Need to make a choice by December 28th???

[Bryan B]

After explaining each valve he stated that, "he personally would be hard pressed to get a mechanical valve".

You know I asked my surgeon a similar question and he told me the truth...he said he didn't know, it would depend on the situation. So I said how about a loved one...say your brother? He said he didn't like his brother...then he smiled which told me he was not going to answer my question and that he was not biased towards which type of valve I ended up selecting. Unless the surgeon has a prostetic valve he can't really give you anything more than his "informed" opinion because he hasn't actually had to make that choice. You need to look at the pros and cons of each valve and base your decision on which valve you can live best with when it comes to the cons. As most members here that have mechanical valves will tell you, Coumadin has changed their life very little if at all. Others with a tissue valve will tell you they like the freedom of not having to get tested or possibly hear the valve ticking. Personally I didn't like either choice and went with door number three. I had a Ross Procedure...which like the others have pros and cons. I just happened to prefer those pros and cons better and I was lucky enough to be a good candidate for the procedure. But as hard as it is it still comes down to you having to decide. What you're doing is good...you're researching and getting advice from people who have chosen both types of valves. After that you are on your own soldier.

 

[harleygirl528]

Hi Zack!
First let me reiterate the many thanks that other members have extended to you for your service to our country! My husband is also active duty military (Navy) and I was also evaluated at Madigan Army Hospital myself on Oct 19 of this year, a date I will never forget. I was having an MRI for an unrelated issue when they discovered a 5 cm aortic aneurysm! Since the Navy Hospital in Bremerton doesn't have a cardiology dept I consulted with Dr. Havenstrite, who is the chief of cardiothoracic surgery at Madigan, but unfortunately due to the complexity of my case and where my aneurysm is located they could not do the surgery at Madigan so I have consulted with other surgeons outside of the military system. I also am looking at surgery sometime in January and I just want to let you know that I know exactly how you feel! The first couple of weeks I was so scared...I lived in constant anxiety and I did have Dr. Havenstrite give me a precription for Xanax, an anti-anxiety drug. But, once I got connected on this site and read about all the people who had gone through the same thing and come out on the other end better than ever, I started to feel better. I know it's hard, you feel so scared and alone, but believe me you will be amazed at the support you will get here!

In terms of the tissue vs. mech valve debate...you probably already discovered that everyone has a preference one way or the other and it is mostly based on their own experience and what they themselves chose...you won't hear too many people saying well...I went with mechanical but wish I had gone tissue....

I too am facing this tough decision and I am fairly young also (41 yrs) but the best advice I can give you is do a lot of research and decide what is right for YOU! I don't think anyone wants to be cut open any more than they have to but getting mechanical is certainly no guarantee that you won't need a re-surgery. I personally am not an extremely disciplined person when it comes to modifying my diet, I ride a motorcycle and I like to drink...(I know....all you mechanical valvers are going to tell me I can keep doing that) but in reality I will HAVE to modify my diet, my alcohol intake and....other things personally bother me about taking Coumadin....I say personally because that is the key word....It's what is right for YOU! Keep asking questions...everyone on here is a wealth of information but remember to take it with a grain of salt....it is very subjective....ultimately do what is right for you!

Remember, RELAX.....I have bought a lot of books and CD;s on relaxation, meditation, etc. There is a book called "Prepare for Surgery...Heal Faster" by Peggy Huddleston. It's great...an easy read, lots of info on relaxing, feeling calmer before surgery, recovering faster.
I'm just up the road from you in Silverdale, WA. Let me know if there is anything I can do for you or your family...we are in the same boat brother and ultimately you will find the most comfort from others experienceing the same thing! I also have kids and know how frightening this can be....but you will be fine! The success rate for your surgery is extremely high, as others have shared with you so just know that everything is going to be fine...believe that and start to visualize your perfect surgery and recovery...start seeing yourself now perfectly healed with a perfectly functioning heart!
Take care Zack....send me a personal message is there is anything at all I can to do help you! I am facing surgery myself very soon but I would be happy to support you or help you in any way I can!

