I have been researching the various mechanical valves that are available out there. I am leaning toward the On-X since it is purported to have lower blood thinner maintenace requirements. The ATS open pivot mechanical valve that Jon Farmer now has, is reported to be one of the quietest valves in the industry, making it my other choice. Jon has stated however that he can hear his and is very aware of it. I guess I should just be thankful that I am alive. If it is ticking, it's working :)
I would be interested if you have acquired a preferance yet? Or are they able to leave your bicuspid alone and just repair your root?
Wow, you have a busy schedule ahead of you. I ended up with the ATS mechanical valve. I weigh in the mid 170's and I can hear it ticking away. This is especially true in the bathroom. It doesn't keep me awake or distract me but I am very aware of it. The dr tried for two hours to repair the valve but opted to replace it. I'm glad he did. Jon
You would be more than welcome to stop by, thank you for asking. They haven't called back with the exact date and time yet. Dr. Answini is reviewing a cd that was sent over to him reference an MRI I had a while back. He wants to concur with Dr. Thoresen that my ascending aorta doesn't need repair. The dentist cleared me for surgery anytime from the 24th or after. I am just waiting for the call from Dr. Answini's scheduler after he reviews the MRI cd.
I will let you know as soon as I hear the definate date.
Okay, I feel like an idiot. I didn't read far enough back in your journal to see you are a doctor. So in true "open mouth insert foot" fashion, there I was giving you a dental referal lol.
With regard to my surgery, it looks like it will be around June 24th at Christ Hospital with Dr. Answini. At first there was a question if my root had to be replaced as well since it is slightly dialated. Fortunately, I have been told that it won't be necessary. So I am opting for the mechanical valve.
I guess the hardest part is the waiting. Not being able to work out or cycle. I am a retired S.W.A.T. guy. I let myself get way over weight over the years, and just started cycling and working out again in the last six months, trying to lose some weight and get some wind back so to speak. The weird thing is, I was feeling strong and like my old self prior to this recent development. I have alot more weight to lose, but to this day I am still asymptomatic. It drives me nuts, sitting around waiting for surgery. I feel like I should be working out, cycling etc... to prepare for the surgery. I mentioned this to my cardiologist, Chris Thoresen, who I absolutely trust with my life. Chris is a great guy, an excellent cardiologist, and he runs and cycles as well. He told me it is going to be tough for me to wait since I have always been a hard charger. But he also told me to just take it easy. Easier said then done when waiting for a surgery when there is a slight chance of "Sudden Death". So now, I am just walking when ever I can (this also takes some adjustment. Nothing against the geriatric crowd but I am not wanting to become a permanent mall walker just yet)
Anyway, sorry to vent on a rant. Just remember that God and Family & friends are with us.
I know wisdom teeth suck, believe me! I just had mine pulled last wednesday. The cool thing is, they didn't even sedate me. They just gave me a few local injections to numb me up and the teeth were out in no time. They gave me pain meds, but I didnt need them by the next day.you probably have an oral surgeon already, but if not since you are in Cinci like me, I would recommend:
Dr. Michael J. Grau
3805 Edwards Road 160
Cincinnati, OH 45209
Phone: (513) 321-9627
Hi Jim. I know exactly how you feel. I had some kind of infection that I had to get cleared up prior to surgery and turned out to be my gums. It took a couple months of dental surgery to get everything cleared up prior to OHS. Be thankful that you can get these taken care of in one or 2 visits. Good luck! I'll be praying for you. Kellie
That sounds good. This way you can enjoy the rest of your summer with your family. My recovery is getting better. Have been trying to go to the gym everyday to try and speed things up which seems to help a lot. Usually I do 20-25 on the treadmill (walking and light jogging), bike for 20-25, and do some light lifting. Afterwards I am entirely exhausted but I feel if I push myself a little bit it will help with my recovery. Wednesday I go back to work which I am looking forward to getting into a routine again. It is funny because just when you think, "hey I am almost back close to 100%" something either mentally or physically will remind you your not. Best advise for your recovery is to educate yourself as much as possible because your body and mind will do some funny and scary things in recovery. Keep in touch with your scheduling and always reach out if you have any questions because it sounds like you will be getting the same procedure that I had done.
