Your Site Is A Godsend

[charlie b]

Was living life, found out 3 weeks ago that I need my aortic valve replaced. Looks like the big event will take place mid-march. Through God we are taking it well. 56 great years of a very good life, no complaints. Have been researching as much as possible. Still in that decision stage, bio or mechanical, cumadin is the concern. Have been blessed by finding this site, finding folks that have faced or are facing the same thing as I am has had a very calming effect. The suppport and information you guys are proving is frankly, unbelievable. Having read many postings already I can tell that it is a family thing. This is my first posting, looking forward to any contacts provided. My desire is to live a full active life post surgery, and to see some grandchildren (2 sons, but no grandchildren yet). My main hobby or obsession has been surfing, have been at it for about 43 years. Last July, I had the opportunity to win the American Surfing Championships, Legends Division (55-65 yrs old) held in Huntington Beach, Ca. I am hoping to be able to continue doing what I love. Hope that does'nt sound boastful, I am just sharing my level of commitment so you guys can understand how much it means to me. My big decision is 10-15 years (BIO) and back in for another operation, MECHANICAL and cumadin. Im sure many have faced the same dilemma. Any replies will be appreciated. PS- Gath Inc. makes a water-sports helmet. Charlie B

 

[Marguerite53]

Hello!

Hello!

Hi! Wow, you have a great attitude. And much the good life! I'm still waiting around for my AVR but there are so many here who can help you with their successful experience. Please keep asking questions. The amazing thing about this caring group of people is that the ones who have already made it through surgery are so gracious and willing and attentive to those of us who have yet to go through it.

Good luck. Keep the positive energy going! You'll do great!

Marguerite

 

[charlie b]

thank you

thank you

You are my first responder, thank you very much. I am looking forward to making many new friends through this site. It is great to be able to connect with others in the same boat. God Bless Charlie B

 

[Ross]

Charlie I know you've read around some, so by now, I'm sure you know Coumadin is not the big ugly monster that the "Don't Know Any Betters" make it out to be. Most of us have not changed our lifestyles one bit. Use common sense, maybe a bit more caution, but we continue on.

Another thing, you may end up taking Coumadin anyhow even with a tissue valve. Usually it's only temporary, but if you have episodes of Afib, you'll be on it for life anyway!

 

[Buzz Lanning]

Surfing & Mechanical Valve

Surfing & Mechanical Valve

Charlie,

Everyone has their own opinion regarding sports & Coumadin. I wouldn't worry too much about surfing on Coumadin, unless you hit the bottom real hard! Note: I had my aortic valve replaced last July. I'm back to snow skiing again in Colorado's high-country. The mechanical valve / Coumadin has been no problem (for me).

Also, buried in these forums somwhere (maybe under Heart Talk), is a heart surgery journal I posted about my experiences before, during, and after surgery. It's titled "Chronology of Valvular Heart Disease".

Wishing you the best in the upcoming months!
Buzz

 

[Karlynn]

Charlie, welcome to the family!

You are at an age where the tissue/mechanical decision is a tough one. You know that if you go tissue, you will most likely (and hopefully) be facing another surgery down the road. The mechanical brings with it Coumadin. It's a very livable drug, but does present problems when needing other surgeries that can surface later in life. I've been on it for 13 years with no need for any procedure that has required me to go off it - yet. Hopefully it will be avoided for a long period of time.

Not knowing how bruising surfing is, the only thing I would ask is about the risk for head injury. If there is a significant risk or you can look back at your surfing career and list head injuries, I would consider tissue . The other kinds of bruising aren't a big concern.

Just keep reminding yourself that either option is one that will allow you to continue to live life to the fullest.

 

[charlie b]

Charlie, welcome to the family!

You are at an age where the tissue/mechanical decision is a tough one. You know that if you go tissue, you will most likely (and hopefully) be facing another surgery down the road. The mechanical brings with it Coumadin. It's a very livable drug, but does present problems when needing other surgeries that can surface later in life. I've been on it for 13 years with no need for any procedure that has required me to go off it - yet. Hopefully it will be avoided for a long period of time.