 

[twinmaker]

Hey Zach and Welcome to the site! You and Lori (who just posted before me) won't believe this but, I was diagnosed with my valve problem at Madigan in 1974!! My husband was stationed there. Back then, they didn't even do OHS at Madigan. We were air-lifted down to Letterman Army Medical Center at the Presidio for my surgery. Madigan has certainly come a long way. Anyway, I had a valve repair in 1974 and then a replacement in 1981 with a mechanical. That same replacement is still going strong 26 years later. I have no experience with the other valves like the On-X but many others here do. As far as being scared...we understand. If you feel you need something to take the edge off before the surgery, I'm sure your doc will be able to give you something. Just talk with him about it. I know making all these decisions are hard. When I had my replacement back in 1981, our children were ages 5 and 2 and 2 (twins there). Like Karlynn, I was glad to get the surgery over and get on with feeling good again so I could take care of our kids. Keep us informed about how you are doing and what decisions you make. We're here to help in any way we can. LINDA

 

[jiniani]

There's no need to avoid greens because you take Coumadin. Avoid greens if you hate greens, but not because you take Coumadin. If you're going to have a large spinach salad every day for a week, you'd probably need to increase your dose. I just had a large Spring Greens salad with my dinner. I can't remember the last time I turned down a food because of being on Coumadin. (Now I wish sugar was expressly prohibited for people on Coumadin - that would make my weight battle a little easier!) What we eat has little effect on our INR. The only thing to be aware of is hidden K in many sports bars, nutritional drinks (Boost) and prepackaged diet food. Their popular protein source is soy. So if you're starting to incorporate a food product with soy protein in it, you'd probably have to run a test and adjust your dose upwards to accommodate the extra daily Vit. K. We have a member who lives in Japan and eats a lot of soy. His dose is just adjusted accordingly.

http://valvereplacement.com/forums/showthread.php?t=17116

Home testing is the best isn't it?!

You are right. No body told me to avoid greens, it is just me .

I wish they told me not to drink coffee while on coumain!!!. Sigh... my doctor told me "no restrictions", but be moderate!!!! What is moderate for anything? A cup of coffee/day or three cups/day? hmmm...
Sugar is whole another story.

Bottom line... we are back to our old self. When I narrate the story of my surgery and other things... people get amazed. Six months after surgery, no body can tell you the difference between pre-you and post-you.

Amazing.......Thanks to all the advances made in the medical world.

 

[Ross]

I wish they told me not to drink coffee while on coumain!!!. Sigh... my doctor told me "no restrictions", but be moderate!!!! What is moderate for anything? A cup of coffee/day or three cups/day? hmmm...
Sugar is whole another story.

Pick up you favorite scientific calculations glossary and see? Well gee, it says 2 cups here, but 5 cups there etc,. Flip a coin? No, do the human thing and just go 4 cause it's between 2 and 5 on the larger side.

 

[surfsparky]

Hi Zack
Glad you found this site!
My husband opted for the Ross Procedure 3 years ago and has been happy with his choice. There are many options out there, so you are at the right place where you can research these choices and then make the decision that feels right for you.
This is a scary and anxious time, probably harder than the surgery itself. We have 3 little ones too, and they were a wonderful antidote for the worry & stress...although Chris asked me to video him with the kids numerous times. He never told me why but I know it was because he was anxious about not coming through the surgery. But he did and life is so much more precious than ever before! One of the blessings of heart surgery is that you really do appreciate and value life and especially one another. We are so much stronger as a couple & family as Chris' heart issues have taught us what the true meaning of life is, which for us is our faith in God and our relationships with one another and those around us.
Take care and ask/vent all that you need during this difficult time...we're here for you and your wife,
Yolanda

 

[zlever]

WOW! I am completely amazed and so very, very much appreciative of every single one of you awesome members of this site whom have responded to my posting. The wealth of information and experiences I now have available to peruse through is amazing and just terrific and I already feel much better.
I really have started to lean heavily in one direction in regards to the choice in valves but still can?t seem to nail it down yet! I really like Marguerite53's idea too "Give yourself a personal deadline (say, Dec. 23rd so you don't have to think about it over the actual Christmas Day if you celebrate) for your choice." I will definitely be back on this great site with my decision and my surgery date in the very near future, as both of those decisions will be made by Dec. 28th.

