Awww....how sweet! What a great way to explain to your kids! Good luck on your trip to the Big Apple tomorrow, hope you LUV Dr. Stelzer. But watch out for Mitch Friedman, talked to him today and he is out walking! Gotta love him! Let us know how your visit goes!
I caanot believe everything that you a going though - the feelings, the emotions, the decisions! I am amazed by your strength. I know that everything will turn out wonderfully and you will be using that gym in your house very soon to recover. I'm sorry that we aren't closer to help out. Please know that our thoughts as prayers are with you, Niki and my wonderfully niece and nephew! Love you all!
I just saw Niki's email...so sorry you are going through this, but it sounds like you are in good hands--we are praying for you. I'll be watching your journal and anxious to hear updates.
Take care--Marisa and Paul Maxey
I'm so happy that you made your decision and got your surgery date scheduled! You will do great and you will be on your way to recovery in no time. You will be in my thought for the next several weeks! Good luck with everything!
I'm right there with you Chris! (Even if you did steal my date :) Won't that by funny as they wheel you out, I'm being wheeled in? LOL. Thanks to you too, for all your support and research. It IS the hardest decision we have to make in our lives. Well, that and what's for dinner!
Well...another one jumped in line in front of me!! Just kidding Chris...I figure I don't want to go a minute before my God appointed time. So...going to the big apple! I know you have the Texas Heart Institute right there, but if you're doing the Ross, sounds like this doc is the absolute best. Don't blame you one bit. So...you will have butterflies for a while, I had them like crazy after getting the date, but they have strangely (or not) calmed down now. At least for today, lol. It helps to hear about the success of all our HVJ friends. Keep us updated, we're here for you!
Hi Chris , I go every 3 weeks to a Coumadin clinic
At the Hershey med center in pa. I don't do any
Testing at home . I take 1/2 a pill at 6:00 pm every
Day. It's been very easy, I've cut myself several
Times ( no big deal ) its not nearly as bad as I thought.
My doctor said I can do anything that a normal person
Can do ! ( just try to avoid blows to the head )
Which is something we should all do ! (lol ) Im
51 yrs old I walk, jog, work construction, lift weights
Few beers now and then. It's been very easy .
Like I said earlier Chris , I know your scared, but
Keep in mind Chris less then 2% have died from avr
And of those many are over 75 yrs old with other
Health problems. You will be just fine ( trust me ) they
Know what their doing !! The peace of mind alone is
Well worth it , plus I feel great ! And so will you Chris! I also had an aortic root graft done at the same time. Chris I had 2 chest tubes,breathing tube, cath . Al were painless coming out !! Not nearly as bad as I
Thought . I was so surprised :) truthfully I'd rather do
Those tubes than ( a root canal ) so Chris try not to worry !!!!!!!! You will be just fine :)
Hi Chris , I had the st Jude's put in 11-30-2011
Everything went great ! Coumadin is no big deal
Compared to reoperation , or worst . I feel great
And yes I can hear my valve if I chose to focus on
It. ( I kinda like it ) it's part of me now ! So I go get my
Finger pricked once every few weeks. It's really no
Big deal Chris. Mechancial valves are tested to last
A life time. That's what it's really all about , living
A long life ( event free ) Good luck Chris
Oh Chris the operation isn't nearly as bad as you
Might think ! Try not to worry ! Roger ( AVR )
Thanks for the link, I read it and it is very interesting. I think that my valve isn't very loud at all. I mean, I hear it every day but not all the time. It definitely depends on what I'm doing, what position I'm in and how loud it is in the room. If it’s really quite and I'm by myself I hear it. If I'm with a bunch of people I don't. It doesn't disrupt my sleep or anything like that. I guess I just take the approach that I'm glad to be alive and that this little clicking sound is making that possible. I was pretty worried about the sound before I had it done. I asked two cardiologists and a surgeon about it and they all said I probably wouldn't hear it. But even knowing now that I can hear it, I wouldn't change my decision. As far as activity restrictions, my cardiologist said I could still do all types of exercise (I could even run a marathon if I wanted to) He also just advised me to not do anything "stupid" that would or could cause a head injury (because of internal bleeding). He said it probably wouldn’t be a good idea to ski, ride a motorcycle, go rock climbing and risky stuff like that, but I’m not that type of person who does much of that anyway, so for me it wasn’t a big deal. You do have to be more careful in your daily decisions but you are at risk of bleeding with almost everything that you do in your daily life anyway, like driving your car. Getting the INR levels in the acceptable range have been fairly easy for me. But going and getting the blood draws, waiting for the Dr’s. Office to call back with those results is sometimes frustrating but not enough that I wish I would have done something different. For me, my choice was easier, I couldn’t afford the risk of doing OHS a third time nor did I want to. You can hope that the surgery in which they do the valve replacement it is better in 15 to 20 years and it might be, but in reality when making your choice now you have to plan that it will be the exact same open heart surgery process. When I chose the pig valve when I was 17 I choose it because I wanted to have children and a normal life, but I also at that time thought that the surgery process would surely be different by the time I had to have it again. And 18 years later, the process in which they did it was the same, the recovery was the same. They had made definite advances in the amount of time it took to do the surgery and the time in ICU and all of that stuff, but the overall experience was basically the same. You just have to decide based on your lifestyle what valve option will work best for you. Let me know if you have any other questions or if you need anything at all. I hope that my information helps you in some small way! I look forward to following your progress throughout your journey.
