I LOVE the internet! But in the same breath I HATE it!!!!
I am sure you ALL understand.......
For every great piece of advice I get on the tissue option, I then get a piece of advice that says a mechanical valve is the way to go!!!
I KNOW I am making the right decision to have the surgery. I am READY for the surgery, and the pain and recovery needed after......I am NOT ready for the CHOICE!
What it breaks down to is I am afraid if I choose a mechanical valve, I will handcuff my options for future advancements! IF they come out!!!
I live in MN!!! I am just a 2 hour drive (if not closer) to the MAYO clinic! My own DR who I respect greatly says that if I went to the MAYO, they would ONLY install a tissue valve, and my DR is just FINE with a tissue valve option! He would just HATE to see me take a tissue valve ONLY to have a LACK or NEW procedures come down the pipe where they could do this surgery via a catheter and be considered minimally invasive in the time the tissue valve would wear out! (Plus...my DR is retiring in less than 5 years, so he would not be available for the 2nd surgery anyway!)
Today is my last day of work for a while...actually about 2 hours left! I am going to miss this place! I do like my job and like my co-workers!!! Tonight I am meeting some friends and family for a "good luck Pete" party! I think it's time to just forget about this for a few hours. I do have until Tuesday Morning to make a decision.
Still....you all know it will be on my mind.
Would a 2nd surgery REALLY suck THAT bad? Trust me....I know it's NOT going to be fun.....but are the weeks or even months of pain or rehab worth the ability to live my life the way I am used to? Or do I do the "safe" thing and just get a mechanical valve hoping a new drug (Like Pradaxa) will come out to be the best of both worlds....
I had a GREAT talk with my Dr's P/A (Assistant) today....
OH!!!! I know I sound stupid when I say this but in the confusion I forgot WHAT VALVE I needed replaced!
It is NOT the Mitral valve!!!! It is the AORTIC valve!!!!(As I am having severe AORTIC Regurgitation!!!!)
The conversation started GREAT! She understood my issues and said "go with a tissue heart valve"! We discussed the pro's and con's and the tissue valve and though a 2nd surgery was needed.....she has had a number of patients that have gone with the tissue option with the idea if a 2nd valve was needed, the surgery and process has gotten better and MOST of the people say surgery #2 is easier than the 1st! So I am NOT crazy thinking this way!!! LOL...I am a bigger guy.....6' 4" tall and right now about 255 pounds. She said a tissue valve for my size would be fine....that larger valves usually do better! The bottom line is the tissue valve seemed to be a BETTER option for my situation!
Then she asked me my age......and I told her I was 41! Well, for some reason she thought I was in my 50's! (Like 51!!!!) This was an INFORMAL conversation so she did not have my file in front of her, and that changed her tune a little.......
She then brought up the possibility of A-Fib with a tissue valve and if I did develop an A-Fib I would have to be placed on Coumadin even on a tissue valve!!!! And the chances were between 30-35%!!! With an increased chance with an enlarged heart (which mine is slightly) and prior heart murmurs! (Which I have!)
She also brought up the option of the "Maze" procedure where there is a quick procedure done to the heart that then decreases the chances of a-fib! So it seems like a shot in the dark!!!
I am a Christian and the hospital I am going to is a "Christian" (I say that as I believe they are more of a "Spiritual" hospital though they are named after a Saint) and we talked about faith and signs from God. She said she had a calendar on her wall that had pictures of churches where they had a billboard in front of them with different sayings on them, and the one for today was one about having faith in something. She related it to the faith I need to have in my Surgeon as he IS A VERY SMART and talented Surgeon!
We hung up the phone after talking some more....but the few things I KNOW now are:
#1- I am going with a St Jude's Heart valve! Either a St Jude Regent mechanical valve or a St Jude Bio-core valve.
#2- Regardless of what valve I go with, I will be BETTER off than I am now! I need to choose the BETTER of the two options, but neither is a "bad" option.
#3- The "Ross" procedure is NOT an option......I guess it almost killed Arnold!
