Hi Pat, just spent some time reading journals, guestbooks, etc. and there is something that I find intriguing. We all seem to have 3 big questions: 1: Where to go for surgery, 2: which valve to get and 3: full sternotomy or minimally invasive. I read that you initially were going to CC but could not because of insurance. I hate insurance! It is wonderful to have of course, but it just isn't right that you can't go wherever you want when it is such a big procedure. You know, I have noticed that practically everyone has been satisfied with wherever they went and whomever did their surgery. Mt Sinai is not exactly chopped meat you know, so I know you will be in very good hands. I had insurance issues initially and I live in SC where we don't have any large heart centers that do large numbers of valve replacements. But my insurance changed just in time and Tricare is like Medicare, a government insurance for military families and also spouses of deceased military at least 60 years of age. Apparently you are correct, most of the experts are leaning toward the tissue valves now. I was told the same about the percutaneous method being perfected by the time the tissue valves wear out and also that if at that time you have a mechanical valve, you woud have to have full surgery to remove it. If you have a tissue valve they can just "push it out of the way" with the percutaneous replacement. Also, I think most of the large centers are doing the mini sternotomy now for aortic valve replacement and can also use this method if you need aorta repair. If you havent already check out Cindy's journal. She also made videos of her recovery starting the day after surgery and it is amazing how well she did. Has really relieved a lot of my anxiety. Oh well, didn't mean to go on so long. Just want to say hang in there, will continue to remember you in prayer and know we both will be fine. Keep me updated!
Hi, I am going to have the same surgery on the same date as you...I have been preparing as well..It seems like there is so much to do. But, you know we are blessed because we can and this is not an emergency case...Like some folks have..Rest and be content that all is in God's hands and we are going to be even better than before...Brenda
Some surgeons do 2 or 3 a day.....my weekend leading up to my surgery was surreal BUT my morning checking in at 5 am and surgery at 7 was and is a blur.....you are out before you know it.
LAS VEGAS NV
Pat, thank you so much for the very detailed reply you left in my guest book. I had to return the favor and let you know I will be routing for you during your surgery. I am sure it will all go smoothly, sounds like you are in great hands! Good luck, - Mitch Friedman
HI PAT. I was checking a message i recently got from Adam in response to an update i recently posted ( for months post surgery and snowboarding at Tahoe) and i saw some Magical words that immediately caught my eye: UCLA and Richard Shemin. My story is a little long but basically I have been having heart issues for about 3 years (shortness of breath, high irregular heartbeat and murmur) but no one told me what was wrong or why. I finally saw the right cardiologist in June who laid it out I also have a deformed valve with 3 leaflets. it will never get better, will continue to get worse and can only be corrected surgically i found Adam's site and made a list of surgeons, that included dr Shemin. I met with 2 others couldn't even get in to see dr Stearns but from the get go everything about Dr Shemin and his staff told me I wasw in good hands. i had the cath a few weeks before the surgery (I suggest this over the day before--but be prepared to wait 4-6 hours after your proceedure)and had the surgery on thursday Aug 11,201. I made several requests from Dr Shemin and he was very accommodating. he promised me he would do everything in my surgery except closing me up. I made a list of 3 positive affirmations to give to the anesthesiologist(s) to read to me during my surgery and they agreed. BIG question. what valve did you choose? I went with the bovine valve over mechanical so i would not have to take blood thinners for life. something to consider with your condition as well as your contemplated knee surgery. I had some issues with the aorta but when I woke up Dr Shemin said it didn't look like it needed any work so he left it. i had about a 4" scar that is almost invisible (again one word--MEDERMA-also learned about from Adam) and was working an hour a week later. next week 2 hours and so on. UCLA was a great place and the OR is on the 8th floor and the ICU and patient rooms on the 7th floor--Both very lucky numbers. i was 2 days in ICU and 2 more days in hospital then home. the operation really fixed me but it will be a year I think till I get the full value of a new valve. drop me an e mail and i will send you some photos. be nice to your old valve this week, thank your heart for taking such good care of you and get ready for the show next year. you will be the star and the cast and crew will be there to make sure everything goes great. good luck and i will be thinking about you
I had my valve replaced on August 9th. Also had aortic regurgitation. My surgery was to be 4 hours...it went 8 hours...there was more sever damage plus my heart didnt start after being taken off the H/L Machine.
With that being said...here I am back to work, feeling and looking better than before and ready to really enjoy Christmas.
You will get through this. Its not easy but you will get there.
My first 4 weeks post surgery were very painful and difficult. But once the fourth week arrive the improvement from week 4 to week 8 was dramatic!!!
I feel I am 70-80% back...at this time....but healthwise I feel and look much better.
