New member- some surgery/recovery questions

[aussigal]

Hi again LC...hows about you go have a read/search through the active lifestyles area here and see what the tough-guys get up to...I'm sure you will find plenty of "male-activities" there to keep you going!

Good Luck with it all...

 

[TenPly]

Hey, I'm back. Ive been thinking alot on valve selection and I was pretty even until someone made the point that I dont know where my financial status/medical insurane will be, in 15yrs and how difficult it will be to get a replacment done, and since Im so young I might as well get it done for good. So I started to lean towards a mechanical valve, but then I started to think. Im going river rafting in a couple weeks. Will I ever be able to go again or is the risk of head injury to high? What about dirtbikes/motorcycles? Will a helmet be enough or will I have to avoid those too? How careful of head injury will I have to be?

If you go for the mechanical valve, you really won't have anything to worry about as long as you take your recommended dose of Coumadin daily and get your INR tested when you're supposed to. Keep your diet consistent and you should be just fine. I had my aortic and mitral valves installed last year when I was 21 and I'm quite active too. The Coumadin hasn't changed my lifestyle whatsoever. Aside from doing the things I mentioned, I still enjoy the same activities I enjoyed before my surgery. All you really have to do is be a little more careful that's all. Don't go and do something that's obviously gonna cause you to get hurt badly -- like say, kickboxing.

 

[LaughClown]

Well, my mother called me yesterday and said that in order to get the full coverage (50k insted of 12.5k) I need to take 6 credit hours to qualify for the next semester. So apparently I have to take two classes, but the doc said I'll probably get the surgery a couple weeks into the semester. How soon do you think I could get back to classes if they are easy generals, one class a day? I could probably lose three maybe four weeks and still get by. I am going to sign up for medicaid since Im eligable, but I dont know how much that covers.
Boy, so much for a relaxing recovery.

 

[mtkayak]

As far as being active. I have a mechanical valve and I whitewater kayak every weekend. I love adrenaline sports and I don't plan on quiting any time soon! I've had a small cut and busted a blood vessel in my hand after I hit it VERY hard against something about 3 months after surgery and the bleeding stopped, it just took a little longer. The only time you really have to worry about bleeding is if you have internal bleeing or large deep cuts on the skin that you cannot apply pressure too. If you can apply pressure to the wound then the bleeding will stop. You will just bleed a little longer than someone who doesn't take Coumadin. That's the best way I know to explain it. I always carry a small first aid kit when I'm doing outdoor activites. That's the only thing that has changed in my life. I take Swiftwater Rescue courses and Wilderness Advanced First Aid classes as well. Education is key and can prevent most accidents. A lot of people (without heart conditions) take these courses too so it's not like I'm doing anything different than they are.

 

[mtkayak]

I would like to add one more thing. Since everybody is being so blunt and to the point about why they made the valve selection they did. I will do so as well. Quite frankly, I don't ever want to go through that **** again, pardon my language, but that's how I feel. I didn't choose to have a congential heart disease but I did. I didn't choose to have surgery because I had wanted too, I did because I had too. If there is any possible way I can prevent it from happening again, your damn right I will choose it. OHS is not fun and I don't mean to scare anybody is in the waiting room. It's just the cold hard truth. If you can say you had fun during your hospital stay and through your months of recovery then your twice the person Iam I just can't imagine having to live life not knowing when my next surgery will be.

 

[LaughClown]

Ok, I had my MRI yesterday. It was my first time and definitely an interesting experience. They had me hold my breath a bunch of times, shaved a patch off my chest, and injected me with gallium (or galinium) for contrast. The whole thing took about an hour and when it was finally done they said I could go. Well, I'd been waiting two weeks for this so I asked what they doc watching the mri could tell me. He showed me the pictures they took and said there was "a little narrowing" but said we usually can take a little narrowing. And said there was a little leakage in the av, but said he had to do some measurements first to check LV size and ef (46% on the echo), and said I could call my card on monday. So more waiting, yippee.
One question I have, he said there was only a little narrowing at my coarc, but because of my BAV and my past repair, do you think they will just repair the coarc now along with the aortic valve?
Also, he seemed to indicate that the problem wasnt too urgent, but my card said after my echo that Id have to get AVR very soon. Is it common for MRI's to overturn echo results? Or do you think they will go on as scheduled because of past info (physical signs of enlargement etc)? I realize that its specific to my condition, I guess Im just sick of waiting. Thanks.
LC

 

[tobagotwo]

A couple of thoughts...

