One...Two...Three...FORTH Surgery and Scared!

[AKAFrench]

I am new to this forum and have been reading a lot of the posts from everyone. It has really helped to hear from so many people in similar situations.

A little background on me---I am now 31 and I have had three surgeries so far...and I am currently setting up my forth at the Mayo Clinic in Rochester in March. I had the ROSS procedure when I was 12, and two corrections since, one when I was 16 and another when I was 24. Both corrections involved the use of of a bio-prosthetic and I currently have porcine tissue valves in both the aortic and pulmonary positions. I elected for the tissue valves at the time because I did not know enough about the mechanical valves and Coumadin therapy to make an informed decision (and was full of piss and vinegar in my younger days). I was also petrified of my life "drastically" changing. I now have an ascending aorta that is dialated to 6.3, and in danger of dissection. I am definitely going with mechanical valves to avoid yet another surgery, but even with my definite decision...I am still frightened whether or not I am making the right choice(Stupid, I know).

The fear never goes away, no matter how many times you have been through this! It is sites like this and the people on them that help to alleviate some of the worry. All the posts that I have read on this forum have helped, but I am still nervous like it is my first open heart. I have so many questions that I cannot seem to find the answers to. I live in New Orleans...which is a drinking town obviously...will I be able to have beers with my friends once on Coumadin? Will I still be able to hunt, fish and go four wheeling without an overwhelming fear of a bleeding incident? People talk about the ticking...will I be able to handle it? Has anyone had any side effects on Coumadin--Hair loss, purple toe syndrome, skin necrosis, eye bleeding?

I guess with the mechanical valves being so new to me I don't know what to expect...any words of wisdom would be greatly appreciated!!

 

[JulienDu]

Hey AKA_French

A buddy redneck haha. Just had my second surgery, I chose Mechanical, I had the same worry as you when deciding. Was worry about my man hood. Not enough times passed since surgery for me to tell you anything. But I can tell you I am impatient to go back to work and see how strong I am compare to my partners and there is no way in my mind that I would abandon my trapping and hunting lifestyle, I like to much my wild meat.

Man !! 3 surgeries with bioprosthesis in only 12 years, now this is something, you'r a tough one. If you could tell us why you had to change so often, that would help other understand more.

I build log homes, this is very hard and intense, I trap, hunt, like my guns, fish, horseback, boat and quad and I drink wine (yeah I know my buddies redneck make fun of me all the time for that ) so here is my post pre surgery when I had to decide which valve : http://www.valvereplacement.org/foru...to-way-of-life

Now I am sure other people with a lot more experience will come to your help.

I now see my self as a cyborg, with a superporwerful valve haha

P.S : remember that you would burn through a tissue valve much faster by being active.

 

[AKAFrench]

Thank you for the response JulienDu! It does help when I hear people doing all the things I am worried about having to give up. I am in construction and don't want to give that up either!!

Reasons for the valve changes- After the ROSS procedure, my body began to reject the homograft that was put in the pulmonary position. It calcified at a fraction of the diameter as when it was installed. My "new" aorta (my old pulmonary) also began to dilate. This was the reasoning for the second surgery, and they then installed a tissue valve in the pulmonary position and wrapped the aortic valve. Both valves began to degrade structurally after 7 years and they then removed and replaced both with the porcine tissue valves. The ROSS procedure took one valve issue and made it into a two valve issue...hopefully this will be the last "correction"! I am confident that the mechanical valve and new ascending aorta will solve the issue...I am just not too confident in the way I will adjust to the new valves. But what choice do I have??

 

[cldlhd]

You're making the right call for whatever my opinion is worth. That aorta needs to be taken care of and if you don't go mechanical you're setting yourself up for a fifth.

 

[JulienDu]

Veronika Meyer : she managed to climb the Everest with a Mechanical valve, after trying 3 times with this same valve http://www.newsweek.com/my-turn-climbing-everest-bionic-heart-99749

Ct Fletcher : an incredible heavy lifter has a Mechanical valve now ( http://www.fadedindustry.com/ct-flet...e-master-plan/ ) : look at those muscles !! impressive...

Right now, your valve and aneurysm are already preventing you from doing what you like. The toughest you were going the hardest it was on your tissue, imagine that you would have a valve that will never be damaged by the amount of exercise you do ! At 4.9 my surgeon told me to stop any construction heavy lifting.

