Choosing valve with active lifestyle and being 21

[Bradley White]

In reply to Ross, I know of a lot of people in there 20s who have gotten a tissue valve. It happens. A lot of them don't post on here because everyone implies that they made the wrong decision and it isn't worth the hassle of having to "revisit" their decision every time they post.

I've had two OHSs. I play sports 5 out of 7 days of the week. I work 60 hours a week. I was back playing sports less than 2 months after my second surgery. The advances on OHS have been amazing. Is it a simple procedure? No. But it is doable. The actual mortality or morbidity rate, even for second surgeries, on someone relatively young and otherwise healthy is very low. The better the surgeon the lower the mortality rate.

I knew that I wasn't that good about taking pills and I didn't want my one mistake to turn into a stroke.

My opinion on this subject has changed a lot over the last couple years. Now that I have been through two surgeries and the recovery has been relatively easy, I would go with the Ross again if I had to do it all over. Even if doesn't last that long you can always have a mechanical put in during your second or third surgery. Either way you will get some relatively carefree years out of your tissue valve without the need for coumadin.

Just my opinion.

Surgeries at the age of 17 and 23

Brad

 

[Bad Mad]

I had my aortic valve rplaced when I was 23 - In 2001 - 7 years ago.

I went with a tissue valve (homograft) as to continue with my sport, which
involves alot of bodily contact. Just over 5 years later I was called in beacuse the valve was deteriorating (but not too badly), and my aorta was dilated. On strong medical advice I was told to discontinue my sport.

3 months ago, I had my 2nd (successful) OHS
This time I choose mechanical.

Did I regret choosing tissue (1st time around), given the fact it only lasted 5 years, for what I wanted it to do? NOT for a second.

It's been extremely trying, having to accept retirement from my game at 30 years, but at 23 it would have been unbearable for me.

Now I run, play 7-aside soccer, coach teams, and do anything that won't involve me getting bashed about the place

I don't want to offer any advice, just share my story

 

[sknydave]

Yeah, there certainly is no easy answer. I also have to take other people into account. I've realized that this surgery affects more than just myself. My family hated seeing me go through this and now to have to do it again 6 months later was not easy to say to them. My gf, bless her soul, slept in a chair for a week in the hospital and refused to leave my side. There are other things that should be considered, as well.

 

[mmarshall]

Luke,
I got a stentless porcine valve with root about 3 years ago. I stop by every now and then but really don't post that much...the ongoing mechanical vs. tissue stuff is a big turn-off. One day, I would really like to just have a reunion where the mechanicals and the tissues just have it out...like The Outsiders. I think we need to make this happen...it would be a lot of fun. Anyways, even though I was 31 when I had my surgery done, if you have any questions just shoot me a PM and I would be more than happy to help you out. If you want to read some of my posts, just go back to around May 31, 2005. From my experience, being young, active, in shape, and no other health problems, the worse part of the surgery was the pre-stress. My hernia surgery I had 6 or 7 years prior was waaay more painful...to me.

 

[Ross]

Brad and Mike, your both right. I don't perceive my posts as being as such, but obviously, you guys and several others do. I'm talking about what I have knowledge of, which granted is limited. I'm sorry if you all feel like this and will try to avoid it in the future.

I don't want to see the flames and personal attacks either. They don't belong here. Guess I need to figure a way to say things that can't be interpretted as Mechinical/Tissue war.

 

[Karlynn]

I really haven't seen this thread as a tissue vs mechanical: which is better - type of thread. I think it's done a good job of bringing up pluses and minuses for both. (the Ross really hasn't been discussed much)

Brad, it's too bad that there are people with tissue valves who are made to feel like they made the wrong choice. No one here tells anyone post-surgery, that they made the wrong choice. We've had many people who chose mechanical also get tired of reading how some view Coumadin as a horrible, life-debilitating drug and have stopped posting or post rarely because of it. It's all where your sensitivities lie. It has to do with our lives - so we are sensitive, and sometimes overly defensive. It's not like someone buying a Sony Play Station and someone else saying "Oh, I got the Nintendo Wii and it's much better." (PS - we just got a Wii - it is SO FUN!)

We need to realize that once we have a particular valve - someone else reporting information that may be contrary to what we chose doesn't mean they are being told they made the wrong choice. If there was one right choice - we'd all have the same valve! One doctor recommending tissue doesn't mean if you just got a St. Jude you're toast. It's one person's opinion being reported. There are other posts here from people who's doctor recommended a mechanical.

