New to boards

[ILoVeNY25]

Hello everyone,

My name is Nicole, I'm new to the boards and I wanted to say hello. I'm 19 yrs old and I'm on my way to Class IV congestive heart failure. I saw a surgeon on Thursday at NY Presbyterian, who suggests I should replace my aortic and mitral valve and have my tricuspid repaired. I am leaning towards mechanical valves even though biological ones are usually suited better for a young woman. I plan on having surgery in the end of May, and wanted to know a little bit more on what to expect from a patients point of view, I would appreciate any input or words of encouragement. Thank you.

-Nicole, 19
Queens, NY

 

[hensylee]

Goodness, Nicole, you are such a little one for such surgery. I am so sorry to hear it. You have certainly come to the right place to learn the things you want to know. I had bypass, not valve replacement, but the site is for valve replacement recipients and they will be here in droves pretty soon - before the day is out and you will be able to get so much information to help you along. The family here is so supportive and you will find much help. Welcome to our home. God bless

 

[mainframe]

Hi Nicole,

Welcome to the site. Everyone makes a different decision on valve choice, its a very indivual choice and I cant address mitral valve as all my attention went to my aortic valve, which is what I had replaced 8 days ago.

I can assure you the experience up to this point has been less of a big deal than I thought it would be. Everyone at the hospital wanted to make sure I was comfortable and in no pain or close to it, and after 4 days I was able to go home, back to some normallacy.

Good luck with whats to come, and the wealth of information here I hope will be as comforting for you as it has been for me.

Chris

 

[sylgeren]

Good to have you here

Good to have you here

Hi Nicole. When I first found out that I needed my aortic valve replaced, I got panic attacks. I came onto this web site, and fell into a book load of information, plus all the nicest people you can think of. Any questions or support you will need is right here. Before my surgery I knew a lot already, and was less frieghtned about it. I also knew all the right questions to ask the doctors.

Your pretty young and that's not a bad thing. It will all be OK. I also work as a Dental Assistant here in California. WE have that in common already. So any thing you need just ask. I have asked some stupid questions and everything gets answered, and with a lot of love. Keep in touch in this web site, so we know what's going on with you. Syl

 

[Johnny Stephens]

Welcome, Nicole

Welcome, Nicole

Nicole, you've found what I believe to be the best resource out there on this subject. I'm getting set up to have a mechanical aortic valve placed on April 16, so I can understand your trepidation.

Look through the threads, there many here who have had mulitiple-valve replacements and / or repairs.

Spend time here, you will find it comforting.

-- Johnny

 

[Ron K]

Welcome!

Welcome!

Hi Nicole,

Welcome to a great site for information and support. You'll never be with a more understanding, caring group of people.

There are a lot of choices for valve replacement, but not every one is right for you. However, there are plenty that will do the job perfectly well, but with different trade-offs. Work closely with your surgeon to see which type he recommends. Ask about the alternatives and why he feels the way he does.

The big advantage of artificial valves is that they last a lot longer on average. Since you are very young, I don't think you want to go through this type of surgery every 15 years or so.

The trade-off might be that you have to be on blood thinners the rest of your life and make some modifications in your diet, watch the over the counter drugs you take, etc. Also, you will have to have your blood tests regularly to make sure you stay within a safe range.

The surgery isn't too bad at all. You can handle it okay, especially being so young. You'll recover quickly, I'm sure.

Mainframe -- this is the first post I've seen you mention how you viewed the surgery. "less of a big deal than I thought it would be." Does that mean that Joy and me were right (along with a couple dozen others who told you not to worry too much about it.) I remember you telling Joy that you were going to hold her to it.

Sorry for the tangent, Nicole. I'm sure you will be hearing from a lot of others in the next few days. Ask any and all the questions you have. We probably had them too. What better place to get answers than from people who have been where you are and have gone through the entire process.

Take care, --- Ron K

 

[Nancy]

Hi Nicole, welcome

Hi Nicole, welcome

You've found the greatest site with wonderful people who are your ready made friends who understand the ins and outs of valve surgery and beyond.

Ask any questions you can think of. You'll find that you will get honest and swift answers from some darned nice people.

Sorry to hear that you have so much heart trouble, but the good news is that there is a fix for you.

My husband is the patient here. He's not fond of the computer, so I do his research for him. I've also been with him through more things than I care to remember. He's 70 years old and has had multiple surgeries. Your youth will help a lot in the speed of your recovery.

Hope to see you here often.

 

[Lorraine]

Welcome Nicole!

You are going to just love this cyberspace home of ours. Everyone has lots of information and we all want to share.

I have to ditto what others have posted before me about what to expect and questions to ask. The surgery and recuperation wasn't as bad as I thought it would be. Being young I'm sure you'll do just fine! With having some time before surgery you can do your research, work with with your surgeon and ask others on this forum that have different types of valves.

We will all be here to hold your hand up to, through and after surgery! Take care!

 

[Beattyann]

Nicole,

My, so much for one so young, but you will be fine. You will find this site to be one of your most treasured blessings - wonderful, warm people here to support and pray for you, which I am sure they are all doing.

My husband had his aortic valve replaced, and I have found this place to be a comfort and a wealth of information.

May God hold you in the palm of his hand and bring you to a complete recovery.

Bea

 

[mainframe]

Yes Ron,

You and Mara are officially off the hook.

Chris

 

[Perrster]

Welcome

Welcome

Nicole,

Welcome to the "click."

We'll support you any way we can. Keep in touch.

