48 year-old newbie - Lots of questions to come

[Ross]

Ask the Doctor what he uses. YOU CAN HAVE ANYTHING YOU WANT, but you may have to jump through a couple hoops to get it made that way. Have a back up plan in mind, just incase the first idea is a no go.

If you don't have a sense of humor, you better not have this surgery. You'll need it and then some, plus we all need it too!

 

[nngbwh]

Just want to welcome you aboard the VR family. There are plenty of expertise here that will answer your question.
Start picking their brains.

 

[DavesMom]

Hi and welcome!

I was 42 when I had my AVR/aneurysm repair. I had no qualms about going with a mechanical since this was my second OHS and I wanted to avoid another one, if possible. I believe it's also less time-consuming for the surgeon, which is a good thing since scar tissue gave my surgeon some difficulty. Of course not everyone has this problem but scar tissue can make re-ops more difficult.

My recovery went smoothly. I stayed with family for several days and needed a chauffeur for a few weeks. I went to cardiac rehab for a month and think that was a great help in getting my strength back.

Maybe I'm just lucky but I've had no problem with warfarin. It's been rare that I've needed to be tested more than once a month. You don't have to worry that much about what you eat and drink - the key is to just stay consistent. I'm not a sports person so I can't vouch for bruises, bumps, etc, but I've taken a couple of good falls and not had a problem.

Again, I'm lucky because I never hear my valve. This is surprising since I'm a small person. I've always slept with a sound machine at night so never hear it then either.

As others have mentioned, a bicuspid valve might make you prone to another aneurysm in the future. The surgeon fixed an aneurysm when he replaced my valve in '99, but I now have another one in the ascending aorta that measures 4.5 cm. This was only picked up with a CAT scan that I asked my cardio to do - it had never shown up on any of my yearly echos.

It is a personal decision and I wish you the very best of luck! Definitely keep us posted.

Cheers,
Michelle

 

[MarkU]

Not a lot to add to the above, but to share my experiences:

I had a bicuspid aortic valve that was first diagnosed when I was five years old. Had no restrictions on my activities and was active and participated in sports my entire life. I had two offers to play Division III college football and wrestled my freshman year in college.

I was asymptomatic until just after I turned 47, when I started to develop shortness of breath, chronic fatigue, and fluid build-up in my lungs to the point where I couldn't sleep laying down.

I had valve replacement surgery on 12/15/00. I chose a mechanical St. Jude valve to minimize the probability of repeat surgeries down the road. My surgery went well: I had surgery on a Friday morning and was discharged the following Tuesday morning. I was "functional" about four weeks post-op, but I didn't feel 100% for about nine months afterwards. That was a bit frustrating as I had to learn to pace myself and not do too much too soon. Took a lot of naps that year.

I had been an avid weightlifter prior to my surgery, but afterwards my cardiologist advised me to pursue more aerobic exercise. One thing led to another and I ended up doing my first sprint triathlon almost exactly three years after my surgery at age 50 and did my first half marathon last year at age 55. I still love triathlon training and try to do a 2-3 triathlons a year along with a couple of 5K or 10K road races (I'm a slow but steady runner). I try to run 2-3 miles three days per week and can knock out 2000M swim sessions at the pool and 25 mile bike rides on a regular basis. Any deterioration in my athletic ability has been attributable to my age rather than anything with my heart.

Coumadin hasn't really affected my daily activities or routine. The only time it has been a hassle is when I've had to do Lovenox bridges in preparation for colonoscopies.

I have no regrets about anything. I feel very lucky and blessed in my life. In fact, I enjoy the fact that I still engage in an active lifestyle and strenuous exercise when most of my "healthy" peers have become couch potatoes.

Good luck,
Mark

 

[Dale 1]

Hello and welcome,

I had OHS to replace my biscupid aortic valve and to repair an aneurysm on 11/2/09. I chose a bovine tissue valve, based on the advice of my surgeon and my concerns about coumadin. I'm a real klutz, and I was afraid I'd walk into a wall and do myself serious harm. Maybe this was unfounded, but I don't regret my choice of valves. I will have to have it replaced in 12-15 years. My surgeon told me that there's a 95+% chance that he will be able to do the replacement via catheterization, and not OHS.

I have to say that I, too, feel so much better than I did in the six months or so before my surgery. I'm not fully healed yet, five months later, but I'm pretty darned good!

