I'm young (24) and diagnosed with moderately severe aortic regurgitation. Overwhelmed

[ryanjwh]

Hi all,

First of all, I have to say that you guys seem to have a great support group here, I'm lucky I found this place after searching around on the net.

About 6 weeks ago, I visited my Dr. for a routine checkup, and he told me he was concerned about my murmur. I've been told since I was a kid (10) that I had a murmur, but no Dr.'s have ever looked deeper into it. This is the first Dr. I've seen that took an interest...maybe because my murmur is getting louder. Either way, he sent me in for an ECG, and after analyzing the results, the cardiologist called me and told me I had a congenital bicuspid aortic valve, and that it was causing moderately severe regurgitation. She also said my heart is at 6.5cm, and it should be around 5cm. She recommends surgery within the next 6 months because my diastolic is down to 25 (my systolic is normal, around 125). Needless to say this kind of knocked me out of my chair, I felt like I just got told I have cancer or AIDS or something.

At the age of 24, I consider myself young and healthy, I don't smoke or do drugs, although I do like to drink with friends on weekends in the city when we go out and have fun at night. Pretty standard for someone my age, I think. The funny thing about this is, I've read my condition can cause severe fatigue (from lack of sufficient oxygen), and I've felt tired since my teen years....I've had sleep studies done, and even septoplasty to straighten my septum to allow me to breathe better through my nose so I can sleep better. Still, it hasn?t been much help, and I feel tired and sleepy pretty much all the time, regardless of how much sleep I get. At no time, however, has a Dr. ever thought it could be my heart...probably because of my young age.

I'm writing this forum mainly because I'm feeling extremely overwhelmed. I've done a lot of research on my condition at this point, and everything I learn scares me more. For example, my cardio doesn't think I'm a candidate for repair, so I'll need a replacement....and that means Coumadin forever, and I'm frightened my youth will be ruined if I have to take that drug...constant blood tests, special diet, etc?I won?t be able to live my life anymore. Not to mention that I?ve read minimally invasive surgery is still pretty rare for full valve replacement, and that means I?d end up with a zipper on my chest?which doesn?t bode well for going to the beach ever again. Also, I?ve read that I?d be hearing a tick from a mech. valve forever...and I have near perfect hearing, I can almost hear a dog whistle, and noises like rattles, ticks, hisses, etc, REALLY bother me like nails on a chalkboard, so a constant tick from my chest would drive me into the insane asylum.

I probably sound pretty dumb about this, because I know the surgery would probably save my life?but sometimes I think about it and I think I?d prefer to live my life the way I want and die in 5 years, over waking up after surgery and having to live like I?m in my 60?s the rest of my life because I?m a prisoner of drugs and tests, and everything I want to do is limited. Is there anyone here who is close to my age that can tell me how their life is after having a valve replacement? I feel lucky to have a girlfriend now that I?ll probably end up marrying, because what girl would want to meet someone my age and date them after finding out they have a zipper on their chest, they can?t do fun things, they have to do constant blood tests, etc?.I just feel like if I get my valve replaced, my life is over regardless.

Any opinions, help, or suggestions are welcome.

Thanks all,

-ryan.

 

[Rich]

Hi Ryan and welcome aboard.
I'm sure you will find this site a great place for support and info.
I am far too old to put myself in your place but there are a lot of members who are still quite young and I'm sure you will get a lot of answers.
There are other alternatives besides mechanical valves, that is what I have due to my age.
It might mean more surgeries down the road but with the constant new changes in technology who knows what the future holds.
Iv'e thought about this subject a lot myself because my 13 yr old grandson will need valve replacement within a year or so.
So don't give up just yet.

Rich

 

[ryanjwh]

Thank you for the reply Rich. It's been only 6 weeks since I was diagnosed, and I'm still going through peeks and valleys where I feel like I'll be fine, then I feel like my life as I know it is over. After reading what some of the other people on this forum are going through though, it is a bit humbling, and I feel like I shouldn't be so down, by seeing the strength of others.

I'll keep your grandson in my thoughts, I can't imagine going through this at 13. I wish him the best of luck.

Thanks again,

-ryan.

 

[Kevin M]

Ryan, you are a good candidate for valve replacement surgery.
There are many options that are likely open to you that may not require long term use of coumadin.

I've had two open heart surgeries. One when I was 23 and one a few years ago. I've never had to take coumadin for more than a couple of weeks after surgery.

