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T

Traveler

Hi I'm new here and haven't quite figured out what the local customs are with regard to introductions. But you seem like a friendly group and reading through the various notes I feel like I know something about all of you.

I'm a 52 year old man, living with my wife of of 31 years in mid America (Iowa). We have two children both grown one in grad school and one in med school.

Like several people have written I'm still in the adjustment period and headed towards surgery fairly quickly. I have newly found biscuspid valve, severe aortic regurgitation, and an aortic aneurysm (5.0 cm). The aneurysm was found during a routine exam last May in which the Dr. suggest calcium scoring as a way to get a handle on my risk of heart attack. However I travel a lot and tend to ignore Dr's and so by the time I was told there was an issue it was September. I got the word by satellite phone in Mali that my cardiologist needed to talk to me immediately. They didn't say what it was about so I waited a week until I was back in the States to call him. In fairness I had been exchanging phone calls with my cardiologist for a couple of months on the day or two I'd be in town between trips. But I wasn't too worried I assumed he just had something routine to discuss and it could wait. In the interim I had full summer including trekking with a 70 pound pack at 16,000 ft in Peru, hanging out in Bolivia at 13,000 ft, as well as a number of other very physical trips.

So all of the sudden in early November when various test results start coming in, I can't carry a pack (in fact I can't carry much of anything), I can't travel to the third world, I'm wearing a med alert bracelet, and I'm going from one Dr to another ending up at the Mayo clinic (which I love). In the past two weeks I've been lurking here looking for help with the "which valve?" question and decided to follow my cardiologist's advice and go with a bio valve. A decision endorsed by my surgeon.

I have an angiogram next week and it still seems a bit unreal. I'm trying to schedule a trip to India 3 weeks after surgery but I'm beginning to realize through reading here that I probably can't blow off my cardiologist's advice. So it probably has to be cancelled - grump - but I'd be interested in your recovery experiences and thoughts.

So that where I'm at right now. Thanks for listening.

Mark
 
Hi Mark, and welcome!
When you write, "So all of the sudden, I can't carry a pack (in fact I can't carry much of anything)," I'm not sure if you mean lack of ability or that you are following doctor's orders. If the first, that is very similar to what I experienced. I went downhill very fast, to the point where I couldn't walk across the room without being short of breath. If that is your situation, I recommend surgery as soon as possible.
You'll probably recover perfectly, but planning a trip to India three weeks after surgery is a bit unrealistic. There are many different elements to the recovery, both physical and emotional.
 
Hi Mark and welcome.

Yes you'll have to reschedule the India Trip, but when you can go, you'll at least be able to do things! Unless your some hybrid that surgeries don't affect you, it's going to be a good 6 weeks or longer before you feel like doing much. It's hard to say since everyone is different, but at 3 weeks, your not going to be ready for much of anything.
 
Welcome, Mark.

Because it takes time for the sternum to heal, my doctors advised me not to drive a car for at least a month after my OHS. In addition, it takes some months to regain your strength (though you will). I would think scheduling an overseas trip just three weeks post-OHS would be way too optimistic. The folks at Mayo should be able to give you a more realistic assessment of when such a trip might be doable.

All best wishes.
 
Skip India for a few more months, at least. And if you get a mechanical valve, you will probably want to check your own INR with your own machine and self-medicate. They're evidently not inexpensive.

Hiking - one of my favorite things. I don't do hills very well anymore though. If it's level, I can trot for miles. But on some steep climbs, I have to stop and get more breath. I don't know why. And I don't think that's necessarily a common result of valve surgery. I didn't do hills very well pre-op either though, there towards the end.

Welcome!
 
welcome to the world of 'what in the heck has happened to me?'

Sorry about your trip. I won't even say don't go because I think you have got the message from the previous posters.

From your post, it sounds like you have a good handle on things. Never know what VR will add, (like, DON'T SNEEZE, after surgery) tho, so stick around with us.
 
Welcome to the community, Mark.

I think a trip to India 3 weeks post-op is pretty optimistic. Everyone is different, but at three weeks I thought walking around the neighbourhood by myself was a real achievement. I found the post-op recovery much harder and longer than I anticipated, although the OHS itself was not as bad as I expected. I went back to work full time at 12 weeks.

Good luck.
 
Welcome! You sound like someone who is accustomed to robust health. You will return to that, almost assuredly, so don't get discouraged. I too have children in college, 2 undergrads, and one in his second year PhD in Economics.

I think it is great to be on the same page with your cardio and surgeon regarding valve choice. Confidence is essential.

Nix on the trip to India. It will be too frustrating for you. You cannot drive, you cannot lift things, you cannot move, stretch, reach, push, pull, hug, lift yourself into odd places, etc, etc, for as long as you personally take to heal the sternum. Your heart would be ready (probably), your sternum would not. Why risk messing up the healing process for a piece of you (um, dead center!) that honestly needs about 6 weeks to mend?

