Time is drawing near......

[MikeHeim]

I catch myself waking up at night thinking I can't breath good, is this a normal thing?

I can tell you for sure that this is not a normal thing. Prior to my surgery, I woke up on 2-3 occasions where I had to struggle to take a breath and couldn't until I sat up. This was BY FAR the most scary symptom for me, and even though it only happened a couple times, I will certainly never forget it. This is a certain sign of heart failure and something you need to mention to your doctor right away.

 

[rangerscat]

To all who posted so far.....

To all who posted so far.....

I would like to thank you all for the kind words and encouragment. It means the world to me. I hope that I can do the same for those in my boat when I'm recovered and back to normal. I tend to make this experience the best I can, and try hard to do all I have to in order to come out of this with a positive outlook.

Thanks,

Rangerscat

 

[Karlynn]

I would like to thank you all for the kind words and encouragment. It means the world to me. I hope that I can do the same for those in my boat when I'm recovered and back to normal. I tend to make this experience the best I can, and try hard to do all I have to in order to come out of this with a positive outlook.

Thanks,

Rangerscat

Great attitude! This is a life-saving surgery, not a life-threatening surgery. Without it there would be no hope.

I don't know if you know this from your browsing, but we have the longest living valve replacement recipient as one of our members. RCB was a child when his Mom took the risk and agreed to a surgery that no one had survived yet. We also have another newer member who found us after 40 years of living with one of the first valve types installed. There has been a great amount of science that has gone into this procedure that gives us all an optimistic outlook on life.

 

[Susan BAV]

...I would really like to hear more from you and how you are doing with your choice of the tissue valve. I am really interested in hearing about your success and why you picked the tissue valve.
Hope to hear from you soon...

Hi John -

I've only had this new valve for a little less than four years; so far so good and I feel amazingly better with the new valve. I asked my cardiologist why some tissue valves fail sooner than others and he said that oral health is one big factor.

For many reasons, I didn't want to have a mechanical valve and I didn't want to be on Coumadin. That said, however, there is no guarantee that even if you go with a tissue valve that you won't have to take Coumadin, at least for a brief time. Lots of people have temporary post-op A-fib and have to take Coumadin for awhile after their surgery; I did too. I'm only on aspirin therapy now though.

There are a few members here that are quick to exclaim that Coumadin is no big deal. (Some of them have had their mechanical valves for 10 or 20 or more years and either weren't offered a valve choice then or the tissue valves weren't lasting as long then.) I was only on Coumadin for three months post-op and found it to be a big nuisance and I couldn't reach and stay in range no matter how hard I tried. You can browse through the Anti-coagulation Forum and see various experiences members have on ACT (anti-coagulation therapy).

The most recent comparison studies of life expectancy, which I think you can find on the "sticky" at the top of the Valve Choice Forum, show that the average survival of tissue valve people with re-ops is about a wash in comparison to the average survival of mechanical valve people with the possible complications related to anti-coagulation.

So valve choice can sometimes be related to what an individual personally feels is a better quality of life. But one of the downsides of the whole thing is that there are no guarantees. Tissue valves and mechanical valves fail sometimes. Sometimes sooner and sometimes later and sometimes there are other catastrophic medical issues related to the valves. Or scatastrophic medical issues...

Also read about the On-X valve. There is another procedure, a Ross procedure, which involves two simultaneous valve replacements but it may not be the best choice for a bicuspid who may have connective tissue issues.

Try not to feel too stressed as you ponder your choices and remember that there may be more than one correct choice for you, John; it's not really a "true or false" kind of choice. Also, be sure and find an excellent and highly recommended surgeon that you are comfortable with and tell him what you want and see what he says and ask him what kind of valve he would want if he were you.

Sorry for the novel. Take care and post again.

 

[Susan BAV]

Hi Treym - Welcome to the site; glad you found it! When did you have the Ross procedure? How'd you do healing from that one? Take care and post again.

 

[Mary]

Well this is my first post. I'm right there with you. I had my TEE and they skipped the Heart Cath. (yea!) and I met with one surgeon already. I'm meeting with another one later this week. I'm going to have AVR as well and I Mt Bike as well and I Live in Boone, NC (great biking) I am also curious about mechanical valves. This will be my second AVR. The first one was a ROSS procedure and now I'm regretting that choice a little. Of course I guess I'm a little to blame, they think that when I wrecked on the skateboard halfpipe and broke my scapula that the fall might be what caused my valve to start leaking again. Bummer! So now they say that if they can't repair it then a mechanical valve is the way. I don't want cumodin but I also do not want to have to go in again. I don't have any answers but a lot of the same questions! About beers too.

