Hi Lee, the feeling is hard to describe and only gets better. I could not have contemplated a 1600 step walk having a conversation with my wife without getting breathless. My body just works so much better after the repair, even if I am still in Afib. It makes you just want to keep walking!

Thinking back only three days post op I told my wife that my heart feels better already. It was such an amazing realisation of how before and after compared - pretty emotional too.

Not long until you join the club

Paul

Hi, Lee -- I love your analogy to the two jelly-fish! At my follow-up last month, I was presented with a color photograph of my diseased, floppy, regurgitating mitral valve. It really did look like some kind of sea-creature. Good luck with your surgery, and if you have any questions, feel free to ask me.
Selma (former regurgitator)

Hi Lee,

Time will fly by, I am not sure where I put the last two weeks per- op, only that it was never going to arrive, and suddenly there you are getting ready! I drove to the hospital!

A few days after surgery the weight of worry about MVP disappears. I can not describe the huge relief was and how my body now felt.

Good luck and keep in touch

Paul

Lee - My wife & I were just saying that yesterday and we have several friends that have terminal cancer. You are right...we can get fixed! AMEN! Charlie

Thinking of you...my date is August 9th...getting my house in order too with things. It does make you realize how precious life is and what many blessings we are to be thankful for with our loved ones and those supporting us at HVJ. Keep the faith. Charlie Messineo

Lee,

My thoughts and prayers are with you!

Keep on tickin!
Adam Pick

Hi Lee,

Thanks so much for your response. I had a valve repair on Feb 2nd and I had gone the robotic approach and it was unsuccessful. So now i am scheduled to have the replacement the conventional way.

Carmen

Singing girlies are always cute! Her cousin likes to press keys too, even when I am playing the piano. Yes, it was a good chat, and I think we were all purposely trying to send the love. The timing is so weird for all of us (including you!) and adjusting to the idea of not being present during the surgery is strange and uncomfortable. Then again, actually seeing you for any length of time with so many people would be impossible, so the next best thing is to show up and help out (talking with you, tidying up, buying groceries, keeping the girly busy, etc.). Maybe not at the same time, though, because your wife would not know what to do with so many people and you to take care of! love, sis (boom bah)

Hi Lee,

First off - thank you for your kind words!

I wish you all the best as well on your surgery - I will ask my son to continue my blog so that people know my status.

I was reading some of your journals - its funny I'm doing the same.... getting my house in order, worklife in order .... you name it! I guess the only good thing about that is it make time go by real fast so that when the day of the surgery comes I'll be real happy. I am going for my pre-op tomorrow - so I'll keep you posted

Hi Lee,

Just a quick note before work. I wanted to say that it was really good ichatting with you last night. This is real big stuff and we are all here to support you in anyway we can.

You said in you last post that this has made you more spiritual. I think that's extremely important on this healing journey. My spirituality came later in life for reasons I can explain to you in person later. Anyway, I do know the power of prayer and the Castro's (+ in-laws) have your back in that regard.

Please know that you will not be leaving my thoughts up to and following your surgery. Love, Connie O.

Hi Lee,

My name is Carmen and I was reading your story. Thanks for sharing. I have a question for you, what made you decide on the full sternotomy versus the minimally invasive robotic procedure?

Thanks,
Carmen

Just wanted to weigh in on your journal entry. You boss doesn't sound very compassionate to me. He (she?) puts his leisure time above your health. If work was that important, shouldn't the vacation be cancelled and not the life saving surgery? I would have flipped out if I was you!

Regardless, I know you will make the right decisions!

Hi Lee-

I have to agree with those who posted that your health should come first.

That is ultimately your decision, but without our health we have nothing. Our family needs us here too.

Please consider getting your surgery sooner rather than later. You don't want to risk your condition worsening and/or causing permanent damage to your heart, etc...

Hey there! Seems like a lot of comments left by patients with the same condition spoke highly of the open heart option....And I heard your heart transplant surgeon cousin advised the same. I'm wondering what swayed your decision not to go the open heart route? Anyway, it's a hard decision, and just want the best for you! I will be praying for a successful outcome. Love, Connie

Hey, just don't put your work above your life/health! Work is hard to come by, sure, but life is everything. Why is your boss' vacation more important than life saving surgery for you?

