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

[JimL]

Welcome Ryan. You've received some wonderful answers to your questions.

I would point out only how young most valve replacement people are. Not young in age necessarily, but young in appearance and in enjoyment of life. My wife and I attended the reunion in Chicago last October, and that was our impression of those we met there: What a young group! I met Rich and Tony not long after that, and the same applies to them.

I was grey before surgery, and dying of suffocation; I had perhaps a couple of weeks of dying left. Now I do whatever I want. Moderation is more important after OHS, but moderation still includes just about everything.

Whatever you decide about the type of valve you want is right. Besides, your surgeon will make the final decision during surgery.

Other than INR discussion, I didn't notice any effects of coumadin at the Chicago reunion. Perhaps we should schedule to all take our rat poison at the same time in Golden....

 

[Fitzy]

Hi Ryan,

Listen I'm 35 yrs of age and last May I was diagnosed like you with having a leaking aortic valve. I can tell you it came as a shock to me as I have always been very active and kept a strict fitness campaign. I used to play Rugby, Mountain Bike, Climb Mountains etc. Like you I felt that my life as I know it would be over. I thought things through a lot and realised how lucky I was to get a chance to fix the problem. I decided to have my valve replaced with a mechanical valve ( You will have to make this decision for yourself unfortunately) and on Oct 1st 2004 I underwent my surgery. I was in hospital for a little longer than anticipated but otherwise my surgery went well. I have no regrets and I'm back running, cycling etc and feeling great, being on the coumadin is no big deal once you get used to it, and I still go out and socialise with my friends. To be honest I am now back to work, training like I have always done and really have forgotten all about the op.

I'm sure you will make a great recovery too.

As for the scare- It's whats inside that counts.


Keep in touch with all the people on this site they helped me and they will help you too.


Fitzy

 

[Lisa]

Wear the ZIPPER with PRIDE, man!

Wear the ZIPPER with PRIDE, man!

It will be your own personal trophy! Ryan, you said you currently have a girlfriend...but have you thought about what a great conversation piece that zipper is going to be? I think a lot of ladies will be curious about the scar. My little brother had his first open heart at age 3. I can tell you from personal experience that many people found his scar interesting and "cool."

It certainly does shock the system to find out that you aren't invincible. I'm only 31 and scheduled to have my aortic valve replaced on March 19th. And I'm going with a tissue valve (homograft). This is something you really need to research and talk over with your surgeon as well. Ask as many questions as you can. Go to the Valve Selection area of this site and read all the posts. You DO NOT have to end up on coumadin at this stage in your life. You may end up choosing the mechanical but make sure you do the research...You have several options with this.

Good luck with everything. It sounds as if you have a little time left and you're on the right track. Keep researching and vent all you want. That's why we're all here

 

[Tom F.]

Well of course this is hitting you hard. Being told that you need heart surgery hits everyone hard, regardless of age. One thing I would very strongly encourage you to do is look into a Ross Procedure. If that is possible with you it may well mean a one time fix, and no need to take coumadin. If you want more infor feel free to E mail me at [email protected]. Hang in there, you really will be ok.

 

[elphie]

Hi Ryan,
My situation was similar to yours in that I was born with a heart murmer, but no doctors were concerned about it until I was about 23. At that time, I felt exactly like you do, and I dreaded having surgery. When I walked out of the doctor's office, I remember just wanting to be hit by a car, so I wouldn't have to go through the surgery. All I could focus on was how this was going to impede my life and how I wouldn't be able to live the life that I wanted to.
Well, I was lucky enough to last until this December until I needed surgery at 37 years young. I was scared to death, but now it's behind me, and my life hasn't changed a bit, except that maybe I'm more grateful for the loved ones in my life. I like you, was dreading the mechanical valve and the quality of life I would have afterward, so I chose a tissue valve with a life expectancy of 15-20 yrs. The people on this board who have mechanical valves will tell you that they get along fine with them, but if you are that worried about it, you need to discuss your options with a surgeon and cardiologists who can help you decide. I came to my decision for a tissue valve because I thought I'd rather have 10 or more really good years not having to worry about ticking and coumadin. I'm not trying to sway you one way or the other because this has to be entirely your decision, but it seems like you're exactly where I was at when I made my decision to go with the tissue, and I can't tell you the relief I felt just to have made the decision. After I did, I just wanted to get the surgery behind me. Now I have and I picked up right where I left off. As for the scar- please don't let that bother you. It's really not that bad at all. I'm just glad to be here to talk about it if people should ask.