Not knowing how bruising surfing is, the only thing I would ask is about the risk for head injury. If there is a significant risk or you can look back at your surfing career and list head injuries, I would consider tissue . The other kinds of bruising aren't a big concern.

Just keep reminding yourself that either option is one that will allow you to continue to live life to the fullest.

Thank you for your concern and info. GATH INC. makes a watersports helmet that is designed and made very well. I would probably begin wearing one if I elect to go the Mechanical route. I can recall quite a few head bangs over the years, only two requiring stitches. If you get a cut or scrape on other parth of the body does it take a long time for them to scab over if on Cumadin. Your scripture verse is a great one, I have claimed it as my scripture during this time of concern. Thank you very much. Charlie B. 2 Timothty 1/7

 

[Buzz Lanning]

Charlie,

I forgot to mention I now wear a helmet skiing.

With regard to bruising & bleeding, everyone is different. In my case, I've had no adverse effects from bruising or bleeding since starting Coumadin 7.5 months ago. My average INR over this time period was 2.6

Buzz

 

[Ross]

If it's a normal run of the mill cut, apply direct pressure with something clean for a little while longer then you normally would. Now if you go a chop off a limb, obviously your going to have some major problems.

 

[charlie b]

what no limb chopping?

what no limb chopping?

If it's a normal run of the mill cut, apply direct pressure with something clean for a little while longer then you normally would. Now if you go a chop off a limb, obviously your going to have some major problems.

Ross, I have always had an averson to chopping off a limb. I guess in the future I will have even greater reasons to avoid such things. On the head trauma, my deceased father has many times in the past told me I had the "hardest head he has ever seen", what was once a negative now will be a positive. Another silver lining story. Charlie B

 

[charlie b]

Hi Buzz,

Hi Buzz,

Charlie,

I forgot to mention I now wear a helmet skiing.

With regard to bruising & bleeding, everyone is different. In my case, I've had no adverse effects from bruising or bleeding since starting Coumadin 7.5 months ago. My average INR over this time period was 2.6

Buzz

Thanks for the input, I have been skiing a dozen times or so, my crash rate while skiing was very high, with surfing atleast you land on water, my board and those of other surfers will probably be my main problem ......Charlie B

 

[momshell7]

Wecome to the family!

Wecome to the family!

First I would like to say WELCOME!! You have found a great site!

Second,I would like to comment on the lifespan of the tissue valves. My husband had a tissue valve implanted(Not sure if that is the right word for this) last October. He is now 38. He has a stentless porcine tissue valve. His surgeon and cardiologist both say it is the best currently available. They told him that right now they are looking at a minimum of 15-20 years. They dont' know for sure how long they will last as no one that has this particular valve has had to have it replaced. Those that have them are so far at 15-20 years and still going with the valve. This of course is not written in stone any more that it is written in stone that you will never have to have a mechanical valve replaced. There are no guarentees on the lifespan with any of the valves. You just have to do your research and decide which is best fo you and your lifestyle!

Best of luck with your upcoming surgery. Feel free to ask any questions. You family may also benefit from this site. There is a section for significant others to post their concerns and questions. This site helped me deal with all the things involved in my husbands surgery. I don't know if I would have made it through without my VR Family!!

Michelle

 

[EVELYN]

Hi Charlie B and WELCOME!!!

My husband, Tyce, and I have been members here for about 3 years. Tyce had a St. Jude's mechanical implanted when he was 59 years old. One of his biggest things was that he didn't want to have the surgery again if at all possible. Coumadin wasn't then and isn't today a major issue. We do home test and have a Coaguchek machine that we trust. This is our second machine. Our first was a Protime which we don't feel was as accurate. Tyce has never stopped doing anything he did presurgery. He is an active, outdoor person, a past, but not for a long time surfer.

Anyway, you have come to a wonderful place. The people here are the best---actually sometimes I think they're better than family!!! You will always find an honest opinion, a compassionate shoulder, and an unbelievable understanding.

Good luck in your search for the best valve for YOU.

