Preparing For the Knife

[crs]

Hey Everybody-

I have been reading a lot of posts on this site over the past few weeks. I decided to register and post some questions that have been bouncing around in my head. It seems like everyone involved in this site has history and experience in what I am about to go though so here it goes... I am a 30 year old male with congenital aortic stenosis. I decided at my last heart check up that the time has come to have corrective surgery and began the process of finding the best doctor for my needs. After consulting my regular doctor, he recommended Dr. Tomas D. Martin from Shands Hospital in Gainesville, FL. After my consultation I was comfortable with him performing my surgery and have since scheduled to go in on June 10th for my operation. First question is that I was wondering if any of you have ever been to Shands or know anything that could be helpful in regards to Shands or Dr. Tomas Martin.

Secondly, I "think" I have decided on having a tissue valve instead on a mechanical. Although my research on the topic suggests that because of my age I should be going with a mechanical, I just do not want to be on Coumadin and have to regulate things in my life. I just assume have another surgery in the years to come. I am looking forward to a VERY active life. Second Question: I your experience, what valve would you suggest for an individual that what’s to be extremely physically active (exercise) without limitation?

Finally, after surgery what should I expect? I can deal with pain! But how long should I be expecting to be down for. Some people say two weeks and others say a month. I just what to be mentally prepared so I don’t go crazy. Any tips you could give me would be great.

Thanks for hearing me out everyone. Look forward to talking to you all very soon. Any info you could provide would be MUCH appreciated.

Thanks again,
Casey

 

[tprice54]

Welcome! I would suggest that valve choice is NOT dependent on how active you will be post-op. Some suggest a bovine now looks like it may last longer than a Porcine, but hey, there is no way of knowing how long they will last in YOU! BTW, my SIL is a nurse in the ER at Stuart's....love visiting the area!

 

[Ross]

This is one surgery that you only want to do one time if possible. I'm for anything that will reduce the risk of another surgery. Make no mistake, this is major surgery and does a number on all of your organs. They won't put up with continued abuse over time. I would recommend that you study up on the facts of Coumadin and not the myths that are so abundant, before making the choice final. People get upset with me for saying it, but hey, I and others have suffered additional commorbidities as a result of more then one surgery. It's your choice and I won't deny you that, but I do want you to be fully informed before you make a final decision. Mechanical or tissue, it matters not, you can still live a very active lifestyle. How old are you anyhow? Please don't say 35 or younger.

 

[kfay]

Only you and your Dr. can decide what valve is right for you. If you ask everyone on here, you are only getting their biased opinion based on what which valve they chose for themselves. Only you can decide which factors are more important to you. It seems like I remember one or two others on here who had surgery at Shands...do an advanced search for it and see what pops up.

As for how long you will be "down", I would count on more than both two weeks and a month. Although by a month you will hopefully be having many more good days than bad, this is really major surgery and it takes a while to get back to feeling 100% again. Don't get me wrong, you aren't going to be lying around in the bed for a month, but you also aren't going to be running a marathon. You'll feel like crap for a little while, then slowly, but surely, you'll start feeling better and stronger. Everyone is different and you just aren't going to know how your body is going to react to this until you go through it.

Best of luck.

Kim

 

[buncle]

Welcome! I will let others debate the valve choice.As far as recovery for me personally. First 3 days were very rough. I walked out of the hospital easily at 7 days and I had some problems during surgery.
At 30 days I went back to work and felt at least 50% and been improving steadily. I am 8.5 months out and am between 80 - 90%. I felt pretty good when I had surgery unlike some who felt miserable and their improvement was noticed much sooner.I went in prepared for the absolute worst - it wasnt nearly as bad as I had thought.But, it is major surgery and I dont want to go back.My opinion is heart surgery is harder to get "your head around" than other surgeries.Just because it is your heart.Once you get past that it is alot easier. Other surgeries are more painful physically than OHS.You can do this and you will much better off later.
Good luck and we are behind you 100%

 

[daveguy14]

Just remember that at your age, if you go tissue you MUST be mentally prepared to accept you will face another surgery in around ten years--it could be longer, but those things wear out quickly in younger people. Do not assume you will necessarily get fifteen to twenty. At that point, do you think you would go with another tissue or mechanical? If the latter, then the question is not really a lifetime of anticoag vs. a lifetime not, but buying ten years off of it. Reasonable minds may differ on this, and I'm not trying to sway you one way or the other. It's a choice only you can make (with professional advice, of course).

 

[Jkm7]

I had two OHS in four years........ my valve was not an issue the first surgery so my second wasn't re: valve failure from the first OHS.

I opted for bovine and now that it is two years after my surgery, I am so grateful I did. Seeing it was my second surgery, I certainly knew what to expect and still not being on coumadin and not risking an overly loud ticking valve were the major reasons for me to choose tissue valve. Each of us has to make educated, informed choices and only you and your doctors can speak for you.

My first surgery, I was very sick going into it and was emergency. I had a mostly bump free recovery, I felt more ill for longer than I did the second.
My second surgery, the moment I woke in CICU, I knew this surgery had been easier on my than the first though it was almost 8 hours long. I recovered well and quickly and was driving in under three weeks whereas, I had to wait over 8 weeks to drive the first time.