Did you set a date to repair your root? Glad to hear your valve is functioning well and just a repair is in order to the enlarged portion. By the way your Doc is probably one of the best if not the best in the World. Keep the faith and always stay strong my brother.
Quick question...When you flipped into A-Fib did your heart rate and blood pressure remain elevated for a long period of time? My blood pressure spiked up today for a moment 175/95. Went to the Cardio and they are having me wear a heart monitor for 3 weeks. Hope all is well with you and your family.
Hi Jim. I'm glad you told your mother. I didn't tell mine for a while either. She was upset at first but then began doing what mother's do. She began to plan how she was going to be there for me. She began looking for flights, scheduling vacation, and contacting family. In retrospect, telling her was the best thing for her and me. My son (13) isn't concerned at all. My daughter (9) does talk about it but rarely. They deal with it in their own way. Good luck and keep us posted!
Jim - I think mentioned in an earlier post that I too had the hardest time with my two kids. My 11 year old ended up writing me letters and that seemed to help. Maybe you can suggest the same for your daughter. I am now 5 weeks post surgery and it is amazing how quickly things can get back to "normal." Both my sons are relived the worst is behind me and we have planned a Florida vacation for June - that is what they both consider the real mark of my recovery and gives them something to look forward too. In hindsight - the anxiety was really the very worst part. Being younger helps with recovery. Good Luck! Randa Gaalswijk
My name is Melany, I am 38 and have a 6yr old and a 3yr old. I know exactly what you feel. It has been a year since both of my surgeries, one for mitral valve repair and one emergency for a pericardial effusion from coumadin. The hardest part was the second surgery, telling my children bye the night I went into the er for sob, leaving them and thinkink I would see them again in the morning, then being told had I not come in I would not have lived through the night, I cried like a baby. My kids are younger than yours, but they were great! They understand more than we realize and my oldest (a girl) was my personal nurse once I got home. Even my 2yr old son tried to put lotion on my legs and feet! We forget to give them credit for what they sense and feel, they love us unconditionally, and we them. God is with us and will be with you as well, we each have a purpose in life and I believe when we are given an opportunity to be 'fixed' it is becuase God wants to help us carry out our purpose. I will be praying for you and your family and please know that you are not alone! Everyone here is your family too!
Just a quick head's up from a Floridian: Disney in August is not going to be a comfortable experience as it is brutally hot and usually very humid too. To make matters worse will be the lines of people waiting in the hot sun for rides. We just came back during Spring break in March so it wasn't too bad. Other than this, I hope you're doing well. It sounds like you're on the right track.
As the day's approach and time goes on it can certainly get tougher, The day's seem to drag on and your mind is constantly thinking about the worst. However, with all of you thoughts and all of your heart you have to trust in God that he is helping to mold you as a person, father etc. Your girls will see how strong their Daddy is and it will only make them stronger in return. Let this not be a negative experience but a chance for your family to become closer and closer than ever before. You will be alright buddy as you have the best Doc's looking after you and numerous people praying for you. Keep thinking positive and try not to get bogged down by the stress of the situation but embrace this trial God has given you and tackle it head on knowing that all of your trust and direction is in Him. Before you know it this all will have past and you will be a better man for it.
Wow, Jim. I'd melt with the experience you told about with your 7 year old. My babies, the four biological girls and the unofficially adopted boy are all all older, the boy at 27 and youngest girls at 31, but their concern was probably on the same level as your 7 year old. I don't know if this is appropriate for the 7 year old, but with my kids, I got as much info to them as I could. I'm not a med doc, but I am a serious Exercise Science student on my way to a new graduate degree. I was able to describe the A & P of the heart to them and, most helpful, was getting them to look at the videos on you tube of the surgery, the exact same surgery I was to have, one of the videos actually by Dr. Mihaljevic at CCF, who was to do my surgery. Also, since I was going to probably have the Da Vinci robot, I showed them the you tube video of it peeling a grape, quite impressive. Regarding mortality, I let them know CCF has a zero mortality rate for my procedure and assured them CCF would not allow me to change their record. It seemed to work with my kids, and the grand kids seemed to be OK, three of them your daughter's age sent me pictures they drew to put up in my hospital room...knowing I was gonna be able to enjoy them. Don't know if any of this is helpful. Good luck with your daughter. ...Barry Stone on the Mtn in New Mexico. P.S. If you look at my journal you will see how fond I am of what CCF has made possible for this old(er) guy.