 

[dick0236]

[

A little background on me---I am now 31............. I live in New Orleans...which is a drinking town obviously...will I be able to have beers with my friends once on Coumadin? Will I still be able to hunt, fish and go four wheeling without an overwhelming fear of a bleeding incident? People talk about the ticking...will I be able to handle it? Has anyone had any side effects on Coumadin--Hair loss, purple toe syndrome, skin necrosis, eye bleeding?

I guess with the mechanical valves being so new to me I don't know what to expect...any words of wisdom would be greatly appreciated!!

Hi AKAFrench. I got my mechanical valve when I was 31 and it is the only valve I've had to have.....and I will be 80 on 2/21/16.

Drinking is not a problem with a mechanical valve.....but do it in moderation. I actually was prescribed a beer a day when I was in the hospital post op. Back then there where not a lot of good diuretics so they gave me the beer to help reduce any fluid retention. I didn't mind at all but I got some envious looks from my roommate.

There is no need to fear a "bleeding risk" on coumadin/warfarin. You just use a little common sense......like wearing a helmet when 4-wheeling. , I have had my share of cuts and bruises and have had to have stitches on several occasions.....but have never had to go to an ER for excessive bleeding. In fact, my cuts clot about 1.5X normal.

The ticking will depend on your body acoustics. I haven't heard mine since a few months after surgery.....and no one else can hear it either.

I've had no side effects from warfarin....and I have been on it for almost 49 years. I have a full head of hair which is kinda unusual for a man of 80. Most people I think I look closer to 60 than 80.

 

[pellicle]

Hi

A little background on me---I am now 31 and I have had three surgeries so far...and I am currently setting up my forth at the Mayo Clinic in Rochester in March. I had the ROSS procedure when I was 12, and two corrections since, one when I was 16 and another when I was 24. Both corrections involved the use of of a bio-prosthetic and I currently have porcine tissue valves in both the aortic and pulmonary positions. I elected for the tissue valves at the time because I did not know enough about the mechanical valves and Coumadin therapy to make an informed decision (and was full of piss and vinegar in my younger days).

welcome aboard

you sure have a challenging history.

I understand that people somehow are worried about warfarin, its not helped by many ignorant members of the medical profession. I say ignorant because that is the only way I can describe them. There are whole sections of this forum dedicated to the stupid misinformed and wrong opinions which medical professionals have voiced or enforced on others who are on warfarin therapy.

Pretty much every single fear you have voiced about warfain therapy is either totally unfounded or extraordinally rare. Those who have problems on warfarin are usually the very elderly, the very obese or those with significant amounts of so called "co-morbidities".

The data is emerging that the case against warfarin is largely held up by (in the past) the lack of access to good measurement systems and (to this day) the mismanagement of warfarin therapy by the medical practitioners

The majority of people who will tell you about the dangers are those who are not on it.

Strange isn't it....

So to me, you really do need to consider a mechanical valve on your next choice. You have had so many operations that you are really going to be struggling in future with the side effects of that and the gradual destruction of your body due to scar tissue and vascular damage.

I myself have had 3 surgeries (about 10 Year old, 28 and 48) and I can assure you that even though I'm in good condition to look at I have collapsed veins and missing parts of my circulatory system due to surgeries over the years.

There are definately people here on this forum who have multiple mechanical valves, so don't let that point in itself bother you ... indeed I expect you already have 2 prosthetic valves (tricuspid and aortic right?) so changing them out tor longer lasting ones is to me a sound decision.

The question which needs answering (which you have not mentioned) is how is your health otherwise? Do you have diabetes? Do you have any other problems (like blood pressure) which will make warfarin management difficult?

Lastly please feel free to contact my by skype. I'm happy to talk and or listen ... PM me (using the boards PM system) and I'll share my details with you.

Best Wishes

 

[AZ Don]

You are making the right choice. You have to get the aneurysm fixed and as young as you are and with several surgeries behind you the mechanical valve makes the most sense (to me). I still have my BAV but have read enough stories from those on this site with mechanical valves not to be worried about ticking or coumadin when my leaky valve needs to be replaced. People are living full lives with mechanical valves.

 

[pellicle]

****

I've just realised ....