With your early age of problems with your BAV, and your coarctation, you are probably not a good candidate for a Ross Procedure.

Sounds like you may be able to push back the surgery some. In most circumstances, an MRI trumps an echo. If the results aren't consistent, I would insist your cardio get you in for a TEE or a cardiac cath to verify, if he insists you need surgery right away.

My personal take is that when you do go in for surgery, you should insist on having the coarctation taken care of during that surgery, and insist on being sure of and correcting any possible aortic aneurysms as well. "Well, it doesn't look bad enough to do anything with it yet" is usually followed six months later by, "You're going to need surgery again, very soon." Frequently, disturbing one part exacerbates any problems with the other parts of the system.

As to your valve choice, there have been a couple of people who've opted for a tissue valve at a young age, just to sew some more wild oats. The results have been mixed. While I like tissue valves, since you've already had surgery, and may need more for your aorta, I would think it best for you to avoid any extra surgeries that you can. That means carbon (mechanical).

It's not likely at your age that you'll get anything like twenty years on a tissue valve. Ten is likely far closer to reality. You'd have to be extremely strongly motivated for a tissue valve to be a reasonable choice for you.

Best wishes,

 

[davidfortune]

Laughclown,

Get a second opinion before surgery. Errors "discrepancies" in echo results and interpretation can lead to unnecessary/untimely surgeries. I had a card tell me two years ago I needed to have AVR immediately. Second and third opinions from larger facilities with more prestigious cards said not yet.

They never flat out said the first guy was wrong but they stated that the initial echo results were consistent with second and third echoes and we do not believe that surgery is warranted at this time.

Lots of things can affect echo results/interpretation. I would not let someone cut without more than one cardiologist looking at more than one test in agreement that cutting is necessary and timely.

Other members have also had bad interpretations almost lead to untimely surgery.

As for valve choice - I would think that a thoroughly researched, informed decision requires getting reasonable input from good doctors, thoughtful VR.COM members, and caring family, as well as dutiful personal research. Reoperations carry risk (this is a negative for tissue valves particularly in young patients), warafin carries risk, and Ross carries risk. Some risks weigh heavier based on your situation (medical and other) which we are not fully aware of. This changes the "right" answer for every person.

Good luck (hopefully postponing your surgery)

 

[LaughClown]

Update

Update

Well, it has been a long day. I called the people in charge of my insurance and they finally decided that a student on this insurance cannot under any circumstances take two semesters off in a row, and that I must take at least 6 hours of classes to stay on. so i think Im going to take two internet classes. Ive heard of some that sound interesting, are easy, and i can do most of the class at home. hopefully this will work out. I also got a call from medicaid whom i applied with a few days ago. they said at this time I am not eligable from any program because I am a youug adult over 19 without a child. Apparently the one I normally would apply for is not active right now and no one knows when it will be. I also called my card and got his nurse who said there werent records of my ct (i got an mri) and told me to call my other doctor in the morning for the results. Im not sure if she really didnt have it or if she misread my file cause I have never had a ct scan. Maybe they scheduled me for one, who knows. So the waiting game goes on to find out the timing of my surgery. I also got almost all of my cd's stolen this morning (I have 8 of about 160 left). Its been a long day.
On a good note, though, a friend of mine that I work with told me she applied me for a company charity fund why the corp matches dollar for dollar any donations made by the local restaurant. She is working with friends from a nearby franchise as well and another friend whose job is fundraising to get tips so the company has to match more. This is a God send since even with the 80% coverage from my insurance, on a 100k+ surgery that still leaves over 20k+ to pay. I was hoping medicaid would help with this, but since Im not eligable this charity is going to be a life saver (financially). This completely saved my day. Thank goodness for good friends and everyone who supports us through these things.