Decisions, decisions. To be fair, Dr. Stelzers operative mortality rate is 1% (or just under). 6 out of 504 for Ross. Like most surgeries, this one is very physician dependent. I would not let just any surgeon do a Ross. Experience counts big time. Just my 2 cents, as I westle with the same decisions as you.
HI chris... Nancy here.. going in Th 2/9 with a MOO cow/ Tissue and had the same concerns everyone else did. My lifestyle helped dictate my choice. Active/ travel/ and also I'm not great with details so the Mech was not a good choice for me. Plus when I heard the ticking could be heard..that was as I say a no brainer. I agree with LINDA below, sad it's US that has to make the choice... I can understand why the DR's don't wanna partake.. just that we have 'no experience' in this..a nd you'd think they'd help us. "UP TO YOU" isn't a great answer.
but I"m happy.. and if I get 18 -20 years like they say; it'll be a differnet method. So like most you'll be hearing from - -"best of luck".. with what ever you choose. I'm packing my bags this week & ready for my CATH and the big V day. best to you. Nancy Friedman, AVR FEB 9 st louis MO
Chris...this is the $64,000 question. I am also struggling with the type of valve to get. I am 63, so not as young as you are, but still young enough that if I go with tissue valve I might require surgery again in the future. Not a pleasant thought. In addition to my valve problem (aortic stenosis) I also have a PFO (patent foreman ovale) which is a small opening between the chambers of the heart that did not close completely before I was born. When this was diagnosed several years ago, I was put on coumadin because of the threat of stroke. I took the coumadin for about 8 years before going to a full strength aspirin, which is now believed to be just as effective. I had no problems with the coumadin, you do have some restrictions but honestly they are not as "tight" as you might think. And I didn't have any problems with bleeding any more than I do with the aspirin. The only problem I had with regulating my INR was if I had to come off the coumadin for some procedure, such as when I had a colonoscopy. It took a while to get it leveled back out, but once I did it was fine. I don't know what the "procedure" would be if you have a mechanical valve and then need to come off coumadin for some procedure. That would be a good question to ask.
I believe that this boils down to surgeon preference...it is my understanding, that although I have not actually met with my surgeon yet (Dr. Gillinov at Cleveland Clinic) that he prefers tissue valves. His nurse told me that he too believes that the catheter approach will be perfected and available to all by the time the tissue valve would need to be replaced. However, I feel as you do...the jury is still out on that and the St Jude has been around a long time and rarely does not last a lifetime.
I will not have to decide until the day before my surgery when I meet with Dr. Gillinov, and I change my mind day to day..but right now...I am leaning toward the mechanical. The almost certainty of having "something" done again either by catheter or open heart does not sound appealing, especially considering how old I might be when that time should come.
Anyway...I think if you talk with another surgeon at another facility...he might recommend tissue over mechanical. But in the end...I think it will be our decision.
Good luck making up your mind, let me know what you decide and if you get any further info, I would love for you to share with me.
