Trying to find some young perspectives..

[kevin21]

I'm 26 and recently saw my cardiologist for my yearly appointment. I have had aortic stenosis since birth and have had no restriction and no symtoms since then. I had 2 surgeries, once at 5 and once at 10 yrs. I need to find out exactly what they were but I'm sure they were related to my condition.

My Dr. said that I would likely need to have my valve replaced in the near future (I think in less than 3-5 years). This was also told to me after my surgery at age 10 (that probably I would need another surgery).

I'm really scared of this news and have been researching this in more detail recently. I'm also getting more info from my cardio. about what I have had done in the past and what my stats are today.

I like this site, seems like there is a forum for just about everything now a day.

Finally, my question. Is there anyone here that is around the same age as me that has been through this procedure and decisions?? I'd like to know what you chose (Ross, artificial valve, etc..) and why you chose it.

What is your prognosis? Will I live to a normal old age or should I blow off the 401k??

I'd like to have kids, and want to see them grow up. Is this a feesable want??

Also, do you return to your normal activities (not like I'm a tri-athlete but I do exercise and life weights).

I'm really particular about having it quiet when I go to sleep, is the valve noise annoying??

I appreciate any responses and sorry for the long first post.

Oh, and are there any good Docs/ surgeons in Houston area???

 

[medtronic of borg]

AS?

AS?

Hi,
If you have or had an aortic stenosis from birth we have at least one thing in common. There are different kinds of senosis (fiberious, membrane,)and severity that can stenos any valve. Stenosis means closing off. AS is a serious one. You prob. have had a liagation of the stenosis. That is to say cut out. Mine was fiberious sub-aortic and grown into both the aortic and mitral position. It was ligated in 1969.

As for your ?s My valve is mechanical. The drugs are a pain but oh well.

I did not have the ross procedure. But I gave it consideration. Having been an RN I had some other insights. I chose for the surg. to use a larger approach. Meaning they could see more clearly. I like that idea.

I have had a fairly normal life. Except I never had to go to gym class or part take in any sports. Like wt. lifting!! But hiking and power walking and swiming is great.

Sex is very good for you...by all means have kids if you can aford them. Even so think about adopting! There are alread so many that need and WANT a father/mother.

The teax. heart inst. is one of the best in the nation.
medtronic of borg.

 

[JimL]

Kevin,
I had a catheterization when I was nine, rather scary. I was just younger than you when a cardiologist told me to plan on a valve replacement surgery in the future sometime. He was also extremely helpful in getting information from the hospital that had done my cath years earlier. He told me that I definitely should not have the surgery then, because it was too new. Rather, I should let the surgeons practice on others first. When it came time for my surgery last year, I was ready, and the surgeons were too.
I had AS from birth, diagnosed age 4.
Definitely plan on fathering kids. If you go with a mechanical, the coumadin makes giving birth a little difficult. My current cardiologist gave a presentation this past summer for his patients on the theme Sex and the Heart Patient. The short answer was Yes. He made the point that sex is far less strenuous than, eg, a treadmill.

 

[Nancy]

Hi Kevin-

Welcome to this great site. You have lots of built in friends who understand where you're coming from.

My husband is the patient, and he's 71 years old, so I can't help out from the younger perspective, but I can tell you that in spite of having 2 mechanical valves and a ton of pretty serious medical problems, he can still do the treadmill and lift weights. He's had one of his valves for 25 years. He doesn't go wild with it, but has been athletic all his life and he feels it's healthy to exercise.

I hope you enjoy the friendships you develop here. These are wonderful people.

Feel free to ask lots of questions.

 

[Kevin M]

I had my first AVR surgery at 23, but that was 12 years ago now.
At the time, I opted for a homograft because that's what my doc's suggested.

Since then, they have learned that young people calcify the homografts rather quickly.

I had to have a second surgery last year.

I still went for a biological valve because I am active and do not like the idea of having to watch my diet, daily monitoring, etc. that is necessary with coumadin (blood thinner that's necessary when you have a mechanical valve).

I also like to travel to places where medical care is poor to non-existent and I didn't like the risks of getting hurt or something and then having no proper medical care available.

My newest valve is a stentless porcine (pig) valve. They say it'll last 25 years +. I'll believe it when I see it. They said that about the homograft too. For me, the additional surgeries were worth the quality of life issues.