Luke - the one thing I will say is make sure your surgeon is not dead-set against any particular valve. Ask his stats on what valves he's implanted. If it's only one type, be a little wary. It's rare - but there may be a reason that, once a surgeon gets in there, that they find you'd be better off with a different valve. You want them to feel comfortable in making that decision without having a hard time with their own personal biases. We have members who were in that spot. They went in thinking they'd come out with A and they got B instead. No surgeon knows just exactly what they'll see until they actually open you up.

Bread used to be 50 cents a loaf when I was a kid.

 

[thecoolkid17]

Breaking Bread

Breaking Bread

Yeah I definitely don't want to start a little war on my account, but obviously a porcine valve from 6 years ago and one that would be put into me today are completely different and technology has comes leaps since then.

My surgeon was not biased towards one or the other but given my age and quality of life he thought without a doubt that the tissue valve would best suit me. He has installed both with great success. My cardiologist was on the same thought that he was, so it was relieving hearing it from both of them and having them both on board. But like anything, there are both sides and both will yield different results, long lasting or fast acting. Its just like going to the drug store, obviously if there was one that did both, we would all be happy and not have a valve selection forum.

Also my dad said coke bottles were a nickle when he was in apprentiship school.....the 8oz ones

 

[Karlynn]

Good to know your doc is ready for any eventuality. 99% chance you'll come out with what you go in for.

Wow - your Dad must be OLD! (This is coming from a 49 yr-old grandma.)

 

[Susan BAV]

I recall, as an early teen, trotting down to a tiny little two pump gas station near our house, with empty milk jugs to fill for our lawn mowers, and we had to pay a whopping 52 cents a gallon!!!

And I'm "O - N - L - Y" 46 years old ...

 

[marie]

I have porcine valve in the aortic position however I feel that my experience would not be of any value to you because I am old enough to be your grandmother and I am only seven weeks plus post surgery however I do want to wish you lots of luck in whatever you decide.
Earline

 

[thecoolkid17]

times

times

My dad is old enough to be my grandpa so any information is of great use from all age groups and I will use in my ultimate decision. But thanks again for the information.

Also my dad is o-n-l-y going to be 61 this year and my mom is o-n-l-y 54 and would kill me if she knew i was posting her age, and sadly they do not have grandkids yet and i am reminded of by my mom on a weekly basis. Hope everyone enjoys their weekend

 

[South Sound Sailor]

Everyone:

What? This thread is about oink/mooing versus ticking like a clock? I thought it was strictly an invitation to fantasize about being 21 again!!

Here's some info on gas prices (80 cents when I was 21... and I thought THAT was way too much!).

http://www.randomuseless.info/gasprice/gasprice.html

16 years from now, I'll be 66 when my youngest turns 21. But I figure in 2024, us 1957 baby boomers will just be hitting our peak!

CoolKid... welcome to vr.com... and for livening things up here! I am already looking forward to your next thread.

 

[gkenney]

I can beat that!

I can beat that!

Good luck with your choice of valves. It sounds like you are getting lots of good advice.

About gas prices. I recall when I was in college, the summer of 1969, Man landed on the moon, and "gas wars" were the rage. We had so much cheap foreign oil that the gas stations had to sell more and more to make a profit. I remember $.19 and even $.16 gasoline. You could fill up your tank for $2. I had an old Dodge Dart with push-button drive. Most of you won't have a clue what that was. LOL I don't know if those were the good old days or not. I only made $1/hour working at a drug store and painting houses.

 

[Magic8Ball]

One thing you have mentioned a couple of times is 'minimally invasive', i'd get some clear clarification on that one..

I think they can do aortic through smaller incisions (4-5ins) but i still think that requires a sternum cut......

I could be wrong but please take the time to quiz your surgeon heavily on this so you are not dissapointed & remember, its easy to service a car engine but if you ask the mechanic to do it through a 4 inch hole in the bonnet it becomes a lot harder....how hard do you want to make it for the surgeon ?

It sounds like you are sold on the porky valve and that's great...take note of Bad Mad's post as i think you will be having the same kinda experience...you should get lots of fun out of your tissue valve and it may last you into your thirty's but if it only gets you to late twenties you should be happy with that also.

Just a few things to consider also...

going tissue is no guarantee of not having to be on coudamin (but you'd have to be unlucky for that to happen).

Make sure you get your ascending aorta sorted at the same time.

Keep your dental work up to date, dodgy teeth can cause infections on heart valves.

Good luck with your journey.....


& keep us all informed of your progress, it will be interesting for everyone to hear your story....contrary to other posts i don't see anything here about valve wars or anti-tissue bias....i just think we all try to ensure people who ask these questions get a complete warts and all view of the valve choices available and the perceived concequences of those choices. As long as someone goes away from this site informed and happy with the decision they have made then we have done our job.

Truely good luck & enjoy those mid 20's full of dumb ass stunts, excess drinking & busted ligaments & bones.....