There are many biological valve replacement alternatives that may serve you just fine and those do not need coumadin.

As for the rest of your life, I can understand how you might feel tied down, but trust me, you can lead a 100% normal life after surgery.

I do many of the things you are not supposed to. I don't always eat well. I've been known to have a beer or 10. I've gone through phases where I didn't exercise. Although none of things are good for me (and I'm not changing many of them to a more positive lifestyle), they did not hold me back either.

The shock is pretty heavy and it can take some time to get used to the whole idea, but the more you learn, the easier it will be to accept that you will have to get this operation. Failure to do so is the same as not getting your appendix out when you need it. Heck, the risks are probably about the same.

Anyway, I just wanted to let you know that someone else has been in your situation and that everything can work out really well with only minimal inconvenience to your lifestyle.

As for the zipper and hanging around the beach... well, I can't help you there. You will have a scar. Most of us learn to live with them. Some of us wear them proudly as a rite of passage so to speak. It's what's underneath that is most important and my own experience with these operations helped me see that.

Keep venting here. Part of the shock factor is going from feeling invincible to feeling like you may croak or be giving up all the fun in your life. We are here to tell you that it isn't so, but we'll help you through this.

Keep strong.
Kev

 

[tommy]

Ryan,

So glad you found us and are able to unload. That's what we're here for. Sounds like you have been doing some suffering for a while.

Your symptoms are a lot like mine except that yours started earlier and you haven't had that valve infected. BTW I'm a skin cancer survivor as well.

Let me break a few things down for you.

1. There is high quality of life after AVR surgery. We have cyclists, runners (marathoners), swimmers, triatheletes. My surgery was at age 47. I feel like I'm in my 20's. No joke. I ran 15 miles last Saturday. It was before surgery that I felt like I was in my 60's. I am no prisoner of drugs and tests. I'm twice your age and going strong. You have a lot to look forward too.

2. You have a choice of valves. Tissue valves do not require Coumadin per se (other conditions may require it regardless of your valve). Tissue valves need to be replaced 10-20 years, but don't make any noise.

3. No such thing as a dumb question. The only dumb thing is not asking questions. Keep talking to us and to others.

4. Its okay to be scared out of your wits. Its okay to shout "Why me?" Ryan, this is a tough time. If you truly are feeling depressed, see your doctor about that.

I wish you well. Please continue to ask questions. Look through the posts about "valve selections" and "active lifestyles".

 

[Nancy]

Hi Ryan-

Welcome to the site and glad you found us. It's a pretty neat group of people, and we do have some about your age.

You've been hit right between the eyes with all of this. It's tough to hear that surgery is in the future. There are many valve choices available, as others have mentioned, and with tissue valves usually you will only need Coumadin for a few months while the valve heals.

Sure, you'll have a scar. My husband has scars all over his chest. He's a good healer, and after several months, they fade right down to a very thin line.

You have been having symptoms over the years, as you have mentioned. Once you get your heart all fixed up, you'll be feeling better than you have for many years. You'll have your energy back.

You have a congenital situation with your heart valve, so nothing you have done in your life could have made any difference. It would have shown up sooner or later. Thank God there is something that can be done to help you out. Heart surgery is truly a miracle.

I hope you will post here often. You'll love the feedback you get. Take care.

 

[ryanjwh]

Thanks so much to all of you who have replied. It really helps to know how many others have gone through this and lived through it just fine.

Since I posted, I've been reading lots of threads in the "Valve Selection" forum, and that has been good help in deciding which type of valve I think I might want. At my age and with my lifestyle, I'd like to try to avoid a lifetime of Coumadin if I can, so I'm currently leaning more towards Porcine or Bovine valve options right now. I guess I won't really know though, until I talk to the surgeon.

I'm stuck right now because I moved about 30 miles, and my HMO says I have to get a new Dr., so now I have to start he process over again, get a new PCP, then cardiologist, then surgeon. So it'll probably be a month or two before I really know what my best options are based on my situation. I have an extremely loving girlfriend that I wish to make my wife and a mother one day, so I have to motivate myself to get this done soon and right, so I can return to health.

I'll keep in touch with all of you, and keep those of you with ongoing conditions in my thoughts.

-ryan.

 

[Bunny_Rabbit]

Hi Ryan,

I understand what you're going through and I've put a lot of time and effort into worrying about my own future after valve replacement. BUT...have you ever even considered a tissue valve? Why are you only thinking mechanical? I know that for myself (when the time comes) I don't want to be tied to Coumadin for the rest of my life. I enjoy playing hockey and I'm not really into giving that up any time soon, so I know that a mechanical valve isn't the way to go for me.

