Another newcomer checking in

[The Tin Man]

Hello to all. AVR and aortic repair surgery scheduled for 1/4/2010. Reading the posts of veteran members and newbies like myself have been very comforting. It helps knowing I'm not as alone as I sometimes feel.
One of the biggest fears I have now though is knowing what the right valve choice is for me. My surgeon is recommending I use a mechanical valve because of my age (50 years) While I don't relish the idea of another major surgery in the future, the things I read about the possible problems caused by long term anticoagulant therapy scare me almost enough to think that resurgery risks may be acceptable after all. Both camps seem to have their supporters that point to (possible) advances in medication or surgical procedures that helped them to make their choice right for them. Unfortunately for me I'm a total skeptic. I know advances will be made but, I can't count on them to be there when I need them. I am confused and scared to make the wrong decision, and almost out of time to decide which path is going to be correct for me. :confused2:

 

[Marguerite53]

Well, hello! Yours was at the top of my New Posts lists and since I have a huge fondness for all things Wizard of Oz I couldn't pass up your opening thread.

Welcome to our wonderful community. We will be here cheering you on, lending a shoulder and offering all kinds of experienced advice.

Valve choice is the tough one! Really! Remember that there is no bad choice -- you are choosing to live.

Others will be along, I'm sure! I would write more, but my visiting kids just walked in (we'd all been out for the evening at different places) and I'm off to play bananagrams! I'm almost 5 years post-surgery and believe me -- every holiday is a GIFT!!!!

Best wishes.

Marguerite

 

[The Tin Man]

Thank You! Reading such a warm response so quickly did me a lot of good. Looking forward to any and all thoughts and comments from anyone that may spark the epiphany I need to latch onto a choice and make it mine.

 

[ALCapshaw2]

There are a lot of Horror Stories about Coumadin / Warfarin use from the 'Bad Old Days' before INR testing (developed in the early 1990's) greatly improved the monitoring and dosing management of anticoagulation. Home Testing and Self Dosing has the BEST record for maintaining a stable INR and is slowly gaining acceptance in the USA (it has been commonplace in Germany for years).

I suggest you go to the Anti-Coagulation Forum, scroll down to the "Stickys" and read about the reality of living with / on anticoagulation. Same for the Valve Selection Forum. That should keep you busy for a while and give you some 'real world' experiences to digest.

Feel Free to ask any Questions that come to mind as you travel this new road in your life.

'AL Capshaw'

 

[guyinva]

Welcome Tin Man. I understand your uncertainty on valve selection. I am 51 almost 3 months post op and up until one week prior to surgery I was all ready for a mechanical valve. At my pre-op appointment with the surgeon we had a long discussion and I ultimately went with the tissue valve. Like you I didn't like the idea of being on blood thinners the rest of my life. Also, I think the constant ticking of the mechanical valve would have drove me crazy. I know people say they get used to it, but I'm not sure that I would. The deciding factor for me was my surgeon believes that when it is time for a new valve, a percutaneous replacement may be available. While it isn't a certainty that it will be, I was willing to take the chance. So, I'm the proud owner of a tissue valve.

Valve choice has to be a personal decision. There is really no bad choice. Good luck on making your decision and I wish you well in your surgery.

Kip

 

[scott.eitman]

Welcome. As others will say, it is a personal decision.

I have had both a bio and a mechanical. I am not looking back and saying that one decision was beter than the other. In 1998, ValveReplacement.org did not exist to help with the decision. Both valve choices were the right decision for me at the time. Both have many pros and cons. You need to weight them based on your and your lifestyle.

I wish you well in your decsison makeing process and in surgery.

Scott

 

[Mentu]

TM, welcome to VR. I felt the same sense of relief at find a group of people with whom I could talk about what was happening to me. When I first discovered this community, I knew no one who had ever had a valve replacement. If you have been reading, you already know that others have spent a lot of energy making the choice of valve. No one can tell you which is the "best" valve for you and studies published to date show no difference in life expectancy between those who have tissue valve and those with mechanical valves. As I've said elsewhere, I've come to think the most important thing is for you to be comfortable with your choice. Through reading about peoples experiences and learning as much as you can about your alternatives, hopefully, some of your fears about the future can be eased. As Marguerite told you, there is no "wrong" choice. Mechanical valves should last for the rest of your life but come with anticoagulation therapy. If you read much in VR you will learn that millions of people live comfortably with ACT and do pretty much what they want living active lives. With Tissue valves there is no ACT other than aspirin but there is the possibility and, if you are younger, the likelihood of reoperation in the future. Talking about your choices may help you find which path is more comfortable for you. This choice, however, is not a matter of choosing the bad valve over the good valve. It is a choice between two somewhat different but equally effective devices that will restore your health.

