After Fainting While Biking, Randy Is “Lucky To Be Alive”

Thanks for sharing your experience. It is helpful to me (someone that has to eventually get the same surgery) to hear and see success stories.

Dear Randy,

Your story is amazing; thank you for sharing.

My name is Barbara and I live in the Atlanta, GA area. I am recovering from an aortic valve replacement which took place on May 13, 2009. I had no clue my valve was in such poor shape until I went to my bio-identical hormone doctor to see about doing the natural hormone thing instead of the synthetic. When listening to my heart, she detected how badly it sounded and sent me to a cardiologist, which I did see about 8 years ago for a heart murmur and had an echocardiogram done then. Things weren’t that bad and I hadn’t been back since. Needless to say, I should have kept better tract of my condition. I honestly felt good and was in perfect health with the exception of a few extra pounds I put on over the last year or two. The only clue I had was shortness of breath when I went walking. Indeed, my valve was in far worse shape than my symtoms. Thank goodness for the visit to the hormone doctor.

My surgery went very well (didn’t even have to go thru ICU). God brought me thru with flying colors. Yes, there was that excruciating pain at first (like a train had slammed into my chest), but each day got better and I was off pain pills before I knew it.

I, too, opted for the On-x Valve as it seemed more logical to go that direction that the pig or bovine. The only drawback was going to be the necessity to take Coumadin. I take many vitamins and natural herbs and I didn’t want anything to keep me from taking them. So, far, so good; but, I am still having problems stabilizing my range (2.5 – 3.5). I usually run on the low side. This last visit, I was at 4.0. I realized I hadn’t eaten my alloted amount of Vit rich K veggies. Also, I had 4 oz of wine twice during the 2 week period between visits.

I really get down sometimes on how the Coumadin controls my eating habits and some herbs, but, then I realize it’s better than the consequences. However, the thought of a stroke or bleed out scares me sometimes. I just wondered if you have encountered any problems with the Coumadin and if you could offer any suggestions.

By the way, I, too, am in the research study with the On-x Mechanical Valve. I didn’t qualify to be on the Plavix side and that was kinda of disappointing, but also realized maybe it won’t be as good for me as expected. I have to remember God knows best.

Thanks again for sharing your story.

Barbara

Just wondering what the diameter of your valve was when this happened? Glad you are doing well.

Glad to hear your on the mend Randy. I was diagnosed with BAV along with slight enlargement of the aorta. Prior to the diagnosis I was a runner and light weight lifter. I had asked my cardiologist about both activities with my condition. I was told to stop weight lifting, but was given the green light for running provided I “didn’t get carried away”. Both doctors I consulted with believed that mild excersise could be benefitial in keeping my blood pressure in check.

After reading your story I am wondering if your active lifestyle was not a contributing factor and if I should continue to run. Do you have any additional information to share? I am scheduled for a follow up eco in August and planned to ask this same question of my doctor. Thanks and again, glad your O.K..

Regards,

Gregg

For Barbara Henry:
I had my aortic valve replaced on 2/13/09 with a St. Judes Mechanical, so I, too, am taking Coumadin. It’s been 5 months now and I have about a 50% rate of being in target (2.5 – 3.5). Some medical professionals say the target for the Aortic Valve can be 2.0 – 3.0 because there is a very low incidence of clotting with the aortic valve. Mainly I wanted to tell you, don’t adjust your diet (other than maybe alcohol if you really indulge)….eat what you normally eat and get the Coumadin adjusted to that. You probably know that you shouldn’t have wild swings in what you eat, but if you really love green leafies, then eat them and herbs, too, and make the adjustment in the Coumadin level. At least this is the program I was told to use…..God gave us a new lease on life so we might as well be eating what we want as long as it’s healthy. It does take months to get these levels adjusted, so keep working with it.
Midge

Greg….I was told the same thing about a year ago. I really didn’t experience any problems if I took my time and warmed up slowly. The problem I had came from doing too much too fast, not allowing my heart to catch up.

Karen…..I don’t remember the actual diameter, but the Dr. said it should be about the diameter of a quarter and mine was the diameter of a pencil.

