kizzy

[kizzy]

Hi, I have just been told that I need to have my aortic valve replaced. I am terrified!!! I am 53 yr old woman who never had a heart mermur until I went through a long hard natural childbirth 25 yrs ago. She was worth it! I've been told the past few yrs that it was getting louder and last week was sent to a valve specialist who said it has to be replaced. I go in tues. for a cardiac cath. I have never even been in the hospital since my baby! Now I need to try and get myself together and think about what I should choose for a valve and hope and pray it is not up to my insurance co.
Pam

 

[Ross]

Hello Kizzy and welcome to the forums

First off, take a big deep breath and relax. We have all been there and done that, some of us more then once now. We were all terrified, so what you feel is completely normal.The procedure itself is so highly refined these days, that it's not such a big deal. Yes, there is a small risk of death, but it's ever so small that it's not worth mentioning. Take into the consideration of your age and whether you think you'll be able to endure yet another surgery in say 20 years when choosing your valve. Both tissue and mechanical have there good points and draw backs. We can get into that a little more later.

Best thing to do is read every thread that you think will hold information that you want to know about and use the search feature to find things. If you question can't be answered that way, just ask. We are more then willing to help you all the way through surgery.

Again, Welcome

 

[BionicRedneck]

The best kind of assurance that you can have is knowledge. Try and go to the Dr. and not be surprised by what he might tell you. Astonish him by answering his questions before he asks them.

The other best advice I can give is make sure that your Dr. or surgeon has positive experience with this procedure. Where I am from, Lufkin Tx, I dont think I would let my dog have his aortic valve replaced by one of the "specialists" here. They have lagged behind the times and dont have the freuency of surgery to make one feel safe. Most Dr. dont take offense to having someone who is a real specialist do the surgery.

Make good thought through choices and decisions and you have nothing to worry about. You have options, check into them and work with your Dr to find the one that is best for you.

From what I've read and my experience, some of us didnt have a choice really. It was critical that it happen ASAP. Bout the only choice I would have liked to have had would been when. I barely had a week to register my problem, cope with it and consult God before I had my operation.

 

[hensylee]

Hey, Kizzy - welcome to VR. We are here just for you and we are glad to have you amongst us.

This site will have the answers to every question you can ask. We will support you from this day til as long as you want us.

Course you are scared. Goodness me, who wouldn't be after being given such news. Nearly every single one of us have been in those shoes you are wearing. And same as you, all learned through the help of members here.

So you just hang in, my dear, and ask away - any time of day or night. We are right here. Blessins......

 

[tommy]

Kizzy,

Glad you found us. You are not alone. Being scared is part of the process. Just keep going. Read all you can, learn all you can, then make the best decisons based on the information available.

Keep posting your questions here and to the doctors. Network your friends and healthcare pros in your area about surgeons and hospitals.

Wishing you the best of outcomes.

 

[Karlynn]

Welcome Kizzy! You have found the best support ever for what you are going through. Read, ask questions and vent a little too, if you feel like. We all know what you are going through in a way some of your family and friends may not. We have walked the road you are walking. You are not alone.

 

[Phyllis]

Dear Kizzy,
The best advice we can give you is take the time to choose your surgeon and your hospital, empower yourself with all the knowledge you can and with that knowledge will come serenity. One of the best places to start is right here and as you come to understand the process better, you will have all the right questions for the cardiologist and the surgeon. Welcome to the forum!

 

[Nancy]

Hi Kizzy-

You've got lots of friends here who understand about this kind of thing. My husband has had three valve surgeries and two lung surgeries. He's had terrific surgeons for every one of them, and he stayed local for all but the first one. We are blessed with fantastic thoracic surgeons.

These guys really know what they're doing and they've seen just about everything in your heart that needs fixing. It's routine for them, although not for the one about to have surgery.

You will have the best care the hospital can give, your pain will be well managed, and guess what?? Your heart can be fixed up. That is the beauty of this surgery. Lots of other medical problems cannot be fixed, but this one can.

You'll be surprised to know that you will typically be in the hospital only from 4-7 days. Then you'll be home. The first couple of weeks you'll need someone to help you, and at 6-8 weeks, you'll be feeling pretty well. Some even go back to work at that point, and some even sooner. The final healing takes about a year, but that is just putting the fine point on your recovery, after 6-8 weeks, it slows down but steadily improves.

You've had this problem for a long while, and probably don't even know how it feels to be more normal, since your symptoms most likely have developed slowly over the years.