 

[thecoolkid17]

keeping it interesting

keeping it interesting

yeah i plan on getting the low down on the minimally invasive because i dont remember his exacts words it was three months ago when we last talked. But im glad i can keep it interesting here, and sadly i do know what a push button drive is, my next door neighbor had one and i thought it was the coolest thing.......another question to ponder,

how much did you pay for your first car, and how much did you shell out for your last one??

Gotta keep it interesting, also i have a tattoo im getting for my pig valve just for shits and giggles and because im young and dumb and my mom said yes

I just attached a jpeg of it

 

[Karlynn]

My first car was a 1974 Plymouth Valiant that I bought in 1980 for $2000 my senior year in college. My first new car was one we bought right after we were married - it was a 1982 Plymouth Horizon and we paid $6000 for it.

I half-jokingly told my surgeon I was going to get a long-stemmed rose tattooed over my scar. I'm not going to lie - at 49 I still think I'd like to get a tattoo, (does that make me old and dumb?) but would probably get a small Navy emblem. My Dad had one on his upper arm (from the typical drunk Navy guy on shore leave scenario) and when I was little I thought all Dad's were supposed to have tattoos. Unfortunately, I've read that people on Coumadin can get blurry tattoos because we bleed a little more than the average person, so I won't risk it. So I just live vicariously through Miami Ink. Since we bought our Harley last year, I've been trying to talk my husband into getting one. No luck so far.

I may be a church music director, but I love tattoos and the stories behind them.

The mother in me is telling you to take antibiotics as a precaution when you get one. Infection + valve = not a good thing.

 

[Bad Mad]

Luke
A couple of other things occured to me when I looked over your posts.
As Magicball refererred to, it might not be possible to repair the aorta and do the valve, through minimally invasive. I am not sure though.

Another interesting perspective might be: IF you decide on a tissue, do they:

A) Graft/Fix the aorta at the same time?

B) Do a reduction/reinforcement, especially considering you will definitely be back for a second surgery anyway?

One way or the other, you want to make sure that they address the aorta at the time of this surgery.

It's worth asking. The surgeon might not decide until he gets in there and checks out the entire aorta. I was prepared for a Bentalls (replace entire aorta with valve and graft conduit - Mball had this) this time around. Incidently my ascending aorta was 4.5cm also!!

As it turned out, he decided to do a reduction/re-inforcement, as he felt my aortic walls were strong, and that my dilatation (in the ascending aorta only) was being caused by the incapacity of my abnormal BAV. BTW, I am not recommending this procedure, as there are pros and cons and what suits one person may not suit another. Just make sure (if you go tissue) he doesn't decide to leave the aorta until next time, as it would almost certainly be over the 5cm mark, which would be counter productive to choosing a tissue in the first place. What I mean by this, is that medically they would be telling you intense exercise is too dangerous with an aneurysm of this size.

Incidently, the American guidlines (bono et al) for a person with BAV and an ascending aorta of 4cm or above, state that high Intensity contact sports shoule be avoided So, whatever your choice Luke, it is in your best interests that the aorta is sorted, so you can have little or no limitations

I am sure your cardio/surgeon will have considered all of this, to do their best for you.

 

[ctyguy]

Checkout the Cleveland Clinic

Checkout the Cleveland Clinic

Im 42, and have been a runner, skiier, weightlifter type all my life. Cleveland Clinic does more valve procedures than anywhere else in the country. Given that your so close I would strongly suggest you at least make an appointment to get their opinion. I went mechanical (On-X) and will take my chances on blood thinners. My big deal was to do this thing once and hopefully only once. Its no walk in the park but its not as bad as I thought it was going to be. Im two weeks post-op and am moving around pretty well. But its going to be 3 month minimum for the breast bone to fully heal. They did a minimally invasive procedure on me but it still required a breastbone crack. Shoot me a message if you want more info, will be happy to share my experience with you.

 

[tprice54]

first car

first car

1973 Chevy Nova, brand spaning new off the lot for $2200! Last car, Honda Pilot, $26500 brand spankin new!

 

[Lynlw]

Hi Luke, Welcome, sorry I am a little late here, but I wanted to add my 19 yo son also is the one with heart surgeries, so I can understand where you are coming from. Also you should check out the forums at the Adults w/ congenital heart defect boards, there are quite a few people in their 2o-30s, not all have had valve replacements (Justin's valve replacemnt was part of his 4th OHS hus last 2 surgeries were when he was 17 and 19) be alot did http://www.achaheart.org/index.php
I don't stop by here as often so if you'd like to talk to justin, feel free to pm me, but since he's been having heart surgeries since he was 10 days old, he looks at things a little different than someone who hasn't had any yet. Lyn