 

[ILoVeNY25]

Thanks

Thanks

Hello everyone,

I just wanted to say thank you so much for your warming welcome into this wonderful community. I wish I had known about this site sooner, it's so informative and comforting to know you all share you're experiences, knowledge, pain and fears for others. Thank you.
When I was 13, I had rheumatic fever that my pediatician did not catch, I didn't know until I was admitted into the hospital for dehydration when I developed endocarditis, They ran tests and saw the damage done to my valves. I followed up with my cardiologist and for the past year now I've become very syptomatic, I find simple tasks very hard to do and become short of breath and fatigued very easily. The surgeon I went to last week, Recommends I get my aortic and mitral replaced and tricuspid repaired. I don't have the options for the Ross procedure or repairing the other valves, The surgeon says I will be back to him in probably 7-10 years unless I have the mechanical valves. I will also be committing myself to Coumadin, I'm 19 now, I don't have any children. My doctor says it's possible to have children but it's very complicated, I wanted to know if any of you had children after VR. Am I correct that most doctors don't recommend having children after VR? Because of the risks and complications? I'm going to schedule my surgery this week, Probably at the end of May. I'm very anxious and scared, I also wanted to know if some of you could tell me what to expect when I wake up from surgery. How will I feel, What tubes and machines will be on, How long will I be on all the machines? What is the first week at home like? I appreciate all the information and experiences you share with me. Thank you all once again for everything! You are a wonderful group of supporting and loving people.

-Nicole, 19
Future Aortic and Mitral VR
Queens, NY

 

[sylgeren]

Got some answers

Got some answers

Hi Nicole. Just to let you know I had all the same questions. I would like you to check out a web site that I know you will enjoy. Go to www.stevegoldberg.com (Bum Ticker) His journal which he started at the very first thought of a surgery of any kind. He talks about everything that happens to him, all the way into surgery and after. Then he gets home and all the little things to expect and big ones. I know you will like it. But remember your doctor is the bottom line, he will tell you what you will need. Steve is just a good source of information with some heart to it. Syl

 

[jade45]

Sister in Hearts

Sister in Hearts

Hey Nicole and welcome to this family who really cares, I 'am so
sorry for the missed Rheumatic fever we are not an under developed country , sometimes things are took so litely.
Like the rest have said you are very young ,but to have these symptoms so early ,but it is better they fix you now, as far as having children that is one you and your surgeon had discuss
in a very lengthly conversation,and with so many valves affected
you might be better off with mechanical valves for the others will not do as well cause of chance of reoccurance of your rheumatic fever could you tell us what sort of test you have had, and have you been put on any meds that might help ,I know you are very young and have alot in front of you ,I myself have had rheumatic fever but they didn't catch mine until my last child me at 40 and
the most damage was done then,I was very active and worked full time now I do little as possible,my near future holds surgery also,you will be in our prayers ,and please feel free to ask any and all the questions,concerns,fears,and doubts you might have
and we will be there for you as much as we can.


God be with you always
young one

--------------------
jade
Sister in Hearts







_______________

 

[Mb]

My husband also had undiagnosed strep/rhuematic fever.

He is now 55, and has two mechanical valves. The valves are operating just fine...he is powered by St. Jude.!!!!

You are so young to have such trouble, but sound like you've got it under control. Your age is with you!!! But, all the same, take nothing for granted, get second opinions, and take care of yourself both before and after the surgery.

We all wish you the very best.

Wayne and Marybeth

 

[joy]

welcome to our "home"

welcome to our "home"

Hi Nicole. I too had undiagnosed strep/rhuematic fever. I am 24 years old, and had my mitral valve replaced. My whole story is in the personal stories part of this site. I used to think that rhuematic fever was rare for young people like us. I had it when I was 6. I never noticed the symptoms until I was pregnant with my second child. I am lucky though, and had a very good hospital in seattle. I am also lucky in the fact that my husband is in the navy, and they paid all but $95.00 of my hospital bills. I went into a coma when I was 5 months pregnant with Erik(my last child). Luckily for me I was already in a hospital at the time. I was transferred to a bigger hospital that handles more complicated cases, and they figured out that my mitral valve was severely stenotic. I had to go to a third hospital to get a valvuplasty done to get me through my pregnancy. That went well, and until Erik was born, I was holding pretty stable. Then I went downhill. I had my valve replaced with a carpentier edwards bovine pericardial valve. I wouldn't have it any other way. I live a very active lifestyle, and I am young. I chose to have a tubal ligation, so I don't have to worry about getting pregnant again. I had my valve replaced on 8/27/01. Regardless of what you might feel, I know it is hard to wait, but it isn't nearly as bad as you may feel it is. THe type of valve is a very personal decision. One to think about, and decide with your family. Good luck, and hope to see you here often.

 

[NancyMVP]

Hi Nicole, Just wanted to say welcome.
I've been hanging out here myself. After being hospitized Oct of 2000. I had TIA. I was diagnosed with MVP with severe regurgitation. I haven't had surgery as yet. I'm being kept under observation. I have an echo every 6 months. Any change will mean surgery. Which they say will have to be repaired.
Just wanted to say we are neighbors. Brooklyn here. Hope after your surgery you have lots of energy.
This is a such a great site with lots of people that have been there.

 

[Bill Hall]

Nicole - Good to have you on the site. I had Rheumatic Fever when I was age 10 in 1963. Even back then, they questioned how it could happen in a world of modern medicine. Anyway, to answer your question, the tubes and IVs are in for around one day. You could be out of the ICU the day after the surgery. Since you have three valve being done, it could be longer. I had two valves done and was in the ICU for three days. However, the tubes were out within the second day. The large IV was removed on the third day. Once transferred to a regular room, I was still on a smaller IV (for medication) and the catheter. The next day I was walking around without attachments, except a portable heart monitor. Hope this helps.

 

[Hank]

Personal Stories

Personal Stories

Did you read the personal stories yet? Much valuable information in there.

http://www.valvereplacement.com/stories/