TM, please feel free to share your concerns and we will share our views, take care.

Larry

 

[Duffey]

Hi and welcome! I just added your avr to our surgery calendar, so you'll be held close in our thoughts on the 4th.

 

[mainframe]

I usually try and stay out of valve choice threads. I've had both. The tissue valve that was "suppossed" to last 12 - 15 years lasted half that. The advancements in valve technology/surgical techniques that I was hoping for prior to valve job #2 didn't happen.

I remember reading here (I think it was Ross) who promoted the idea of trying to have as few OHS as possible. That the idea of someone planning for their 2nd surgery before having thier first was absurd. And while the percentages of successful surgeries is very high, there is 100 percent chance that someone here at some point either won't make it through surgery or have a really, really tough recovery. The question is, who will it be?

I was very healthy and fit for my first AVR and it's pretty easy to think you will be for your second. But you never know. I was in pretty rough condition going into my second. That wasn't in my plan. I wonder how good of an idea my wife thought it was for me to get a tissue valve for my first AVR when Dr. Miller was telling her after my second surgery my chances of surviving the night and the next few days was 50/50? Luckily I made it. It could have gone either way.

 

[Marguerite53]

Okay, I'm back again. Just to reassure you, we all have doubts in the days approaching surgery. That is normal. We are not doctors here, and specifically, your surgeon may have suggested a mechanical valve because of other individual needs your physiology may demand. We can't know that. You might, however, ask him to consult with you prior to your hospital admit since you are somewhat burdened with doubt.

For me, my surgeon said he'd put in whatever valve I wanted. When I told him I was leaning tissue even though I had just turned 52, he said (and he was also 52 at the time) that that was the valve he would choose for himself or anyone in his family who had my identical needs. Nothing else was going on with me, just the aortic stenosis and degraded valve. The only thing he asked me was that I not choose a stentless valve since he, personally, always felt like he was fumbling with those. Obviously I would have gone to another surgeon had I had my heart set on, or needed a stentless valve. SO. You really might want to know which valve your surgeon has the most experience with.

Please keep in mind that some people end up not so lucky with every kind of valve. You might go mechancal and have it not "seat" well and they have to go in and fiddle or replace. Or the same kind of thing could happen with a tissue. But for any kind of valve, usually NOT, though. Usually all goes very very well and life is grand and full of promise. But, given all the knowns and unknowns there really can't be a complete guarantee.

Many surgeons enjoy talking with their prospective clients. Please do not hesitate to phone and voice your concerns/doubts to your surgeon or the Physician's Assistant. They are very practiced in explanation and should be very willing to talk to you. Press on. Get the info you need from the person who is the only one who really can give it to you.

Then you can "go with confidence" and to me, feeling confident and full of that strength is what helped me through the journey. And it is just a journey.

;o) Marguerite

 

[drivetopless]

It's a very personal choice, and I agree any new valve is better than the one you have. Talk it over with your surgeon, maybe get a second opinion on valve choice, make your decision and don't look back! At 46 (almost 47) I'm going with mechanical. I'm a better pill taker than repeat surgical patient. And the surgeon I've chosen is preferential/experienced with my preferred type of valve. Good luck and keep us posted!

 

[neil]

hi tin man, well firstly there is no bad choice,both will save your life,so its a win win situation,i choose tissue because i didnt fancy the ticking and i did not want to be on anti coags the rest of my life,most people are ok with it but its still not a med i would want to be on,thats my personnal choice and am happy to take another re op when it comes along,remember this is your ball game,

 

[Penny]

Welcome...such great advice from everyone.. I really like mainframe's post for it is true that for some surgery is a breeze for others not so much. I had my obstacles for sure. I had a tissue valve and I am 45. I made my decision on my other health issues and also the fear of being on coumadin for the rest of my life. After dealing with the post surgery complications that I did, it made me realize that the most important was that I am here now to read your post and try to contribute to this wonderful support system here. It is a difficult choice to make, there are no guarantees that either valve will last the length of time they tell you. Of course there is also the hope that the future holds other surgical options. I wish you luck in your surgery and hope you find some comfort in all of our words.. take care

 

[bdryer]

The only bad decision is indecision.