As for the zipper, I went through all the thoughts of how devistating this big scar is going to be, but when I really sat down and tried to put things into perspective, it's really not so bad. Life could be a lot worse then having a scar on my chest. I'm going to think of it as the reason I HAVE a life. And I'll wear it proud.

Now speaking as a girl, I wouldn't want to know that my boyfriend is only marrying me because he doesn't think he can get anyone else. That's a no no.

Take care, and know that anyone who doesn't want to hang out with you, or be your girlfriend because of a scar or a ticking noise coming from your chest....isn't the person you wanted to be with anyway.

 

[ryanjwh]

Thanks for the words Bunny,

You're right about the tissue valve I think...the more I look into it, the more it sounds like a better option for me, despite the fact that it isn't supposed to last quite as long. I'd rather go in for another surgery 5-10 years sooner than have to limit myself or live my life a specific way to agree with taking a drug. It does seem though, that lots of people on this board are taking Coumadin regularly with a low life impact, and low side effects, so that's awesome.

Oh and, btw, I didn't mean to make it sound like I'm only staying with my girlfriend now because of my heart condition...I just meant that I'm lucky to have already met her, because it's easier to get over someone's health issues when you already know them and love them, then when you first meet them and have the option to walk right away. I have a feeling that I'll feel pretty self conscious about a big scar on my chest at first, but I'll get over it.

Still betting on the hope that they can possibly do it without the full chest opening, though! (Minimal invasive) I know the chances are low, but I can hope can't I!?

Later,

-ryan.

 

[Ross]

Ryan be sure to ask your current Cardiologist to look over your choices for a new one and recommend someone from the list. He can get the ball rolling much faster then if you go at this as a new patient just entering the scene. At this point, you DO NOT need further delays. You need to get fixed very soon. It'll make things easier for you also.

Your life isn't over. Not even close. You need to talk to Nicole. She's had Mitral and Aortic Valves replaced and she just turned 21 a couple weeks back. This disease stuff doesn't care one bit about age. Babies sometimes have to have heart surgery, so don't feel as if your the only one that this has happened to. Your not. Many before you and many will be after you too.

 

[The Bionic Duo]

Hi Ryan

I see that you live in San Francisco, have you checked to see if your HMO has approved UCSF. I had an ocular melanoma a few years ago and eventually wound up there for treatment, and I have been very impressed with their staff. (They have even gone to bat for me with a HMO plan we used to have.) My husband was treated locally in the east Bay, so we have not had any personal contact with their cardiac unit, but one of the part time instructors here at the community college I work for had surgery done on his infant son there and he seemed happy with the results.

I know all this is pretty daunting for you right now, but hang it there it will eventually all make sense, there are a lot of knowledgeable people on the forum that can help you.

Joan

 

[ryanjwh]

Hi Joan,

Actually you're about right on track with the research I've been doing. When my HMO said that I had to get a new Dr., I applied for an urgent PCP change to a Dr. in Palo Alto (which is 25 miles away, just under my HMO's 30 miles rule), so I could get the surgery at Stanford, where I hear they are one of the best heart hospitals on the west coast short of UCLA medical center.

Unfortunately, Palo Alto has there own 20 mile rule, so that defeated my attempt to go there. So, I decided to go for my 2nd choice, UCSF. So I found a PCP in SF whose group contracts with UCSF for heart surgery. I have an appt. with him next Monday. I hope to move everything along quickly.

On a positive note, every time I've looked things up on the internet relating to Stanford or UCSF heart surgeons, it keeps referring to them as one and the same..."UCSF Stanford surgeons blah blah blah"...so I'm wondering if maybe the same Dr's work at both hospitals since they're 25 miles or so apart, and are both hospitals with educational affiliations. If that's the case, then I'd probably be getting the same surgeon at either location.

We'll see what happens. Thanks for the positive info about UCSF!

-ryan.

 

[Karlynn]

Ryan,
You are going to be fine. In fact, once you have the surgery, you'll probably feel you've been given a new lease on life at the ripe old age of 24. I think you'll find that, once you have your surgery, that your life was very much affected by your bad valve and that with a sparkling new one, you'll feel so much healthier. (That is once you are over the initial recovery phase.)