To Barbara and Randy –

Barbara –

Just wanted to chime in on the coumadin questions. Your surgery was so recent that it will take some time for your level of activity and the appropriate level of coumadin to all work themselves out. By all means though don’t let the coumadin control your eating and vitamin intake. There is a wealth of information on Valvereplacement.com if you haven’t already been there. There the most common phrase you’ll hear in a coumadin posting is “Dose the diet; don’t diet the dose.” Basically you should eat normally and take whatever amount of coumadin will keep you comfortably in range given your normal eating habits.

But I know from experience that it is easier said than done when you just start taking coumadin. I received a mechanical valve two + years ago and I definitely was very conservative with my intake of greens to start – I was even pulling romaine lettuce off my sandwiches for fear that it would have an effect! Once I got more comfortable though I started eating more normally and now I never fear diving into a salad or a decent portion of spinach or (gasp) even kale or seaweed. In fact I try to stay at the higher end of my range. My INR used to be consistenty 2.1 to 2.3 (my official range is 2-3) and I think that made me a little reluctant to eat more greens. I increased my dose a bit (you can use Al Lodwick’s dosing guide referenced on Valve Replacement.com if you home monitor or you can work with your doctor if they monitor your INR) in order to increase my INR slightly so I felt more comfortable eating whatever I wanted. And a word about wine – I can’t imagine the two small glasses of wine over the two week period had any effect on your INR at all. I test weekly on a home INR machine and find when I have a couple of drinks a night for a week there is no significant difference from when I have only one or two drinks over the entire week. This was a concern of mine prior to surgery as well and my awesome cardiologist assured me that I would not have to completely give up the good stuff as long as I was not abusing it So don’t fret about the couple glasses of wine. Some doctors find it much easier to make some blanket rule about no alchohol at all – the more informed will tell you that a drink or two isn’t a problem. It is only a problem if you abuse it. Going from monthly testing at a clinic to weekly testing at home really has helped me get comfortable with eating and drinking (uh . . within reasonable limits) what I want so I’d recommend you look into that if it is an option for you – my insurance pays for it all. Adam has my contact information so if you’re interested in chatting further about coumadin let him know and he can give you my e-mail.

Randy – Glad to hear you’re doing great. You look great although I assume that shiner is from the bike wreck (otherwise your surgeon owes you quite an explanation!)? Perfect timing on your surgery and recovering too – I can only assume you’re watching Lance and Contador (and Levi) in the Tour de France. I was lucky enough to recover to March Madness and it was great!

Randy, just wondering if you have any clicking noises? I am a 59 year old female getting ready for aortic valve surgery. I am afraid of the blood thinner scares that I have heard and curious if your valve makes noise? Would appreciate an email. Good luck to you and keep on ticking! Sincerely, Janie

I ama 63 year old female. I had BAV replaced on the 1st of June along with repairing my aorta due to a 5.5cm aneurysm. All of this came as a surprise to me back in March. I knew about the BAV for over 30 years, but my doctors did not seemed concerned about it. So, it was quite a surprise when I was told, after a trip to the emergency room, just because I felt “odd” that I had the aneurysm and would need surgery for that as well as the BAV replacement.
I did have a second opinion by a leading surgeon in Chicago.
While I came through the surgery with flying colors, I had some difficulties 16 hours later and coded twice. I came through that but that left the doctors questioning why it happened. Between the surgeon, the cardiologist, and the electrophysilogist and testing it was determined I needed a defibrillator. So, a week later I had the surgery for that.
I am doing fine and getting ready to go back to work. I did have a few little set backs when I got home, but nothing major. I am looking forward to my Cardio rehab.
I have the bovine replacement valve and aorta tissue graft. My doctor and I chose that based on many factors.
I am glad to hear that you are doing great. And like you found Adam’s book very informative. It became my bible, and also helped my daughter prepare for what was to come.

Janie…The On-x valve that they put in me is very quiet. I too was afraid the noise would drive me crazy. Unless something changes in the future , it has not bothered me at all. As far as the blood thinnersI am not worried about that. All I can do is follow the doctors orders and hope they know what they’re doing.
Good Luck, Randy

Hi All,
I have found all of your E-mails so interesting. Let me add my 2 cents. Iam a 65 year old female who had an aortic valve replacement with a St. Jude Mechanical valve 11 months ago. I take coumadin. In the beginning I was almost obsessing over my diet. I have learned that I can eat most anything as long as I don’t overdue it and even have some wine in moderation. I have been on the same dose of coumadin for the past 7 months. I am checked once a month in my Dr.’s office. I feel great. We just returned from a two week trip to Europe where we did a lot of walking. When my husband and I walk the dog in the evening, I walk faster than he does–even with the dog pulling him. The only drawback to the mechanical valve is that I do hear it, especially at night. I am a very poor sleeper anyway. I have found I hear it the least when I lay on my back. I feel the clicking noise of the valve is a small price to pay for feeling so great!

