All of a sudden I need an operation.

[AndyChas]

Hi David
I'm also new to the forum and it sounds like we are in much the same boat just at present (I also found out about the need for surgery after fainting, but no one's offered me any Xanax!). Thanks for sharing your story and best wishes,
Andy

 

[brd]

Hi David and welcome, I was interested to see you lived in Dartmouth. My husband and I and many other family members have summer houses in Tiverton and we all spent many many days as teenagers on Horseneck Beach and South Shore beach in Little Compton. Beautiful country.

I will be five months post-op next week and I feel terrific. I think the most important thing I can say is that before you know it you will be post-op yourself and amazed that it all really happened. I agree with all the advice you've been given here and I would also add that at some point you have to put your trust in your team and just go with it. Don't focus on breathing tubes and pain etc etc. It's all a blur anyway and before you know it you're being discharged.

I wish you the best. Where are you having surgery? Barbara

 

[marie]

Just wanted to welcome you. I really can not add anything to what's been posted. Just wanted to say "Hi"

I had AVR 11 months ago and no one was more scared than I was. Christmas last year was really tough for me emotionally but his year WOW. Best one in a long time.

I made it through and so will you

Earline

 

[Phyllis]

Welcome, David. I'm glad you found us. Since you are only and hour away- definitely check out the Boston Hospitals- Brigham and Mass General- for sure you can't go wrong at either one. You will do fine and will be bragging and showing your scar before you know it. Be sure to let us know when you have selected your surgeon and have your date so we can put you on the calendar and help you and Heidi through this.

 

[JaneBerm]

Hi David,

Welcome to our group and stay around long enough and you'll find many new things to both learn and share. You're in my area and I have delliberated about having my surgery in Providence at RI Hospital, or going to Boston. I've pretty much decided that I'll stay local and I've consulted with the best RI surgeon, Arun Singh. The primary idea is to find someone who does this type of surgery all the time--over and over again. I've been sitting on my surprise timebomb since the end of August and since I'm asymtomatic with a BAV and severe aortic stenosis, my cardio gave me a year to have the valve replaced. (my echo shows a valve area of .65) The wait is impossible some days and this site becomes your extended network of folks who will listen and understand what you're going through as you process all the info.

In the beginning I think I obsessed over the idea of mechanical vs. tissue, but as I've come to terms with the entire idea that I'm actually going to have this surgery, I'm coming closer to being able to make a decision one way or the other. My husband is very pleased that I have a group I can talk to and it has certainly taken the presure off him as my only sounding board. Keep reading here and keep us posted on your own progress as you move through the process. It's always good to have a few cheerleaders on your side and from the sound of your first post, I think you could have enough material by the end of this road to write a good comedy routine! Welcome, as one of our members often says, to the zoo!

Jane

 

[sparklette77]

Hello and Welcome aboard!!

I hope you look at your diagnosis as a wonderful thing because it means that your condition was caught in time to fully fix it and will allow you to extend your lifespan and skip over the part of life where your heart issues significantly affect your quality of life.

I had my mitral valve repaired on 12/5/08 and now I am 3.5 weeks out of surgery and am starting to feel really good and very positive again. Even though I don't have as much energy as I would like and my scar still hurts and I can't lift anything and I have no idea the prognosis of the cryomaze procedure that was performed--I'm feeling pretty good regardless.

When I was consulting with surgeons secretly I was hoping they would tell me that yes I should have this procedure done b/c to me it meant an end to all my symptoms which were really affecting my quality of life. I used to be a really active person and then was told that I couldn't weight lift anymore then gradually more restrictions on my lifestyle (nothing that raised my heartrate over 140 basically) and I just lived with it not realizing there was a solution. I was so excited to have surgery b/c to me it was like a new beginning and I was making jokes while being wheeled into the OR and then in the ICU I totally lost it b/c I was in so much pain and honestly didn't think I was going to get through it but turns out that I did and so did everyone on this site and I'm sure you will too.

Good luck to you with your valve choice and ohs.

--Sparklette

 

[Alerion]

Thanks everyone for the warm welcome.

I Spoke with an old friend who is a o.r. nurse in the cardiac unit at Children's Hospital in Boston. She was great and gave me a lot to think about; a lot of it troubling. I'm still getting familiar with the medical ramifications of this procedure but I haven't met with the surgeon yet (Scheduled for the 15th) so I just don't know enough about my own situation to make any choices.

A lot of folks seem to be on a waiting list for their procedures. I can definitely see how that would be maddening. I hope they don't put me on the back burner, though from the way my PCP and the other Dr.s are talking, I don't think that will be an issue.
The big thing is still what valve to get and any advice, testimonials or cautionary tales from you kind folks would be taken very seriously by us.

It's quite humbling to suddenly have a bunch of strangers sincerely interested in my well being, but the sense of community here is a great help to both Heidi and me. The feeling of having so many people pulling for you makes this so very much easier and less frightening. And now that I'm a part of it, we're pulling for everyone too.

To have our lives disrupted; to face the reality of our mortality; to trade suffering now for more years with the ones we love; to appreciate our place in the universe; to find strength because we have to; to use that strength as our example to the world - That is one bitch of a checklist we've been given. But I think of the people we become when we check off the whole list. The folks here who had their surgeries done years ago and yet still keep coming back just to help us frightened noobs out - Man! That is an example to follow.

So I'm not going to stress about it too much. I'm just going to let my problems come to me - I'm not going to go chasing them.

We wish you all a happy and healthy new year!

David

 

[zipper2]

Welcome and happy new year David and Heidi,

So glad you arrived to our world and events,alot of wonderful

people to help yous out.

