I feel your pain. Break the decision down a bit. The tissue valve will give you the convenience of your normal routines with the virtual guaranty of a resurgery - during your retirement at the latest. It also gives you the uncertainty of "what will happen to our health care system politically".
The mechanical valve has a good chance of never needing to be replaced. Most of the valves currently used are certified for low dose Coumadin due to their carbon construction. Sure, you need to be a little more careful and as far as the diet goes, you simply need to be consistent. My only real change is that I've put a simple first aid kit in each car.
I am biased - you probably remember, I chose mechanical because I never want to have that surgery again. I also had a significant amout of interior plumbing replaced as well and am healing very, very nicely.
My Coumadin dose is 5mg per day. According to my pharmacist, that is a low dose and it is keeping me in range. I have not changed my diet at all. I eat vegetables - but have never been a fan of the bitter green leafy stuff like spinach & kale.
In my mind the bulk of the decision revolves around two things. First, my willingness to have a re-surgery, and my willingness to deal with another failing valve.
According to the articles I read, the new biological valves may last 15-20 years, however the articles I read also said they may start to become inefficient in 8-10 years. I've already dealt with an inefficient aortic valve for 15 years. I prefer not to have to do that again.
Again, I'm biased and have no intention of "selling" you on mechanical. My only intention is that you think through all the aspects before making your final decision.
My heart ticks - and I like it. It's a great party trick!! My 6 year old will walk by me in a quiet room, stop within about 2 feet of me and say - "Yep, still ticking!"
Hi Steve, I am 50 and also in the "tricky" age. I was all set to go with mechanical until I met my surgeon. I didn't realize that the Coumadin level needed to be even higher than what I was used to, because of my Afib. That was a big factor in making my decision. In addition, I'm hopeful that in 15-20 years, the things they're doing in Europe in terms of minimally invasive valve replacement, will be here in the states. Who know what could happen in 15-20 years with technology? So, protocol says mechanical is the suggested valve. When the world class mitral valve surgeon says, "I'm 55 and I'd go with tissue", that weighs in on the decision, even though it probably shouldn't. Good luck with your decision. It is such a personal decision. Take care. Lily Cardlin
Steven - It was the hardest thing for me out of the entire process. I am 38 and my Cardiologist said mech and my Surgeon said tissue. I didn't actually make a decision until the Friday before the surgery. The Surgeon call and I said Tissue..I don't regret it even though in 20 years it will need to be replaced again. I only have to take an asprin a day. I don't have to worry about bumps or bruises or cuts..I don't have to think about what types of foods I can have.
Yes, The though of having it replaced again is daunting but my surgeon says along with all the data I could gather is doing it twice is no more risky than the 1st time except I will just be a bit older.
I spoke to my wife about it and she seemed a little freaked out by the possibility of being able to hear my valve tick with a mechanical one..haha
I debated with my cardiologist often but now it's done it doesn't come up at all. We just talk about healing and how often I will need to come back and see him.
Truth is at our ages there is not really a wrong choice..It's what and how we want to live our lives and for me I wanted to live it as close to not have any restrictions while my kids were in the young ages of their lives..
Good Luck my friend and no matter what way you go you will be FIXED!!
Hi Steven, another reason to wish we were 25 again, then it would be a no brainer. What type of valve was without question my hardest decision. I am 63...still not an easy decision, still a real possibility that I may need surgery again some day (I finally chose tissue valve (cow). I went back and forth so many times and I wish I could say that I was completely comfortable with the choice, but I still find myself thinking about it sometimes. I think if I had been as young as you, I probably would have gone with mechanical, but then again, you REALLY have to be careful with the coumadin when you have a mechanical valve. If the INR level gets too low (and you won't have symptoms to tell you it's low) you risk blood clots and stroke. I was on coumadin for several years for another heart issue and it really wasn't a problem unless I had to come off of it for some medical procedure, however, it wasn't as critical an issue as with a mechanical valve. And, as you probably have found out, the surgeons that recommend tissue valve believe that the transcatheter method will be perfected and available to everyone soon. If you have a mechanical valve and it fails, they will not be able to replace it with the transcatheter approach, you will need the full surgery again. Like I said, this was my hardest decision. I told Dr. Gillinov that I actually wished it wasn't my decision, I would have preferred to not have a choice, lol. Good luck with your decision!
