Anxious but hopeful after the "announcement"

[DavidC]

This is my first time posting to any kind of message board. (I guess it takes a life-altering experience for me) I'm 35 and a dad of twin 4 year olds. It's embarassing to go to the heart doc when everyone else there is 60+...

I've been checking in every 6 months and suddenly my doc says that my aorta is expanding and my valve leak is worse. So I'm looking at an Aorta repair and a valve replacement in 3 weeks or so.

My insurance wouldn't pay for the surgery at the hospital my cardiologist wants me to go to and so I'm freaking out trying to find a good surgeon in the Salt Lake City area. STRESS!

I guess I have a lot of big decisions ahead and hope that I can maintain the status quo until the appointed time and not have to have an emergency surgery before. Any tips for dealing with the anxiety or the experience in general?

thanks,
DavidC

 

[tommy]

David,

Welcome to VR.com! I'm so glad you found us. And thanks for sharing your thoughts and concerns.

First, it's okay to be afraid, to be freaked out by the whole deal. Try to learn as much as you can, make the best decision, and keep moving.

Unless you are independently wealthy, you will need "roll" with the insurance company. I'm sure that there are lots of good surgeons in SLC and likely several great ones.

About being a young heart patient, I get a kick out of asking the cardio questions he's never had before. Questions about roller coasters, running, hiking.

Valve surgery has great prognosis for high quality of life afterwards. You have a lot to look forward to. In the meantime, hang in there.

 

[Creed3]

Hi David!

Hi David!

Welcome to this wonderful site. You will definitely find lots of support here.
I can relate to how you are feeling. I was 33 when they found my problem, 34 when I had surgery. I am now over two years post-op. I had my aortic valve replaced with a St. Jude Mechanical and I also had my aorta repaired with dacron mesh. I had a dissection/anuerysm.
Feel free to ask anything you like. We are always here to help.

Take Care!
Gail

 

[Ross]

Hi David and welcome aboard

Look at the bright side, at least your aorta hasn't ruptured and your still with us. I wasn't nearly that lucky. When I was 33, mine ruptured without warning, so I didn't have time to worry about anything other then the Doctor telling me I had about a 5% chance of survival with surgery and me telling him 5% was better then 0% of they did nothing! Children aren't even spared these problems, so don't let the age thing get you down.

The sad fact is, your going to stress right up until just before surgery. Don't ask why, none of us have figured it out, but a sense of calm hits just before. You wouldn't be human if you didn't. Doesn't matter how many times you've been through it either, you still get those same anxious feelings.

Best thing to do is find a surgeon and hospital, then kick back and enjoy life as much as possible until it's time. Treat yourself and your loved ones like royalty and enjoy each other.

I'm sure you have thousands of questions running through your mind, so read any thread that sounds like it may contain something your thinking or use the search feature to find specifics by term. I don't think there is anything that hasn't been covered here at one time or another.

If you still need more info, just post away, you'll get the answers without sugarcoating and straight from the hip.

 

[Karlynn]

Welcome David! I WAS another young one having valve surgery. I was 32. That was 13 years ago. Just wanted to let you know that life is good after valve surgery! My kids were young as well, 4 & 6. They came through the event just fine. We just did a lot of reassuring.

Did your doctor make recommendations for a surgeon covered by your insurance? I would hope he would help you locate a few, just so you aren't wasting time ferreting one out on your own.

Keep posting here. You will never lose all of your fear, but we may be able to help you not to freak out. We are also good sponges, able to soak up the stress and fear that your family doesn't quite understand. We have many spouses that post here to, so encourage your wife to join us if she feels a need to unburden and relax.

 

[Granbonny]

Hi David

Hi David

I believe you are our first member from Utah.....but we have many members next door to you in Co......Perhaps they could recommend a hospital in Co...for you.. You will do fine..just takes a while to recoup at home..then after several months..should be back to your old self... Depending on the type of work you do..should be back there after 6 weeks...Welcome again. Bonnie

 

[Ross]

I believe you are our first member from Utah.....but we have many members next door to you in Co......Perhaps they could recommend a hospital in Co...for you.. You will do fine..just takes a while to recoup at home..then after several months..should be back to your old self... Depending on the type of work you do..should be back there after 6 weeks...Welcome again. Bonnie

JenniferO is from Utah, but she had her valve done at the Cleveland Clinic.

 

[momshell7]

Welcome David!

Welcome David!

First let me say you have come to the BEST site for support!!

My husband is 37 and had his aortic valve replace on Oct. 18 of this year. It was his second surgery. He had his valve repaired at age 16. He was unaware he had a problem again with the valve until last winter when he got strep throat.

I understand how you feel about being so young and having this problem. I think he heard some reference to his age EVERY time he went in for a test or the first time to see a doctor. Everyone says "You're too young to be here." He got so tired of hearing it. Yes, it would be nice if nothing like this ever happened until you are older but that isn't always the way it works.

We have two boys ages 4 and 8 and they actually did very well dealing with the whole situation. We talked sparingly about the details, but told them enough to understand that Dad had to go to hospital to have his heart fixed.

My husband had the stentless porcine valve. His doctor highly recommended it for him. His cardio referred to the valve at the "Mercedes of valves, not the Cadillac, but the Mercedes." So after doing our own research on the valves, he went with the stentless porcine. The valve you choose, of course, is a decision you have to make for yourself to fit your situation.