 

[Kathleen]

Welcome from a fellow Minnesotan. Wanted to wish you luck in your upcoming surgery. I have been with Mpls Heart and Abbott Northwestern for my surgeries for the last 31 years. I chose to have two mechanical valves put in 25 years ago. It was my second surgery and did not want to put myself and my family through another surgery. The surgeons in MN are wonderful as is the all important aftercare.

 

[Doug]

Welcome to the site. I went with the On -X because I plan on trying to outlive it. Plus, studies are being done to determine if On-X valves will require as much or any anti-coagulation in the future.

After you decide what you want, check with your surgeon and see if he/she has experience with it and what their opinion is. Ask your medical providers a lot of questions and keep asking until you are happy with their answers.

 

[Bill B]

AR - Definitely ask the surgeon about your aorta. A bit of the root can be seen on echo, but a chest CT scan with contrast is necessary to evaluate it since the aortopathy can involve varying segments of the aorta. This is me - big root, big arch, otherwise OK. Even with the CT, the extent of grafting needed cannot be precisely known until the surgeon can directly evaluate the condition of the tissue in surgery.

 

[kpearse]

I had a bicuspid aortic valve. I only found out by chance. I was told I could have a tissue or a mechanical valve. I went with the mechanical, I only wanted to do this once. My life has not changed one bit.

 

[ARGreenMN]

Quick update. Surgery now scheduled (May 4). Have been compiling a list of questions for my surgeon. Now leaning heavily to mechanical, thanks to many of you - especially Ross who tells it like it is, and I appreciate that . One of the questions I've got on my list for the surgeon is whether I'm a candidate for the On-X. As much as I now think I'm going to be "ok" on Coumadin (again, thanks Ross and others for recommending I read more about how it's not really that bad) I still think I'd like to have some hope someday I can get off it. Which is what it sounds like On-X may offer down the road. The parts of being on Coumadin I'm still not fond of (I know, you'll all call me a baby) is I hate needles.. So the periodic testing won't be fun, and if the Lovenox stuff (still trying to figure out what that is exactly) involves needles, I won't like that either. But I'll buck it up and be brave on the needle thing - because like many of you have pointed out, OHS is nothing to sneeze at, and a second one is to be avoided if possible. Also going to ask the surgeon if they already tested for dilated aorta (and/or connective tissue disorder, if that's different). They told me at the end of the angiogram that everything else looked good, but the valve is heavily calcified. So maybe they already tested for that and it was ok? I'll find out when I call him (probably tomorrow). Just a side question - why is everyone saying you have to specifically ask them to test you for that - why wouldn't they just automatically do that??? Seems odd to me. Ok, that's about it for now. Will keep y'all posted as I get closer, do more research, have other questions, etc. And I'm hoping I'm going to be able to take my laptop to the hospital and will feel up to posting on here within days after the surgery (I know, hopeful thinking). Which reminds me - have any of you seen the Utube videos that guy over in England made before and after his surgery? He's showing off his scar within days of the surgery, then a couple weeks later, trying to calm everyone's fears, etc., saying it wasn't all that bad, etc. Made me feel MUCH better after watching it. Be back soon, and thanks everyone for everything!!!! Won't be a stranger!

 

[ARGreenMN]

Oh, and if anyone has thoughts on some of my other questions I'll be asking the surgeon, fire away. Here they are.

1) I've had a cough (tickle in my chest, and cough up clear phlem) for a couple weeks now (maybe 3). Been taking Mucinex DM for 7-10 days, and it's gotten a little better, but still hanging on. This stuff has always hung on a long time when I get it (after a chest cold, when I've got allergies going on, after playing basketball, etc.). I'm wondering if this could be related to the bad valve? Will it be a problem during surgery? And will it get better after the new vavle?

2) Wondering if minimally invasive surgery might be an option? Sure would be nice not to break my breast-bone if don't have to, and a smaller scar would be awsome! I think it's worth asking anyway... Just wondering if this is something that some surgeons are comfortable with, others not. Or does it depend more on exactly what you're having done (I think "all" they're doing to me is replacing my bi-cuspid aortic valve - unless we find out I do have a dilated aorta or something).

3) Will I be able to lift weights again down the road (I'm assuming not for 6-9 months, but maybe after that)? I'm even going to ask him again if I can lift between now and the surgery. My cardiologist recommended against it, but it seems like that would be less stressful on my heart than having sex, which he said was ok... And what is the risk - that I'll have a heart attack? To be honest, my cardiologist told me not to lift leading up to the angiogram, but I got antsy and did anyway - thinking if I'm gonna be down and out for months, I want to look as good as I can... Also, is it ok to mow the lawn, and stuff like that between now and the surgery? Need to get the yard and house clean cause I won't feel like it for weeks/months after surgery.