The better shape you are going into the surgery often helps you get through it more easily. Walking is one of the very best things you can do for yourself both before (if doctors permit) and after. Even in the hospital, with four chest tubes in place, I was walking. It made such a difference.

When you meet with your surgeon, discuss with him the likelihood, in his opinion, that in the near future, valve replacements may be done far less invasively but percutaneously. My Mass General surgeon and many other surgeons people here have gone to feel strongly we will see valves placed that way in a large number of patients in the not too distant future. Something to think about and discuss with your doctors while making your decision.

Happy you have found us here and wish you the very best.

 

[Cris N]

. How old are you anyhow? Please don't say 35 or younger.

... I am a 30 year old male with congenital aortic stenosis...Casey

Question & answer.

 

[malibu82]

Hi there

I just wanted to say I am a 28 y/o female and just had my valve replacement last friday (may 21)

I had the same questions/thoughts as you. I don't live in Florida so of course haven't heard of those doctors so can't help with that.

At my young age, I decided on a tissue valve. I have 2 children under the age of 2 and I just wanted life to get back to "normal" after surgery. I know that means at some point another operation. But I prepared myself for that. Even after the surgery I would still choose one if given another chance. When I told the surgeon staff what I decided on, They said that everyone is going with bovine these days so they weren't surprised. Like you, I had read that someone my age should choose mechanical. It just didn't sound like the right choice for me though. In the pre surgery booklets they hand out to you that tell you about both valves, my husband made a good point. The paragraph telling about the tissue valve was short. The paragraph telling about the mechanical valve was a whole page.......

After surgery I have now learned I never could have prepared myself enough for the pain. There is no description for the way you will feel. Not just pain wise. But now 5 days post op, I feel better then I did at 2 days, and 3 days so that means something right?

Good luck and just know that in the end you have no choice and have to have the surgery. So you are saving your life. It will be scary, but you will turn out okay

Jackie

 

[mauiboy]

Ultimately Your Choice

Ultimately Your Choice

Hi Casey...I am not an expert in this field but I can give you some advice based on my experience. If you choose a mechanical valve you will not need reoperation but will have to deal with some noise factor (ON-X valves may be quieter) and the blood thinner coumadin which may have side effects and problems maintaining effective INR levels unless you take a more proactive role in monitoring your own levels. Bioprosthetic valves include homograft (human donor), porcine (pig's aortic valve) or bovine (cow's heart casing). Don't know of too many procedures done with homograft. Porcine may have a propensity toward tearing later due to its composition. The shelf life for porcine is about 10-12yrs while bovine is 18-20 yrs. In my case, the Stanford doctors recommended the bovine pericardium since I previously had a bout with stage 4 squamous cell carcinoma. They felt it would be more beneficial if I were off the coumadin due to the possibility for future biopsies and surgeries. I would have probably still chosen the bioprosthetic since the doctors assured me that in 20 yrs the reoperation would probably be a small minimally invasive incision to replace the deteriorated valve with a new one in the existing stent. Ultimately the decision is yours with the recommendation of your doctors. Hope this helps.

Good Luck,
Eric

AVR, 5/6/10
Carpentier-Edwards Perimount Magna Ease 23mm

 

[ARGreenMN]

I wrote a book on here then lost it before it posted... I'll just re-cap more briefly... I was initially leaning heavily towards tissue for many of the reasons you are (and more). Read my original post (something like "48 year-old newbie with lots of questions"). After much research, including talking to many on here, I decided on mechanical, and am happy with the decision. Other than Ross says so (kidding, but seriously, the dude knows his stuff!), some of the big reasons included a significantly higher mortality rate associated with the 2nd surgery (first one is something like 2 1/2%, second one is more like 6%-9% I believe). The fact that while many will say 10-20 yrs with tissue, I've heard they often only last 7-10, especially for younger folks. Coumadin isn't as bad as you're probably thinking. This will be controversial, but it played a part in my decision - there's a chance that someday (maybe 3-5 yrs down the road) you may not have to be on Coumadin anymore - if research pans out. Don't count on it - but maybe.... I'd be happy to go into more detail on why I was leaning tissue, and why I ended up with mechanical, but since I just wrote a book, I'm tired of writing - let me know if you want more of my experiences. I just had surgery 3 weeks ago. I was feeling outstanding until this past weekend when started having some irregular beats (which I guess is fairly normal after surgery). Am still doing great overall though - the incision hardly hurts at all anymore, and I'm getting around pretty well, except you're not allowed to drive for at least 4 weeks. I could probably go back to work soon (have a desk job) but since they told me to plan on 8-12 weeks, and I told work that, I'm gonna stick with that schedule just to be safe. I'm looking forward to weight-lifting again at 3 months (my doctor says I most likely can) and starting to play basketball again this fall (again, shouldn't be a problem). Anyway, I'll sign off now - I blab too much on here. But if you have other questions - ask! You've come to the right place - this forum is AWSOME!