Evelyn and Tyce

 

[Karlynn]

Charlie,
I don't find that my cuts and scrapes bleed much more than before Coumadin. I did try to slice my knuckle off once when chopping onions. (Had my finger tips curved under like you're supposed to, but the knife decided to go for the knuckle! ) It bled like a devil, probably should have gone and gotten a stitch or two. Looking at the scar from it, I'm pretty sure it still would have bled a lot without Coumadin.

Most of us here are vastly loyal to our valve selection. I don't know too many here who have regretted going the way they did. We have been known to defend our particular valve choice quite strongly. Those of us with mechanicals do get a bit peeved when misinformation about Coumadin is given by medical professionals when steering a patient towards a valve choice. However, when it boils down to it we are most fiercly loyal to each other. After you've made your choice, if any tries to tell you it's the wrong one, we'll all be there to take them down for you!

 

[tobagotwo]

Welcome to the site, Charlie. It's a difficult decision for most of us. Fortunately, open heart operations have improved to the point that it is much safer than it was even ten years ago to have this surgery.

At age 56, the likelihood is that 15 years would be the low end of what you would expect from today's tissue valves. In fact, I was operated at 51 and chose a porcine Mosaic, which my research estimates 15-22 years, partly because I will require one reoperation, and I want to be about 70 (and not much older) for it. The likely life of a bovine CEPM is 18-25 years at our age.

Different people react differently to surgery, though. I had an easy time, as these things go, and am content that I will have surgery again, inthat I relish the freedoms that I retain.

Similarly, people react differently to warfarin. Some people do extremely well on it, and thrive on its disciplines. Some have very stable INRs, and their body chemistries seem to work well with it. Those who enjoy atheletic pursuits generally seem able to continue or excel in them, with few or no caveats.

Others have more difficulty with it, and may struggle to keep their INRs in range, or find that some life changes often associated with it (eating, alcohol, and exercise patterns, womens' issues, testing-and-dosing INR issues, interactions with other prescriptions, and concerns with having to go on-and-off for dental and other procedures) can be difficult to handle, either spiritually or physically. I can't speak to taking it, only to what is observable in postings. There is also a Coumadin forum on this site, and there is Al Lodwick's warfarin information web site to peruse for more information.

Both types have their good and bad points, and you will read strong opinions from both viewpoints. Statistically, the survival rate is about a dead heat, between the risks of stroke/bleeding with a mechanical, and the risks of reoperation with tissue. The choice generally winds up having a lot to do with timing and personality.

Waiting is the hardest part of OHS. You have a few weeks in front of you. Visit a place that is special or beautiful to you. Get out of your element a little. Celebrate the things you love.

Best wishes,

 

[inlaguna]

Charlie,

Do your research and then make your decision and go with it. I think you will see by the conviction in those with both mechanical and tissue valves on this site that they have done just that.

I chose tissue. One of the reasons was I wanted to learn to surf with my daughter in Huntington Beach and I was afraid I would hit my head too many times in the process.


Dan

 

[Mary]

Charlie,

Unfortunately there are no easy answers. As Ross says, coumadin is not the big scary drug that it is sometimes portrayed to be. At the same time, there is no guarantee that you won't need a reop if you get a mechanical.

My decision came when I spent three days in the hospital trying to get my INR regulated (not related to a mechanical valve) and I hated it. I made my mind up then that I wouldn't go mechanical. I am a good candidate for the Ross procedure, and I hope that I will scoot by with the best of both worlds if it's a go.

Perhaps it's a person's temperament that helps each individual chose and adjust to the valve they get. I'm a risk taker, so I'm going for it. My good friend Bonnie has said she would never make her family worry through another valve replacement, and she is very happy with her mechanical.

I don't think it's a matter of what's better; it's a matter of what you want to live with. Whatever you chose, there will be a wonderful group of people available here for you to talk to about your difficulties and successes.

Please don't let valve selection stress you out. Life is too short.
Mary

 

[charlie b]

Welcome to the site, Charlie. It's a difficult decision for most of us. Fortunately, open heart operations have improved to the point that it is much safer than it was even ten years ago to have this surgery.