I am slowly starting to fear Coumadin less. It was very uplifting to hear about monitoring the levels by just a "finger prick". I am still scared of Coumadin because I will have to somewhat alter my lifestyle in regards to cycling and I too like a few beers during a ball game once in a while. I also very much like to cycle hard and to sometimes enter cycling events and go "all out" and also train at a high intensity. The old saying in cycling at such an intense level is "its not a matter of if your going to crash but a matter of when". But hey if I have to tone it down some--so be it! After all I am getting a new lease on life that many decades ago wasn't possible.

Thank you all again so much---I will not be a stranger and you are all very welcome in regards to the thank you?s I have received for having served our great country. It has been and continues to be an honor to serve you all! Thanks again-Zack

 

[Karlynn]

Zack - if you haven't read the Sticky "New to Coumadin" at the top of the Anticoagulation Forum, make sure you do. You don't need to give up those ballgame beers. (Is there a better place to have a cold beer than at a ballgame?????)

Most of us will tell you - wear the required safety gear - and have fun cycling.

If you end up choosing a mechanical, definitely request home testing. Some people are able to start right away, some doctors and insurance companies like people to wait until they've been on Coumadin for a while, and the ones totally out-of-it think it's not safe (which means they haven't read anything on Coumadin in about 10 years - so stay away from these people. )

Best wishes!

 

[maka]

First, THANK YOU< THANK YOU to you and your family

Second, I'm sorry I can't add to anything that hasn't already been told. I had Mitral valve repaired and did not have to make the choice. But as you may see here, everyone can react different to even the mildest medication.
I suggest that you seek a second and even a third opinion and get as much information as you can.
As to OHS, again, everyone reacts differently but I don't like to take strong pain killers and only took Tylenol and not major pain
Good luck and let us know

 

[South Sound Sailor]

Hello from "across the street"

Hello from "across the street"

Zlever - I just read your original post a few minutes ago and like so many others have expressed, I too want to first say THANK YOU for your service to our country.

Hey, if your at Ft. Lewis, then that means I'm right across the street (I-5 that is) from you! I work in DuPont, live in Olympia. I've been in contact with Dr. Dennis Nichols' office for a couple of weeks now and hopefully will pay a visit to him soon. He is the cardio-thoracic surgeon who is conducting the clinical trial for On-X valves out of Tacoma General Hospital. I'm certain he is the surgeon your surgeon referred to about giving an assist with the On-X implant. I've had both email and phone contact with Dr. Nichols RN/research director, Janey. She's been supportive and understanding of my situation (and I'm not even an official patient of Dr. Nichols... yet). Obviously, I'm leaning toward the On-X with the hopes of being accepted into the clinical trial study for reduced anti-coagulant therapy.
Like you, I have small kids (4) at home and the idea of sometime in the near future giving them a hug before surgery quickly brings me to tears. And I know about the anxiety. I thought I was doing OK but it hit me hard yesterday. I've never had a panic or anxiety attack but last night, I had to contact my HMO's urgent care nurse on the phone. I managed to get my thoughts and anxieties under control (with the help of the very kind nurse) and got a few hours of sleep. I woke up this morning feeling much better, went to church and am prepared to take on another day.

Best advice I've seen so far on this web site:
Marguerite53's idea too "Give yourself a personal deadline (say, Dec. 23rd so you don't have to think about it over the actual Christmas Day if you celebrate) for your choice."
THANKS MARGUERITE!!!

Please feel free to email or personal message me. If interested, maybe the 2 of us can get together for a cup of coffee (I'm strictly decaf these days!!!). I promise I'll be as upbeat as possible! And on that note, I'll repeat my story about my 75 year old mom and 46 year old sister. Both live in or near Houston. They are, respectively, 9 months and 6 months post AVR surgery. My mom got a porcine valve. My sister got a St. Jude valve. I visited my mom in Texas about 6 weeks after her surgery. She was creeping around the house but she had the energy to "creep" all day long! Now, 9 months out of surgery, she's literally full of energy and can handle a full day of shopping, cleaning, cooking... all the things my mom loves to do. Prior to surgery for several years, she was good for a a few hours a day and always complaining about being tired. My sister has bounced back even faster and she doesn't even have much to say about the surgery. Honestly, if you ask her, she'll say it was a piece of cake and she'll also make that same comment about her daily coumadin therapy. She says it's no big deal. Now I'm the 3rd in the family to undergo AVR surgery and the pressure is on... NO WAY am I going to be a "sissy" about this!!!