 

[alicia]

Ryan, You deserve to feel all that your feeling now, but trust me it will get better. Im 43 and been thru 2 open heart surgeries and will be having major surgery in 2 weeks and Im feeling all the fears again that you are going thru. This will be my 4th major surgery within 3 years. I too was very healthy and surprised when I was diagnosed with a heart murmor at the age of 35 but you do waht the Drs tell you and you keep living each day to the fullest. Coumadin has been very, very hard for me to manage and it has caused internal bleeding which is why Im having another surgery in 2 weeks. I wish I had of insisted on a tissue replacement instead of mechanical. Each perosn is different and handles the surgery differrent. Im sure ant your age and good health and good lifestyle you should excel and have a better quality of life. Good luck with everything! Please keep us updated. Vent here anytime, God knows I do!!!

Alicia

 

[ryanjwh]

Wow, lots of replies! Thank you so much everyone for all of your genuine words of kindness, wisdom, and care. I think after reading other's stories, I will be push the tissue valve option when I talk to the surgeon, despite the fact that it doesn't last quite as long.

Actually, does anybody know how it works if you change jobs while you're working on a health issue like this? If I changed jobs, I'd most likely be changing insurance companies/plans, so I'm not sure if the new company's insurance would deny coverage of my heart condition because it is preexisting. I ask because I'm currently commuting 50 miles each way (SF to Milpitas and back) every day, and might have an opportunity soon to take a job in SF only 1-2 miles away, destressing my commute by about 10x! Would make my life easier, but not sure about the nightmare of dealing with insurance.

Thanks!

-ryan.

 

[Marge]

Hi, Ryan!
What a tough thing to deal with, especially at your age!
I can't comment on having heart surgery in one's 20's -- I had to wait a good deal longer for my own valve problem to surface.
However: I CAN comment on having serious surgery, and serious scars, etc. as a young person, in my 30's, because that is what happened to me. I suffered from an arterio-venous fistula (a complicated circulatory congenital defect) in my left arm which, after thrombosis and gangrene, to an amputation of my left arm.
I was in my early 30's and I remember a renowned UCSF vascular surgeon with tears in his eyes, as he told me that was the only option at that point, and apologizing "because you are a young attractive woman."
As you can imagine, this incident was a pretty major one in my life and many adjustments and adaptations were necessary. Luckily my livelihood never depended on having two hands. I was able to return to my job as an attorney, and I continued to be reasonably successful. (You don't need an arm to talk to a jury.)
As for the girlfriend thing, you are, perfectly understandably, worried about that. But I don't think you should be. No girl worth bothering with is going to turn you down because of a zipper in your chest.
I was unmarried at the time of the surgery, but had had a pretty lively life in the romantic/sexual area I wasn't absolutely sure how the arm thing would affect that. Actually, as it turned out, the guys who were interested before continued to be interested; I even acquired some new interests. Also: I met the man who would later become my husband, about a year after the amputation. He cared about ME, not my arm. We've now been married 20 plus years.
As for going to the beach: after the first awkward few times, I think you won't worry about people staring at your scars. Honestly, after a while, you'll realize most people are intent on their own thing and really do not care. It took me a few tries: first a friend's pool, then the pool of the apartments where I was living, then the beach, then a vacation in Hawaii. At first I felt very self-conscious, wanted to hide under towels, etc. I finally decided that, if my scars bothered anybody, it was THEIR problem, not mine. And after that, I was fine.
Ryan, none of what I've written is meant to minimize your very real anxiety and the difficult decisions you must make. This is a great site to find out what you need to know, and there are a number of much younger people here at VR.com who've gone through what you're going through, and they will help you.

 

[elphie]

Ryan,
You'll want to check into the insurance issue for sure, as I don't know much about it, but I can tell you I think you're ok as long as you don't let your insurance coverage lapse. When I quit one job, I remained with Cobra coverage until my new insurance took over, and no questions were asked about pre-existing conditions. If you do take the new job, you'll have to consider that sometimes insurance benefits don't kick in until several months after your hire date. Also consider sick time and leave of abscence benefits. I had to work a full year before I was entitled to the leave of absence that I needed to get my surgery done. Luckily for me, the timing was just right- my surgery couldn't have waited any longer. Making a job change is sometimes a tough decision, and having health issues on top of it only makes it more complicated, but do your research and whatever you decide will work out.