I have had both types of valves and this is my experience. When I was 17 years old I had a pig valve put in (mitral valve position) it lasted 18 1/2 years. Which was a very long time for it to last being implanted into someone so young…so they told me… This time I went with the St Jude's Mechanical valve because like you I didn't really want to do OHS again and the more OHS you do the higher the risk. I have been on Coumadin for 3 months, I haven't had any problems with it at all. My INR has been in the "acceptable" range of 2.0-3.0 since December. I'm now checking my blood only once a month and I take what seems to be a low dose of the medication. I haven't really been very strict with my diet either, I've kind of just eaten what I wanted and haven't had any problems. From my understanding, it seems that it's only a problem if you eat huge amounts of vitamin K every day, and even if you do that, they would just adjust your medication to help keep the levels in the correct range. Taking the Coumadin has taken some time getting used to, but its working ok for me so far. I definitely hear my mechanical valve every day. It's not a bad sound at all though and I'm pretty much used to it. It sounds like a small watch, just clicking away. Maybe as time goes on for me I won't hear it anymore? Even though I knew I didn't want to have OHS again I still struggled with which valve to get. Having the tissue valve was so easy, no complications, no medication to take, No being extra cautions with activity. I just lived with the thought that I would have to have it replaced again at some point. And I always prepared for that time. Now with the mechanical valve I can hope that I never have to do it again and that has been a huge relief to me. I just have to be more careful with what I do to my body each day, but that’s not such a bad thing either... I wish you luck with your decisions...It’s a very tuff one but a very personal one too.
I am in the same boat as you. 38 and need my Aortic valve replaced. I am back and forth on Mechanical Vs Tissue.
Surgeon told me that as young as we are even with a Mechanical valve there is a good chance in 20 years we would need it replaced again. My surgeon did suggest that he is seeing the tissue valves last longer to 18 20 years as well.
So I am faced with Blood thinners and watching my Vit K and not injuring myself or tissue where that is not a problem but I know for sure it won't last as long.
I would say at the moment I am leaning toward tissue. I have to decide soon as my surgery is 2/20.
Let me know what way you choose or if you get more data please share.
You know son - coumadin is not bad at all. I took coumadin for at least two years after my last hospital stay for diabetes. I didn't bleed any more than normal – I don’t have time to bleed - and it has no side effects.
Best of luck to you. So I will throw another option at you. Why not a simple tissue valve? As I said mine lasted 20 years and I am up for a re-op and will get another one. But I figure and my Dr agrees that very shortly the transcatheter aortic implantation technique will be available for a wider population. So if you need another in 15 or 20 years it may not even be a full open heart procedure. Food for thought !!!
My daughter is fine now. She had the St Jude mechanical valve put in.She was in critical condition when she had it. The doctor had to stretch her aorta cause it got so narrow. The only thing she complained about and just had to get use to it, was that she can hear it ticking. She got her kids tested cause of me. Two of them came out ok but little Cortney has the bicupsed aortic valve. She has been thru the mill with her. She also has asburgers syndrome. The doctor isnt doing anything as of yet. He told Stephanie not to worry that she most likely wouldnt need surgery until she is 50 or 60. She will have to take her back in 2 years for another echo. This all started with my Dad and his heart problem. He had Wolfe White Parkinson Snydrom later had an adominal arotic anusersym and died about 3 months later with conjestive heart failure. His heart was just worn out after 12 years. With Stephanie having the mechanical valve she has to take coumadian for the rest of her life and always has to have INR checked all the time. Until Later Linda H
If it helps you any with age my daughter had aortic stenosis, was born with heart murmur and had a valve replacement when she was 29 years old. Now I have the same thing but also with an anuersym at 65 years old. Her daughter was just diagnosed with a bicupsed aortic valve and she is only 8 years old. They will just be watching it for now. Good luck to you. Linda H
We are on the same fast track. Maybe we can get a "2fer" on the Ross. In these tough economic times maybe a 2 for one deal is out there. I think I saw an offer on Groupn - LOL. On second thought, maybe getting the best deal on heart surgery is not the best thing to do. :)
Hi chris, i am having surgery next tuesday to replace my bicuspid aortic valve. I was 38 when i had mine diagnosed i have managed to make it to 49 which is awesome. Its very comforting to know there are others out there going through the same thing. We are not alone and we will all be ok. Take care and heres hoping you will sail throught this you have age on your side and a loving family routing for you.
I am in the same boat as you. 38..I have 3 kids and same condition with a bicuspid valve. I am also tired of hearing "you are too young to be here." Like that makes me feel better.
I am having my Heart Cath on Tuesday. Glad to hear it went well. Do they give you anything? What should I expect?