LC

 

[aussigal]

Hang in there LC...
for someone who has had a rather ordinary day you are doing splendidly...
hope the ratbag who pinched your CD's gets caught...

I have had MRI's and CT's and both are pretty darn good...and usually are more reliable when it comes to measurements if they were done on the new U-beaut machines .

Tobagotwo (one of our most respected members) has given you lots of wise advice and things to consider...

I do hope they remember its your MRI theyre sposed to be making comments about and that you get some more solid information shortly...Its a pain in the neck doing the "waiting-room-thing"...at least you have all of us to bounce ideas and thoughts off...

 

[mtkayak]

As far as insurance, I wouldn't worry as much. Insurance companies usually negotiate the price of the surgery down, in some cases it's a considerable amount. You may have an "out of pocket" maximum you pay as well. My insurance company (BCBS) negotiated a 85k surgery down to 12k. I have 85%/15%. I do have a maximum "out of pocket" of $2000 though I guess my point is that you will probably not be responsible for that much money. I'm not sure how student insurance works.

 

[LaughClown]

Well, I finally talked to one of my docs yesterday. She said that the MRI basically said everything the echo did and that it should go on as previously planned. Nothing is exact yet because my card is out of town until tues and I am deciding dates of surgery on wed. After talking to the other doctor though I am either having the surgery the end of september or beginning of october. Again I should be getting the exact date wednesday. Until then I am checking with my teachers to find what my schedule will be like.

 

[StretchL]

I just can't imagine having to live life not knowing when my next surgery will be.

This is a great thread... especially for someone like me... considering the Ross Procedure v. the mech valve.

What I worry about is going through life not knowing when a little embolism is going to kick out of that valve and leave me with a stroke... and I don't mean a stroke of good luck.

My family has a history of heart disease and stroke. I'm 43, otherwise very healthy, and the Ross seems like a good option, especially with a very experienced surgeon.

 

[davidfortune]

Laughclown,

Get a second opinion before surgery. Errors "discrepancies" in echo results and interpretation can lead to unnecessary/untimely surgeries. I had a card tell me two years ago I needed to have AVR immediately. Second and third opinions from larger facilities with more prestigious cards said not yet.

They never flat out said the first guy was wrong but they stated that the initial echo results were consistent with second and third echoes and we do not believe that surgery is warranted at this time.

Lots of things can affect echo results/interpretation. I would not let someone cut without more than one cardiologist looking at more than one test in agreement that cutting is necessary and timely.

Other members have also had bad interpretations almost lead to untimely surgery....

Good luck (hopefully postponing your surgery)

Just reinforcing the critical necessity of a second and maybe third opinion from different set of docs before cutting. Same card reviewing echo and MRI may tend to see the same result. Every doc has a bias. He/she may be right but may not be right.

Check out the following thread from spodeb regarding her experience

http://www.valvereplacement.com/forums/showthread.php?t=17368

Your doc may be right but best to be sure since this isn't something that can be undone. Maybe now is the time, maybe later is the time, maybe never is the time - best to be sure since this isn't something that can be undone.

Good Luck,
David

 

[greg]

Laugh, I had a mechanical AVR on 11/18/03. I was 53 then and am quite sure you will recover soon enough to take classes. I was back to work in 4 weeks and riding ATV's in 8 weeks.
As for the type of valve, I would not change my St. Judes for any kind that requires repeat proceedure....ever. Coumadin has not stopped me from doing anything I did before. I still ride ATV's as often as possible, hike, fish, hunt and just about anything else. One thing, I had already got too old to play softball. Maybe at your age you would want to consider how much contact type sports you play. Bottom line for me is to just be reasonable and take one pill a day (and yes, it is one pill a day for life).
By the way......... Welcome
Read, study and learn all you can.
You will be OK.. Keep us updated please.