I'm sure I'll have my down days but I find this site to be a great place to sound off. I know that people I work with are not the ones to be my sounding board about my medical issues. But it's good to get into these forums and blow off steam. Lots of caring AND understanding people here.

So, best of luck. Thank you for your service. Drop me a line if you'd like to meet up. Heck, I'll even offer to take you on boat ride into Puget Sound... but I don't get far from shore these days!!

SSS

 

[Plumber1]

This is the first time I have read this post too.

Zlever and South Sound Sailor, I am a little over 6 weeks post op and would be more than happy to share the inside poop about my experience. I have an On-X valve that you can listen to (or loved ones for that matter) if you are curious about noise issues etc. My recovery was very fast and really very easy compared to what I thought it would be.

The moment when you kiss family goodbye as they wheel you away for the procedure is difficult, I think it may be a toss-up for who it is the most difficult for. My family was was strong, very strong, but I know it wasn't easy. The blessing in this is that I really got in touch with how much I love them all and that the time we have together is so very precious.

I had my best friend deliver cookies to my family from a favorite local bakery 2 hours into the operation with a card from me saying I would be returning soon and that cookies would make them feel better. Best 10 bucks I ever spent.

I have had no problem with coumadin thus far -- despite the fact that I was pre-convinced I would. I eat what I normally do and drink no more than 2 glasses of wine on a daily basis and my INR rate is right on the money.

Email me and I will send my home number to you if you want.

Zlever, thanks for serving the USA, you are very cool.

 

[Swede]

My experience

My experience

Hi Zack,

I replaced my aortic valve in 2001 and chose a tissue valve - a Mosaic 25mm. To me there was no other choice at the time. I lived a very active life and did not want any restrictions in the form of medications or constraints of what I could do or not. I got back fast after the operation and always felt good about the choice I did. At my last check up my doctor thought I needed to have an extra examination and it turned out I will need to replace the valve in Jan-08.

I am now thinking a lot of whether I did the right choice or not but so far come to the conclusion I did the right choice even if I have do to another OHS in less than seven years time. I have had loads of fun with my kids and have hurt my self several times that would have been quite complicated being on medication. Of course it sucks having to do it again and now I have to make a choice which mechanical valve to take. Tissue does not appeal to me a second time around and my surgeon as well as doctor strongly recommends a mechanical. I have still not come to discuss which one but hope to get some help from other members on the site when I have gotten more info from my doctors.

As I understand it I am not alone to have problem with the Mosaic valve and having to do a replacement much to early has been seen before so I would definetly be very picky and have a thorough discussion with my surgeon in regards to what tissue valve to choose from if to go that way - looking at my experience I would not recommend the Mosaic.
Also think of which diameter and how you will be living your life. I love all kind of sports and my heart is in great shape but the valve is not - so the more active life you want to live the more important I think the choice you will be making is. It is not only a question of tissue vs mechanical it is also a question of what size to have.

Lastly - I also had the same problem as you had with anxiety and what helped me a lot was yoga - I had been doing it before I got to know about my heart problem and did a lot before surgery as well as after. I am still doing it almost everyday - I do some poses every morning stretching for 5-15 minutes. The more time I spend the more it gives but time is a scarce resource - especially with small children - but a few minutes a day helps me a lot.

 

[Susan BAV]

Hi Zack,

I replaced my aortic valve in 2001 and chose a tissue valve - a Mosaic 25mm. To me there was no other choice at the time. I lived a very active life and did not want any restrictions in the form of medications or constraints of what I could do or not. I got back fast after the operation and always felt good about the choice I did. At my last check up my doctor thought I needed to have an extra examination and it turned out I will need to replace the valve in Jan-08.

I am now thinking a lot of whether I did the right choice or not but so far come to the conclusion I did the right choice even if I have do to another OHS in less than seven years time. I have had loads of fun with my kids and have hurt my self several times that would have been quite complicated being on medication. Of course it sucks having to do it again and now I have to make a choice which mechanical valve to take. Tissue does not appeal to me a second time around and my surgeon as well as doctor strongly recommends a mechanical. I have still not come to discuss which one but hope to get some help from other members on the site when I have gotten more info from my doctors.

