you need to talk, we're all here for you. Take care of yourself!

 

[gijanet]

Welcome, Lichelle!

Welcome, Lichelle!

Glad you found us. This is the only place to vent where people truly know what you are going through. Yes, you are angry and scared right now. YOu have every right to be. I know that my Katie is going to be really pissed one of these days when she realizes what a raw deal she's been dealt. I can't wait until she turns six next year when she will finally be older than the number of heart surgeries she has had.

Give your emotions some time. The anger will eventually subside (although I have to confess that I sometimes still get angry and shake my fist at God and then the depression sets in). Your fears will be allayed somewhat after you have done some research and some venting, but not truly until after you have had your surgery and are on your way to recovery. Try and focus on the positive. You have a fixable condition - life threatening? yes, but fixable. Be grateful that you don't have cancer. My sister was diagnosed with cervical cancer on her 29th birthday. 90% curable in Stage I, right? She died one month after she turned thirty at MD Anderson, one of the best cancer hospitals in the world............God, I miss her! Anyway, try and focus on the positives (easy to say, I know) and not the negatives. Exert your energy on research and getting yourself prepared. If you are having problems dealing, don't hesitate to seek out professional help. One reason I mention this is because a common side effect of OHS is post-op depression. If you even think this may be a possibility, you might want to establish a relationship now with someone you trust and like.

Anyway, I am so sorry that you are having to deal with all of this, but you have found a great group here. Many hugs and please keep us posted. J.

 

[ALCapshaw2]

Welcome to our World Lichelle !

First, you need to know that Heart Surgery is a highly refined Art with extremely high success rates, especially when it is a first surgery and you are under age 60. Typical M&M rates are 1% death and 1% stroke when performed by an experienced surgeon (>200/yr) at a hospital that does a high volume of OHS.

For an RP, I would be looking at one of the top hospitals, especially one where the RP is considered one of their specialties. Look into the Cleveland Clinic, Mayo Clinic, Texas Heart Institute, and some of the NY / Boston hospitals.

The KEY is to find a Surgeon with LOTS of experience (and a good track record) in the procedure you desire. I second the motion to do a SEARCH for "Ross Procedure". When I did so, I came up with over 500 links! One in particular caught my eye, entitled "Ross Procedure - Pros and Cons". I believe the writer also had a Bicuspid Valve. You also need to know that Bicuspid valve patients frequently have a connective tissue disorder that needs to be addressed / eliminated as a potential risk factor.

Several of our members have had the Ross Procedure. "PapaHappyStar" did considerable research on the RP and ended up traveling from Chicago to New York to have his done. Check his profile and Search for his posts which I expect you will find to be very interesting. As a PHD candidate in Nuclear Physics, he is a pretty thorough researcher!

'AL Capshaw'

 

[Ross]

Hi Lichelle and welcome to the forums.

When does the fear go away? In all honesty, not until the day of surgery. I remember well my wife driving me to the hospital and dropping me off in front and told me to wait there until she parked the car. Well I told her that if I didn't go through those doors now, I wasn't going to at all. I would bolt and that would be that. Once your in there, for some odd reason, you come to peace with it all and it's no longer weighing on your soul like an elephant.

 

[hensylee]

I just finished reading the latest Evanovich book - somewhere in there Stephanie Plum was really, really, really scared and said "It's like being about to have heart surgery". We all know how you feel. We are letting someone else have our life for a little while, in our thoughts. There is something about what Ross said - when you walk through those doors and know you have 'arrived', you let down and accept the fact. (When they wrap you in those warmed sheets, you really become peaceful - it's kinda like your favorite person - or mom's- arms around you) Some get that feeling a day before. As you read on with us, you may find and accept some peace while you learn. It is an awesome journey, no doubt about it, but it is the journey to health - once you climb the mountain. Keep on reading and asking questions. Someone will have your answer and if not, this membership will search til the answer is found. Welcome to us.

 

[adamsmom]

Warning

Warning

This is Adam. I am 11 years old, and I had my Ross Procedure done on June14th. I was scared but they give you medicine to help you relax so you don't really care.I got through it just fine.

 

[Georgia]

Welcome, Lichelle!

I think that "knowing" that we should be grateful for all that medicine can do for us contributes to our anger and irritation about having the conidition at all. It's all well and good to accept it intellectually; another thing entirely to deal with it on an emotional level.

I've had cancer, with the whole cut, poison and burn routine. Believe me, the valve problem is emotionally and physically preferable to that. I guess what makes it so much easier is that when it's over it's over. With cancer, there's always that niggling little voice reminding you that there may be more unpleasantness on the horizon.

It sounds like you're doing pretty well - taking the steps you need to in order to be ready for September. Feel free to come here and vent & ask any questions you may have. And if anxiety seems to try to overwhelm you, don't hesitate to ask your doc for chemical help to get through the next couple of months. Your poor heart doesn't need the additional stress. I found my Xanax to be quite helpful in that respect.

 

[Cooker]

Hi Lichelle and welcome to the forums.