Good luck

Hey Trey!
Welcome to the forum, and I'd like to suggest you start a thread about your previous Ross and introduce yourself on the Heart Talk forum!
I would like to hear more about your Ross procedure and find out who performed it, and I think others will too!
Glad you joined!

And Ranger, it's great to know you've joined the VR forum!
Once you get a surgery date, please post and we'll put you on the surgery calendar!
Best wishes,
Mary

 

[rangerscat]

Good information

Good information

Hello Susan,

That was some good information. I really am leaning towards the tissue valve, but will have to see what the surgeon has to say. I really don't know if he will be for it or against it. I'm thinking that if I go with the tissue valve, that maybe by the time it is due for replacement the technology will have sky rocketed and there will be some new and advanced way for surgeons to replace it without the full OHS. Things are really looking up in this field and I really have hope that will be the case. I will talk it over with my surgeon next week to see how he feels about it.

I'm not real knowledgable about all of this yet, but I plan to be by the time it is all said and done. You seem to be very knowledgable and I may lean on you if I have further questions. If there is anyone else who is reading this and would like to throw in thier input, please do, it would really help me.

Thanks,

John

 

[Granbonny]

Just wanted to welcome both of you...John/ Treym.....Treym ..had a condo on Sugar Mountain . outside of Boone,N.C. . for 10 years. ..My children learned to Snowski there at an early age. We always enjoyed the Fall, too... Grandson will be atttending a wrestling camp at the college in Boone this July.....You really live in God's country.. .......Bonnie

 

[Susan BAV]

...That was some good information...I'm not real knowledgable about all of this yet, but I plan to be by the time it is all said and done. You seem to be very knowledgable and I may lean on you if I have further questions. If there is anyone else who is reading this and would like to throw in thier input, please do, it would really help me...

Hi again, John -

I'm glad it was helpful. I know what a relief it was to me to find this site before my valve replacement. And actually, I had been thinking that you already know quite a lot about the whole thing. Thanks for the nice words, but there are many here who know so much more than I do. You'll find lots of helpful information here, sometimes when and where you least expect it. Then, in your turn, you'll offer support to others also. Hope all goes well.

 

[rangerscat]

Grandson wrestling

Grandson wrestling

Hello Granbonny,

I read where you said you grandson is going to attend a wrestling camp in Boone NC. That is interesting, I am a HS,MS, and youth wrestling coach in my home town. I have been coaching for 8 yrs now, and love it. I would love to hear how the camp was after he attends. I'm always looking for future camps for my boys. We are not far from NC, just a about 2 hours from the state line. Where are you in GA? I went to Mountain Ranger Camp near Mt Yona, in Dahlonega. I loved it there, it is so pretty, just wondering how far from there you were.

Rangerscat......

 

[briansmom]

Rangerscat,
Just a note on your minimally invasive re-op question. Our surgeon told us that they are working on a tissue valve that can be done via a cath procedure instead of open heart. Unfortunately, he said that so far as he can tell this new procedure will NOT work for reops because the existing valve will not be able to be removed via this same procedure.
Good luck on your decision. Whatever you decide will be the right decision.

 

[Adam 12-21-05]

Yo Ranger,

Way to be a research vacuum.

Get all the opinions and information you can.

Our stories appear similar - age, valve issue, etc.

All the best with your choices. This is an amazing experience.

Take care,

Adam

 

[Lynlw]

Rangerscat,
Just a note on your minimally invasive re-op question. Our surgeon told us that they are working on a tissue valve that can be done via a cath procedure instead of open heart. Unfortunately, he said that so far as he can tell this new procedure will NOT work for reops because the existing valve will not be able to be removed via this same procedure.
Good luck on your decision. Whatever you decide will be the right decision.

I actually have been talking to Boston Children's hosp since Justin will be having his 5th heart surgery and wanted to see if any of the things they are working on have made it to clinical trials, like the tissue engineered conduits , out the pthe patients own cells, whcih is still a few years off. BUT they told me to have everything send to them and we talked about how they are starting clinical trials on replacing valves in the cath lab, BUT Justin isnt a candidate for that, only because he needs a conduit (tube) w/ a valve replaced , not "just' the valve. but it "seemd" like the fact it would be a redo wouldn't be a proble,m, I didn't ask alot of details, since it wouldn't help Justin, but I have to talk to them tomorrow, so will try to remeber if they are taking redos into the trials, Lyn

 

[rangerscat]

Thanks Adam

Thanks Adam

Thanks Adam,

I appreciate the confidence. I really am ready to get all of this out of the way and move on. I hope complications will be at a bare min.

Sometime when you get a chance, let me know how your procedure went and what you did to make things better for you as you were going through your recovery time.

Take care,

Ranger