Good to hear from you, Frank. I have some questions for Dr Gillinov when I meet him next month. Do you believe I am meeting him for the first time the afternoon before my surgery? I have total faith in him and the hospital. I plan to let him tell me what he needs to and then will ask him about what I will want to know that he hasn't answered. Don't think there will be many or any. Keep us up to date on your meeting. Wishing you a great visit with all your questions answered.
Fran Zilko

Hi Kim and Frank
I can feel your frustration because your time is running thin as far as you getting your ducks in a row. Dr. Gillinov of the Cleveland Clinic (Bill and Fran are both having him)seems to suggest picking a valve that suits your lifestyle as opposed to your age which surprised me.

(My surgery was Oct/09) I asked my doctor here in Canada to recommend for me if he couldn't repair my mitral valve and he chose the mechanical valve stating my age of 60 as being "young" (I loved it) so he wouldn't want to see me have to be reoperated on anytime soon. Also I am not into sports so accepting that I might have to live on Warfarin (Coumadin) wouldn't be pleasant but not earth shattering. So, I was convinced a mechanical valve would be the way to go.

A couple of weeks ago Adam had Dr. Gillinov do an on-line type of chat answering our questions and I couldn't get over the fact that he easily recommended tissue valves for children, sports active people, older people, anyone who wouldn't suit a Warfarin bloodthinner lifestyle. His reasoning seemed to be the fact that they are making great gains in the reoperation field and it is looking that by the time a tissue valve needs to be replaced, a full operation probably might not be necessary. On the other hand though, one of the ladies on this site has reported that there very well might be a new drug in the offing that will take the place of Warfarin and regular blood testing might not be necessary. All that being said, I think I have changed my mind and would be more open to a tissue valve.

I am on Warfarin and the trick is keeping the blood at a certain level and that does mean regular testing that as you get regulated, becomes less and less often. Also, while certain foods do change the rating, I have taken the course that the Warfarin has to adapt to my lifestyle of daily salads including spinach, broccoli etc. and so far, I haven't really had a problem. I haven't given anything up. Also, if you keep your INR rate within the recommended (for you) level the blood isn't so thin that you bleed to death but you do bleed a little easier and it might take a little longer to clot. I feel the cold more too. I do not expect to be on Warfarin forever, perhaps a few more months. I am being tested every 2-3 weeks now so my body is starting to accept the drug and level out. It's definitely not the end of the world. Also, there is a little gadget you can buy that is similar to a diabetic's blood testing gadget and you can read your own test daily but definitely it is recommended you get it done professionally monthly or so. How tough is that?

I only met my doctor once before the surgery and once after. I saw him twice in the hospital. I think he is great but that is just our system here. I had a page of questions to ask when I did first meet him and he took the time to answer each and every question. That is where this site comes in handy because you can pick up on some of what you might find important that you hadn't thought of yet.

Fran hasn't met Dr. Gillinov yet. Not sure whether Bill has or not. It doesn't seem to be a rarity to show up at the hospital a day or so in advance, get the diagnostics done and get surgery a day or so later. Those diagnostics will tell the doctor pretty much everything he needs to know and you will get a better picture of where you stand.

Hope some of this helps. Try hard to stay calm. You have to get yourself in order and hopefully find a doctor you trust implicitly and let him look after your medical needs. Cheryl, Ontario

Hi Kim,
I'm 32 year old and one day i'll need my aortic valve replaced. I think a lot about which type of valve I'll choose now though.

I've never had surgery before (except my wisdom teeth taken out) so I really have no idea how hard (or easy) surgery is going to be. If it's not that bad (and a lot of the people get through it fine and are positive about it on here) then it makes me wonder if I could handle the procedure two or three times? On the other hand, is that something that I only want to go through as few times as possible?

I haven't done hardly any research on different types of valves, but I know the basics, which I'm sure you do as well.

The pig valve won't last as long because pigs don't last that long. I don't know what the average life expectancy of a pig is, but I can't imagine it is 70 years, which is why I believe they only last 10-15 years. I guess any animal that lives to be 70 or so is too big. Too bad monkeys wouldn't work, because I'm sure that would increase the life span of the valve to about the same as the mechanical.

Of course the mechanical valve has the blood thinner issue. I don't know too much about it, but from what I've gathered, if you have a mechanical valve you are not supposed to eat that much green vegetables and you aren't supposed to participate in anything you would need a helmet for. If Frank bikes or skis or goes whitewater rafting a lot and would miss it, then maybe it's not a good idea. In Adam's book there are examples of people who climbed Mt. Everest and who have run marathons with a mechanical valve, which is positive.

My lifestyle is somewhat active. I do light weightlifting (nothing over 50lbs but would switch to yoga or pilates if I had to), and I do about an hour on the eliptical, which I wouldn't want to give up. Very rarely do I play racquetball (which i could quit if I had to) or basketball (which i could also not do seriously either). I would think slow pitch softball is fine (but don't know for sure), regular hiking would be fine, and throwing a football around (no tackle) would be fine too. These are just guesses as I haven't done too much research on it. I also heard if you are on a blood thinner that you can't eat green vegetables as much, which I can live without as I'm not a big fan of most vegetables and can live without the tastless lettice on a burger (i don't know why it's even put on a burger in the first place). I like some salads but I could live without.

The thing I would be most worried about is something like a serious car crash. I think the risk is pretty low of being in one though. I work at a deskjob also, so work isn't really an issue for me.

Still I'm going to ask my cardiologists what the valve replacement options will be in the future when I see him in May.