Randy…. I had my aortic valve replaced last February 25 after more than a decade of knowing it would need to be done. Before my bdiagnosis, I was an active “power” walker and runner when my Caridologist made it clear to me that if I continued an “aggressive” excericse program… I could die. That was enough to convince me to hold off until after surgery.

From the looks of you photo… you are in very good physical condition. I too was in relatively good physical condition. I attribute my speedy recovery from surgery to the fact I wasn’t overweight and had worked my cardiovascular excercises for so many years leading up to surgery.

I am now walking a little over 3 miles/day at a 4 mile/hour pace. I also have started biking around town again… The one question I’ve been asked by friends since my surgery… “So now that you’ve had the surgery… how do you feel?” I have to say I didn’t think I felt any different since I lived with my condition for so long and didn’t have any symptoms. I can honestly say I now notice a major difference in both my stamina and… more importantly… the time it take for me to recover from active excercise. Before surgery, going through the stress echos… I was severely out of breath and it took several minutes before I was breathing “normally”. Now… I ‘ve noticed it only takes a couple of minutes, at most, before I stop huffing and puffing. It was a subtle at first but now I really notice the improvement surgery has made.

Best of luck in your recovery… I’m sure you have many years to enjoy. We are very lucky to live in a time when this type of medical technology allows for diagnosis and surgery. Everytime I see a cow… I chose a bovin option…, it reminds me how lucky we are and to be thankful. I can’t eat a steak without thinking about it!

Thanks for your response Randy and again best wishes for your recovery. I will probably review again with my cardiologist to make sure we’re on the same page. Especially after reading Richard’s comments about what his cardiologist told him about his walking and running. This situation is all still very new to me.

Richard, if you see this entry, I would be curious to know why your cardiologist appears to have a different opinion about excercise. Perhaps you were engaged in more extreme conditioning than me. I currently run on a treadmill. I do 5 miles at about a 8.5 mile pace typically 4 times per week. I no longer lift weights or do any isometeric excercises at the direction of my doctor. I feel fine, but, of course, I don’t want to make my situation worse that it is currently. Assuming it is all about how agressive the excercise. If you don’t mind my asking, what was your excercise regimine and why did your doctor thinks this way? Thanks in advance for any information you want to share.

Regards,

Gregg

Randy,

Last Sunday, one week prior to my son’s wedding and one month prior to my scheduled valve replacement surgery, I was tooling along at 18MPH on my road bike in Cooper River Park in Camden NJ. An 83-year-old gent blacked out and ran his Mercury Grand Marquis directly into me from the rear at about 30MPH. I got lofted onto his hood and then bounced onto the roadway. Miraculously, I did not break any bones, but the X-rated shots of my buns really brought down the house at the wedding! No one had to wonder why I was standing for the entire ceremony.

Hopefully I did not suffer any lasting injuries (X-rays were negative and MRI is coming up this week). My surgeon is slated to see me early next week and decide if we have to move the surgery date. Hope not, because I’m prepared.

Since I bike about 400 miles a year, Dr. Morris agreed that I should get the bioprosthetic valve, despite the re-operation risk, because I want to keep riding and woodworking. Naturally, both of those activities are risky on Coumadin.

Best of luck and let’s both get back in the saddle by next Spring!

