Pete's Posts

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.... Each day that passes give me NO clear answers.

Well....the question continues........ 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!!!!

Hello again..... 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!! _______________________________________________ TISSUE 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 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!!! Talk to you all tomorrow!!!!