You have many choices in valves. I had a mechanical St. Jude valve installed in 12 years ago when I was 32. I felt so rotten, I was begging for the surgery. I wasn't given a choice, but I probably would have chosen the mechanical. My children were very small at the time and the thought of them going through additional surgeries with me in the years to come probably would have caused me to choose mechanical anyway. But you need to weigh your life style, do research and roll the dice. Then know that your choice is the best for you. We all have our own opinions here, but we also all know that each one of us has to make our own choices. Coumadin isn't such a big deal for me. I home test (much like a diabetic does, but only every 2 weeks) and I don't have a special diet. I just have to be consistant about what I eat.

I will be honest and say that if my 20 year old son was facing valve replacement, knowing him, I would probably encourage him to choose a longer lasting tissue valve and roll the dice that science will be in his favor the next time he needs to be "put up on the lift and given a tune up."

God bless you Ryan. Welcome to our wonderful "family". If you want us, we'll be there with you all the way - just a computer keyboard away.

 

[Rush20]

Hi Ryan, welcome to our corner of the internet. I understand 100% what you're going through and the associated fears. Although I am not as young as you (I'm 40), I am very young at heart and very physically active. I was diagnosed with a severely leaking aortic valve last summer after a routine physical. Like you, I was born with a bicuspid valve and although I never had any problems, a routine dental procedure last winter introduced some bacteria that eventually caused my valve to start failing.

Because I was very active and "in shape" for lack of a better term, I had none of the typical symptoms; chest pain, fatigue, etc. I consider it a blessing from God that I caught this in time and I did not have a "catostrophic event" as the meds like to say. I was the walking textbook example of the healthy guy who collapses for no apparent reason.

Regarding your choice of valve, the coumadin issue is very over-rated in my opinion. I haven't noticed a big change and I haven't really changed my diet. If you live on McDonalds, you might need to make some changes, however if you attempt to eat healthy and allow yourself some occassional junk food, you should be fine.

Regarding the scar, I had the minimally invasive technique performed and I was left with a 2" mark in the middle of my chest so please make sure you get a second, third or fourth opinion from various surgeons. They used glue instead of stitches and once the redness goes away (Using Mederma to help), a little sunshine and my natural chest hair (us guys are lucky), my wife says nobody will notice and I'm beginning to believe her.

I know your scared and angry at this point, so please use this board as a place to share your concerns. I found this place about 3 months after my surgery and I wish I would have found it prior as a lot of my questions and/or fears would have been answered.

Good luck!

 

[Abbanabba]

Hi Ryan,

Welcome to our happy little family. I can appreciate what you are feeling right now, especially since you have not yet had to go through having surgery. Yes it's a big shock, and takes a bit of getting your head round it, but when you look at the big picture, it's really not such a bad thing!

I had open-heart surgery as a child and had to go through all my teenage and young adult years with my many scars - I have a zipper with a "T" section at the bottom, drainage tube scars, catheter scars at the tops of both my thighs, and another running around from my back to under my right breast. One thing I have learnt is that if YOU have problems with your scars, so will other people, but if you have the right attitude.... so will other people. And honestly, if people are THAT shallow, then who needs them anyway - right? Personally, it's never really been too much of an issue for me and I've had my share of male admirers, who even after seeing my scars, have still maintained I'm one of the sexiest women they have met. It really is attitude.

You are lucky that you have already found a wonderful girl that you can see yourself spending your life with and I'm sure she couldn't care less about your scars if it means you will still be alive to be with her.

You still have plenty of options, and by no means have you been given a "death sentence" - it's just a life adjustment. Everyone here has plenty of great advice and support to give to help you through this, so feel free to ask as many questions as you can.

Hang in there!
Anna : )

 

[The Bionic Duo]

Ryan

Stanford Medical and UCSF were working together until a couple of years ago when they split up--some of the Doctors may still operate between the two for all I know. I grew up in Redwood City, right next door to Palo Alto, and I at one time worked in the Universities Medical Clinics, so I am familiar with both.

If you can get treatment at UCSF you will love the convience. I have to go over there at least once a year to their eye clinic and its a long drive for me trough some of the worst traffic in the bay area and my husband has to take me because by the time they put all those eyedrops in I can't see very well If you were to trek it down to Stanford from SF you will run into some of that same terrible bay area traffic.

Good luck

Joan

 

[Guest]

>>Ryan noted:
>>they can?t do fun things

*raises eyebrow*

Oh yeah? Heh...you can't prove that by me . LOL!