Another thing I highly recommend checking into is whether or not your hospital provides a device called a heart hugger for after surgery. It is like a harness that you wear all the time the first few weeks. It has two handles in the middle and you hold the handles closed when you cough, sneeze, move etc. You can purchase them online if your hospital does not provide them. They are well worth the money. There is a thread under pre surgery I believe that discusses this. There is also a link for the company website. My husband had one and he said it was a God-send. It made things so much easier than they were after his first surgery, and he is now 21 years older!!

Please feel free to post any and all questions, fears etc. Everyone here is great!! There is also a place for significant others to post their fears and questions. This site really helped me out with all of my fears.

My husbands id is twoboysdad if you want to look him up and ask him any questions.

WELCOME!!

Michelle

 

[momshell7]

Welcome David!

I just want to echo what my wife posted earlier. Not much else to say! When i was 16 and had my first surgery, it was really wierd being the youngest person around and I still had to hear it when i just had it done again at age 37.

Thing is, I feel GREAT and the fear was for not! Hang in there and feel free to post, email or PM to get your questions answered.

Jeff

 

[twoboysdad]

uh oh

uh oh

David,

Jeff here again, sorry i didnt realize my wife didnt log off her user name. the second Momshell message was from me.

Good luck!

We are here to help

 

[Sethgold]

I go in on Tuesday...

I go in on Tuesday...

Hello I am 36 and it will be my second OHS, the first was a fix when i was 3, now it is a valve replacement. I bought the heart hugger and will report on its usefullness, i believe in the product and it looks neat. I hope it works. Anyway Anxeity is more like nervousness, Anxiety seems insurmountable. How about calling it nervousness. Ofcourse you are nervous, we all are, i go in tomorrow for the cath and Tuesday they go in. I was 3 in 1971 when i had my first, one of the youngest ever. I have had a very active and healthy lifestyle since then, and there is no reason why i wont after this one. Trust everyone that the build up is worse then the surgery. I too have no external symptoms, i am fully active with no restrictions, however the leakage has caused my RV to become enlarged overtime. Anyway try and relax and dont be afraid it is eaiser said then done. Always try and think POSITIVE, as corny as it may sound it seems that attitude is the biggest factor in recovery. Dont worry about all the other stuff ,Tubes etc, the are a must have, so dont fight them or stress on them. Try not to drive yourself NUTS, like i have been, however i am trying to stay calm and relexaed. Also this site is awesome. Good luck and read this site often and get involved it will make you feel better.
Seth

 

[MomOfThree]

Hi and Welcome!

Hi and Welcome!

Hi David and welcome!

It is scary when you find out that the surgery you thought was way down the line is now imminent. I think everyone felt scared at one point or another. I try to think about all the people that have been there before us and now are leading active lives. Try to think of all the positives after the surgery (I know it's kind of hard). A positive attitude I feel helps my body sort of relax.

I'm 43, and while older than you, have 3 young children, ages 8, 6 and 4. My surgery is scheduled for Friday.

So take a bit of time, adjust, read some things on this site (it should make you feel more comfortable). And know that we're all here with you, pulling for you.

I'm glad you found us.
Martha

 

[MitralMan]

"My advice: start drinking heavily" - Bluto, from ANIMAL HOUSE

"My advice: start drinking heavily" - Bluto, from ANIMAL HOUSE

JUST KIDDING!

I'm 47 and going through this for the first time. This is a great site. I would offer only this observation:

I have gone from denying this is a big deal, to FREAKING OUT about how big a deal this is, to becoming a bit de-sensitized to it again (it's something that has to be done, we caught it in time, the best guys literally do HUNDREDS of these procedures a YEAR, thank WHATEVER/WHOEVER you believe in that you're going through this NOW and not 50 years ago, etc.).

Even though I've only been on this board a week or two, I'm stunned by how informative and supportive everyone is!

This is my first time posting to any kind of message board. (I guess it takes a life-altering experience for me) I'm 35 and a dad of twin 4 year olds. It's embarassing to go to the heart doc when everyone else there is 60+...

I've been checking in every 6 months and suddenly my doc says that my aorta is expanding and my valve leak is worse. So I'm looking at an Aorta repair and a valve replacement in 3 weeks or so.

My insurance wouldn't pay for the surgery at the hospital my cardiologist wants me to go to and so I'm freaking out trying to find a good surgeon in the Salt Lake City area. STRESS!

I guess I have a lot of big decisions ahead and hope that I can maintain the status quo until the appointed time and not have to have an emergency surgery before. Any tips for dealing with the anxiety or the experience in general?

thanks,
DavidC

 

[Marguerite53]

Welcome!

Welcome!

Dear David,

Welcome! I would echo everyone's comments at this point. Especially the last one from Mitral Man that I, too, have been stunned by how informative and supportive everyone is. The best part of that is how attentive everyone is!! You post, bingo, most times there's an answer or comment or help or support within the hour. So KEEP POSTING. It really helps

Me, I'm in the "waiting room" and have been since Sept. 2003. I would be flat out insane had it not been for this wonderful group. I'm not saying you are lucky to be going in in 3 weeks, but frankly, waiting so long is no fun! It's just that your ups and downs will be so much more intense (than mine) since you only have 3 weeks to have them in!

Ask anything. Please feel free.

Good luck!

Marguerite