 

[kfay]

some of the big reasons included a significantly higher mortality rate associated with the 2nd surgery (first one is something like 2 1/2%, second one is more like 6%-9% I believe). The fact that while many will say 10-20 yrs with tissue, I've heard they often only last 7-10, especially for younger folks. !

This isn't exactly true. Mortality rates for second surgeries are pretty much where they are first time surgeries, I was quoted 2% for my 2nd. As a whole generation of congenital heart patients has survived well into adulthood now, surgeons have gotten much, much better at repeats. However, the rate for 3rd surgeries does take a good jump, if I remember correctly, my surgeon told me I'd be looking at around 10% mortality and I think my fourth will be really high, somewhere around 30%. Also, while it is generally known that tissue valves don't last as long in younger patients, it depends where the valve is placed and just your general body chemistry. At 45, I was told to expect somewhere between 10-13, hope for 15+, and know that a few had come back at 5-7, so, basically, there is just no way to know how it will be in your body until it is there.

 

[mainframe]

I went with tissue the first time at 45 years old and it only lasted 7 years. This time I went mechanical. My surgeon has told I have "no restrictions" as to my activity which is good news since he also replaced the acending aorta. I've only been on coumadin for six months but it really is no big deal. I had a much tougher time my second surgery than my first. Others have said that the second was easier than the first. If you have to have a second, just don't get stuck with the short straw. I did and the surgeon told my wife at times that my chances were about 50/50. I hope to never have to have a third surgery.

 

[Ross]

Just a couple of corrections. Getting a mechanical does NOT guarantee that you won't need another surgery, but it significantly reduces the chances.

Do not make your current decision based on "What might be" in the future. Many have been let down with this line of thinking over the years. Sure, there may be a replacement for Coumadin, or maybe transcatheter replacements (Is done today, but only for those too sick to endure full blown surgery), but that is not the way it is today and both have been talked about for a very long time.

 

[ALCapshaw2]

It sounds like you are doing your home work CRS. Good for you !
The more you know, the better you will be prepared to make the decisions you will face.

We have several members who have had Surgery at Shands but I don't recall seeing that Surgeon's name before.

For Performance, the Improved Porcine Valves typically have the Lowest Gradients.
Unfortunately, Porcine Valves also seem to have the lowest durability, often needing replacement in less than 10 years, especailly for younger patients such as yourself at age 30. Some have needed replacement in only a few years.

The Bovine Pericardial Tissue Valves have better durability (often 20 years in OLDER patients...age 60 and up).
Young Women who wish to carry children have gotten 10 good years from these valves.
The down-side for athletes is that the pressure gradient tends to be higher than that in Porcine Valves.

Mechanical Valves are designed to last several lifetimes. Pannus Tissue Growth can impede valve operation thus requiring replacement in a small percentage of cases. As an Engineer, I am highly impressed with the technological advances offered by the On-X valves. See www.HeartValveChoice.com and www.onxvalves.com for details. St. Jude Medical, Carbomedics, and ATS are other manufacturers of mechanical valves and have their own websites.

You may want to browse through the Active Livestyles Forum to see all of the activities of our more Athletic Valve Recipients. Also check out the Anti-Coagulation Forum to learn the Reality of Living with/on Coumadin / Warfarin.

That should keep you busy for a while!

Happy Hunting,

'AL Capshaw'

 

[Luckyguy17]

heh Casey,

welcome to the forum and good on you for proactively getting an education, so you can have some intelligent conversations with the med pros.

bio or tissue vs. mechanical is one we all face, am 56 and chose bovine for aorta and mechanical for mitral...all selected in discussion with my surgeon

At 30 I might have chosen mechanical, but then again a 37 year old at my hospital last week also chose bovine, so it an individual decision

they both work and they both have some compromise, flush out the pros and cons and be sure to verify the pros and cons with other sources

downtime is dependant on many factors, some in your control, some possibly skill of the professional and facility and some just plain luck factor

good luck with the journey

Gil

 

[daveguy14]

heh Casey,

welcome to the forum and good on you for proactively getting an education, so you can have some intelligent conversations with the med pros.

bio or tissue vs. mechanical is one we all face, am 56 and chose bovine for aorta and mechanical for mitral...all selected in discussion with my surgeon

Gil

Just wondering, if you went with one mechanical why not get both mechanical? You have to be anticoagulated anyway.

 

[Ross]

Just wondering, if you went with one mechanical why not get both mechanical? You have to be anticoagulated anyway.

I wondered about that too.

 

[Jkm7]

Me, too.

I am interested to hear your surgeon's reasoning for one mechanical and one tissue valve.
Thanks if you care to help us out with this question.

 

[neil]

welcome aboard casey. whatever you pick is the right choice for you, dont be to swayed by the comments on here,nobody is medically trained and there just giving you there opinion, i found the op to be better than i thought which i think most people do, am glad i choose tissue as you only gotta look on the forum page to find out one of the most talked about subjects anti coag, so am so glad i dont have that issue,saying that another op down the line isnt something i look forward to like a good choccy cake lol,but its something which doesnt bother me to much, i cert wouldnt try to sway you one way or the other as both have great results, just remember , choose the one for YOU not what people on here say is best for you, me included ha ha,