I'm right there with you -- May 11th. At this point, we've done everything we can do, now we just need to stay positive and keep busy. People tell me the weeks will fly by....hasn't happened yet, but I'm still hoping!
YEAH!!!!! I love that you found a surgeon you like. Isn't it amazing how reassuring the "right" surgeon is? I agree it is SO important to find someone that you connect with and feel confident about. As you saw, it makes all the difference in the world. I am so psyched for you. More stressful days ahead for sure, but take them as they come and try to bounce back as quickly as possible. You will do great. For sure!
Hi Steven, on talking to your 10 year old daughter, it's always best to keep it simple and to reassure her that it's going to be alright. I had surgery last March, my daughter was 11 years old, the whole thing took me by surprise i had no idea i was sick till the last minute, I did have a serious talk with both my daughters and gave instructions to my oldest as to what to do if I didn't make it out of this, the hospital suggested that I write a living will, I was in bad shape so I decided to put my emotions aside and concentrate on my kids by preparing them and making sure they knew what to do.
I made copies of my will so my own siblings would not interfiere with my daughter's arrangments if it came to that.
But everything went fine, the whole thing affected my daughters in many positive ways, they are more caring and understanding.
I agree, having confidence in and a connection with your surgeon goes a long way toward preparing us mentally for what lies ahead. I'll be a few days ahead of you on May 11th so we'll be able to recover together!
Great to hear that you're moving forward on the path to a mended heart. I too found it highly reassuring when my plan for the surgeon, the hospital (Mt Sinai), and the date were completely fixed. I did fine without getting a recliner for our house (well, okay, fine is a bit of an embellishment. I coped as well as I could with managing being uncomfortable. I alternated using my bed and sofa, with a multitude of pillows, and don't think a recliner as an additional platform would have made any difference)
- Jim Smith
I did not use my recliner. I was fine with my feet elevated while sitting on my couch. I slept in my own bed right away. I used a wedge pillow with other pillows on top and around it. I strongly recommend the travel pillow that wraps around your neck as well.
Hang in there,
Hi, my name is Amy and I have been home now for 2 weeks post-op (redo full sternotomy for subaortic stenosis).
Recliner: if you can afford it I would go for it, but my comfy couch worked just fine with some pillows. Discomfort is (sorry to say) inevitable for awhile.
For your daughter (&Family), my advise is to gentle warn about how you will look in ICU. My 1st surgery (10 yrs ago) my mom said she didn't recognize me and this time my husband had a really rough time seeing me in ICU (understatement of the year). Maybe if you haven't warn her that you will look pale and have a lot of tubes going in and out to help you heal.
Hope this helps! I am sure you will do great. Good Luck!
What's up buddy? How did the meeting with the surgeon go this week? I found the recliner indispensible because it was just to painful for me to lie down flat. I slept in my recliner for the first 3 weeks. OK, "slept" is a relative term as you only go an hour or two in the early days post op. I rented a recliner. I know others went with the wedge pillow in bed.
Rob's experience is that either a recliner or a nice comfortable chair with an ottoman or foot rest is helpful, as the feet do need to be elevated to help decrease the fluid retention. A chair you would be comfortable napping or sleeping in. There are ways to make what you have work. The recliner was wonderful for Rob, did not get a lift recliner like many have and it has been fine. Rob slept in his own bed the first night home using a wedge pillow so as not to be so flat and that works well, still using it by the way. Good luck! Linda W.
Steve - I don't think you need a recliner. Get a wedge pillow and prop it up with pillows and that will be fine. That's what I did. I have a recliner and don't think I would have enjoyed it. Tend to slide down in the chair.