4) Lastly (for now) wondering if it would be worth asking about the Ross procedure?

 

[Ross]

1. Could well be valve related, but without diagnosis, couldn't say for sure.
2. I really don't think MIVS is an option for you. Ask anyhow.
3. I'm sure you'll be able to lift down the road, how much , you'll have to wait and see. Just don't be Arnold and start lifting right away and blow your new valve out.
4. Personally, I wouldn't consider a Ross. I know many will disagree, but I've seen too many fail, too soon after.

You can have any valve you want. It is, after all, your body and life. Don't get an On-X for the simple HOPE of no anticoagulation at some point. Don't even think in terms of WHAT MIGHT BE down the road, but make the choice based on how well the valve suits. Far too many people are doing all this stuff in hopes of avoiding anticoagulants and in my opinion, Coumadin is going to be around a lot longer then anyone realizes. There is always hope, but I've been hearing this same thing for the last 8 year.

You hate needles? Brother, I've been poked so many times that you can't find a vein to poke anymore. I still have to get poked, but not for my INR. That's where home testing comes in. It's also possible for you to find a finger stick clinic near you, if you can't get a monitor of your own.

Any surgeon worth his medical license, will order a CATSCAN as part of your presugerical exam and take a hard look at your aorta. You should not have to ask them to check. Do it anyway to satisfy your own mind that it was done!

For most peole, surgery isn't all that bad. Granted, the first 3 days really suck, but get past that, put up with some sternal pain for a few weeks and you'll be fine. It's much less worse then a hip replacement is on the pain scale. Hard to believe you can have a sternum sawed in half and not experience a whole lot of pain, but that's the truth, it's just not that bad.

 

[Lynlw]

Oh, and if anyone has thoughts on some of my other questions I'll be asking the surgeon, fire away. Here they are.

1) I've had a cough (tickle in my chest, and cough up clear phlem) for a couple weeks now (maybe 3). Been taking Mucinex DM for 7-10 days, and it's gotten a little better, but still hanging on. This stuff has always hung on a long time when I get it (after a chest cold, when I've got allergies going on, after playing basketball, etc.). I'm wondering if this could be related to the bad valve? Will it be a problem during surgery? And will it get better after the new vavle?

2) Wondering if minimally invasive surgery might be an option? Sure would be nice not to break my breast-bone if don't have to, and a smaller scar would be awsome! I think it's worth asking anyway... Just wondering if this is something that some surgeons are comfortable with, others not. Or does it depend more on exactly what you're having done (I think "all" they're doing to me is replacing my bi-cuspid aortic valve - unless we find out I do have a dilated aorta or something).

3) Will I be able to lift weights again down the road (I'm assuming not for 6-9 months, but maybe after that)? I'm even going to ask him again if I can lift between now and the surgery. My cardiologist recommended against it, but it seems like that would be less stressful on my heart than having sex, which he said was ok... And what is the risk - that I'll have a heart attack? To be honest, my cardiologist told me not to lift leading up to the angiogram, but I got antsy and did anyway - thinking if I'm gonna be down and out for months, I want to look as good as I can... Also, is it ok to mow the lawn, and stuff like that between now and the surgery? Need to get the yard and house clean cause I won't feel like it for weeks/months after surgery.

4) Lastly (for now) wondering if it would be worth asking about the Ross procedure?

I wrote a big long reply but my computer ate it, so First I wouldn't do anything the doctors tell you not to do before surgery, they know your heart and what is safe or not safe. Not working out a couple months, really shouldn't make that much difference in how you look when you recover. BUt you could not even survive to have surgery, if you don't listen to what the doctors say. Chances are you could be fine, but people do die, usually not a heart attack, but depending on your heart, you could blow /rupture something or has major rythym problems.
My son has had alot of OHS and instead of saying don't lift more than so many pounds, he was always given the general rule of thumb, don't lift anything that makes you bear down or grunt.

It makes sense to ask your surgeon any things that you think you would prefer, to see if you are a candidate for the Ross procedure or a min invasvie surgery (BTW there are a couple kinds of min invasive, some still cut the sternum. BUT you really should make sure whatever you are having done that they surgeon you decide to go to has alot of experience doing them. There are not alot of surgeons that have much experience doing the Ross and experience really DOES make a difference when it comes to heart surgery.
I don't know if you looked at the info at the Cleveland clinic site? They have alot of helpful info about the different surgeries, valves and diagrams (and videos i believe) of different min invasive surgeries http://my.clevelandclinic.org/heart/disorders/valve/aorticvalvesurgery.aspx

oh and lovenox is basically something you need if your INR is too low and most likely you only need to use before and maybe after, different medical procedures when you have to go off coumadin. it does involve giving your self a shot in the abdomen every 12 hours.