I always think of it this way. You are inconvenienced a teeny bit each day with the mechanical valve. A little more care with your diet, checking your blood daily, laying off the extreme sports, stuff like that. With the mechanical, you don't have to worry about these things, but you have to pay the piper all at once when you face your next surgery.

Mechanical valves are proven to last many, many years and it's possible you would never need another operation, pending other health considerations.

Bilological valves will certainly wear out given your youth.

It's a tough choice to make and its possible that your previous health issues could limit your choices.

Don't panic too early. Listen to what your doctors say regarding your previous conditions and how they affect your current situation.

The silver lining is that any of today's current procedures allow you to live a healthy life that can still include your athletics. You may not make it to the Olympics, but you can enjoy being active just as much.

Good luck in making your decision and keep asking questions as they come up.

Fear often stems from the unknown - the more you learn about this stuff, the easier it will be for you to deal with.

Great name by the way.
Regards,
Kev

 

[medtronic of borg]

just clarifying

just clarifying

It's me again,
Keep in mind my AS/AI was severe at birth and they did not have the heart lung machines yet nor the procedures to help me. I survived until age 5 when it was addressed. At that point my heart had enlargened so as to bump into all four sides of my chest. 220/180 was my BP then. They did a procedure called a cut down. Which became what we now call a cath. It was so hard on the pts it is illegal to do one today.I was one of the first ever to be on a heart lung machine. The first manufacured unit was sold to Dr. Barnard in So Africa in late 1968. My surg was in early 1969.
counting the cut-down..that was already my third heart surg.

My point being your condition sounds as if it is not a severe stenosis. But purhaps you too were born with a number of problems and your other surgs. were addressing smaller ones first.

I have had 17 heart surgeryies and 7 caths, 9 pacers, 3 cariac arrests,two open heart including the replacement of the valve in jan 2000, multi. mini strokes. As you can prob. tell.

Today They say there is nothing more they can do for me. They have told me that some day in the near future I will be placed on the waiting list for a new heart. But I really can't complain...I'm 39 and have had some fun. But its hard for me sometimes...knowing that my LVCM will slowly get worse and I'll slip back into CHF and for who knows how long. I know I'm dieing but it still gets to me sometimes. Like write now. Sorry. Enough!

My point is that heart surgery is no longer a crap shoot like in the days of my most major surgery(odds were 1:18,000 againt me). So be glad of that and own it. Some of early birds,did what we did hoping they would learn fromus And they have!!!!

 

[Ross]

Hello and welcome to the family Kevin21.

I was 33 when I had a ascending aortic aneurysm rupture and they did a Ross procedure on me. It went down the tubes last year and I had to have my Aortic Valve replaced this year, in July. I chose the Mechanical valve, as I really don't want anymore surgery. I know it's not guaranteed that I won't, but the likelihood is very small. Coumadin (Warfarin) isn't as bad as it sounds. If you choose a mechanical valve, you'll be on this for life.
Kevin M pretty much gave you the other choices, so I won't go and repeat.

What is your prognosis? Will I live to a normal old age or should I blow off the 401k??

To answer this, You should live to be at least 1000 years old, depending on your current health etc. Your mileage may vary.

I'd like to have kids, and want to see them grow up. Is this a feesable want??

Yes, that is a feasible request and you should have no trouble raising or seeing even grandchildren. Again, this depends on your health issues.

Also, do you return to your normal activities (not like I'm a tri-athlete but I do exercise and life weights).

You should be able to do just about anything you want after you recover. There are a few exceptions, such as contact sports and heavy duty things like that. I'm not the poster boy for this one, so I'll leave the others to answer in more detail.

I'm really particular about having it quiet when I go to sleep, is the valve noise annoying??

Some people can hear their valves (Mechanical) clicking. I cannot hear mine at all. My wife can and she said it sounds like 2 fingernails being flicked together. I don't know how accurate that description is, but it doesn't bother me. I sleep with a fan on anyways.

The long post: That isn't long, so don't feel bad if you made us read. That's why we are here!

I'm sure there are some fine Doctors in your area. I'll leave this to the Texas folks to answer. Check with your Doctor and get his recommendations as well.