My surgery is on 2/20 at 8:30am. I am still deciding between mechanical or tissue valve. I think I am leaning toward tissue I do know that I am doing full blown open heart surgery. I will have the full blown open heart surgery. I am ok with that.
Hey Buddy, Just wanted to let you know I am here for you. Rissa, the kids and I will have you, Niki and the kids held up in prayer daily. I don't think I need to tell you this but you are truly blessed with a wonderful family. Tif & Caden are a testament to you & Niki, your faith & character. Please don't hesitate to ask if there is anything we can do to help.
Can't wait to see what your RB game will be like with a overhauled ticker....pro tour maybe?
HI Chris....I struggled with the same thing...how and when to tell the kids. Mine are in college so I wanted to wait until after finals. It was huge to finally get that out of the bag so I could tell my church family and get friends praying for me. And boy did they pray....I had Mitral Valve Repair on 1/4/12 and also a Maze procedure. I had some issues but nothing a few days in ICU didn't take care of. I am almost 3 weeks post op and feel really good. Seems like once I hit the magic 2 week mark, things got better and better. You have a good doc...I have a couple of friends who have used Lawrie....and say wonderful things of him. I had mine done at the Heart and Valve Institute at Hermann Memorial SW....loved my surgeon as well. Dr. Robert Baldwin. My cardiologist would only recomment 2 of them...yours and mine. I will be tracking your progress. If I can help you any at all please let me know. Will be praying for you and your family as you get through these first steps to what will be a new lease on life and feeling better. God bless you. Jamie Todor
You gotta work those kids :) I told my three (15, 11 and 7) that I am going to have a "cow bell" and clank it whenever I need something, including changing the TV channel even though I have a remote. - LOL
On a serious note, I told them last week after a family dinner at home. Not sure they really understand the seriousness of it all. (at least maybe the 15 year old does).
Its the old man of Kingwood RQT ball calling - you need anything give me a shout. You got it.
Maybe now I can keep up with you - even with a suspect ticker you always had my number on the court
Get well - and we will see you Tues. if you can make it.
Chris, I agree. You have to go where you think the best place is for the type of procedure that you want and, like Linda said, where your heart is telling you to go. I only would add to make that decision after a divine conversation. God will guide you.
I trust you to make a good decision.
Love you lots,
Hey Chris...you go where your "heart", "instincts", whatever we call it tells you to go. When I first knew that one day I would need surgery, I started the research. I always kept going back to Cleveland Clinic. It will be very inconvenient for everyone for me go that far....but that is what "whatever it is...maybe even God" is telling me to do. So...I'm gonna listen. You do that too! If you feel inside that you need to go to New York, then that is where you need to go. I know Texas Heart has world class surgeons and you would probably be fine there, but if you want the Ross...then go where they like the procedure and do it often. That may be in Houston, may not be.
Listen to me....I sound like I know something...I don't know anything, lol. I have questioned myself TODAY about going so far away, LOL. But I haven't changed my mind.
Good luck...go with your heart (although, like mine it's not kicking on all eight cylinders)!
Hi Chris, Your daughter "old soul" sounds like one of my grandaughters. She talks exactly the same way. From a very early age, after she started talking, she put complete sentences together with remarks that made us grown ups just look at each other and think "where did she get that??" Sounded like a "grownup" at age 5!!!
You are fortunate to be in Houston, are you going to Texas Heart Institute? I consulted there, but my insurance was going to be a hassle, they are not in my "network". So, I will be going to Cleveland in March.
The waiting is awful! I've known since November that it was time, but March was the first available date that Dr. Gillinov had. Hope you won't have to wait that long.
I'm sure your kids will do fine and hey, maybe you do need to let your daughter go with you...she may ask exactly the right questions!
Keep us posted.
Geeez some people will do anything for attention =) Thanks for the phone call this morning -- I am glad to hear you are taking this seriously and doing your homework! (for once haha) you know me and the LTF guys are here if you need anything at all.
love ya man,
Hi Chris, I am two weeks away and joking about it with my girls (ages 11 and 6). My 11 year old, is like "really, we like need to take care of you now???" Like it will be such a bother for her. LOL, she is really a great kid, but she is a true 11 year old. All my 6 year old wants to know is "are you happy your mommy coming to take care of you? Because I am happy Nana is coming to see me."