I've had no side effects from warfarin....and I have been on it for almost 49 years. I have a full head of hair which is kinda unusual for a man of 80. Most people I think I look closer to 60 than 80.

we could market this ... "take warfarin and restore your hair"

"miracle cure"

we'll make millions @,@

 

[pellicle]

AKAFrench one thing worth reading:

http://www.newsweek.com/my-turn-climbing-everest-bionic-heart-99749

[FONT=playfair_displayregular]"We are here, on top of the world, and it is still dark. The climb took us 7.5 hours without a real break, without eating, drinking or sitting down. The zipper of my down suit is frozen and I cannot extract my camera—and if I could, it would almost be impossible to hand it to somebody because the oxygen line and the hood are real obstacles. I remove the oxygen mask and take two warm drinks from my thermos bottle."[/FONT]
[FONT=playfair_displayregular]I wrote these words at 4 a.m. on May 16, 2007, in the middle of my attempt to scale Mount Everest.
...
[FONT=playfair_displayregular]When I was 23 I was diagnosed with aortic valve [/FONT][FONT=playfair_displaybold]disease[/FONT][FONT=playfair_displayregular], which meant that one of the four valves controlling the flow of blood to my heart was failing to function properly. During the 1990s my condition began to worsen, and mountain climbing became more difficult. By the late 1990s even climbing stairs was exhausting. So in 1997, at age 46, I underwent heart valve replacement [/FONT][FONT=playfair_displaybold]surgery[/FONT][FONT=playfair_displayregular] and received a mechanical heart valve. Five weeks later I was back climbing mountains with a new determination.[/FONT][/FONT]

so ask yourself ... how much is a mechanical valve and warfarin holding this woman back?

 

[Bushman]

Hey AKA_French

A buddy redneck haha. Just had my second surgery, I chose Mechanical, I had the same worry as you when deciding. Was worry about my man hood. Not enough times passed since surgery for me to tell you anything. But I can tell you I am impatient to go back to work and see how strong I am compare to my partners and there is no way in my mind that I would abandon my trapping and hunting lifestyle, I like to much my wild meat.

Man !! 3 surgeries with bioprosthesis in only 12 years, now this is something, you'r a tough one. If you could tell us why you had to change so often, that would help other understand more.

I build log homes, this is very hard and intense, I trap, hunt, like my guns, fish, horseback, boat and quad and I drink wine (yeah I know my buddies redneck make fun of me all the time for that ) so here is my post pre surgery when I had to decide which valve : http://www.valvereplacement.org/foru...to-way-of-life

Now I am sure other people with a lot more experience will come to your help.

I now see my self as a cyborg, with a superporwerful valve haha

P.S : remember that you would burn through a tissue valve much faster by being active.

Well it appears that the three of us have a lot in common, as you could guess by my handle here.
The guns, hunting, fishing, outdoors... Are very important to me and I don't plan on giving any of that up ant time soon. I am 43 and my AV surgery is scheduled for March 29th. I am a commercial interiors contractor and was wondering when i could get back to work as well, some are telling me to prepare to be off the tools for 6 months or more. Any thoughts?

AKAFrench, i think you are making the right decision as well. My surgeon didn't even want to discuss a tissue valve with me as he said it likely wouldn't even last 5 years with my active lifestyle and young(relatively) age. As for Coumadin, I'm not too worried, there is nothing there that i can control anyway so no sense stressing over it.

Best of luck and i would be looking forward to this surgery, hoping its your last and getting all of this behind you.

 

[cldlhd]

****

I've just realised ....


we could market this ... "take warfarin and restore your hair"

"miracle cure"

we'll make millions @,@

I noticed that Keith Richards also has a full head of hair...

 

[cldlhd]

Well it appears that the three of us have a lot in common, as you could guess by my handle here.
The guns, hunting, fishing, outdoors... Are very important to me and I don't plan on giving any of that up ant time soon. I am 43 and my AV surgery is scheduled for March 29th. I am a commercial interiors contractor and was wondering when i could get back to work as well, some are telling me to prepare to be off the tools for 6 months or more. Any thoughts?

AKAFrench, i think you are making the right decision as well. My surgeon didn't even want to discuss a tissue valve with me as he said it likely wouldn't even last 5 years with my active lifestyle and young(relatively) age. As for Coumadin, I'm not too worried, there is nothing there that i can control anyway so no sense stressing over it.

Best of luck and i would be looking forward to this surgery, hoping its your last and getting all of this behind you.