I had an aortic valve replaced and a slightly dialated root. Please read through my journal at your liesure. Dr. Gillinov did my surgery, he is one of the best in the world, I am told, so you are certainly going to the right place. Let me tell you, from my perspective the recovery was a piece of cake and I am now 53. Don't let the fear get you, attack the problem, get it taken care of, get your life back! Only other advice, resist the mechanical valves, otherwise coumadin for life. CC does 82% tissue valves I was told, they believe in them and 6 months out mine is great! Take care and you have a lot of HVJers rooting for you.
I remember having to tell our two boys, age 6 and 8 at the time, that I was going to have to go and have surgery. They didn't ask many questions but they were the most excited about having sleepovers at Nana's house.
The did come see me in the hospital on Sunday after surgery on Friday and I think they were a little scared when they saw me since I still had IVs and my neck was bandaged. They had to go to the "Family Room" since they were not allowed to go to patient rooms so they were able to see Duke Chapel.
All-in-all our boys did better than we did. It's been almost one year since then and they are doing fine--sometimes even hearing me tick.
I can relate to much of what you have said. I was told a fews ago that I should have my mitral valve repaired right away. The dr. told me while looking at the echo results from my stress test right after I did it. I am a runner too and my biggest fear going into the apt. was that she would tell me to stop running. I didn't expect something worse... having heart surgery. As she was looking at my echo, she was amazed that there was no change in my heart functioning before and after the treadmill. Like you, I don't have many symptoms and am having a hard time believing I need to go forward with this surgery. I also am terrified of it because I have three kids (who don't know yet... can't bring myself to tell them). It will be great when all of this is in our past. I'm glad you are heading to Cleveland. That seems like the place to go. Take care of yourself.
I'm a CC "alum" from Mar 11th this year with a mitral valve repair..Dr. Tom Mihaljevic and Da Vinci Robot..with assist/finish by Dr. Gillinov. I'm with Anne Shannon...can't really remember any chest pain. No pain meds since a day or two before release and released Mon afternoon after Fri surgery...wudda been out Sunday except for a high white blood cell count from an allergic reaction they think to an antibiotic. Then wudda been Mon morning 'cept when the nurse told me I'd be released I said "don't I even get lunch"..and she said "OK, you can stay for lunch". It's now 7 wks post surgery and the old(er) wannabe athlete a few weeks ago walked a Half Marathon distance, then did a 50 mile bike ride (on a level course), 2 Sundays ago did a Sprint Tri and tomorrow the first 5 K run event. Started running (run/walk) with a couple groups I guess 3 wks ago. Rehab has been going on by a guy that believes, based on science, on working us, on the RPE scale of 1 to 20 at the 13 to 19 range, wanting us to get up to 17 to 19 every session. Go 3X/wk and have now done 2 wks. Yesterday he had me doing treadmill 2 min run/walk intervals with incline. It is sweaty and it feels good. The heart is woking good. They are doing their best to keep the old wannabe from over training. I'm telling you all this because I am positive I could never have done these things if I had not had the kind of procedure and care I had at Cleveland Clinic. They are responsible. I'm hoping/thinking at tomorrow's 5 K I will be able to do the whole thing without any walking, my goal...and I'm not a strong athlete..think about the strong ones and what they could do following their CC experience, like Ellen Charnley completing her Ironman 8 months after surgery. CCR Rocks in my book..You're gonna have super care. All the nurses were super, but I did have a favorite, a slim, dark haired one named Kathy who recommended Little Italy to my family as a place to have dinner.
Glad to hear you are heading to Cleveland. I flew there from Denver and never had a minute's regret about that decision. You may want to check out my journal. I My recovery was nothing short of amazing - and I am no athlete!