Strong as you are, and fit as you are, perhaps you have seen this event described as being hit by a train. It isn't so much the pain as the exhaustion and the weakness. These are both things that are drug and surgery induced. You cannot really avoid them, they are simply a part of the landscape of this particular journey. I think many of us have found it best to just accept the fact that we are going into a forced R & R mode and must do our best to appreciate a slow progress and determined pace which honors the natural mending of the body.

Like anything, there are no guarantees that your heart or your system will like the surgery. Sometimes there is some complaining from other parts of your body as those parts adjust to the new perfection. You'll want to be in the States near doctors and hospitals familiar to you. Consistent care is important. For me, I had a "boring" surgery....nothing went wrong, easy in and out, no post-surgery problems save some annoying (and heavily attended to by several doctors) new but ultimately benign palpitations. Others have had more serious reactions to things. You just won't know until you get there. Think of it as your first overseas trek ever.....you've learned a lot since the first trek I suspect.

It is different for everyone. Be smart and listen to your doctor's orders on all of this, this time. Read the fine print!! You will be back to your normal self sooner if you follow their tried and true directions. Pushing too much has not proven to be successful.

Welcome to our wonderful community. We want to hear anything you want to tell us and help you answer any questions you may conjure up. It sounds like you've certainly gone to the right place for your surgery so you will be in excellent hands!

Marguerite
 
Welcome Mark,

Going from very active to "being a heart patient" can be very frustrating as you have found. Just be happy that they found the problems before it was too late.

It sounds like you have everything decided and all your proverbial ducks in a row (wonder where that line came from ;) :D ;) ). I am sure you are happy to have everything set and you can just try and relax and spend time with your family.

Yes, the trip to India will need to be postponed. Everyone is different but I would wait until at least 3 months post-op before I would even think about traveling to another country, especially one so far away.

Sending you my very best for a smooth surgery and a "boring" recovery.
 
Welcome Traveler !

Having a BAV and an aneurism caught my eye.

Be sure to ask your surgeon about his experience with Congenital Heart Disease. BAV's often have related TISSUE issues (which includes aneurism's) that can make surgery and especially sewing in of the new valve 'trickier' than for non-BAV patients. If your surgeon is not experienced in these issues, you may want to select another.

I'm glad to see that you are going to the Mayo Clinic. It is rated as the #2 Heart Hospital, behind Cleveland Clinic.

Note that at 6 weeks, the sternum should be healed to about 85% of it's pre-surgery strength. It takes 12 weeks to be fully healed. You should be given a weight lifting / pulling / pushing restriction (5 or 10 lbs) for several weeks with a gradual increase up to 40 lbs. following surgery. It takes a LONG time before you will be allowed to heavier loads. HEAVY LIFTING after Valve Replacement is NOT a good idea. I believe Arnold Schwartzneger blew out a valve trying to do to much and had to have another replacement surgery.

'AL Capshaw'
 
Hi! Sorry to hear about your diagnosis. Like the others said India at three weeks is completely out of the question, but you will be able to go in a few months.

I just had my surgery at the Mayo Clinic four weeks ago and the care I recieved was excellent. Who are your surgeon and doctor's there?

Good luck and keep postint, waiting is the hardest part.



Brad
 
Mark, welcome to the Forum!
I think you've got a good grasp of what's going on, and I assume since you've had an angiogram surgery must be scheduled fairly quickly.

If you haven't looked at the BAVD page, you might want to take a peek. I have discovered, that for me, the major issue with my BAV is, "It ain't over till it's over!" I reluctantly accepted the need for valve replacement surgery, but I was not prepared to deal with the residual issues that often accompany bicuspid aortic valve disease.

When you get your surgery date, let us know and we'll put you on the calendar. Once again, welcome!
 
Your trip to India might be worth it if you were to have your valve surgery while you were there. It's becoming a more common practice to fly to India to have heart surgeries because of the greatly lower price tag for the operations, much as people with complicated dental work are vacationing in Budapest to have it done.

There are carbon and tissue products that can replace the root, the valve, and much of the ascending aorta in one unit. The most common carbon (mechanical) setups of this type are the St. Jude Masters Series valved grafts, either the carbon/velour or the carbon/gel-polyester type. The most common tissue all-inclusive is the Medtronics Freestyle. Either is an excellent choice.

http://www.sjm.com/devices/device.aspx?name=SJM®+Valved+Grafts&location=us&type=18

http://www.medtronic.com/cardsurgery/products/free_index.html

There are also options for the surgeon to piece together a setup of other components during surgery, if he is the adventurous type. This would increase your time on the pump, and many surgeons are reluctant to do this.

Welcome to the site. In some ways, not having a lot of time to think about it is a blessing, as the waiting is often the hardest part.

Best wishes,
 
tobagotwo said:
Your trip to India might be worth it if you were to have your valve surgery while you were there. It's becoming a more common practice to fly to India to have heart surgeries because of the greatly lower price tag for the operations, much as people with complicated dental work are vacationing in Budapest to have it done...
Click to expand...