As I understand it I am not alone to have problem with the Mosaic valve and having to do a replacement much to early has been seen before so I would definetly be very picky and have a thorough discussion with my surgeon in regards to what tissue valve to choose from if to go that way - looking at my experience I would not recommend the Mosaic.
Also think of which diameter and how you will be living your life. I love all kind of sports and my heart is in great shape but the valve is not - so the more active life you want to live the more important I think the choice you will be making is. It is not only a question of tissue vs mechanical it is also a question of what size to have.

Lastly - I also had the same problem as you had with anxiety and what helped me a lot was yoga - I had been doing it before I got to know about my heart problem and did a lot before surgery as well as after. I am still doing it almost everyday - I do some poses every morning stretching for 5-15 minutes. The more time I spend the more it gives but time is a scarce resource - especially with small children - but a few minutes a day helps me a lot.

Hi Swede - Welcome to the site; glad you found it. Sorry you need to make this decision again so soon. I have a Mosaic valve too. Could you briefly share more details about your Mosaic experience? I don't mean to hijack the thread and I'd ask for a private message but there are several here with Mosaic valves who might also be interested in this. Thanks and take care. Hope all goes well with your reop. By the way, were you a bicuspid?

 

[ALCapshaw2]

Welcome Swede,

The best known Mechanical Valves in the USA are made by ATS, Carbomedics, Medtronics-Hall, On-X, and St. Jude. Sorin (based in Italy) also serves the World market. They are affiliated with Carbomedics.

See my previous response to Zack, (#17 ) in this thread, for the websites and contact information for my preferred choice in mechanical valves.

'AL Capshaw'

 

[Swede]

Hi Swede - Welcome to the site; glad you found it. Sorry you need to make this decision again so soon. I have a Mosaic valve too. Could you briefly share more details about your Mosaic experience? I don't mean to hijack the thread and I'd ask for a private message but there are several here with Mosaic valves who might also be interested in this. Thanks and take care. Hope all goes well with your reop. By the way, were you a bicuspid?

Hi Susan, I would say that the valve has been working well but it has felt a little "limiting" when I really push myself. I do a lot of sports - 3-5 times week normally. I have not gotten a consistent answer in regards to what has failed but hope to find out more -it was only last week I got to know I need to replace it. As I said I still think I did the right choice with a tissue valve - it has given me a lot of freedom. As always there are things that go wrong and those are the ones you hear about - as in my case that is probably why I got to hear about that it has happened to others - when I did the operation the Mosaic was the best and until last week still was so I wouldn't worry. I hope to learn more and will definetly tell about it - at least after post-op they should be able to tell exactly what was wrong. Take care,
Swede

 

[Susan BAV]

Hi Susan, I would say that the valve has been working well but it has felt a little "limiting" when I really push myself. I do a lot of sports - 3-5 times week normally. I have not gotten a consistent answer in regards to what has failed but hope to find out more -it was only last week I got to know I need to replace it. As I said I still think I did the right choice with a tissue valve - it has given me a lot of freedom. As always there are things that go wrong and those are the ones you hear about - as in my case that is probably why I got to hear about that it has happened to others - when I did the operation the Mosaic was the best and until last week still was so I wouldn't worry. I hope to learn more and will definetly tell about it - at least after post-op they should be able to tell exactly what was wrong. Take care,
Swede

Thanks for the reply, Swede. I'm not worried; no sense in that. When you find out the specifics, however, I'd be very interested to hear about it. Really hoping all goes well for you. The On-X valve sound very promising. Take care and post again.

 

[kfay]

zlever, I know exactly how you feel about the anxiety thing. Since my cardio told me in October that it was time for me to think about getting me heart "fixed" I have been very nervous and scared. Even though I have had heart surgery before, it is different this time because I have 2 kids and a husband. I have been living on Xanax since then and a very low dose helps when I start feeling panicy. On the valve issue, my surgeon at the Mayo wants me to use a pig valve for my tricuspid, however, he is concerned with the number of OHS that may expose me to in the long run since I am 44. Even though they are supposed to last in the 10-20 year range, he says he has seen people who go thru them every 5 years. Even though this is rare he told me you don't know how long they will last in your body until you've got one in. So what to do???? I'll actually have a better handle on my situation after tomorrow when they present my case at Mayo and then we'll see what direction they want to take.