Not saying anything against them but if you don't have one I wouldn't go get one just for recovery.
I would like to share a couple more things..looking back at my journey I want to let you know why I picked the Cleveland Clinic. It was ranked the #1 heart hospital in the country for the last 18 years. The mortality rate for the surgery I had is .025%. Those are the best odds I found in their hands.
The reason I picked Dr. Gillinov is because I saw Robin Williams on David Letterman (you can see it on you tube) and he was talking about Dr. Gillinov and it hit me right between the eyes..Robin Williams has fame & fortune why is he going to CC and picking this doctor? When I did my homework I realized this guy was special and low and behold a year and a half later I was at the CC with Dr. Gillinov. He just wrote a book, Heart 411, it is a good read and very educational.
I had my valve replaced with a tissue (cow) valve. They don't repair aortic valves anymore because they don't last. I didn't go with a mechanical valve because I did not want to be on blood thinners the rest of my life and if I fall I don't have to be rushed to the hospital to see if there is internal bleeding. I don't have to check my blood levels weekly either. They do say that most mechanical valves could last forever. I wish there was a perfect valve out there but there isn't. I went with the suggestion of one of the top surgeons at the Cleveland Clinic, Dr. Gillinov. By the time I'll be ready for a new valve there will be advances in technology and I might not even need open heart surgery.
I have a normal lifestyle, it's as if I never had surgery. It's pretty weird but at the same time it is pretty cool. As for exercise I am slow and steady, I don't want to wear out my valve too soon. I feel very fortunate and you will too. I hope this helps. Now I am going to jump off a cliff, just kidding.
Sounds ilke all is going well with you and your daughter and that's great. The fear is always worse then the reality my friend, dont forget that. Doctors, technology, yes you right, were both very lucky its 2012. Thank god its 2012.
Hello Steven, There is no right way or wrong way - I told my 10yr old while I was driving in my car, and for the 20yr old I did it over the phone. My thinking was not to make it toooooooo heavy for the kids and myself. I tried to make it out to be a no big thing. It wasn't easy but I did it. It made things so much easier after that, we started to watch my up and coming surgery on youtube and so much more. On Aug 6th 2010 I had my aortic valve replaced at the Cleveland Clinic by Dr. Gillinov and all went well.
My daughter had that. She has 3 kids and at that time, she had a new baby, a daughter who was 5 and one 3. She just told the girls that she had to go away, that her heart was broken and she was going to have it fixed. They were able to come and see her in the hospital and saw her. They were a little scared but warmed right up to her and when she got home they fought of you was going to take care of mommy. Of course I was there to help with the baby as well. I wouldnt go with anything that could possible happen just keep it as positive as possible. They will be fine. Oh my daughters oldest daughter has asberger (sp)snydrome so it was extremely hard on her.
For the long haul
Man you ask a lot of questions....... Stop it! Just kidding Bro!
My oldest is 11. I had thought about writing them letters if the worst was to happen, writing my wife a letter and details about where I keep important docs, etc. I even wondered the same thing, aren't I doing my daughter a disservice by not preparing her for the worst? Them you know what, I chucked it all. I decided to be an optimist and never wrote the letters.
We never got heavy with our kids and just told them I had someting that needed to be fixed. I did lightly check in with my daughter every now and then. As my surgery got closer, she started to talk more about it and I tried my best to reassure her when you asked, if I was scared or nervous. I simply told her, just like she gets calm when I tell her everything would be all right, I got clam when the best surgeon in the world told me everything would be all right. I agree Steve, kids as young as our really can't handle the heavy stuff. They just want to know their dad will be ok. And you will be. If the absolute worst happens, there is no way any of us, especially younger children can be prepared, so why stress them out. But you will be fine, so don't you stress either!