Hi Lee, Good to hear about the clear arteries. Looks like you are getting some good advice in this guestbook. Since it's such a big decision, still suggest you talk with John again. As an awarded surgeon who does heart transplants, he's top tier. Love you! (sis)

Hi Lee. I think the main difference in late-time outcomes between robotic minimally invasive and open heart is open heart has lower stroke risk. -- DVB

Zero mortality is hard to beat. 60 times at bat is only a middle amount of experience. Experience in this game is everything, that's probably why the other guys have a zero rate since 2006. Hopefully they've done many hundreds so it is a meaningful zero. I was very happy going open for MV repair because there's a much better view and bigger workspace to deal with contingencies. It's the unplanned stuff that gets you. Ad that's where experience counts too. -- DVB

Hi Lee, I'm in a similar situation MVP with severe regurgitatation but still happy :-( waiting for the full sternotomy.. My consultant surgeon Dr Wells, from Paworth UK has completed over 5,000 MVP repairs and is very much in the camp of "no I don't do non-invasive as I open up because you can see everything and not be suprised". His sucess rates are high in both terms of Repair when he says he does (over 99%) and mortality. 60 does not sound like many to get it right or encouter the little or indeed large things that can go wrong, in this instance I believe experience is everything - but that is only my laymans view and I know everyone has to start somewhere. I do not envy your decision but can empathise with it. Please do enough research until you are comfortable with your options then go for it.

All the very best

Paul

Hi Lee, I know the decision making is the hardest part of needing open heart surgery. I will offer this as part of my two cents worth, lol: the experience of the surgeon is the most important part of this process! I personally don't think I would be comfortable with the robotic procedure with surgeon that has only peformed this 50 to 60 times. I had aortic surgery, not mitral, but it is my belief, after reading the stories of so many people, that the mitral repair/replacement is much more complicated than the aortic valve. It also seems that the robotic method is more complicated for the surgeon than with the mini sternotomy or full sternotomy and best results are obtained when the surgeon has done many procedures. Like I said...this is just my two cents worth. Good luck with your decision, I know it is difficult, especially when you have limitations put upon you by the insurance company.
Linda Dixon, AVR 3/13/12

A lot to think about! Don't forget what the other dr Castro said. He is a heart surgeon also. He would probably love getting a call from you this weekend just to keep updated. Xti

Great to see your first journal entry Lee. Good luck with your research into valve surgeons. Hopefully Kaiser won't give you too hard of a time with your final choice.

-Thomas H.

Lee,

My Mitral Valve story is similar to yours, however I was not experiencing the shortness of breath to the extent you describe. I was told on 12/9/12 that I had severe regurgitation and requried surgery. I did not really believe it, yet moved forward with scheduling the TEE and getting 2 other cardiologists opinions. I had my surgery on 5/9/12 and will be going on my 6 week follow up later this afternoon.

I am happy that I got several opinions, yet in the end it was left to me to make the decision as to when I would get the surgery. I decided that doing in now (I am 58 and in good health except for the mitral valve) was the best choice for me because there was no existing damage to my heart. Plus, I have decent insurance coverage and with all that is going on with the insurance issues, I did not want to wait a year or two run the risk of my coverage being much different in the future.

So, I am certain you will make the best decision for you and your family.

Wes Phillips
MVP 5/9/12

P.S. Last year I had started to run in 5k's and I am looking forward to jogging again in the near future and running in a race!

I second the writing part! As someone who get annual checkups because of MVP, I've been living with the possibility of heart valve surgery for many years. This site and journal are a great resource for reading positive stories and coping with the emotions of our condition. Keep updating and we can keep talking on this guestbook as well as IRL :-).

That's a cute profile picture! And, of course, family photo. Someone talented with a camera must have taken that one. ;-) Keep writing, dear brother! I've just been reading about the power of people telling stories about their health as part of my research, so this journal is more than just a collection of words.

Hi Lee-
I just read your post and story. I am about 3.5 wks post-op with mitral valve repair. The only thing I would say if you already have two opinions confirming you need this done in the next 2-3 months I would try to get it done ASAP if you are able. I was diagnosed with bronchitiis, pneumonia and told back in Jan-Feb that they would watch my mvp and recheck in July. Come 4/2-5/7 I was very sick only to find out on 5/7 I was in severe congestive heart failure. I was then told I need the surgery sooner rather than later. 2-3 wks, no later than a month. I had the surgery in close to the 3 wks and when they opened me up the damage was pretty bad so much so it compromised the performance of the rt side of my heart. I am apparently recovering as planned now and starting cardiac rehab today, but if you have the chance of getting this taken care of sooner rather than later I would certainly exercise that option. Just my two cents...Good luck.

Karen Campo