#4- Pig tissue is the standard for tissue valves. There may be studies on Horse or other tissues......but pig is still the best option. (According to my DR.....and I trust him)
#5- If I were on Coumadin my INR levels would be between 1.8 and 2.2.....which is not a "MEGA" dose! Coumadin IS an "evil" drug......but at a level of 1.8 or 2.2 that is considered a "minor" amount.
#6- Home testing is the best way to go!!!! If I do go with a mechanical valve......home testing allows me to have a little more of a "do what I want" life! I would have to note "triggers" that may change my INR levels, and test it after or before those triggers.....but it IS possible to live a "semi-normal" life while on Coumadin!!!
So.........I am NOT as screwed as I thought I was!!!
BUT.....there is still a lot to think about.
My thought at this time has SO MUCH to do whit the reply to my guestbook Dean left!!!!(See the one left Wednesday by Dean Muglia!!!)
I think he brings up a lot of GREAT points! I think he nailed in on the head with a "traditional" hospital vs. a "progressive" hospital! I have FULL faith in my hospital....they are doing what they think is the safest option for me with proven techniques......but......what is not to say things will change in 10 years OR LESS!!!
There is talk of a replacement for Coumadin for patients on the St Jude's Regent valve! It is such a well-designed valve that you may be able to get away with a less aggressive option!!!! (I do NOT have the name of the drug, so PLEASE ask your Doctor about this....)
So it's still a tough decision! If you put a gun to my head and said "make a decision" I would say the Mechanical.....but tonight and up until Monday Morning.....I will be thinking of reasons why I should go with the tissue valve.....so we will see....and as ALWAYS I thank you for ANY advice you can send me!!!!
Met with my parent’s friend who is the cardiac nurse at the hospital that I will have the surgery at. God Bless her!
She answered a LOT of questions!!!! And eased my fears of some of the recovery process. (One being this hospital will NOT keep me intubated AFTER I wake up!!!! She said I will not remember them placing the tube in or taking it out!!! Plus there will be NO restraints!)
She also made sure I knew the fact I would be on Coumadin is NOT as big of a deal as I am making it! My INR level would be more like a 2 or MAX 3!!! (Where the "standard INR level of a person NOT on Coumadin is 1!) So a "minor" about of Coumadin! (Still...I feel it's like saying "it's like being shot with a 22 cal vs. a 45 mag....either would SUCK....just one not as bad as the other...)
I have YET to make up my mind!!! Tissue or Mechanical!!!
I will include the list of questions I have come up with on BOTH valves!!! Please feel free to copy them, or if anyone has answers...shoot them to me!!
After much thought and guidance from professionals, friends, family, and faith, I have come up with a decision I would like to explore.
My thought is to receive a tissue valve for my upcoming surgery on 9/20/2011.
My thoughts for this decision are the following:
#1- A tissue valve allows me to not only will allow me to continue the quality of life I am used to experiencing, it will improve the quality of life I was used to prior to the heart valve issue affecting my stamina and health.
#2- It will allow me to abstain the use of drugs such as Coumadin for the time the valve will be functional.
#3- This will give me time to explore options of other techniques or future procedures/products that may be a better fit for my lifestyle.
#4- This also allows for continual refinement of the surgical and recovery methods. (In that the 2nd surgery may not be as invasive or will have different Surgery and post-surgery treatments)
#5- With the idea of the 2nd surgery installing a mechanical valve, and some type of daily medication required, this may allow time of the new medication to not only provide itself as a viable option for my condition, it also may place the medication in a cost bracket that would not be as much of a financial burden than it would be in the future.
I also understand the risks involved with needing a 2nd surgery.
#1- A fatality rate that may be higher than it would have been on the 1st surgery.
#2- Additional “pain and suffering” in the form of recovery.
#3- Time off work and/or economic/emotional distress.
#4- I need to discuss this option with my current insurance provider to see if any exclusions would be imposed.
MECHANICAL VALVE OPTION
After much thought and guidance from professionals, friends, family, and faith, I have come up with a decision I would like to explore.