I sought the opinion of 2 surgeons. After meeting Dr. Bavaria and speaking with him I knew he was the one that I trusted to do my surgery. He answered every question I had in detail (i.e. procedure, risks, recovery,etc.) He told me what options I had and gave his opinion on the types of valves (mechanical, bovine, etc). I also expressed concern about who would do the surgery and Dr. Bavaria told me that he does the surgery. If I had to chose over again I would still chose Dr. Bavaria. In my opinion he is the best. However, the decision is yours and yours alone. If you have any questions, I'll be glad to answer any as best as I can. I know it is scary...but you'll be fine.
Steve, I have been on both sides. I was 14 when my dad had 1st open heart and saw him through another 4 open hearts until his death in his very late 70's. He was always positive, upbeat and don't worry about me attitude. That was perfect for me to hear. Back in those days, open heart was a lot more scary than it is now. I used his positive outlook, many decades later when this year at age 54, I was having open heart. I told my adult children and husband, don't worry...I'll be fine. AND, I was!! I think we are the blessed ones who can be fixed unlike other diseases. I would be upbeat, positive and tell them not to worry. You will be fine and do great!! Janis Kielbasa post op 11 weeks.
Just went through the chat with the kids stuff a few weeks ago. I have 12 and 16 year olds. I just told them that I needed to get this thing fixed. They were like "Oh, can I still get together with my friends that week?". I'm fine with that response!
With me it's a little different since this is a re-op and they have known almost their whole lives that some day I will need another surgery.
My younger one is a little more emotional (at least outwardly). She said she was scared and asked me if I was scared. I was able to tell that hey I already went through this once and while it will be a pain for a week or two I really wasn't scared and neither should she be. That worked.
I told them about a month in advance. For us it will be spring break week and I didn't want them to make a lot of plans only to have to cancel them later.
Let me know if you want to chat. I'm just up the Turnpike from you!
Telling my kids was hard. At the time they were 8,5,6months. Believe it or not my 5 year old took it worse then my 8 year old. We told them that daddy needed surgery to fix his heart and that everything would be fine. I never wanted to let them know otherwise. Almost 2 years later they dont even think about now. Hope that helps. I read another comment about Dr. Baveria on another post. He did the surgery. No he has other docs in there but on my post op note he proformed the entire surgery that had to do with the heart. There are others that proform the sternotomy. But its all Baveria
So happy to hear your aorta is fine and "all" you need is a new valve!
As for your question about your daughter . . . I am not a parent of a young child but the chances are VERY high that you will come through your surgery very well with no major complications. I see no reason to upset your daughter with something that VERY probably won't happen.
As I'm sure you've figured out from reading journals, the waiting REALLY is the hardest part . . . try not to obsess and spend your time doing fun things with your family.
Just getting caught up on HVJs and see I missed a few of your posts. First off, great news on your aorta being in good shape. Just curious, what was your measurement at the largest point?
I don't understand your surgeon's comment either, since you are on the heart lung machine, there will be blood flowing to your brain, so I am not sure what your surgeon was talking about.
Before I decided tissue, I discussed mechanical valves with my surgeon, including the On X. My surgeon said it was still relatively new and he doubted a Coumadin replacement would get FDA approval in my lifetime. So he did not recommend the On X but would have put one in if that is what I wanted. Well, you know the rest of my story on valve choice.
Keep doing your homework, let me know of I can be of more help.
My surgeon and cardiologist both recommended the St. Jude's mechanical valve for me. They both said there wasn't enough data on the On-X valve in the Mitral Valve position. I felt there was less risk with the St. Jude's valve as well.
I spoke with my surgeon in detail about what mechanical valve to use. He does about 100 aortic valves per year. he said that he has implanted the on-X valves in the past but they are harder to do and he won't do it without a full sternotomy. He prefers the st judes valve for a few good reasons, one they have a long history with a good track record, and they cause less trauma to the patient. He also told me that there is still a risk of clots forming around the sewing ring of the on-X. After considering all the pro's and con's of tissue and mechanical valves I chose the st judes. I hope that all goes well for you..