Again, welcome aboard. You'll be able to arm yourself with a ton of information on this site. Just start reading in all the forums and read some of the personal stories from the main site link. If you need anything special, just ask.

 

[pegne]

Kevin

Kevin

I had my first heart surgery when I was 18 in Jan. of 1980. In May of 1981 I gave birth to the love of my life. A healthy, heart problem free baby girl, Kate. Although I went on to have other heart surgeries my daughter was a very active, 3 sport athlete. I was very concerned she would develope a heart condition but so far she's still healthy and playing college softball. My advise to you is that you are young. You'll probably have kids someday and with technology the way it is, you'll no doubt be able to keep up with them. Good luck Peggy

 

[Gnusgal]

Kevin,

I am a 26 yo female. I was born with multiple complex heart defects, so my situation isn't exactly the same as yours. However, I did get my tricuspid valve replaced this past June- in Houston. (I'll get to doctors in just a moment)

I was not given a choice in what valve I would get. I don't know if it is because of my "strange" anatomy, or which valve it was, or what, but my surgeon TOLD me I would get a mechanical valve. I didn't even know people were given the choice. I was extreemly bummed when I heard that I would be getting a mechanical valve because I did not want to be on coumadin. I knew that if I were my hopes of having children were going out the window (this is a FEMALE situation, not male, so don't worry). However, I had to choose between continuing to feel worse and not get to have kids, or feeling better (or at least not any worse) and maybe get to adopt. So I chose to have the surgery. Actually, for me I never really considered it as an option. I've had 7 heart surgeries, total, over the years (4 were pacemakers) and I've always trusted my docs about when I need surgery. I'm always looking for ways to feel better, and each surgery has, so I was looking forward to feeling better this time, too. However, that isn't the case. I don't feel better, but I don't feel worse either. I have learned in the last year that my hopes of feeling a whole lot better than I do right now are slim. As a matter of fact, I'll end up feeling worse before I can feel as good as I'd like, by getting a transplant. But that is MY situation, not yours.

I had surgery when I was 5, 7, 13, 20, 21, and 25 (two that year). I don't really remember MUCH from the early surgeries. I remember having to do the breathing exercises, and the walking around the halls. I remember laughing hurting a lot (but those were the pacemaker surgeries, so my tummy was what was cut, not the chest), but my family making me laugh anyway to help me heal faster (humor really is a great medicine). My last 4 surgeries I remember pretty well. After my surgery at 21 I felt SO much better than I'd ever felt in my life (I was never able to do much, and never took PE), the only thing slowing me down was that darn sternum healing. I felt so good after that one, that I was actually looking forward to my surgery this past summer. But I'll be honest and say the first few weeks after that surgery I found myself wishing I hadn't done it. I didn't feel better, I was in pain, the clicking was driving me insane, and I couldn't get the coumadin regulated. That being said, I am now 5 months post op and have changed my view point considerably. No, I'm not feeling a lot better than before, but hopefully this means I won't continue to deteriorate as I was before. I've got coumadin managed now, and even have a home test kit and don't have to go to the lab anymore. The clicking rarely bothers me now, and the pain is gone. I know this surgery will not be my last, but I'm glad I had it. I cannot say how you will fare, since our situations are not the same. I have a "very difficult anatomy" (words quoted from surgeon's report) and cannot be compared with ANYONE on this list. But I can tell you that recovery for us "younguns" doesn't take as long, from what I can tell. You should be feeling back to "normal two to three months after surgery. At least, I did.

As to doctors: I had my surgery at Texas Children's Hospital in Houston. I know that sounds strange, but they will operate on anyone who's condition is congenital, which you said your's is. I will tell you that TCH is by far THE BEST hospital I've ever had the pleasure of staying in (I've been in several). They are really focused on making the patient feel better. Every room is private, they have VCRs in every room, they have a library and computer room on the 16th floor, and if you can get cleared to go there it will make you feel SO much better. The PT staff (ask for Megan) is great, and all the nurses (save one) are wonderful. Plus, they have day beds so someone can stay with you 24 hours (which I reccommend). My surgeon was Dr. Fraser, the head of cardiology at that hospital, and the floor cardiologist was Dr. Chan (a good guy). I highly reccommend looking into TCH for your surgery. If not, St. Luke's is also a good choice (went there for 2 of my surgeries). I'm not sure who to reccommend there, but I can tell you Dr. Edward Massin was my cardiologist for most of my life (birth-23) and is a good man.