Of course any necessary followup visits might be a bit pricey;)...
 
everyone - thanks for all the great comments

JimL said:
Hi Mark, and welcome!
When you write, "So all of the sudden, I can't carry a pack (in fact I can't carry much of anything)," I'm not sure if you mean lack of ability or that you are following doctor's orders. If the first, that is very similar to what I experienced. I went downhill very fast, to the point where I couldn't walk across the room without being short of breath. If that is your situation, I recommend surgery as soon as possible.
Click to expand...

What I meant is that I'm following my doctor's recommendations, and respecting my wife's concerns. Initially (October), I was told "no weight lifting while we do some testing." I interpreted this to mean stay out of the gym - not a problem. Then I was told I should avoid lifting more than 20 pounds.

In November I was hoping to get some relief from this and asked about lifting at Mayo and was told that the best way to determine if something is too heavy is to notice if you involuntarily hold your breath while picking it up. The problem is that I hold my breath for almost everything I pick up. And so I'm beginning to feel like an invalid - it really complicates travel and so I've been ignoring it a bit. But the last round of testing, 2 days ago, indicated that aneurysm and regurgitation were worse so I need to behave for the next month. My surgery is 2/9.

However more than the lifting limitations, the med alert bracelet strongly recommended by my cardiologist because of my love of travel is driving me crazy. It's like wearing a cow tag. Anybody else wearing a med alert bracelet? Maybe I can toss mine.

Mark
 
Rob,

Thanks for the words!

RobHol said:
Welcome, Mark.

Because it takes time for the sternum to heal, my doctors advised me not to drive a car for at least a month after my OHS. In addition, it takes some months to regain your strength (though you will). I would think scheduling an overseas trip just three weeks post-OHS would be way too optimistic. The folks at Mayo should be able to give you a more realistic assessment of when such a trip might be doable.
Click to expand...

I think the advice from my cardiologist and surgeon are biased by my eagerness for things to return to normal. Because of this they tend to say "you won't harm your health if you travel 5 weeks after surgery but you'll be very tired," and "yes you can start walking the day you are out of the hospital but you probably won't feel like walking too far, but walk as far as you want to" and "you can return to work as soon as you want but listen to your body, you don't need to push it." These comments are helpful but not too helpful because they don't tell me what I can realistically expect. It almost feels like my cardiologist is waiting for after to surgery to say - well I didn't think you be able to do everything in the first three weeks but I didn't want to stop you from trying.

So I've read all 130 stories in the forum and much of the post surgery discussion trying to get a handle on what really might happen - but it seems pretty variable and kind of like the lottery. Do I have that part figured out?

Thanks

Mark
 
Mark. You're getting the idea!!

I think that for right now you REALLY need to listen to your doctors about taking it easy until February 9th. If you can't, perhaps you should move your surgery up. I don't think aneurisms are something to have wishful thinking about. They are very serious. Very.

As far as your recovery goes, chances are you are going to come through this beautifully. As you are mending, you will exhaust easily. I don't mean get tired. I mean run out of gas completely. They will have you walking laps in the hospital. You will walk alot as the days and weeks go by. Soon enough, and on your own schedule, your energy will return. It's major surgery. You just have to be paitent.

Start thinking patience. It will serve you well.

:) Marguerite
 
Yep,

Post surgery is a game of craps. Some recover very quickly (comparatively) and some recover more slowly. Very hard to predict who is gonna be who. In the hospital all the nurses said to me "Every BODY responds to surgery differently".

I've had a pretty good recovery. I had a pericardial effusion (fluid inside the pericardium) that slowed me down for a few days but overall it has been pretty good.

I'm just over 3 weeks out from surgery. For me, walking is easy. I can pretty much walk as far as I want. I no longer nap during the day. I'm working pretty much full time from the house (I can to most of my work online and via telephone). Today for example, I walked for an hour straight on the treadmill at 3.5 mph on a slight incline while talking to my customer service manager on the cell phone. HR never went over 115. I could have gone much longer but Priscila was ready to leave the gym. Came home, went to church, went to dinner with friends, and watch the crazy cowboy-seahawk game. I feel great.

However, I can't drive, can't lift more than ten pounds, don't dare sneeze, can't side sideways for too long, feel pain in my sternum when I cough (let alone sneeze), feel the nerve weirdness in my incision. I still get cold (like my 102 pound wife) which I was never cold prior to surgery (still anemic for a few more weeks I guess).

Would I want to be on a vacation right now? Hmmm. Maybe. Depends on where and what we would be doing. Would I think of scheduling a vacation 3 weeks after surgery knowing what I know now - NO. Primarily because not everyone recovers at the same rate and 3 weeks is really pretty early to be planning to feel great. If you do (as I generally do) that is a blessing but counting on it is risky.

By the way - I think some of the top advice I got here at VR.COM for post surgery is "DO NOT SNEEZE!!!!". Coughing or sneezing definitely reminds you that you had a major surgery and are still not completely healed.

Best of luck,
David
 
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