Geoff Stuart
Newtown Square, PA
Surgeon: Rohinton Morris, U of PA

Hello, wanted to say thank you for sharing your story. I am 26 and have moderate aortic stenosis, and will find out more about getting my valve replaced in september. I am very thankful for people like you and the other on the site who are willing to provided a look inside their own lives to give those who have yet to have the surgery hope and and feel like they are not alone. At 26 this will be my second surgery, i have a VSD repair at age 4, I was told that I had a bicuspid aortic valve, that is almost more like a unicuspid. Hopefully in the upcoming months I too, will be able to share my story, like you and provide and insight and hope for someone else! good luck with your recovery.

i just wanted to say that everyone’s advice on coumadin is always helpful.its very hard to figure out exactly why it fluctuates. my diet is so boring, i dont think its the main factor, i really think it has alot to do with activity levels as well.
to Rachel…….good luck on your surgery! it will all go well,im sure.i assume you will get an artificial valve and are you already on coumadin?
thanks jeff my email is jeffstoveken@yahoo.com if you have any questions

I am still unsure which route I am going to take the mechanical valve or the bio prosthetic valve. I am reading all I can, but everyday I change my mind. If anyone has anything advise/stories they would like to share, feel free to email me Rachely16@aol.com
Rachel

dear rachel,
i was Bicuspid aortic valve with dilated aorta.i had gone St. Jude Mechanical valve in Bentalls surgery. i am taking warfrin 1mg & ecoasprin 75 mg.my diet is also balanced my INR range is 2.4-2.8.i dont also make running & heavy exercise simply walking and yogas.
so u should plan for Mechanical valve and best of luck for surgery…Atul

Randy,

I have a bicuspid aortic valve, needing replacement sometime during September,,,60 yr old male,,,good phy shape,,,weighing options,,,traditional cut vs minimal invasive (Cleveland Clinic?), artificial valve vs pig, cow,,,not looking forward to taking blood thinner for rest of life with artificial valve,,,

Btw,,,used to work for Rolfs in West Bend,,,sales rep for a wonderful company

Thanks for any info shared,,,

Steve

hello everyone!
i am here to ask for help, my dad is in really bad condition of his heart disease problem , he had large heart and inreguraly heart beats for over 30 years , he is been taking medication for long time almost all his life , and in year 2004 Dr. find out he had leaking valve problem , but didn’t tell him that he needs valve replacement surgery. just last week , my dad is in bad shade and feeling so tire and caught a lot , he went see Dr , , and the Dr . just tell him that he only have 2 years to live or he can try to do valve replacement , but chance is not high because his heart and himself is very wick not in good health now , i would like to ask you all , what should i do ? i love my father , i don’t want to see him die in age 62 , i have lots things to repay him back for rise me and teach me so well and give me so much happiest, i am so scare that he might leave me , please help me ! help me please !

Hi Randy. I have a similar history to you in some ways. E.G, I’m 51 and have an athletic background, having run for the last 35 years and raced marathons and 10ks. I was diagnosed with a heart murmur and a bicuspid aortic valve @2 years ago. The aortic stenosis worsened last year to the point where I couldn’t run more than four or five minutes at a time without taking walking breaks and I was getting chest and arm pain which (foolishly) I kept from my wife and my cardiologist. I had an On-X valve replacement six weeks ago (July 29) and four bypasses as well and am starting to feel much better. I kind of like showing off my scar and hearing the audible “ticking” of that amazing valve. I’ve also signed up for the double blind ‘no coumadin’ study and will probably hear from them in a couple of weeks.
Anyway, all the best with your recovery! I don’t know when I’ll be going for 11mile runs again or at what pace but I’m doing my walking and enjoying being a stay-at-home dad for the first time.
rick, Langley, BC Canada

Hi Randy, Your story is a touching one. I kinda envy you in a way because you didnt have much time to think about your surgery, it just had to be done. I go in on friday, but Ive had a long time to think about it, and even put it off six months ago when I was told I shouldnt wait any longer. Im 41 and have always been active., and like you an advide cyclist. Its my mitral valve that needs to be repaired or replaced. If they replace it, my doctor is going with the on-x valve. Ive heard a lot of good things and am trying to stay possitive.
Best wishes to you. Take care Andrea

Ho do you feel after valve replacement – is your life style 100% normal after surgery

I am a candiate for aortic valve replacement in the Spring of 2010. I am also an avid cyclilst, hiker, climber, skier, etc. and am concerned about taking anticoagulants with a mechanical valve. I have looked a the ON-X valve as an option and I was wondering how you are doing with it now? How much Coumadin do you need to take with this valve? Have they told you that at some point you may not need to take anticoagulants or just take aspirin? I am 61 (next month). I have almost convinced myself to go with a porcine valve and face replacement again in 15 years or so.

Thanks.