I've gone on for quite awhile. If you have any other questions, feel free to PM or email me ( [email protected] ). I'd be happy to chat with you!

 

[jackdrum]

I'm no authority on valves, but I do know of a excellent heart surgeon in Houston.
The Maze Procedure that I had in 1998 is a very complicated surgery, and only the best and most dedicated surgeons out there put in the time to learn, and do the maze procedure.

Dr. J. Michael Duncan Surgical Association of Texas PA Texas Heart Insitute PO Box 20345 Houston, TX 77225 713-791-4900

Dr Duncan didn't do my surgery but he does the maze with great results, and if it were necessary I would trust him working on my heart.
Best wishes
Jack

 

[joy]

Hi Kevin, I did not have my surgery in Texas, as I live in Washington with some of the best heart surgeons and doctors in the world, so I had mine there.

I was 23 when I found out about my heart disease...I was 5 months pregnant, and was sedated and had to be intubated because they thought I had a severe case of pnuemonia. They later found out I had a severe case of Mitral Stenosis. I was transferred to two different hospitals, and ended up at the UWMC. To get me through my pregnancy I had a valvuplasty done and that opened my valve up a little more. I was taken off sedation and extubated the day after my procedure, and the rest of the pregnancy was monitered very closely by Dr. Tom Easterling( world renowned to be the BEST Ob/GYN in the world) and ERik came out healthy and happy at 6 lbs 5 oz. He is now 18 months old. ANyhow...three months after he was born, I was SO symptomatic, and my valve had a 3+ regurg. SO the doctors recommeded we replace the valve asap. One month later I was having the surgery, and a year and 4 months later I feel great. I guess the point pf my whole story is you will live a good life after your surgery, it IS feesable to have children, and you will get to know your grandchildren very well too! I chose a C.E. Bovine Pericardial valve because I do have two kids, and I didn't want to be on coumadin since I am extremely "pumpheaded" and forget my meds until hubby reminds me to take them! WEll, take it easy, and you will be a new man after your surgery!

 

[TSH]

Hello,

I had my aortic valve replaced and mitral valve repaired in 1999 at age 30. I went with the St. Jude on the recommendation of several doctors. I will admit that I very much regretted the decision the first few months because of the clicking noise that the valve made. However, now I rarely ever notice the sound, and I am glad to know that I do not have to worry about having a second surgery for a very long time (if ever).

Coumadin therapy is really a non-issue for me so far, although I haven't had to have a second surgery and I have not had a serious accident or anything like that. The only diet change that I have made is limiting my intake of alcohol to a reasonable number of drinks. (I admittedly drank an unreasonable amount at times before my surgery.)

I have six month old son and plan on seeing him grow up. I don't know all of the particulars of your situation, but I would say that you have the same thing to look forward to if find a good doctor and follow his or her recommendations.

Good luck.

 

[kevin21]

Thanks everyone, I (honestly) feel better about this.

I'm actually jumping the gun, I aven't had my echo this year so I just had a knee jerk reaction (as I'm prone to do). The echo is scheduled for tomorrow at 3:30 and of course they don't tell you jack till the Dr. checks it out.

Since Thursday (my appointment date w/ Dr.) I've been stressing about what they might find. Now every heart beat feels funny and I think I'm feeling things that really aren't there (probably from stressing again). Before my appointment last week I felt fine. I always feel weird around my annual checkup, and this one was no exception.

Sometimes I'm occupied then I'll stop doing whatever I'm doing and realize that I still have to get surgery some day, then it hits home again.

I'm kind of in the dumps latley, and I haven't even been given word that I need to have the surgery soon.

Knowing that ths is probably going to happen makes alot of things seem not so important, like problems at work or minor annoyances (you guys probably know this feeling).

I just don't want to buy it on the operating table. This would really pi$$ me off, and I'd be forced to haunt my surgeon.

I know open heart surgery is risky, but is the aeortic valve surgery that risky? (I mean, I have no other problems and I'm in pretty good shape physically).

Have a good week everyone!!!

 

[medtronic of borg]

AVR

AVR

Yes, it is prob. the single most important valve in your heart. No, if you have a good well experienced thorasic surg. The other variable is the severity of the prob. Just ask (severe,mod,or mild) of your Cardio. or T. Surg.