The other day in cardio-rehab a fellow was telling me that he was five weeks out of surgery and asked me when his chest would stop hurting. When I thought about it, it occurred to me that my chest had NEVER really hurt - and I had my aortic valve replaced just like he had.
There are some other CC alums on this list so if you have questions, just ask and you will have tons of help immediately!
I'll share some recent experience with you and hope I don't boar you or sound too corney.
I'm kinda an old(er) graduate program Exercise Science, AKA Exercise Physiology student who got interrupted during the heart unit of my class with my cardiologist telling me I had serious mitral valve regurgitation, learned to spell chordae and to say flail mitral vavle posterior leaflet, and had a bigger, what I call, "heart lab experience" than any of those 20 year olds that are my university classmates. I, too, had no idea I had a problem...damn, after the cardiologists tells me about the issue Nov 22nd), he asks me if I've ever experienced shortness of breath...was able to answer, well, I told him when I tried to do a Half Ironman Aug 28th I had trouble breathing and got towed out of the lake with about 50 or so yards left of the 1.2 mile swim with labored breathing for 2 or 3 hours after out of the water, and ran out of steam at mile 7 on a Half Marathon middle of Oct...these things I just blamed on me as an old wannabe athlete who doesn't always train fully like I should, although I had done the swim length maybe 3 wks before my event....was an unusually warm day in Vt for the Half Ironman...could feel that hot sun on my back piercing the wet suit. I sometimes will drink lake water, but don't think I did that day..and when I was trying to figure out what was wrong, partly chalked it up to dehydration, especially an hour and a half or so out the water I checked my BP and it was pretty low...drank a lot of Gator Aide and Water, and packed my bike with the event being history. Asked my Phd profs about my situation, but they had no clue and chalked it up to an ole 67 year old not trained right, but they did say I would get an excused absence because I was at a sporting event...that was nice 'cuz I missed 2 or 3 clases. Yep, there's more out there besides you. A couple more Internet sights I've learned about that maybe, could be of interest to you would be one called cardiacathletes.com and one called ironheartracing.com. Back re Ellen Charnley's book I mentioned when I started. Ellen registered for her first Ironman and then found out about her heart issue. She had her atrial septum rebuilt by Dr. Mihaljevic at Cleveland Clinic (CC) in Mar 2010 and 8 months later finished Ironman AZ. She did a real good job describing her experience at CC as well as other info regarding her rec.overy and training. As an athlete, you may appreciate reading her story. Dr. Mihaljevic did my valve job, with Dr Gillinov finishing up, March 11th. I didn't like the result of the change reduction to my beta blocker dosage yesterday....too high HR, or me, the patient changing it back today and that resulting in too low BP.....geeezzzeee. I had worked up to 10 K (walks), but today took a rest day 'cuz of the med results. I hope the docs can get it right and me, not really the model patient, probably a worse patient than you the med doc as a patient. BTW, this works with the wife who read in the discharge instructions I'm not to sit directly behind an airbag (automobile)...docs, could me omission???...did not give me any driving restrirctions, but wife makes a fuss about me talking about driving, until today..it worked...asked her if she'd like me to take her to Santa Fe for lunch....not a word came from her about me not driving...don't know if it will work for others..and I caveat I haven't had any pain med since the day b4 being dischared, except experimenting one day b4 going on a walk to see if the pain med would "loosen" me up a bit to have a better walk..didn't seem to make a difference. Good luck to you. Barry Stone on the Mtn in New Mexico
Jim - I, like you have a BAV with stenosis and regurg, and I am still totally asymtomatic which makes this all the more frustrating. My cardiologist had been monitoring my heart for 9 years, and i really thought I could push this until I was 50. But now at 46, my valve measures .4 cm and the mean gradient is 51. Both put me in the severe category. BUT - Still no other symptoms, I work out 3 or 4 times a week, have 2 youngs kids to keep up with, work full time and travel. It is a mystery to me how this thing works. However - after 4 opinions, including a review at the Cleveland Clinic - everyone is consistent is saying now is the time for surgery. So I am scheduled for April 7th in Boston at Brighams and Womens with Dr. Larry Cohn. I am nervous and anxiety filled, but everyone says - "you are young and healthy and now is the time to do this" Or I love it when they say - in terms of cardiac surgery this is a simple one. Either way - we have to move forward. Good luck to you. Stay active- it can only help! Randa Gaalswijk
I think you are taking all the right steps to get moving forward and not be "stuck" in this whirl wind of not knowing. You are a bright and healthy man and I will be by your side through it all! Lets get to Cleveland and get some questions answered and get your heart/valve and root in shape so that you can hit the marathon trail again!! I love you!!