Update
I have been feeling great. I am back to doing everything I did before the surgery…except play racquetball. That will change after Thursday as I plan on playing that afternoon. The ON-X study I am in is going great. I have been on Plavix now for about 3 months and have no complaints.At the end of the study which lasts 5 years, I hope to continue on Plavix or a low dose of coumadin.
Randy

Dear Randy,
I am also an a avid bicyclist on a normal weekend I normally do 35-60 miles. At 54, I also just found out that I need to replace my Aortic valve and have some work done to the aortic because it is enlarged. I know my choices of valves, but truthfully I am not happy with either choice. The Tissue Valve wears out around 10-15 years and the more active you are the quicker you can wear it out. I am petrified of surgery as I hate anything medically. I can’t even watch CSI without turning my head. So to repeat surgery twice in a lifetime is very scary. The second choice at first was very enthused and optmistic this was for me. Until I read about coumadin and all the side effects. I don’t know which is more scary. Normally since I ride my bike so many miles I have on average one fall a year, what would that be like on coumadin? What effects has coumadin have on you? Are you still able to eat normally, did you delete vegetables from your diet? What about social drinking with friends is that a thing of the past? Is the surgery is scary as I think or will I not remember anything.
Anything you can share would be greatly appreciated. I know someone who has the Tissue valve but otherthen 75-85 year old people I haven’t been able to speak with anyone that was on coumadin.
Thanks Gary

Hi Everyone,
I am 47 and coming up on my second surgery June 23, 2010. Diagnosed at birth with BAV i made it to 37 before I passed out jogging and was told the next day that it was surgery time for my valve within a few months. I had been extremely active my whole life with sports, squash, racquetball, running, etc. so I made the decision to go with the Ross Procedure which at the time had the possibility of a lifetime fix without blood thinners. It was my riskiest option but after extensive reseach on my options I had it done in 2000 by a great surgeon who had done many of them before. I found out that you can often choose your surgeon! Other than a setback with a DVT 6 weeks post op I had been back to my previous activity level, 10 ks, tournament squash, etc. for that last 10 years except for weightlifting. I was only taking a baby aspirin a day. Echos in the last year however found an enlargement of the aortic root 5.5 which is forcing my resurgery even though i am not symptomatic yet. Now that they know the root tends to enlarge the Ross is performed with a reinforcement of the root to prevent this from happening. I now have 1 chance or a choice. If they can reinforce the root and adjust the valve (David Procedure) I might be back to my previous activity and baby aspirin again. If they can’t I have choosen to go with the ON-X valve after doing my own research as my best hope of a life time fix with a possibility of as little thinner as possible. I posted this so that others reading will do their own research and evaluate all their options based as much info and feedback as they can find to make their own decisions.
Cheers and luck to you all!
Mike

Dear Randy, My husband who is stubborn finally went for a physical and found to have moderate to severe aortic stenosis he has no symptoms. In the process of being worked up has been told by a cardiologist that he will need a valve replacement in 3 to 5 years. We are fairly active walking and biking. We live in Milwaukee so we are being seen by a cardiologist at ST Lukes. My question is how long was your hospital stay how long it took to get back to feeling like yourself? I’m concern that it is just a wait and see when surgery is needed like a time bomb to go off.

Hi Nancy,
My stay in the hospital was 5 days I beleive. I had mine done at St. Lukes also. The recovery seemed slow while I was recovering. Now when I look back at it, the recovery went quite fast. The difference from week to week was amazing. I strongly suggest going for cardiac rehab after surgery. They get you going while monitoring your vitals at the same time. Also, I am not a doctor but..That 3to 5 yrs. to replacement might be true but continue to get it monitored with echoes. I had some light headedness and had it checked out. I was told I was good for now and come back in a year to get it checked out. I dialed back my workouts and remained asymptomatic. Less than a year later(before my next appointment) I passed out while riding my bike and was told I needed valve replacement immediately. My surgeon said I should of had done months ago. I don’t mean to scare you, but I just would suggest you to keep monitoring it.
Randy

I had my AVR done in December of 2009. I have the ONX valve. Last year, I took up running as a way to get and stay fit. After numerous running events, including a 1/2 marathon last year, I am training for a full marathon this year. Is there any study information about the ONX valve and how well it tolerates the rigors of marathon training? My wife is a little freaked out.