 

[zlever]

Next appointment moved up to 21DEC.

Next appointment moved up to 21DEC.

Thank You ALL so much for your responses.

South Sound Sailor--I have sent you and PM and look forward to having that cup of coffee with you.

Karlynn --thanks again for your insight and always uplifting comments!

Plumber 1 thanks for your response to my PM to you and again in this thread. I am so very happy your post-op is going so well!!

Swede thanks so much for your response and info into valve selection and I feel for you for having to have another in such a short time. Your positive attitude and the fact that you have no prior regrets on your first selection of tissue valve shows that you are very strong mentally and physically and I am positive you will have a smooth transition to a 2nd valve in the future.

Kfay and Susan thanks to you all and anyone else I may have forgot for your very insightful comments. Everyone that has responded to my post has had some influence into what valve I will choose and has helped me tremendously as I move forward with surgery.
I have had my appointment for selection of the valve and selection of the surgery date moved to the 21st --this Friday from the 28th of Dec. I have leaned one direction in regards to a valve but not 100% certain yet. It?s most likely going to be an ON-X valve. I feel I could still go either way ?I may not even know this Friday until I ask a few more questions of the surgeons.

Like many of you --I have had my fair share of emotional days lately. The last week or so I?ve kind of hardened up and just not thought about it--but it never goes away. I actually had the ?life insurance etc., worst case scenario talk? with my wife last night and that was very hard on her. I just wanted to make sure she knew where all the paperwork and stuff was--but we got through it. Being in the military etc for so long we have had these discussions before---so although not easy at least I have had exp. talking about it.

I'm seriously considering asking for some anxiety medicine Friday at my last appt. prior to pre-op appt.
I will update this thread as soon as possible after Friday?s appt.
THANKS SO MUCH TO ALL! Until Friday--- Everyone have a Great Pre-Christmas Week---Hope all you?re shopping is done!! LOL

 

[CathyK.]

Zack - Sorry you have to go through this but we all are here and understand exactly what you are going through. I really think that was the hardest part for me, the valve choice. My doctor actually wanted me to pick mechanical because of my age (was 44). I went with bovine. It was just the right choice for me. Was in surgery on Friday and home by noon on Monday. Was on Coumadin for a month after surgery, just because that is what they did. I did fine on it. Now I take an aspirin a day and that is it.

Listen to your gut. What you decide is the right valve for you no matter what anyone of us has said. You should feel some sense of relief after that decision has been made. OHS is a BIG deal but when it is all said and done, it isn't as bad as we anticipate it to be.

Thanks for all you do for us and I hope we have helped you some.

Good luck and you will be in my prayers!

 

[Bryan B]

Swede...glad you found us. I looked on your public profile and I see that you are 43, so I am just guessing that you were probably 36 when you had your tissue valve implanted in 2001. It still seems that 7 years is a bit quick for your valve to deteroriate, but the younger you are and the more active you are the quicker you will wear out a tissue valve. Given your age and lifestyle I would think that if you had gotten 10 years out of it that would have been pretty good. I would also consider this since you are still young and it sounds like you still plan on being active. I had a Ross Procedure so I can (or at least I do ) play the impartial poster when it comes to valve types. You will be pleasently suprised at how active you can be with a mechanical valve. Do some reading in the "Active Lifestyles" forum to get a better idea what members with mechanical valves are capable of doing. I'm not trying to sway you in either direction, but given your age and your enthusiasm for sports (btw i've been playing golf for 35 years...a true addict ) I think it would be safe to assume that if you stay with tissue valves you can count on at least 2-3 more replacements assuming technology stays the same. But you could always go tissue one more time and then go mechanical as another option. It reallly comes down to you and your surgeon discussing the options and how long he thinks another tissue valve will last in you. Then it's up to you to make the final decision. I just wanted to mention these things...most of which I've learned from this site and am just passing along to you.

Good luck with with your upcoming surgery and welcome to the site.

Welcome to you as well Zack...make sure to ask any questions that pop into your head. We're here to share any and all information that we've learned and had passed on to us by other members here when we were going through the same process.