At age 56, the likelihood is that 15 years would be the low end of what you would expect from today's tissue valves. In fact, I was operated at 51 and chose a porcine Mosaic, which my research estimates 15-22 years, partly because I will require one reoperation, and I want to be about 70 (and not much older) for it. The likely life of a bovine CEPM is 18-25 years at our age.

Different people react differently to surgery, though. I had an easy time, as these things go, and am content that I will have surgery again, inthat I relish the freedoms that I retain.

Similarly, people react differently to warfarin. Some people do extremely well on it, and thrive on its disciplines. Some have very stable INRs, and their body chemistries seem to work well with it. Those who enjoy atheletic pursuits generally seem able to continue or excel in them, with few or no caveats.

Others have more difficulty with it, and may struggle to keep their INRs in range, or find that some life changes often associated with it (eating, alcohol, and exercise patterns, womens' issues, testing-and-dosing INR issues, interactions with other prescriptions, and concerns with having to go on-and-off for dental and other procedures) can be difficult to handle, either spiritually or physically. I can't speak to taking it, only to what is observable in postings. There is also a Coumadin forum on this site, and there is Al Lodwick's warfarin information web site to peruse for more information.

Both types have their good and bad points, and you will read strong opinions from both viewpoints. Statistically, the survival rate is about a dead heat, between the risks of stroke/bleeding with a mechanical, and the risks of reoperation with tissue. The choice generally winds up having a lot to do with timing and personality.

Waiting is the hardest part of OHS. You have a few weeks in front of you. Visit a place that is special or beautiful to you. Get out of your element a little. Celebrate the things you love.

Best wishes,

Thanks for the contact, and information. I have a few weeks to think things over, my next appointment is in about 12 days with my surgeon, I am looking forward to his imput. Hopefully at some point my decision will become clear to me. I need to tell you that your post about activities not to participate in if on coumadin cracked me up. I had not laughed that hard in many moons. I think I really needed a good laugh and thanks to you I had one. Concerning your suggestion about going to a special place. We leave tommorrow morning for the Bahamas. Your advice was right on target and lined up with our plans exactly. Looks like I am in for a period of inactivity while recovering from surgery, so some sun and salt water in advance will be great. We go to a very undeveloped island where relaxation is the main activity. Read a couple of good books, do some fishing, some snorkeling and get prepared for the big day. Once again thanks and God Bless. Charlie B. 2 Timothy 1/7

 

[charlie b]

Charlie,

Do your research and then make your decision and go with it. I think you will see by the conviction in those with both mechanical and tissue valves on this site that they have done just that.

I chose tissue. One of the reasons was I wanted to learn to surf with my daughter in Huntington Beach and I was afraid I would hit my head too many times in the process.


Dan

Thanks for the note. Over the years I have turned down many hours of overtime (and the extra money I would have earned) to go surfing with my son. He is now 25 and we have memories I would not trade for anything the world could offer. Strange how things turn out, I could have more money in the savings account or my photo albums of days spent on the beach with my family. I'll take the albums everytime! Great to hear you are learning to surf with your daughter sounds like you have your priorities in order. God Bless Charlie B

 

[Bryan B]

Welcome Charlie,

I'm a very, very amateur surfer from the east coast. In the years of bad (but oh so enjoyable) surfing I would say that there were only 2 incidents where being on Coumadin may have been a problem. One where my board caught me in the head so hard I was disoriented and seeing stars for several minutes (good thing I was surfing with a buddy). The other time the fin on my board almost sliced one of my toes off. I think with a helmet and your skill level you should be fine if you choose to get the mechanical, but I would completely understand if you wanted to go bio in order to not have to have that concern in the back of your head. On the positive side, I bet you find that you have more energy after the surgery (and a few months of recovery) than you have now. Even if you're asymptomatic now you may find that you have subconciously adapted or chalked up subtle symptoms to getting older. Anyway...just wanted to welcome you to our family and wish you luck with your upcoming surgery. I had my surgery in mid March and found that it was a nice time of year to have it done. It was a great time to be able to get outside and walk (not too hot and not too cold) and also got down to the coast in early April, which was a very enjoyable part of my recovery.

Take care!