Take a week or two and talk to folks in our situation, or those who are on warfarin for other reasons. Make your mind up and go forward. Concentrate on your choice. Once you mind is made up surf only the manufactures web sites of your choice, that being either biological or mechanical and get excited about your decision. Now you can plan for the future. If you are waffling around with indecision, you are only fueling frustration and anxiety.

I was not given a lot of time for decision as I was diagnosed as already severe at time of discovery on Oct 14. AV opening @ .6cm2 and ascending aorta dilated to 4.5 cm's. As an ascending aorta graft is required the surgeon recommends a MAV. No problemo as I already chose a MAV.

I am a supplement freak so ingesting and balancing the strength of a warfarin tablet is absolutely no biggy. I will start home testing ASAP. I want to be put down only once and this is my best chance at it. Missing one ski season is one to many, especially at age 55. From what I have found about warfarin, simply be consistent in your diet. I already am and I will be quaffing greens daily!

I concentrate only on MHV technology. I am in communication with both St. Jude and On-X. The surgeon will have the final say over the St. Jude Regent or On-X when he goes for the installation, as one may fit better over the other.

Make a decision and move on!

 

[Greg a]

Tin Man , a heart felt WELCOME to our OHS family glad you are getting the information that you are seeking and there is swealth of knowledge here for the future .....

a list of acronyms and short forms http://www.valvereplacement.org/forums/showthread.php?27412-Acronyms

what to ask pre surgery http://www.valvereplacement.org/for...68-Pre-surgery-consultation-list-of-questions

what to take with you to the hospital http://www.valvereplacement.org/forums/showthread.php?13283-what-to-take-to-the-hospital-a-checklist

Preparing the house for post surgical patients http://www.valvereplacement.org/for...Getting-Comfortable-Around-the-House&p=218802

These are from various forum stickies and there is plenty more to read as well


And Lynw recently added this PDF on what to expect post op
http://www.sts.org/documents/pdf/whattoexpect.pdf

As others have said your valve choice is a VERY personal choice to make and you and ONLY you must be comfortable with that choice

 

[normofthenorth]

The only bad decision is indecision.

. . .
I want to be put down only once and this is my best chance at it. Missing one ski season is one to many, especially at age 55.
. . .

bdryer, I agree with a lot of what you wrote, but. . . And maybe I'm dreaming in Technicolor or seriously risking my life, BUT: I've already paid for my flight from Toronto to Vancouver for a ski week in Whistler around 8.5 weeks post-op, starting at the end of Jan. I've also got a second Whistler timeshare at the end of March, and I've ALWAYS been planning to use that on the slopes. There are lots of possible "bumps on the road" between here and there, of course, but so far I'm on schedule as far as I can see.

I'll still be on Coumadin (INR range 2.5-3.0) for the Jan/Feb week, and I may finally start skiing in a helmet. I also expect to take it way easier than normal, partly out of respect for my cracked "wishbone", and mostly out of respect to my out-of-shape heart. But I'll be very disappointed if I decide to stay in the Village or in the Condo all week.

With good luck, we'll both be too old to remember this exchange by the time my "gold standard" Hancock II valve hits Significant Structural Degradation in 20-ish years, but if I make it that long, and it does, too, I'll be disappointed if the re-do costs me a whole ski season.

I sure hope this doesn't all sound like empty bravado in hindsight, though life is sometimes like that (and eventually it ALWAYS is!). When I tore an Achilles tendon a year ago, I was determined to spend a week skiing in Whistler 17 weeks post-NON-op, and I made it and had a blast. (The rest of my body was out-of-shape and wiped out, and the snow was warm, heavy and MURDER, but my leg was fine! ) I guess we'll know how this plan turns out in about 5 weeks. . .

 

[normofthenorth]

The Tin Man, I've just posted a thread in this Valve Selection area, with links to, and quotes from, two recent studies quantifying results from two excellent tissue valves, the CEP (cow) and the Medtronics Hancock II (pig).

Mentu, you say that "studies published to date show no difference in life expectancy between those who have tissue valve and those with mechanical valves", but my understanding is that the results vary with patient AGE, and "the lines cross" somewhere around maybe 55 years old. Younger than that, and the risks of the "re-do's" have traditionally depressed life expectancy more than the risks of ACT complications, and older than that it's the other way around. I don't have a study or a citation in front of me, but do you have a study that says that's not so?