 

[Nancy]

Kevin-

Valve surgery is highly successful, somewhere between 98 and 99 percent to the good for first surgeries. In that number are some expremely sick people. You're young and otherwise healthy, I bet. You will do just fine. If my husband and some of the other people on this forum with very difficult circumstances can make it, you will also and will go on with your life.

Please remember that the surgeons who do this are extremely well trained, are extremely careful and will pull together the best surgical team for you, if it comes to that.

You will be well taken care of in the hospital and you will be followed carefully medically for the rest of your life. That's a good thing because they will not only monitor your heart problems, but will take special care of your health in general.

It's never worthwhile to worry about things unless it's absolutely necessary, and it rarely is necessary. It's useless. The doctors are well paid to do the worrying, and they can do something about the problem. So try to have other thoughts and activities and fun to distract yourself while you wait for the test results. You cannot have two thoughts in your mind at the same time.

Take care Kevin and let us know how it goes.

 

[Ross]

Kevin don't stress! The stress will kill you, not the surgery.

The surgery itself does carry a risk, but in todays modern medical facilities, very few people have major problems. You'll be fine. Sore and emotionally messed up for a little while, but fine.

Let us know how that echo turns out. I'm anxious to hear whether your still Mild or Moderate. If it's Severe, you'll be looking at surgery pretty soon.

 

[kevin21]

I'll let my wife and parents know the stats, good to hear also for myself.

I hear all these success stories here and I almost can't wait to find out when and if it will happen. (just kidding, if it never happened I'd be okay with that).

I'm confident that I'll be fine and will make a quick recovery (again, talking like its happening tomorrow).

I've got lots to do here at work and plenty to do at home also, should keep my mind off it.

Again, thanks for the votes of confidence!!!

 

[BrooksM]

Welcome Kevin

Welcome Kevin

Welcome to our group Kevin, I hope you find it as helpful and supportive as I have.
I'm 31 and had my aortic valve replaced just over 6mos ago. Honestly the only time I think about it now is when I log in here to see how everyone is doing. I have 4 boys and play in many sports leagues. I can keep up with my kids now and compete athletically with no problems.
I chose to go to Mayo Clinic for a Cryolife Synergraft valve, there are a few of us on here with them. It is a fairly new promising technology that hopefully will allow me a very long time before another surgery (if ever.) I don't think this is for everyone but for me having no real restrictions and no meds was worth it.
My suggestions would be to do your own research and question everything. Most of all if you're not feeling well don't put it off, I found it very difficult to focus on my job or much of anything until after my surgery.
You'll be amazed at how quickly a young heart and body will recover. Stay positive and keep us posted.

 

[Bunny_Rabbit]

Young'ins

Young'ins

Hi Kevin, I'm 29 years old and was diagnosed with Rheumatic Heart Valve Disease last year, so I haven't had to make the big decisions on valves yet. However, I can understand how you must be feeling at the moment. I had a Valvuloplasty done last September and it was the scariest thing I've ever had to go through. Needless to say I freaked out while they were wheeling me into the cath. lab.

All I can suggest is talk to your doctor...a lot if you have to. And just make sure you get everything answered that you need to. I'm a firm believer that there are no such things as stupid questions. Especially when it comes to your health.

Good luck, and keep that ticker ticking.

Bunny.

 

[Creed3]

Hi Kevin!
I can't add too much more to what has already been said. You have gotten a lot of good advice. I am 34 years old and just had my aortic valve replaced with a St. Jude mechanical. The ticking didn't take long for me to get used to at all. I hardly ever notice it unless I am trying to hear it. I was completely terrified when I heard that I had to have surgery. I swore I was going to die on the table. Finding this site was one of the best things that could have happened. The people here brought me back to reality and gave me a lot of wonderful information. After my surgery (3 1/2 months ago) everyone was here to help answer many of my questions. You are young and otherwise healthy. You should, recovery from any surgery, very well. The absolute worst part is the not knowing and the waiting. It makes you feel like you have one foot in the grave. Many people here can relate and if you ever have any questions or just need to vent, we are here for you. Try to relax and don't jump to any premature conclusions. That will just make you feel worse.

Take Care!
Gail