What a learning and growing process this is. I'm so proud and somewhat amazed at the way you are tackling this. You are so special to so many of us and I know that God has big plans for you! What a testimony you will have and what a difference you will make in the lives of others as you share the whole process. My prayers continue to be with you and of course Niki, Tif and Caden. You are all blessed to have each other. Please know we are here for you!
Love you hun,,
Our family is so blessed that you are part of it! I know that you are a Godly man and I am so thankful for that. I want you to know how much you mean to the family, but also how much I care about you. You are a special person and I am fortunate that you are one of my sons-in-law.
You are strong in body, character, and faith. I am so happy that the problem was discovered and will be able to be corrected. I think tif could probably come up with some pretty good questions! Let her go!
I love you, Chris. Thank you for being the man you are.
May God always be at the center of your life. You are my blessing and I need you. God has placed a conforting feeling around me just to let me know that you will come through this better than you have entered into it.
Before I had my aortic valve replaced (in May 2010) I was dizzy or light-headed much of the time and I had a hard time thinking and my memory was pretty much gone. My cardiologist explained it was because I wasn't getting enough blood to my brain. This is pretty common with valve patients . . . many simply faint. (I never did.)
The good news is since my surgery, all of that is gone. I'm sure you'll have the same results.
My name is Jeff Shebovsky from Orlando, Florida. You can learn more by visiting my journal. I have a biscuspid aortic valve but I was diagnosed at about 13 years of age. I am 45 now. I am asymptomatic still but the valve has progressed to a severe stage now. I am STRONGLY considering a Ross procedure, which I originally learned about from Adam's book - which I too absorbed like a sponge. I am going up to NY on Feb 2nd to meet with Dr. Paul Stelzer. He has already reviewed my records and I have had email and phone correspondence with him. I am apparently a very good candidate for this procedure. After my visit on Feb 2 I will decide for sure and then set a surgery date for Feb or March. My cardiologist also said I would need a mechanical valve at my age, but I do not want to be on Coumadin for the rest of my life. After seeing Dr. Stelzer speak at a seminar recently, my cardiologist said that perhaps I should meet with him. At first he blew off the Ross procedure until he saw Dr. Stelzer and was blown away by him. Dr. Stelzer has done more Ross operations than anyone else in the U.S. He just did # 504 last week. In any case, if you'd like to speak, you can email me your #. I'm only slightly ahead of you in terms of where I am at.
Hi Chris fainting is definitely one of the symptoms of your conditions. Take it easy until op day. You have a faulty engine don't push it. Good news is that that repair job is fantastic. You won't know yourself. Best wishes.
PS pre op is so stressful - worse than post op really.
Welcome to HVJ. I missed your first post, sorry about the belated welcome.
It is an interesting journey. In the last month, I have gone from being in your shoes to now being 2 weeks away from surgery. I have mine scheduled on Feb 2.
I agree waiting for anything around this can be tough. Not only am I counting the days until surgery, but I need to get a CT scan scheduled before then and I am stuck waiting for approval from my insurance company. A friend of mine pointed out, "why be in a rush, it is all downside risk?" (as in if the results are positive, I am where I am today. If they are negative, I need more done during surgery.). So why do I care, BECAUSE I JUST HATE WAITING! But, hey, I am a New Yorker and that is just part of my DNA.
I am completely asymptomatic, so can't help you there.
Good luck with everything and keep posting and asking. The feedback you will get is amazing.
When I first knew that I was going to have my valve replaced I looked at Dr Lawrie's BIO as well, I thought I might actually pick him as my surgeon until my cardiologist refered me to Dr. Ott. I hope that you get the information that you wish for while checking into the Ross procedure. I have a friend who had that same procedure done about 13 years ago and she is doing really well. My recovery is going really well. I have had no major problems or complications. I am still pretty sore in my chest and incision area, but I am able to do everything that I was doing before the surgery now. I think its just going to take a bit more time for the aches and pains associated with breaking the sternum to heal. Also, I still get tired at the end of the day, but i'm exercising alot during the week to build my stamina back up. Overall, I feel really well. let me know if you have any other questions. Hang in there the waiting and getting everything schedule is the hardest part!
Welcome to the "impatient patient" club Chris! Waiting on this is driving me nuts. To answer your question about dizziness, yes I am experiencing intermittant vague dizziness, nothing drastic, but my cardiologist told me that is the stenotic valve. Getting a few very vague, not all the time symptoms I think. But then, it could just be anxiety, who knows? I, like you just want it done!
Trying to be patient, but still waiting....Linda