I am 47 and have been seeing the same cardiologist annually for the past 20 years. My cardio wanted me to get a second opinion from the "best" (his opinion) as my condition (MVP and BAV) is now getting to a point where surgical intervention is on the horizon. Fortunately, following an echo, TEE and cath. at the CC last August, Dr. Stewart advised that surgery was not yet recommended. I now alternate between both doctors every six months and feel better about having both evaluating my condition. Ultimately, getting a second opinion is a personal choice... I am thankful that my cardio pushed the issue with me as I feel that I have a better understanding of what I am up against.
Do you have a cardiologist at the Cleveland Clinic yet? My local cardiologist referred me to Dr. William Stewart last year for my first consultation. Dr. Stewart has been a staff cardiologist at CCF since 1984... VERY thorough and an excellent doctor!
Here is his link: http://my.clevelandclinic.org/staff_directory/staff_display.aspx?doctorid=602
I'm freshly, I guess you could say, back from the Cleveland Clinic. Dr. Mihaljevic repaired my mitral valve with Dr. Marc Gillinov (The Chief) "closing me up" when Dr M was called away near the end because his kid was in the ER. I don't think I could have had better care anywhere else, although, I realize tons of people say that about the places taking care of them. You are obiously a strong athlete and you will benefit during recovery because of it, I call myself a "wannabe" athlete and my fitness level has really helped me. I recommend you find a good cardiac rehab place in your area for after your surgery, not always easy to find. A couple organizations I found while doing research for rehab are: cardiacathletes.org and ironheartracing.com. In fact, David Watkins of Ironheart racing, today, put a message out he has four comp entries for the Seattle Rock n Roll Marathon. I recommend Adam Pick's book, too. A couple more recommendations. Go to the ironheartracing.com site and watch the video on the home page that shows a lot of "cardiac athletes" completing all kinds of endurance events..and playing in the background is the Nike Song, titled something like "Its not how you start, its how you finish"..it has a catchy repeating phrase that was caught in my head when I woke up in, btw..woke up in Rapid Recovery ICU, not the reg ICU, and with the breathing tube gone..had to be because my lungs were strong enough...you have an advantage, big advantage being fit...back to the song...caught in my brain the phrase "...everyone gets knocked down, how quick you gonna get up". And, that "how quick you gonna get up" phrase would not go away. Last recommendation. A triathlete, Ellen Charnley, signed up for her very first IronMan, Ironman AZ, and then was diagnosed with a serious heart issue. Dr. M rebuilt her atrial septum, and 8 months later after her surgery she completed Ironman AZ. She wrote down her experiences in a brand new book. You can find her on the Iron Heart Racing Team site and I recommend her book. 'nuf from this old(er) guy....Barry on the mtn neat Albuquerque.
Jim, I also recommend Adam's book. It's a quick and easy read and a good primer. I am now reading the ACC/AHA 2006 Guidelines for the Management of Patients With Valvular Heart Disease published by the Journal of the American College of Cardiology. But, then again, I am kind of a geek.
Welcome to HVJ! Bummer to hear about your ticker but we are all in the same boat here. Many have gone before us and posted their recovery blogs here. It's been really helpful. My surgery is in a week and I'll be posting my recovery as much as I can to help others get ready.
Good luck Jim. I've heard great things about Cleveland.
I wish you the best with your consult at the Cleveland Clinic. It's the best of the best. I went there physically for a consult because I knew I needed surgery and wanted to see the place and become comfortable with everyone, knowing that's where I'd have my surgery. My surgery is scheduled with Dr. Gillinov for April 21. Best of luck to you.