But improvement is on the way.

You can look at it as the birthday for your new and improved heart.

 

[KathyH]

Hi Pam, welcome to this great site. I also found out I had a murmur at my post partum check of my second child. Never thought much about it until about 18 years later when my Dr started doing echo's. It is scarey, but learning all you can learn about your condition will help you make a good choice.
Kathy H

 

[geebee]

Kizzy,

Welcome.

Being scared is part of what prompts some folks to seek as much information as possible so scared is a good thing from that end.

Yes, OHS can be scary, it does hurt and it does require time for recovery. However, these days, OHS carries very little risk.

In addition, you have come to the best place on earth to get information, guidance, caring and many hands to lead you through this. The minute you register, you become a member of our family. We will worry about you, answer your questions and cry with you when you need to cry.

Welcome and stay with us - you will be fine.

 

[kizzy]

Thank you all!!

Thank you all!!

What a lovely group of people I have found!! Thank you all for the amazing responses!!
Pam ( kizzy is my new cat) a calico with a k on her nose!
I live in mid-coast Maine. I was born in Portland and I have always heard that the Maine Medical Center is one of the best heart hospitals in the country, but now I want to make sure. Is there a place I can check how a hospital is rated? How will I ever decide if I should go to the U of Maryland hospital or mayo clinic or brigham & womans in Boston or whatever!!???
I go for a cardiac cath on tues. and I am terrified of even having that done. My nerves are frayed, 6 weeks ago I had a lump removed from my breast and thank God it was benigne! I've been going along saying how blessed I am then this valve thing. Just goes to show that yearly check ups are very important. Sorry I'm babbeling on..
Thank you so much

 

[geebee]

Kizzy,

I have always found caths to be very interesting. You can ask your cardio to position a monitor so you can watch it if you want to.

The only thing you feel during a cath is pressure not pain. The dye is not pleasant but knowing the warmth sensation is normal makes it okay also. It will also make you feel like you have to urinate and/or are actually doing so. That is only a sensation not actually happening. Keep these things in mind and you may actually find the cath fascinating.

Best of luck. I am sure others will come back in with ways to get hospital info but I have no sources for that.

 

[BionicRedneck]

She could handle her heart cath the way that I did. everytime the Dr. would start to stick the needle in my femoral artery I kicked him. Landed 5 good ones on his shoulder, neck, and a rib or 2l. they had to put me completely under.

Well if you are considering traveling you can make the trip to Houston and have Debakeys team at the Methodist do it. Thats who did mine. Michael J Reardon is the Lead cariac Surgeon and head of the Medical School Department. He has also done a couple of surgeries that had never been done nor done with success until he did 3 of them.

I am sure any major institution is conna have top knotch surgeons that do the surgeries like we have had blindfolded using only their thumbs. Dont go in there blindly, check them out and make sure but I am sure they will be overly qualified.

 

[KathyH]

Here is a site you can search ratings of hospitals in your area.
http://www.healthgrades.com/
Kathy H

 

[catwoman]

Pam:

I love Maine! Went there quite frequently while my older niece was at Boston University.

Hi, I have just been told that I need to have my aortic valve replaced. I am terrified!!! I am 53 yr old woman who never had a heart mermur until I went through a long hard natural childbirth 25 yrs ago. She was worth it! Pam

A childhood friend, who is 54, had triple bypass surgery 4 weeks ago after a heart attack. When the cardio started the heart cath, he asked her if she'd had a heart cath before. She answered, "I've only been in a hospital twice in my life and each time I took home a beautiful baby girl. I hope I don't take one home this time." I got a chuckle out of that.

I don't believe that insurance companies dictate what type of valve you'll get. To save money, make sure your surgeon, cardiologist and hospital are in network; if money isn't an object, you can go outside network. Most hospital plans have a number of quality hospitals and doctors in network, so that shouldn't be a problem. I panicked when my insurance company said that the anesthesiologist is employed by the hospital and may or may not be in network. I checked with the hospital's website, found the anesthesiologists there, and all were in network for me.

Read up on advantages and disadvantages of tissue, mechanical and homograft valves so you can make a decision that's best for you.

 

[bvdr]

Welcome! I remember well how I felt when I was told I needed a valve replacement. I was hoping for news that a valvoplasty would be in order but I wasn't a good candidate for it. In response to the specialist telling me that I wasn't a candidate I asked, "Then what should I do now?" His reply was to get the valve replaced. I knew it was looming somewhere in the future but it still landed in the present with such a thud. Believe it or not, Lord willing, you will adjust to the idea and then be thankful when it is behind you.

