Meeting with Surgeon this Friday...

[Hollyett]

Hi everyone. I'm 22 and I was diagnosed with a Bicuspid Aortic valve Insufficiency Heart Valve disease this past November. Iv already done the TEE and Cath (both might I add...were not that fun)and now I'm going to be meeting with the surgeon this Friday. Id have to say..even though Iv known about this for a few months now...it's now starting to become all to real to me. And I know that when we decide on a date..theres no turning back.

I can't tell you how nervous I am...and how much I don't want to go through with this. I have been reading stories on this site for a few weeks now..and it has helped a little. It's really nice to find a place where there are other people who have been and are going through the same thing. And to know that other people have survived this. Up until this point I think Iv been pretty strong about all of this..but like I said, the reality of it all is really starting to kick in.
So, I just wanted to introduce myself and give the backround on me. I'm sure I will posting a lot more now..and asking all sorts of silly questions.

 

[Phyllis]

Welcome and ask away- there's lots of support and good answers here and we wish you the best with your surgeon appt.

 

[Georgia]

Welcome - there aren't any silly questions (well, maybe there are silly questions but not about valve problems ). Where will you have surgery? There are a lot of Chicago-area people here; and we're having a Chicago get-together in February if you're interested in meeting us. btw - we're not weird, just a lot of fun!

 

[ArleneT]

Hi Holly, I can't offer any advice, because I am in your exact same situation ... scared to death. The one thing I can say though is that this is a wonderful group of very helpful people and they've already calmed my fears a tad just by giving me so much information and answering some questions I had. In my case, I need all the information I can get. For some reason that seems to help.

I had the TEE and Cath also and would agree that they weren't much fun, especially the cath since it took them three painful attempts to get an IV started.

I'm sure that someone with a lot better perspective on this will be along soon to offer some tips on how to deal with the nervousness. Think I will tag along and read their answers also. I need all the help I can get!

Ask lots of questions if you think that might help you. They all seem so patient and understanding.

Arlene

 

[Karlynn]

Welcome! So glad you found us! I live in the northwest suburbs, and Georgia is right, there are quite a few Chicagoans here.

I had mitral valve prolapse that was diagnosed at 22. I didn't have surgery until I was 32, but that was over 14 years ago and I've lead a very full life. What you face is a scary situation, but it is one that many of us have been through successfully.

There will be others along who know much more than I about your particular situation.

Since we have members from all over the world, there's always someone around day and night if you need to feel supported by those who have "been there, done that".

 

[Marguerite53]

Welcome to this wonderful community. As Georgia said, there are no silly questions. As a matter of fact, so many times, other people are helped by things they hadn't thought to ask yet. So please, ask away!!

Read as much as you can here. So much of it will be helpful to you. Especially to ask informed questions of your medical professionals. And to know some of the tried and true ways to be prepared for surgery.

I have not yet had my AVR. Soon, though. I have not had a cath or a TEE and am not sure I'm looking forward to them! I do have very termpermental veins, though. Historically very difficult to get an IV going. I learned a secret when I asked a tech what my problem was. She told me to drink plenty of water a day prior to the IV. I have done that. Often you have to be NPO 8 or 12 hours, but the day before, just drink and drink and drink water. It has worked every time. I do not have problems anymore. They can also put a warm pack on your hand or wrist for a while to relax things just before. Try it. It works!!

Good luck and keep posting!

Marguerite

 

[kingpeta]

Welcome to the site. Yes, it is very scarry and all of us know how you feel. I think it's important to remember that this valve surgery stuff is a major surgery but thankfully it has become routine. I am amazed at how many valve replacement and OHS patients were in the hospital the same time as me. Where do they all come from?! Just try to get comfortable with your surgeon - ask lots of specific questions about his/her experience and success rates. You can't have too much information. If you can, take a vacation before your surgery date to get your mind off it for a while. Try to keep a positive attitude all through it. Remember that you WILL be OK and come through just fine! Ask any questions you want here - chances are someone has gone through it and can answer you. Hang in there!

 

[Hollyett]

Thank you all for the warm welcome and kind words. I promise to keep you updated. I'll let you all know what the surgeon says on Friday.

All I know so far is that they are going to replace my valve, and may do something else do to the fact my heart has already begun to enlarge. I'm going to have the surgery at Rush University - downtown. The surgeon's name is Dr. Marshall Goldin. I know that they want to replace it with a tissue valve, due to the fact that I'm still of child bearing age, and I do want children. (I just got engaged over the summer). And if we went with a mechanical valve, I would have to be on Coumadin for the rest of my life..and they think I'm to young for that, and ofcoarse..I would not be able to have kids while on that medication. So, with having a tissue valve put in..I know that one day it will need to be replaced again..but at least I could live somewhat of a normal life..with family and kids for 10-20 years....right?

Again, thank you all for your support and I will update you as soon as I meet
with the surgeon.

Take care!

 

[Ross]

It is possible to have children while on Coumadin, but it's an iffy situation that I don't think I'd recommend to anyone. Yes you should have a normal or even better life with the tissue. Just be sure to fit those children in soon so that opportunity isn't snatched away from you.

 

[paulk]

All I know so far is that they are going to replace my valve, and may do something else do to the fact my heart has already begun to enlarge. I'm going to have the surgery at Rush University - downtown. The surgeon's name is Dr. Marshall Goldin. I know that they want to replace it with a tissue valve, due to the fact that I'm still of child bearing age, and I do want children. (I just got engaged over the summer). And if we went with a mechanical valve, I would have to be on Coumadin for the rest of my life..and they think I'm to young for that, and ofcoarse..I would not be able to have kids while on that medication. So, with having a tissue valve put in..I know that one day it will need to be replaced again..but at least I could live somewhat of a normal life..with family and kids for 10-20 years....right?

Congratulations on your engagement, it helps big time to have a significant other with you during this time. You'll absolutely be able to live a normal life. Of course, some of my friends that don't have kids seem to think my life isn't all that normal . If you want to have kids, have them, you'll never regret it. I have an 8 and 11 yr old, and the only thing I might have done different is to start a family just a bit sooner.

You will absolutely be able to live a normal life!

-Paul