GOD BLESS YOU
I will follow your progress...
LAS VEGAS NV
Hi Pat. 2 things. I think you will be very happy when you wake up. Sore maybe, but it won't be the first thing to come to mind. The first thing to come to mind will be "Yes!". At UCLA they put me under so gently in the pre-op area I didn't even notice it. Then the next thing, with no sense of the passage of time, was angelic voices: "You're fine, everthing's OK!". Second thing - your exercise tolerance will increase with the valve surgery and this could help with your arthritis. Wouldn't that be sweet? Happy holidays -- DVB
Dear Pat, So glad you found a surgeon and are ready to get on the road to recovery. I am scheduled for mitral repair 12/28. I can relate to your arthritis. I have RA and went off all drugs so I can have heart surgery. You will do great and be fine as will I. I have you in my thoughts and prayers. Janis Kielbasa
I had tachycardia before I had my aortic valve replaced. It's scary when it happens (mine was pretty severe) but it goes away after surgery.
Sorry you're having insurance problems. I work for the State of South Carolina and have Blue Cross PPO and worried they they would give me problems going to the Cleveland Clinic. Turned out, Blue Cross was great and I didn't have any problem getting my surgery covered. It was nice not having to fight.
Good luck getting it straightened out but UCLA is excellent as well so either way, you'll be in good hands.
I am a 67 year old female. Big events happening for me this year...1. My job will be terminated on Jan. 25,2012, and my cardiologist is indicating it is time for heart valve replacement.
So I am also facing an insurance change from private to Medicare and whatever options I have.
Lots of decisions and a bit overwhelming. I am also thinking of changing cardiologist. I don't feel my current one provides enough on insight and options.
I believe the 'unknowing' is always most difficult.
You seem to have the ability to resolve issues quickly as they arise.
I have aortic regurgitation as well as an anuerysm. I am at 5.1 and it is my understanding that 5.5 is the point at which the prepartion for surgery begins.
I am divorced so making all decisions on my own!
Also I live in Bend, OR. and although we have a good medical community, it is limited.
Thank you for sharing your information. It helps!
I am on Medicare and my total bill at CC was ZERO. Be sure to look into this completely because it often isn't as bad as it seems it will be. My secondary insurance didn't cover anything outside of Colorado so they paid nothing.
Good choice to go to CC and to get the Minimally invasive surgery. I had an AVR on 7/16/10' and it was extremely easy. You can check out my journal.
I had surgery on Friday afternoon, was out of the hospital Monday morning and flew back to Denver on Tuesday. Since CC is the main employer in Cleveland, everyone you encounter makes your life easy. They have a concierge who will help with any travel plans.
Honestly, my surgery was a non-event. The minimal incision makes all the difference. Don't buy into the notion that they need a large incision to look around and see what they are doing. CC does a large percentage of their surgeries minimally and they are the #1 heart hospital in the US - and have been for years. You will probably get a bovine valve as they seem to prefer those. My theory is that if I need another valve in the future, that one will be done through my femoral artery - or whatever is state of the art in 15 or 20 years.
Hi pat. Glad to see your post. I've calmed down quite a bit as I've gained some new info which helped me a lot. As most say - the waiting game is the hard part. A book was suggested to me that I'll pass on to you - as you were so helpful to me - LIVING LIFE TO THE FULL by Ellen charnley Interesting story. She captures her entire procedure pre &'post about her experiences at cleveland clinic. I thot of you when I read it think you'll like it. I too was adv of the cc weninar. Not sure I can get to it - wilbe in fla for some R & R HAVE A WONDERFUL HOLIDAY & thx again for your help. Stay wellm& in touch. Best. Nancy. Your friend in st Louis.
Pat...all the tests are actually painless, so not to worry. This site is great for info and gives great insight as to what to expect. I am 4 weeks post AVR and aortic aneurysm replacement. Had the full OHS and am doing great. You will too. Whatever you decide on the valve type will be right for you. It's hard to do but do not stress too much. You will get this done and will be home recovering in no time.
Hi pat. In the same age range so identify. Going in feb 9 2012. Due for mini stern - & being a professional speaker I get booked all very the country & had a window of opportunity feb- to end of april do do this. I'm told time lines- frame is good & good lord willing & the creek don't rise - will be ready to go.
I wondered about leaving my own city do do the avr - however we have great doctors here & for family sake will get it done here in st Louis. I hope u do well & since youll be a few weeks ahead of me please feel free to email me direct and keep me posted. My dr is gonna do the cardio cath night before surgery. /so it's like an all in one. & seems to be easier for patient. There are obvious various thots on every single topic brought up.
Frankly I'm more nervous of the cath than the surgery. Lol
Again best of luck. Nancy