In the meantime, we are here and are very glad you have happened upon this very diverse on-line family. You are among those who do understand the things you are now facing.

 

[Marguerite53]

Hello!

Hello!

Welcome, Pam.

We are somewhat similar, bad aortic valves, early 50's, detected in young adulthood. I have 3 children, 23,20 and 17. None were difficult deliveries (I'm a wuss and went for the epidural) but my daughter (the 3rd) was a month late and ended up at 10# 4oz and was 24" long with a 15" head!!. (she is now a 5'10" long legged, size 4, athletic beauty). She was so large that the delivery nurse walked down the hall to get a different scale figuring the one she was using was broken! I have never been told that my pregnancies were the cause of my valve going bad early. Never. I think in some cases, perhaps, these things occur if the valve is pretty bad going into the pregnancy. I just would hesitate to believe that your bundle of joy had that much to do with your condition now. I welcome discussion on that one.

Be sure to check the list of resources on the forum page. You'll find more answers than you can imagine! This community is wonderful and I'm so glad that you've found us. That will lead to more questions. Start as many new threads as you feel like!!

I'm a very impatient client in the Waiting Room with no particular idea of when I will have my replacemnt surgery. It is very frustrating here! I will be watching your progress and cheering you on every step of the way -- from Portland, Oregon to Portland, Maine.

Good luck and hang in there!

Marguerite

 

[kizzy]

In network???

In network???

What is in network? I haven't read anything about human valves being used? Is it possible?
Kizzy

Pam:

I love Maine! Went there quite frequently while my older niece was at Boston University.



A childhood friend, who is 54, had triple bypass surgery 4 weeks ago after a heart attack. When the cardio started the heart cath, he asked her if she'd had a heart cath before. She answered, "I've only been in a hospital twice in my life and each time I took home a beautiful baby girl. I hope I don't take one home this time." I got a chuckle out of that.

I don't believe that insurance companies dictate what type of valve you'll get. To save money, make sure your surgeon, cardiologist and hospital are in network; if money isn't an object, you can go outside network. Most hospital plans have a number of quality hospitals and doctors in network, so that shouldn't be a problem. I panicked when my insurance company said that the anesthesiologist is employed by the hospital and may or may not be in network. I checked with the hospital's website, found the anesthesiologists there, and all were in network for me.

Read up on advantages and disadvantages of tissue, mechanical and homograft valves so you can make a decision that's best for you.

 

[tobagotwo]

Welcome to the club, Kizzy.

Human tissue valves, donated from cadavers, are called homografts. They were probably more popular a few years ago than they are now, due to advances in other technologies, including both mechanical and animal tissue (xenograft) valves. Other tissue valves and tissue-comprised valves, easier to obtain and work with, are now in the ballpark with primary aortic homografts for usefule service life for most uses.

Most often, you hear of them in association with OHS in young children, or with the Ross Procedure these days, which usually uses a human pulmonary valve replacement. In the Ross Procedure, your own pulmonary valve is placed in the aortic position, then your now-missing pulmonary valve is replaced with a homograft. The pulmonary valve is a much lower pressure situation, so the replacement can last much longer in that position, and the recipient can (potentially) avoid both anticoagulation and further operations for life.

Best wishes,

 

[charlie b]

Hi Kizzy

Hi Kizzy

Last week at this time (23 March) they were wheeling me back from surgery to ICU. I am a 56 yr old male, in pretty good health. Since everything is very fresh on my mind, I would like to tell you a few things about my experience. A) this site was my best source of help and information about OHS, these folks know their stuff. B) As I was informed by many in this group, the whole process is not nearly as bad as I was thinking it would be. C) Knowledge is your friend, and through this site you can get a world of it. D) Find a doctor you trust, place him and yourself in the Hands of God, and realize that all will go well. E) In advance of the "day" try to get some relaxation, a few stressless days seemed to help smooth the path for me. My recovery has been unbelievable, 36 hrs of pain meds, home in 4 days, today my wife and I walked for about 30 mins. (slower pace than usual but it felt great). My color is back, my appetite is back, I have much more flexibiliy than I imagined, I feel somewhat sore but- and this is a big but- the peace of mind I now have is wonderful. May GOD BLESS you, keep asking for adivce and information from this group- and hang in there. charlie b