My thought is to receive a mechanical valve for my upcoming surgery on 9/20/2011.
My thoughts for this decision are the following:
#1- This being the most important factor and carrying the most weight…..chances are an additional surgery would NOT be needed.
#2- The chance with complications with a mechanical valve are less than those with a tissue valve.
#3- Mechanical valve technologies have plateaued in the last 10 – 20 years with no real true advancement scheduled to come out soon.
#4- By advice from my Cardiac Surgeon and other people in the medical field, a replacement to what I feel is an “aggressive” drug (Coumadin) may have a more “user friendly” replacement.
#5- Even though the replacement for Coumadin has not been released, the time I would be on Coumadin may be a short time compared to my life expectancy and the life of the mechanical valve. Also the level of Coumadin in my situation is overall a “low” amount compared to some other applications lowering the risks of “blood thinner” based concerns.
The risks involved.
#1- With a mechanical valve installed I may miss out on any new options for valves that may be produced that would allow me to be on a much more “active lifestyle” lower impact drug such as Coumadin. (IE Aspirin therapy only)
#2- An increased risk of infection on a mechanical valve.
#3- Possible mechanical issues with the valve.
#4- The risk of a stroke or heart attack with a mechanical valve if I needed to discontinue the use of Coumadin for future surgeries.
#5- Minor issues such as the noise the valve may produce
And here is a list of questions I came up with that I am going to ask my DR and his P/A tomorrow...
#1- What is the “official” name of the issue I have and the name of the procedure needed to fix it?
#2- Repair. Is repair an option? Even upon direct inspection of the valve during surgery?
#3- If I were to go with a mechanical valve what make/model is it?
#4- If I were to go with a tissue valve what make/model is it?
#5- Is “pig tissue” the only valve material that can be used? If so why?
#6- Are there options for tissue valves? (I have heard horse tissue may be longer lasting?)
#7- Is the “Ross Procedure” an option with my situation? (FYI…this is where they use the tissue from a valve and repair the valve that needs repair…then replacing the valve they used for the repair with human tissue…I guess leading to the recipient not needing anything other than Aspirin therapy)
#8- What is the name of the possible replacement for Coumadin? (Understanding this is an OPTION only and in no way is guaranteed option)
#8a- Is INR testing required on this new drug?
#9- Are there new more “non-evasive” surgical options on the horizon? (Such as replacing the tissue on a tissue valve via a catheter option?)
#10- If a mechanical valve is installed, is there an option of having a different valve installed?
#11- Have you heard of an option of a mechanical valve with an option of a less aggressive blood thinner option such as aspirin therapy and or Plavix?
#12- To my understanding the INR level I would be placed on for a mechanical valve is between 2-3. Is this correct? Also is It possible if someone natural “clotting” ability is lower than most peoples do they lower the level or dosage of blood thinners to take?
#13- Is it true that if on Coumadin and a surgery is required in my future I would need to STOP taking the drug therefor increasing the risk of a stroke and/or heart attack and is this risk increased with a history of strokes in my family?
#14- Is it true that there is a risk of needing a second surgery due to mechanical valve issues? (I understand with either valve there are risks, but is one valve a much lower risk than the other? Or are they about the same?
I know some of the questions make me sound clueless.....but I just want to make sure I have all of the information correct!
I am about 1/3 through the book (Patients guide to Heart Valve Surgery) and it is helpful, but have not found a lot of information that relates to my situation yet.
The book gives a LOT of information on "possible new procedures" but most of them (if not ALL of them) do NOT pertain to me....and that made me feel sad.
"Hey....look at all of the cool new things you can't have"
Still....the information in the book is something I think has been worth the $25 I spent...
So.....another LONG post!!!! And no "answer" to my question yet....
Still, the people who have posted entries in my "guestbook" are GREAT! Your info has been GREAT!!!
THANK YOU for all who have placed responses on my guestbook! Your thoughts are comforting!
It makes me feel easier that EITHER decision I make will be "OK" in the end. It's not like if I make the decision for the tissue valve OR the mechanical valve it will have DIRE consequences. Each has a pro and a con list....but the bottom line is they are BOTH positive in my life!