 

[Gemma]

Ryan,
Reading your message reminds me SO much of what happened this time last year to my boyfriend Jim (he was 25 at the time). I made him go to the doctor to rule out a chest infection because I'd had one and he'd been getting chest pains at night - like a stiletto in his chest he said, still not sure how he knows what that feels like . Anyway, the doctor did an ECG and made an appointment with Jim to see a cardiologist - who told him pretty much what you've been told - congenital bicuspid aortic valve, enlarged heart (7cm), surgery needed within a year. His blood pressure was 160/30 at one point This all came as a HUGE shock, as he'd never had an inkling there was any problem with his heart at all. And it takes time to come to terms with what's going on.
What the surgeon and the cardiologist both told us was that things would not get better without surgery - Jim would find it hard to walk upstairs without getting out of breath within 5 years, and his heart muscle would eventually be irreversibly damaged as it struggled to cope with the extra workload of pumping the same blood through the valve twice. I think if you don't have the operation you'll find it hard to carry on living your life like you want to for the next 5 years. Sorry to be blunt, but I think it's true.
Luckily, at the time Jim had his aortic valve replaced last December, the "only" symptoms he had were these chest pains and increased tiredness. His heart is now back to normal size, thanks to the valve working now and the fact he's on ACE-inhibitors (the cardiologist is reluctant for him to stop taking them although maybe opinion varies on this - they've done their job so I don't know if he'll need to take them forever). He's got a mechanical valve, and yes it does make a noise but it's not that loud really, takes a while to get used to but it's nice to hear it ticking regularly rather than seeing his chest jumping round all over the place like it used to.
As for not being able to do "fun" things - what exactly do you want to do? The cardio said Jim can go out and get on with his life, even scuba-diving (is this an extreme sport??) - the point being that if you sit around you will only get unfit and like an old man and get more health problems, but by being active you can avoid that.
Sure,he can't drink lots like he used to because of the warfarin - personally I think drinking's over-rated anyway, but there isn't any special diet to follow - just be consistent. It's when you suddenly eat a huge plate of spinach or drink too much you get problems, a couple (no more) of drinks is still OK although Jim doesn't really feel like drinking yet anyway... Does mean he has to drive when we do go out though
We went for a bike ride at the weekend and it was me having difficulty keeping up with him! Same with walking.
Only you can decide what valve is best for you, Jim chose mechanical because he wanted to only have surgery once.
The scar is only a big deal if you make a big deal of it. Depending how hairy you are it may not be obvious at all. If you want to ask about minimally invasive surgery, talk to the surgeon about it.
It's still early days and you've got a lot to take in. I'm sure if you do a search here you'll find pretty much all you need to know. Don't be afraid to ask the doctors questions - some won't tell you stuff unless you ask.
If you or your girlfriend want to email me at all my address is [email protected], or send me a PM.
Gemma.

 

[chevrolet]

Hi Ryan ... I can relate to your story a bit. I'm a young 31 years old ... I still get asked for ID when I go out, I've biked 100 mile marathons, and done so much aerobics that my calves look like a man's. I too consider myself fit and healthy. Always new I had a "murmer" but never worried beyond that. Well, imagine my surprise when my doctor suggested that at my age, I needed a cardiologist and my further surpise when the cardiologist found the Bicuspid Valve.

So far, I am not a candidate for surgery. But, I'm not sure what is worse ... having the surgery choice made for you or having to play the odds and hope that you time your check ups well enough so that if it gets worse, they catch it. Also, I was newly engaged when I found this out ... so I can relate to your concern. I was worried that my fiance would think he was getting "damaged goods". He has been wonderful about it ... but having a condition like this does change the way you look at life. I thought I had all the time in the world to decide when/if to start a family, and now everything is a bit more of a time concern.

I guess what I'm trying to say is that although I'm a few years older than you, I too had to deal with the, "I'm too young!" outrage of this. You get over it, and it just makes you a wiser young person instead of just a young person.

Good luck and keep us posted!

 

[Guest]

Ryan,

As Elphie said, you'll definitely want to ask those "benefit" questions...and pay close attention to the answers...what they tell you, and, in some cases, what they _don't_ say.

But, for some reason, I thought there was a law passed now that says something about guaranteeing care/coverage even for pre-existing conditions.....

*rolls eyes*

Or maybe I was just dreaming....I'm not sure.....

 

[tobagotwo]

Wow. Not much room left to weigh in on this. You gain a lot of friends and neighbors when you come here, Ryan.

I have to have my valve done, and I'm scared and mad, too. I'm 51, but I don't feel like 51 inside. The calcification is from some illness I had about 25 years ago that affected my valve. I didn't know it until four years ago, when my doctor was shocked at how much noise my heart made. I had just gotten used to it over time.

I can't give advice on what it's like, or how to act. I'm still on this side of it. But I can tell you you're not alone. You're in a place where there are many people who do know EXACTLY how you feel.

I can tell you your odds are phenomenally good for the surgery. Most of the percentages you may see and worry about are based on age and other complications, of which you have neither. Surgeons will want to do you, as you'll add to their good numbers.