I guess it depends what tools you use . I didn't have my valve replaced, it was repaired,and my aneurysm was replaced with a graft, but I did have the full bore OHS with a full sternotomy. I work for a local water authority and I was back at work full duty at the 3 month mark.

 

[pellicle]

I noticed that Keith Richards also has a full head of hair...

is he on Warfarin?

 

[cldlhd]

is he on Warfarin?

Ha! Well I wouldn't doubt if he tried it at some point.

 

[AKAFrench]

It has been good to hear from all of you! Hearing from my fellow rednecks always helps! I am feeling a whole lot better about my future Warafin therapy, especially after the articles that were linked. I am not a sedentary person, and the fear of losing my lifestyle made me a wreck. That fear has been alleviated because of your responses...this has been a much needed support group (medical professionals have a worst case scenario outlook).

Pellicle- I do have mild hypertension, but other than that I am in great shape and active. No diabetes or other medical conditions.

If anyone has comments or more info on management of INR with Hypertension it would be much appreciated!

From reading everyone's advice and other forums, I have made some preemptive purchases like a sleep sound machine and a foam mattress topper to minimize the ticking for my girlfriend. I am going to be ordering my home INR tester ASAP and some med alert tags so EMS (hopefully never needed) will have the info they need. If there is anything that has made your lives easier, I'm open for suggestions.

I will keep y'all updated on my surgery outcome and my recovery! Looking forward to starting my new life without the impending doom of another surgery!

 

[AmyBL]

I love Keith Richards! With the amount of drugs that that man has taken in his life (if the rumors are true) he would not be a good example to try to emulate. I doubt he took warfarin because it doesn't alter his mind at all!

Amy

 

[JulienDu]

(medical professionals have a worst case scenario outlook).

What do you mean ?

From reading everyone's advice and other forums, I have made some preemptive purchases like a sleep sound machine and a foam mattress topper to minimize the ticking for my girlfriend. I am going to be ordering my home INR tester ASAP and some med alert tags so EMS (hopefully never needed) will have the info they need. If there is anything that has made your lives easier, I'm open for suggestions.

For now, my wife has not been bothered at all by the noise, she sleeps like before, she says she does not hear it when going to bed. Before the operation, I told her that she better be happy cause she would be one lucky girl to sleep with a bionic man haha.

 

[AKAFrench]

JulienDu- All I meant about the medical professional comment was that they err on the side of caution. This is obviously to keep the patient in the safest scenarios and situations to avoid major trauma, but I want to know the limits of what is safe to do...not just the generic safe activities. I'm a bit of an adrenaline junky and like life at the limit. This causes medical professionals to look at hunting, mountain biking, and 4-wheeling as accident prone activities, but so is walking down a set of stairs or not seeing a change in elevation of the sidewalk. Yes, you can get hurt doing pretty much everything and anything. So when a doctor says you "might" fall off the tree stand or the wheeler (which has never happened in the past 20 years with injury) and it is "dangerous", I am inclined to let it go in one ear and out the other....which is why I wanted to hear from people that have been through it and pushed the "limit" to know what is actually safe instead of going to either extreme of being in a safe little bubble or putting myself in a potentially life threatening situation. Sorry for the book...I just have a million questions/scenarios/thoughts/worries running through my mind all the time.

I am hoping that she will not hear the tick, but she has a way of hearing every little thing at night...a problem that I do not have. So, I want to make a concerted effort before so there is no big transition. I might have to present her with the Bionic man argument though!! haha

Y'all have been great!! I can't say it enough, I really appreciate all the feedback!!

 

[pellicle]

Hi

Pellicle- I do have mild hypertension, but other than that I am in great shape and active. No diabetes or other medical conditions.

If anyone has comments or more info on management of INR with Hypertension it would be much appreciated!

I've not got personal experience on that, but my view is that if you take your drugs regularly and test regularly and make adjustments as needed (not willy nilly) then you'll be fine.

Its only when you have drugs which you take "now and then" as a one off that becomes more of an issue. Even then my experience has been that if you apply a slight amount of thinking (horrible word to some) that you'll (again) be fine.

I've written some blog posts about the self management of INR

http://cjeastwd.blogspot.com/search/label/INR

If I could sit down with you at a table I'd be able to cover it all in half an hour, but I'd still suggest you read those and refer to them (I still do)

Feel free to PM me to discuss things if you like. I use Skype for instance so perhaps we could chat there?

Best Wishes