When does the fear go away? In all honesty, not until the day of surgery. I remember well my wife driving me to the hospital and dropping me off in front and told me to wait there until she parked the car. Well I told her that if I didn't go through those doors now, I wasn't going to at all. I would bolt and that would be that. Once your in there, for some odd reason, you come to peace with it all and it's no longer weighing on your soul like an elephant.

I agree with Ross 100%. I had a case of the nerves all the way! They did my cath on Monday (drugs ) Then to my room and surgery Tuesday (more drugs ) By the time they were rolling me out of my room I was Superman. All was well, went well and I'm well. You will be too.

Cooker

 

[temp69]

learn patience. The question "WHY ME" should be rephrased to "WHY NOT ME?"
Meaning, health stuff happens to nearly everyone, so be thankful that you have a condition that can be treated.

hope this helps. I, too, was angry at having a BAV and AA and needed a bypass as well. I thought, why me? Hell, I'm only 55!

Well, the answer is...stuff happens. Now, I've had the surgery and am doing better each day. The same will happen for you. So try not to think about why, just get through each hour, each day.

And smile as much as you can

 

[ClickTicker]

I had my aortic valve replaced in 1990. I don't recall being scared. I recall being fascinated by the whole thing and thinking it was a bout time. For me, though - it was all I knew. I was diagnosed in infancy and was able to wait till I was 18.

Don't be afraid of a third opinion either if you're really nervous. I had doctors that couldn't wait to slice me open. Fortunately we finally found one that managed my condition effectively so it could be put off as long as possible. If we followed some of our first doctors - I would've been facing my 3rd surgery at 18 rather than my 1st (and only so far).

I agree with the "Why NOT me" sentiment. I always felt that I was given this because I could handle it. It saved somebody else who maybe wasn't as comfortable in this area from having to experience the same thing.

It does get rather novel after a while. Quiet rooms when people ask you about your really loud watch (if you use an artificial valve). Or during tests in college when you know the person behind you is trying to figure out what that noise is and you just kind of laugh to yourself.

 

[denobobeno]

Lichelle,
It looks like you are doing a good job finding the things to be grateful for.. that works for me too. I have at my age (44) seen too many of my friends suffer from cancer. At least we know that we are going to be better than ever and feel great (once we get through the yucky part).
I have been through some pretty difficult things in my lifetime (as have many others on this site) and there is one thing that I have learned.. I'm ALWAYS stronger because of the trials. If you're a Christian then you know that our faith is perfected through trial. (James 1:12) Although I've been confused by God's will sometimes and have a few questions when I get to heaven! ...I know God's there to teach me something and make me stronger!! Look at how so many of these wonderful people have helped us already by giving advice, and relieving our minds of unknown things we're up against.
Hang in there and let go and let God! Our worrying will only cause more trouble for us.. it does no good. Easier said than done
Sorry if it sounded like a sermon....I just want to give you what helps me..
xxooDeana

 

[Guest]

When am i going to be my happy and relaxed self again?

This may seem a bit harsh, but the answer to this question, imho, is:

When you choose to be!

Yep, easier said than done ... I know ... because I've been there. A few years ago, I was very bitter/unhappy, etc. ... then, something snapped, and what people had been telling me (that being happy/relaxed is a CHOICE to be made) rang true....


As for the fear, Ross is right. In my case, I was relaxed/at peace on the way to the hospital the morning of my 3rd open heart surgery; I wasn't scared/nervous at all....



Cort, "Mr MC" / "Mr Road Trip", 32swm/pig valve/pacemaker
MC:family.IL.guide.future = http://www.chevyasylum.com/cort/
chdQB = http://www.chevyasylum.com/cort/quilt.html
"Walking back into my life" ... Kathy Mattea ... 'Walking Away A Winner'

 

[OldManEmu]

Concern

Concern

Unlike most people on this site I never got to "book" my surgery. All I was told was that I would get a call on the Friday for admittance on the following Tuesday and surgery on the Wednesday. It took 3 months from when I was placed on the waiting list until I got the call and the first time it was a false start. Once I got the real surgery scheduled I was quite relaxed, I know some may find this strange but my outlook was I will be on the way to recovery by this time next week or dead. I didn't want to contemplate a stoke this was the only outcome I was concerned about. Those 3 months until I got the call Fridays were quite stressful, will I get the call or not.

 

[Liz]

Hey Lichelle -
When you get through this you will be so strong! Who knows why life brings these challenges, but you can handle whatever life brings your way. Your voice in your post is very strong and vibrant and I'm sure you must be too.

As for when the fear goes away, for me it was the day before surgery. I actually felt excitement, it felt like it was radiating out from my heart. My heart was excited that it was going to get fixed and wouldn't have to work so hard anymore. I remember the appointment when my cardiologist told me that we were going to need to 'do the valve' sooner rather than later (like you, I had at first been told it might be years). He said that my problem was getting worse, and that my valve was 'calling out for attention.' Your heart is calling for attention and you are listening.

Enjoy the months before your surgery as much as you can. It's an opportunity to really experience just how precious everything and everyone in your life is.

Good-luck to you, and stay in touch.

Liz