Mind you, even if my recollection is right, there are lots of good reasons to go against the odds, including:

1. I think the slope of the lines is pretty shallow, i.e., not much to choose if you're (say) 10 years on the "wrong" side of where the lines meet;
2. It's one of the most personal decisions in all of life, and you've got to be content with YOUR choice -- and preferably even if the world doesn't turn out as planned;
3. The historical data is, well, historical! ACT/ INR management has certainly improved since the data was laid down, and the risk of OHS, and the number of experts in "Re-do's" have all improved sharply since then.
4. The chemical treatment of tissue valves and the design of mech valves have also both improved. The 2010 study on the durability of the Hancock II pig valve looks pretty revolutionary to me, based on my understanding from earlier studies and rumors and scuttlebutt.
5. Future developments -- lower INR for the On-X, cath Re-do's for tissue valves -- may or may not finally materialize and make a difference for us. The decision whether or not to "bet on it" is another personal choice.

[Tin Man, I forgot how imminent your OHS was when I wrote the next paragraph, sorry. I'll leave it here for others with more time, but it's not for you, sorry. --Norm]
Finally, somebody here suggested taking a "trial marriage" with Coumadin. Set a reasonable INR target range, find a cooperative MD and a lab, get a prescription, and see how you do for a month or two. I think it's a great idea. Many or most people here say it's no bid deal, easy to get used to, and others have found it a bloody nuisance or even a virtual impossibility. If you turn out to fall into one of the extreme camps, it might be nice to know BEFORE you "tie the knot". (I'm in the "minor nuisance" camp so far, almost 4 weeks into my 3-month "trial marriage" -- but if I throw a clot or start bleeding, or turn into one big hematoma, I'll immediately relabel my experience!)

 

[bdryer]

Hey normofthenoth.

From what I have read, you CAN ski after two months and swim after three. I am sitting out early season as I do not want to stress my heart prior to surgery. I am classified as severe. The doc doesn't want me to start passing out. Hence I'm putting off skiing prior to surgery. Two mths post surgery puts me into March. That leaves 1 month of quality rocky mountain skiing. I will review my status then. I am prepared to sit out this year. I am doing sports daily, but mainly de-tuned swim, bike, run and Wt lifting.

Whistler is a great town to eat a consistent healthy diet, to help you keep a steady state INR! Enjoy!

Skiing with an injured Achilles is easy and pain free as the boot acts like a cast. The hard part is removing the boot and walking out of ski boots. Been their done that.

You as of yet have not been wearing a helmet!!?? They are great. They are warm, keep the wind out, the safety bar off your skull, snow off the lenses, [get one with a little brim] and super light weight. You will love it. Oh yea, did I say they prevent concussions.

Have a great vacation. Stay off the double D's with the bumps that push your knees into your chest and you will be fine. Be smooth and flow edge to edge, no jerky hockey stop turns. Nuff said, go getem!

See Tin Man, he is a biological valver and I'm soon to be a mechanical valver, yet we still get along and don't criticize each other. Rather we wish the best for each other! Our choices are personal and highly respected in this little community.

 

[The Tin Man]

Wow, I didn't expect the volume of replies I got to my post but I am very pleased. I would like to thank everyone for providing their support, opinions and links to materials to help me decide which path to take. I hope that when all is said and done that I can be as comfortable with my decision as most all of you seem to be with yours. Meanwhile, I am going to keep on reading and I am planning on talking more with my docs to try to get some of my questions and concerns addressed before the big day. Thank You All.

 

[Philip B]

Potential Problems?

Potential Problems?

Hi Tin Man,

Nice Handle! I use a similar one (Tinman) on the Cardiac Athletes Forum.

If you've been hanging around the forum long enough, you've undoubtedly noticed that perspectives and experiences vary among members. I opted for a mechanical valve and have never experienced any major complications with anticoagulant therapy. I play just as hard now as I did before my AVR surgery.

Prior to moving from Colorado to Arizona last June, I spent a lot skiing after having my valve replaced. I was doing the helmet thing before AVR surgery. My helmet had speakers and was wired for Ipod hook-up. Skiing to music was really a kick.

Monitoring my INR and adjusting coumadin dosages has been easy.

-Philip