*waits for rest of VR.comers to stop laughing*

Seriously, Ryan, I know you are faced with a bunch of decisions, possibilities, opportunities, frustrations, etc., all at once. It's not fair. But, some of us (like me) have been dealing with all of these issues all our lives...as others have already mentioned. I, personally, have had 3 open heart surgeries...1977, 1987 and 2003. I've survived each one!

Am I active? Well, guess that depends on what you consider "active". If you're talking playing sports, then no. If, on the other hand, you're talking road trips and car shows, then, as some others on here will verify, my schedule makes their heads spin .

As for that girlfriend of yours, wrong attitude, bro. Any good friend...including significant other...will not walk away simply because you are "limited" and have a scar on your chest .

*sighs*

Course, you can't prove that by me either...irony rocks .

*shakes head*

Ah, well.....one of these days .

Welcome to VR.COM. ENJOY (yes, I do mean enjoy) your stay...and vent and ask questions as much (or as little) as you need .

Cort, "Mr Road Trip"/"The Uniter", 30swm w/pig valve & pacemaker
member & newsletter editor, Faith COB = http://www.faithcob.org
"Mr MC"'s Family...& train & models = http://www.chevyasylum.com/cort/
RIP = '76, Parents' [my] MC ... '88 MC LS ... '00 "mc" LS
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[Rain]

What a beautiful name!

What a beautiful name!

Ryan,

I have a Ryan with a heart problem. He?ll be 21 in June. You sound just like him. I also have a son just a couple months younger than you ... he?s an engineer on the New San Francisco Bay bridge. He?s living in Stockton.

Ryan is a junior at CSU, a civil engineering student. His aorta is dilated.. they?re saying if we do the surgery now he won?t have to have work done on the valve itself... only have the aorta wrapped.. I?m on coumadin myself (atrial fib and a mech. valve) if Ryan does need the valve replaced.. I?ll certainly do everything I can to be sure he gets a tissue valve. Everyone here has their own opinion...that?s mine. I despise that rat killer... and the impact it has on my life.

Ryan?s heart problems came as a real blow to him... he was diagnosed right before his senior year in high school... he'd been in sports since he was six years old.

I?ll send you his email address.

Rich?!! I had no idea you had a grandson with heart problems. Please know that my thoughts and prayers are with you both. It seems so unfair at times that our young people have to deal with this.

Take care,
Rain

 

[Tony]

Hi Ryan

Welcome to this site.

You along with your cardiologist and your surgeon will face a series of choices. It may seem confusing but from my experience and that of the other 850 participants here any and all of these choices are good. Many of us did not have a choice having been put on a "fast track" for surgery but the results turned out well.

In your research consider also the "Ross Procedure" and other tissue valves. This must be coordinated with your surgeon as he
has the final call.

As for the "zipper" there are a number of open heart survivors at our local swimming pool and the zippers are not noticeable.

All the best and do not hesitate to ask questions.

 

[Dee]

Welcome Ryan,

I just had my mitral valve replaced 4 months ago. I guess for me the one good thing is that it was an emergency surgery and I had no time to think about any of it. Thinking about all of the possibilities & complications etc. probably would have made me crazy. I'm a very "young" 39 year old. I was very active and healthy before the shock of my life came. I had no history of heart problems at all. They found a tumor attached to my mitral valve, 3 days later I was in surgery. It saved my life.

As for your life being over, I feel like mine has just begun. I've been given a second chance and I'm going to make this time around count. I plan to live life to it's fullest and not hold back on anything. Next winter I will be back on my snowmobile climbing mountains and on the ski slopes carving it up. This summer I will be hiking those same mountains with more appreciation for the beauty than ever before.

I have a mechanical valve and am on Coumadin. At first the coumadin was a little frustrating and I thought too that my life as I knew it was over. It's really not that way. I have a home test kit so I just check my blood here at home....no big deal. My diet hasn't hardly changed, you just have to be consistant with your green vegies. I have found that it's starting to come naturally as far as what I need to get in each day. I feel like I'm healthier and will be stronger than I was before surgery. Cardiac rehab has really helped me get to the point I'm at now. My husband can hardly keep up with me when we walk!!

I was affraid of showing my scar at first and now I'm proud of it, it's really not that noticable and it's only been 4 mths. for me. Open heart surgery really makes you appreciate the little things in life and not worry about the others, like a scar, really.

Best of luck in the desicion making process and welcome to the "family".

Dee