It's such a tough decision, but I'm kind of leaning towards mechanical because nothing in my life that I would have to avoid would be that missed for me. I'm like 75-25 mechanical. I still have to do more research on it, but at this point that's where I am personally. I hope that gives a little insight.

If anyone knows more about life on a blood thinner or has had a bad experience with being on one, I would like to know too.

Patrick in STL
pcsfd2@gmail.com

Hi Kim,
Fran is right on it. I'm going tissue, I am 55 years old. I am always getting hurt; bleeding because of blood thinners while on my boat is not a good option for me; there are not many hospitals out at sea! Don't want that blood thinner and hope technology catches up to me when its time for another one.

happy boating
captain Bill

Hi Kim
Something to consider, my surgeon (DR Gillinov at the Cleveland Clinic) tells me that he will go with tissue valves (I will need 2) and when they wear out 10-15 years down the road they will be doing replacement valves by threading the valve thru the groin. No more opening the sternum. Isn't that fabulous? I've known for a long time that I would eventually need a new mitral valve but after my last stress echo, my cardio said I may need an aortic valve and when the surgeon saw the disc he agreed. Hopefully you'll have a good discussion and get all your questions answered.
Fran Zilko

Kim,

I guess I'm going to be exactly in Frank's shoes. I'm not sure I am asymptomatic, but I have an active lifestyle and match the rest of Frank's list.

I haven't really been able to work through the options with the doctor(s), other than to be told that I had 2. After some research I'm going to ask for other options because I know that they exist.

My current concern with the mechanical valve is the blood thinner requirement, and since I'm active but a klutz I do worry about falling and bleeding. That said, the tissue valves don't have a great lifespan, and Frank will be around a while, so there are plusses and minuses with both.

Have you looked at the Ross Procedure? There are also options to repair the valve with minimally invasive surgery. I don't know what would be indicated in Frank's case, but I would encourage you to search for options.

Steven in Calgary

Kim and Frank,

First of all, Frank is so fortunate to have you Kim, as I am with my wife. We all need to be our own best advocates with regards to our health and health care, and I am sure it is a relief to Frank to have you in his corner! Go get 'em!

Next, don't let them push age as a factor, your quality of life has to have a vote in the mix too. Good luck!

Steven in Calgary

Good morning, Kim & Frank
So sorry for the stress you are both experiencing. This is stressful enough without what seems to be uncaring doctors. Have you checked out the physicians site on Adams's blog? There may be a surgeon(s) that have been recommended in the Pittsburg area. Italian temper and all, take a deep breath and try to get some good answers. Sometimes the docs will be come very defensive if you "attack" and you will be at a standstill. Please post when you're able. Know I am hoping the best for you both.
Fran Zilko

OK, I signed up to get E-mails when you update.

Hi Kim and Frank,
It must be just as hard for care givers as patients. I think that it is great that you are being proactive. My mitral valve replacement (mechanical is my choice)is next Wednesday and my husband Steve is only now feeling mentally strong enough to read up and watch videos about the procedure, we had confirmation 2 weeks ago that surgery was essential. He feels more confident that he will be able to cope post op. I'm still not sure that Steve needs to know everything, I don't want him to be anxious unduly, but I did want him to understand the stresses and strains that the body goes through after open heart surgery. He is 15 years younger than me and we have always been very active together. It's fair to say that all the patients on this web site are keen to learn and share. There will be thousands more who don't want to know. I had to ease Steve into acceptance of my membership to this 'club', I didn't want him to feel excluded - but now he listens as I read out the daily updates from other journals and we have taken so much on board from the recommendations that we get from other patients. Looking forward to your updates.
Warmest wishes
Penny (Scotland)

HI Frank & Kim,

It's good to meet you both. I'm the same age as Frank, and just had my aortic valve repaired in October, 2009. There are lots of decisions to make, so don't hesitate to ask LOTS of questions. There are so many amazingly skilled surgeons available. Find one you have absolute confidence in - even if you have to consult with several to find the right one. Knowing that you have a great surgeon takes a lot of the worry out of the equation.

There are lots of people here on this site who will offer any support we can. Keep us up to date on how things are going.

Don't worry - you'll do great!

Joel Bryan, Iowa

Hello. It is so true that this website and the support of all the patients and caregivers really is so valuable. I'm 32 and waiting for my aortic valve to wear out. I do feel better reading everyone's story. I know which type of valve to choose is a big decision i'm wrestling with as well. I will follow your journal and be praying for you guys.
Patrick in STL

Hello to both of you. Cheryl's words are so true. I am not having my surgery (aortic and mitral vales) until March 18th. She and many others have been so kind in giving me their wisdom and best wishes. Going thru the wait without this support network would a lot harder. I will have tissue valves. Although they don't last forever I am told that by the time they do need to be replaced they will have perfected the technique of a valve insertion via catheter thru the groin!! Isn't that amazing? Keep reading the various journals and ask us any questions you want.
Fran Zilko

Hi Kim and Frank
Nice to meet you. I had mitral valve repair surgery in October/09 and am still in recovery mode. Eventually you will begin to hear from others experiencing the same type of surgery as Frank but many of our tests are similar.

You don't have long to wait which is nice. The waiting can be really tough on the nerves but on the other hand it gives you time for research. Does Frank like to know what is going to happen or would he rather fly blind? One common thread here is trying very hard to stay positive, relaxed and focused. There are bumps, set-backs and disappointments and that is where it is nice to drop in and get some much needed support from others going through the same thing. This is a good place to ask questions and get feedback. Everyone can attest to the fact of being prepared as possible.

Cheryl, Ontario