I want to share with you a letter I wrote to my DR on Saturday AFTER I read a number of journals.
It is written to my surgeon but it really puts my thoughts into words....and to me this is SO IMPORTANT (and why you may just see TOO many journal entries from me in the next week...)
Hello Dr. Emery!
Well...we are a little over a week away!
I just wanted to shoot you an email as I have been close to “obsessed” over the decision I should make on what valve to decide on.
I first would like to say I completely respect your feedback in your feelings I should have a mechanical valve.
I have always subscribed to the school “you listen to people who know” over non-informed people with opinions and various ramblings on the Internet! (Ahhh the Internet….both a gift and the largest waste of time the world has given us….) Your reputation precedes you, and I feel embarrassed and to an extent foolish to even question the decisions and or advice you would give a patient! But this has been very tough for me to swallow. I have always felt like the barriers that held me back in life were the ones I placed in front of myself. With the surgery and the “installation” of a mechanical valve, I feel those barriers would be extended by the use of Coumadin, or some other drug. I do understand a tissue valve too would come with limitations and consequences, but they may be to a lesser extent.
It’s to this point to let you know I am STILL undecided! I like (well…more like LOVE) the idea I would most likely NOT have to have a 2nd surgery, but continue to struggle with the idea I would have to live a life of someone on a blood thinner.
I have devoted time next week to talk to a few people to help me answer questions that will make my decision something I will be more “at peace” with.
I may (and am sure WILL) have some questions to ask you. Would you be OK with me emailing them to you? Or is there a way I can call you? Though I am fine with email. I am hoping to have the answer for you on the valve Monday 9/19 when I come in for the pre-surgery class.
Again, thank you for any understanding and patience in this matter.
The line that echo's in my head is the line about "barriers" in my life. I think we ALL have them, but sometimes we lose sight of that.
Ok, I play the market so, maybe I will NEVER become as successful as say Warren Buffet, but part of the reason for that is I realize how much hard work and risk he has taken to get where he is at!
Some people have natural ability to just do what they want and become the best at what they do, but other people just CANNOT do that! Still....it's a mental "barrier" that keeps MOST people from trying!
Or, let’s look at cliff diving! As a kid I would jump off a building if there was a "semi-safe" landing option. Now, being a little older, I have become semi-scared of heights! Still, when I was in Mexico a few years back, we were on a tour where we visited a HUGE sink hole that was filled with water and people swam in it. They built steps where you could jump into it from about 20 to 30 feet up! I was scared, but an older gentleman (Maybe about 60? So not "old" but older than me...) just jumped right in! It was then I made the realization it was a MENTAL block keeping me from jumping in, so I just took a run and DID it!
It was from that point on I realized so much of what I am NOT doing was from a mental stand point, and when I started to feel the effects of this valve issue, it started to become a physical issue!
I am just SO afraid if I take a mechanical valve and take Coumadin, I will have an ADDITIONAL barrier in from of me! This is a tough (sorry for the pun) "pill to swallow".
I KNOW (Or am assuming) I will need a 2nd surgery of I go with a tissue valve, but is the gamble worth it? WILL they have a robot in the future that will be able to replace the tissue valve with out OHS? Will they come out with a NEW medicine that will allow you to live life 95% as you did prior without the daunting risks over your head that if I did get into a minor motorcycle accident, or I did cut myself with my chainsaw, I would be in big trouble as I feel i would be on Coumadin?
I am 41.....I am not "old" and I am not "young". Is the idea of a 2nd surgery worth the gamble of not only feeling I am not living my life to the fullest, but also tying my hands to NEW options that may come out!
OHS is NOT a walk in the park I hear.....but then I hear stories about people who have had multiple ones by CHOICE? It's tought to think it's the "worst experience in the world".
I was 50/50 (tissue vs. mechanical) yesterday......now...I am 51/49.......big swing huh? And I am SURE it will go the other way after lunch today! LOL....