Your friend is right. You are not selecting him for a personality test. The main questions are how many has he done and how many has he lost in the last 5 years. If he can't answer that keep looking. You have to be very comfortable with him. For the moment he has to be your best friend. Good luck
For the long haul
You want both, personality and genius, meet with Dr. Stelzer at Mt. Sinai. He is an amazing man. My husband, Chris Dixon, just had his surgery on 2/27. Check out his journal and what he has to say about Dr. Stelzer. My opinion is that it is essential that you feel like you can ask questions and you will get an answer.
Hi its Jane again,
I believe that the blood flow to the brain is never interrupted for heart surgery. the by-pass machine is for the blood flow to the heart .
Even when brain surgery is done, there is still minimal blood flow to the brain.
You should not have to be involved in that. Think about a New York Hospital like Columbia, Cornell, Mt. Sinai or Cleveland Clinic they are tried and true and would never have a questionable surgeon affiliated.
I had mitral valve repair done 12/5/11. I was on Coumadin for a month or so. I was told that if I stayed on it for A-fib, I would be switched to the new drug that did not require testing levels. It is on the market and available. As far as your surgeon choice, I was sent to Dr.Smith at Columbia Hosp. Due to his reputation and track record, I never had one moments doubt about his ability. He is a professional, gentlemanly, classy guy that answered any questions I had. I did have to make my own choice of valve, if that was to be needed. You should not have to have one moment of concern about your surgeon. There are enough things that we foolishly worry about.
I felt that If Clinton, Barbara Walters, David Letterman, Mayor Koch and many others choice my surgeon and they could go to anyone in the world and my cardiologist referred me to him anyway, then why not. By the way Dr. Oz is from the same practice.
Check Dr. Craig Smith out on this site.
I am 4 months post opt from Mitral Valve replacement. My first surgery was in 1993 when I was 17 years old, I choose a tissue valve. It lasted for 18 1/2 years, but I would say the last 5 or 6 years of that time while it was deteriorating I didn't feel well. But I think the tissue valves are better preserved now vs. how they were in the early 90's so yours could last even longer than that.
In November I had surgery again and this time I choose to have the mechanical valve as I didn't want to do a 3rd surgery. I am 36 years old. Choosing the type of valve is probably one of the hardest parts of this process and only you can decide what is best for you, but I agree with what Chuck said below, do not let the Coumadin scare you. Sure it is a pain to get my INR tested every month, but not a bigger pain then the interruption of another surgery. Also, I can hear my valve clicking, it sounds like a small wrist watch, over time it's beginning to fade. The sound is not an unbearable sound either, I kind of like it. It reminds me of everything that I have been through.
When making your decision just think that the doctors will work with you to adjust your Coumadin levels to your lifestyle. You do not need to adjust your life to the Coumadin. You just have to be a little bit more aware of everything that you’re doing and everything that you put in your body. My experience with Coumadin so far has not been as scary as some people might think and I have not changed my lifestyle at all. Both of my doctors said that I could run a marathon if I wanted to. I have also heard that they are working on getting a new drug approved that isn’t so hard on the body. Hopefully that comes out in the next couple of years. Anyway, Good luck with your decisions. If you have any questions regarding the mechanical valve, tissue valve or the Coumadin, I’m more than happy to help!
I you're asking the right questions. Make sure you keep doing that as you are your best advocate.
Regarding coumadin, my father was on it for a short time (he was misdiagnosed), I talked with others that are on it, and I've read articles from a number of more - some in Adam's book.
The overwhelming theme I've gotten from them is: Don't let the fear of coumadin be your decision maker. So I took that to heart (pun intended).
What I've seen is that the people who are active before coumadin remain active after coumadin. I've been on a slow down hill path with my valve performance for the past 15 or so years. Over the last year, it has changed significantly and I'm exhausted most of the time.