If you didn't feel mad or scared or unfairly abused, you wouldn't be normal. You can let some of that out here. And you should, because those around you will need a break from it now and again. As we can't escape it, it is easy to obsess a little, which tends to be perceived as a less charming side of ourselves.

Go through some of the postings and consider your options for valves. There will definitely be pressure for you to go to a mechanical valve, as that is considered standard for your age (actually, even for mine).

If you decide against mechanical, it may be an uphill battle to convince people. The mechanical valve, right or wrong, is considered a permanent fix. There are good postings here about living with Coumadin, and many with years of experience doing so. Listen carefully to what they have to offer, as they don't all see it as being as evil a thing as you might think.

On-X are new mechanicals that look interesting. St. Judes is a standard favorite of many. Carpentier-Edwards Perimount Magna is a top-of-the-line bovine valve, and the Medtronics Mosaic is a top-of-the-line porcine valve. And there is the Ross procedure, and there are allografts (valves from deceased human donors).

Try not to do too much physically right now, as you do not want the heart to deteriorate before surgery. I was shocked that my cardiologist set me up with a handicapped tag. He told me to take elevators (always went up stairs two at a time) and walk slowly (always walked to GET places). It's hard to not pick up the recycling and bring it to the curb. My arms and legs don't feel fragile, and my mind doesn't register it either. Your heart wil be that much better after surgery for the abuse you do not give it now.

Good luck, Ryan. Everyone here is rooting for you at a very personal level.

Bob H

 

[Granbonny]

Hi Ryan

Hi Ryan

Welcome to our wonderful site...You mentioned..not wanting to live like you were in your sixties....What's wrong with being age 60? I will soon be age 64..and am very active. I will be 2 years in March from having my Valve replaced. I take coumadin..no big deal for me...I am very lucky that my INR stays in range..even tho..I drink some, eat anything I want and my Grandson tries to keep up with me At your age..you should probably choose a tissue valve..and down the road ..when you have to have another re-op..go with the Mech. valve..Don't think anyone needs to go thru this operation more than 2 times. The surgery is good..but the recovery time is very slow. Days, weeks and months to feel your old self again. Read a lot of our threads.....Good luck..Bonnie

 

[Harpoon]

Looking up at Ross's post here....


You know, I'm one of those "sometimes babies"....


=)


Ryan>>You've found a great place with all kinds of folks that have all kinds of conditions including the one you've got.

I know a lot of this can be very overwhelming. It's a lot to handle all at once and it's gotta be taken care of in a short period of time otherwise you can get VERY sick.


You've got a lot going for you though, you're reasonably healthy (at least from what I've read) and you've got some people like your girlfriend supporting you all the way. You're young and that's a BIG help. Plus, as it seems, you have some options as to where you want to go with a valve replacment and you should take as much time as you can investigating all the pros and cons of each option available to you.


There's a lot of "scary" information running around about coumadin and how it might affect your life. Most of it is all crap too.

I've been on coumadin for almost a year, since I got my artificial valve in March of 2003. Only once did I have a problem with the clotting factors go out of whack and it was because I stopped (with doctor's approval) one of my other medications. We tinkered with the dosage for a few days then went back to my normal dose and had more bloodwork and everything was fine.


The maintenance isn't that bad. I get my blood checked about once a month or so. I'm not very "stringent" about it but I do try to get a blood draw done at least that often. I eat just about whatever I want. I'm more concerned about the salt in my diet (avoiding congestive heart failure which got REAL bad before I had surgery) than eating something that might cause problems with the coumadin. In fact, I just had a bowl of tomato and spinach tortellini soup from a local coffee shop here for dinner. Good stuff too.

What seems to be important is consistancy in what you eat, not avoiding certain foods all together. Vitamin K is what can cause problems with coumadin therapy. Coumadin is an anticoagulant and vitamin k is a natural coagulant so the two of them kind of counteract each other depending on how much of each is in your system. If you suddenly up the level of vitamin K (eating a big spinach salad for lunch) then your clotting factors will change some. If you suddenly stop eating the salads you've had with dinner every night since you were 4 years old then your levels will change too.


As long as you're keeping at least a little eye on what you eat and how much of it plus getting your PT/INR checked on a regular basis you should be good to go.

I've cut myself once while cooking and once while cleaning the cup of a travel coffee mug. They weren't deep cuts, but they took a while longer than normal to clot over. I just added an extra band-aid and called it good to go.

By the way, the second cut was during the same period my PT/INR was off because of the change in medications so I was already working against a stacked deck. =)


Oh, and most times I use a wet razor, a Schick Mach 3 I think, to shave with. I've never cut myself shaving with that. I HAVE cut myself with a Remington electric razor I have... Go figure!