Anyway...thank you for anyone who has gotten through this whole journal......I have a way of going on longer than I should....Still.....
Surgery 9/20/2011! 41 Years old Tissue? Mechanical? HELP!
Journal posted on September 10, 2011
I am kind of cheating and just placing "my story" here as well......
1st I want to say how disappointed I am in MYSELF on this issue.
I am scheduled to have my heart valve replaced in just OVER A WEEK!!!! (9/20/2011) & I am very upset I didn't start this process sooner.
I am a 41 year old male. Married (no kids) & I would say an "ACTIVE" guy!
I have two bi-cusped heart valves.
In the last few months it has been decided that I need to have my heart valve replaced SOON! (& stupid me, I can't remember which valve it is! I will get into that in a bit) Not both, just one.
The whole time I have gone through this, my Gen Physician recommended a Doctor here in MN that is considered a CLASS LEADING Doctor & works with one of the leading heart clinics in the COUNTRY! The DR's name is Dr. Robert Emery & he works at St Joseph's Hospital in the cardiovascular unit.
I have done little research as I have been listening to the Doctor & taking his word as the "BEST" way to go, so there was little or no question until recently.
I had to get a heart cath to make sure everything was set for surgery. In prior meetings I had with Dr. Emery, we discussed both options of a mechanical valve vs. a tissue valve, & each time he was clear in it was my choice & there were risks & rewards for each choice, but in the end it is still MY choice. He understood why I would want to go with either valve and had no real clear cut decision or opinion at that time.
I left the early meetings with the idea I was FINE with a tissue valve, that I would need a 2nd surgery in the next 10-15 years. I consider myself an active person & the thought of taking a blood thinner was very intimidating & dangerous to me.
My "day" job is a desk job, but "at night" I do just about EVERYTHING! I cut wood with a chainsaw, I drive motorcycle, I am remodeling my home, I lift heavy things a lot like 80-100 pound speakers, I am 6'3" tall & have a tendency to run into things, I like the idea I can water-ski, & even cliff dive if I like.
I am afraid if I do something wrong, cut myself, or bump my head I will get some type of "non-stop" bleeding episode & I am screwed!
I know I would need a 2nd surgery but with medical advancement (in valve replacement and pharmaceutical advancements) I have faith there WILL be a better option for me on the 2nd surgery!
Well, after the heart cath, Dr. Emery said he recommends a mechanical valve! He feels that there will be advancements in cardiac drugs in the next 3-5 (or sooner) years I can take that will replace Coumadin, that will be MUCH better for me, & will have minimal bleeding risks. Again, he is FINE doing the tissue valve, but feels a 2nd surgery (with the risk, cost, etc.) may not be the BEST option! He feels the valve may last as LITTLE as 5 YEARS & is thinking 5-8 years for my age & activity level!
I respect my Doctor! A LOT! I hear GREAT things about him from MULTIPLE people & I KNOW other Doctors look up to him for advice! (He was even recently named editor-in-chief of the Journal of Heart Valve Disease!) But I am SO TORN!
I want to LIVE MY LIFE! I want to run, jump & get another tattoo without worrying about bleeding to death! I don't want to worry about consuming too much vit K (bad thing on Coumadin), I want to go to Mexico in Feb & play in the ocean without worrying about hitting my head on a rock & stroking out!!!!
I work for a LARGE company. My insurance is GREAT! I get 26 WEEKS of 100% paid disability, but do I WANT to have a 2nd surgery? In this economy I may be out of a job, or working for a different company with not as good of an insurance/disability policy.
PLEASE HELP! I need some advice!
I have been told my "aortic regurgitation" is "severe", (If this helps decide what valve is being replaced) & there is enlargement of one side of my heart! This surgery is NOT an option! I am tired, & my blood pressure is being affected by this. I KNOW I need it done.
The question, WHICH VALVE (Mechanical or tissue) should I go with! I WISH there were a clear cut answer!
PLEASE, if ANYONE can give me advice!
I JUSt bought the book and will plan on reading it SOON!!!