 

[Ross]

Lovenox---The needles on these are so tiny that your barely feel a thing. This is my personal stash from about a year and half ago, when I had to have all my teeth removed.

 

[MarkU]

Whether, or when, you go back to weightlifting is something you should work out with your cardiologist. Mine had me quit for a while, in part because I had developed some enlargement of my left ventricle prior to my surgery. The soreness in my sternum also continued to bother me for about nine months post-op.
Fortunately the enlargement reversed itself over time and it was my cardiologist who actually encouraged me to start lifting again using moderate weights for high repetitions. I mostly do circuit training using machines these days, rather than free weights.
Good luck,
Mark

 

[karen14]

Hi ARGreenMN!
Just wanted to welcome you too! And if I could go back, I'd go for the minimally invasive surgery if I could, having heard great things about that. I'm sure all will go well for you in whatever you decide! Praying for your success & piece of mind, ~Karen

 

[colsha]

One other question you may wish to ask is whether the surgeon is on the (worldwide) trial of the use of Kryptonite Glue for the repair of the sternum. From what I've read on the net and also within the walls of VR.com, this method of putting the sternum back together following OHS involves a far shorter recovery time and much (MUCH) less pain.

Cheers
Col
--------------------
Coarctation Repair 12th August 1999.

Aortic Valve Replacement with St. Jude mechanical valve anad aneurysm repair 22nd February 2010. Now Dacron aorta from the new valve to the end of the Coarctation repair (over the arch).

 

[COLLEEN S]

Welcome. Not trying to be a know it all cause I don't ever think that, but alot of what you said needs clarified.

Bicuspid aortic valve since birth, diagnosed when I was 12. This is common to have since birth. I had mine since birth too.

Have known about the pig vs. metal decision for a few years now Its Porcine vs.Carbon...there is no metal involved.

The more open hearts you have the harder it is to come thru surgery ok. The second one is more a big deal than the first due to the anesthesia involved.

Im on coumadin (not called blood thinners here) and do not bruise easily, take my warfarin once a day, exercise and swim, and really do not limit myself due to coumadin. I have fibromyalgia and arthritis which actually limit me alot more.

By getting "your fun out of the way" I guess those of us on warfarin are not supposed to have fun anymore?

You will have a catheter coming out of your penis after surgery. Once you go home, yes you will need someone there for at least a week if not 2. Do you have an aneurysm also?

 

[COLLEEN S]

, I went with tissue.
(Bovine Tissue) Valve - 25mm


Usually when one refers only to "tissue" it means human cadaver tissue. So when I went down and read Bovine, well you see the confusion.

 

[ARGreenMN]

Thanks for clarifications

Thanks for clarifications

That post you were replying to was when I was a rookie in here - was innocently calling coumadin a blood thinner (I know better now). Your other clarifications are points well taken too (mechanical, not metal, etc.). I've learned a lot since that post!

The "get the fun out of the way" comment was because of the changes I was afraid I'd have to make to my lifestyle with the mechanical option. The last few years, in addition to fighting a weight problem and finding that salads help me keep it under control, I've been having quite a bit of "fun" - sexually active, drinking two or three nights a week (and not just 2 or 3 drinks) and have been kinda vein (so didn't like the idea of possibly bruising easily). Plus, I'm afraid of needles... So, when I was first starting to research options (and still very naive about all this) I was afraid I would have to dramatically change my lifestyle with the mechanical valve option. That's why, initially, I was thinking I might rather go with the pig or cow option - live my "normal" lifestyle for a few more years 'till it wore out, then switch over to mechanical at that point. But Ross and others (including my surgeon and cardiologist) helped me see the light - you do NOT want to have more than one OHS if you can avoid it (even though these days, they typically go very smoothly).

I ended up going with the mechanical option (St. Judes Regent - INR range between 1.8 and 2.2). Had my surgery 12 days ago and am doing great (surgery and recovery both going very smooth).

I'm still planning on having plenty of fun, I'll just have to make some adjustments... 3 drinks when out with the boys instead of 6 or 8. Adjust my coumadin when on salad diets. Not sure how to "work around" the beta blocker yet as far as sexual performance (on 100 mg, hoping I can get weaned off that eventually) but will figure something out. So I apologize for insinuating those on coumadin can't have fun! I was just naive!