My choice is mechanical because I want the best chance of having this done once. I want to do the things I've been slowly stepping away from over the past 15 years. I may beef up my first aid kit a little :) But I will not fear the coumadin.
As far as driving, I live in the Atlanta Metro area and drive on 400 every day. That's one of the riskiest things I've ever done. I'll continue to trust in my abilities to avoid those that are eating, reading the paper, texting, putting on make-up, talking on the phone, or doing who knows what else.
I'm about to survive and THRIVE after major open heart surgery. After that, coumadin will be a breeze!!
As a side benefit, if I tick loudly enough after I get the mechanical valve, I might get some entertainment with TSA at the airport. Could you imagine if they heard me Ticking?!? I crack up just thinking about it!
This is a highly personal decision. That makes it easier, doesn't it (yes, I'm kidding). I went through the same decision as has everyone on this list.
In my research, in general, the people that go mechanical will tell you not to fear coumadin and not to make that your reason for not choosing mechanical. In general, those that choose biological valves at relatively younger ages (I include you in that as I'm close to you) say they don't want to deal with coumadin and would rather have a second surgery.
The smallest percentage choose to go Ross. According to Jeff's research, it can be expected to give you back a normally expected life span with no coumadin and potentially no re-surgeries.
So with that, you'll have to weigh the pros & cons of mechanical/coumadin; biological with the virtual certianty of at least one re-surgery potentially through a catheter; Ross with potentially a normal life span versus a much more complicated surgery and the risks of a longer time on the bypass machine.
I'd love to give you the "right" decision, but I can't because I'm not you. Mitch chose biological, Jeff chose Ross, and I'm going mechanical. We all went with what we were most comfortable with.
As I believe Mitch said, do your research and make a decision. Once your decision is made, you will feel better. And I wish you peace in your decision.
Hi Steve, Decisions are hard to make espically when everyone has their favorite for whatever reason. I will tell you my daughter three years ago March 2nd had a valve replacement. She at the time talked it over with me and we both agreed the mechanical valve would be the best for her cause of her age of 29. But it also made her have to take coumadin for the rest of her life. She is doing fine but always has to go for INR checks. Has a hard time with keeping blood regulated. I say its because of 3 kids and a lot of stress. Now on the other side I have heard here on HVJ that there is something new coming on the horizons. It might be if that would ever have to be replaced you might not need surgery like this again but it is thru a catather. The good thing is you have a lot of time to think about what is good for you. Hope I kinda helped in a way. Good luck
For the long haul
Hey Steve, hang tough!!!! Continue to do your research and know in time, the right decision for you will come to you. I know it is hard right now, but try to be patient and weigh all the options. The right decision is the one that you feel most comfortable with. If you are thinking surgery in May, you have plenty of time to research and decide.
Steven, HUP is awesome, Dr. Joyce Wald (Cardiologist), and Dr. Joseph Woo (Surgeon0, and Dr. Hutchinson (Pacer/Defib) have me feeling like a new person just a little over 5 months since surgery. Not sure who you will be seeing but I am sure they are all excellent doctors if the are at HUP. If you get biological valve the meds are easier, Dr. Woo used pig for me. Feel free to email me if you have any other questions I may be able to answer. Elizabeth email@example.com
Hi Steven - I had my surgery on 2/20. I am 38 years old. My cardiologist was mechanical. My surgeon leaned toward tissue. My surgeon told me with the new treated tissue valve that I could expect it to last 15 to 20 years.
This was a decision I would go back and forth on until Friday before the surgery my surgeon called to ask what we were doing and I said tissue. No regrets. I know I will need to do this again in 20 years but it shouldn't be via open hert surgery.
I really in the end didn't want to deal with Coumadin. Plus I wanted to be able to wrestle around with boys ( 5,3,19mos).
I am doing well 3 weeks post op. My surgey only took 2.5 hrs. I was in the ICU less than 24 hrs.
Any questions let me know. Jimmyjohnson26@gmail.com