My first surgery was on the aortic and passing out was my fun part

till the denial was dropped due to no choice...surgery.

and surgery now for mech,mitral valve in 8 days (Jan)8th so here

hubby and i go again. Can't wait because the WAIT has been the worst

for me and my family and who knows, whatever else comes about,like

you say i ain't going to it ,it can come to me

Glad your here and wishing you all the best with surgery. Look

forward to your posts.

zipper2 (DEB)

 

[Ross]

So I'm not going to stress about it too much. I'm just going to let my problems come to me - I'm not going to go chasing them.

David

...and that my friend, is exactly how to deal with this whole issue.

It's not as bad as your mind is making it out to be. It's still very serious in nature, but no where what your thinking.

 

[ALCapshaw2]

David -

I've been reading VR.com for several years now and a common thread is that for MOST of us, "the Waiting is the Worst Part of the whole experience".

Another common comment is that the
'discomfort' is "Way Less than they imagined".

Pain Control is a High Priority in the Hospital and it is almost always well managed with few exceptions. Going through the sternum is a major insult to the body, BUT there is NO Muscle there, just skin and bone. Most patients speak of levels of 'discomfort', NOT Pain, in the chest area.

The most common complaint about Pain is Back / Shoulder / Neck MUSCLE pain (from the way you were 'laid out / stretched out' on the table.

MASSAGE is almost always FASTER and BETTER at relieving Muscle pain than Pain Pills. My S.O. uses a vibrating disk massager, running it along the affected muscle which brings relief in a minute or two.

To help in your decision about When and What Kind of Valve to get, it will be helpful to obtain copies of ALL of your Test Results / Reports. We are pretty familiar with the 'usual' criteria for recommending surgery and reading those reports. (Look at the Effective Valve Area and Pressure Gradients for starters).

There have been some Excellent Posts on the trade-offs between Tissue and Mechanical Valves with guidelines for choosing between them. See the "stickys" at the Top of the Listings for the different Forums, especially the Valve Selection Forum and the Anti-Coagulation Forum. The latter gives you a good view of how people live with and on the anti-coagulation medication needed with Mechanical Valves. There was a HUGE improvement in measurement and management of anti-coagulation back in the early 1990's which many (Old School) practicioneers are not 'up to date' on (unfortunately).

That should keep you busy until you meet with the surgeon. To keep from being totally overwhelmed, you may want to 'take it in bits' as you wrap your mind around all the ramifications of this process.

Just remember, almost everyone here (or one of their family members) is a SURVIVOR of the process and is living a better life than before their surgery.

Happy New Year!

'AL Capshaw'

 

[Montrealer]

Well......I`ve heard this one before. I`m 50 and in pretty good shape. Gave up Hockey, touch football and softball due to knee problems about 8 years ago. Then one day in April running for the city bus my life changed forever............long story short I was sitting in the Montreal General and told I have a couple years to live. Yep......just like that..........no sugar coating ,no BS no false hope no fairy tale ending..........Eight months later I got my life back.

Thanks to many people in the Health Care industry and my Wife I`m going out for New Years Eve at my favorite Pub in Montreal to dance,eat and be merry..........
I wish you all the luck......

Oh ....by the way........My 1st stop after the Hospital was Hurley`s Pub.......

 

[DebbyA]

Welcome, David!
I hope you'll keep posting, because in 6 months when you're bucking up some newcomer to the forum, it'll be very entertaining!
In discussing symptoms before surgery, my cardiolgist said "You pass out, you go straight to the hospital!", so you got a pretty clear message. I sort of envy those who didn't have to worry for years in advance.

 

[ottagal]

Hi David (and Heidi),
I don't have much to add except that I wanted to welcome you to this great forum! You are in good company here and after reading your post and with your great attitude, you will do well. From someone who has been in the 'waiting room' for the past 9 months with way too much time to ruminate, I think getting surgery done and over with sooner than later is the way to go (although I am sure there are pros and cons to both). Wishing you all the best and looking forward to your updates.

 

[tobagotwo]

You're right about the studies from the 70s. They would be very misleading. The problem is that even the studies just finishing are behind the technology.

Anticalcification treatments and nondamaging fixation processes really came into being in tissue valves around the turn of the century (THIS century) or slightly after. There hasn't been enough time to see their net effects yet. You can't see the 25-year outcome until 25 years have passed.

The latest generation of mechanical valves, with their new clot-discouraging shapes and hinges, and their improved materials, began about the same time.

Even the quality of the surgery is far beyond what was available then.

So don't be put off too much by things you read that are based on old testimony. Things are better than they ever were for this surgery.

I would look at Brigham and Women's and Mass General. They are always rated in the top ten (often top five) for valve surgeries. "Close" is nice and comfortable, easy to get to. "Really great at the surgery and immediate recovery" is better. Much better.

You want a surgeon with a lot of time in on valve surgeries. Not a twice-a-month guy.

If you have a bicuspid valve, you will want to be checked for any possible aneurysms, so they can be dealt with during the surgery, rather than eight months later. Aneurysms have some tendencies to grow after surgery, so if they say an artery is dilated, but they don't need to do anything with it yet, tell them you don't want to be on their surgical schedule again any time in the next five years, and you don't want to be monitoring an aneurysm every six months once you're done with the surgery. A bicuspid valve doesn't mean you have or will have an aneurysm in your lifetime, but it does raise the risk enough to want to check.

It won't be nearly as bad as it seems, and it goes quite quickly. I suggest you inquire about Fentanyl, instead of morphine, as it makes most people less loopy and may help you avoid morphine constipation.

Best wishes,

 

[justme]

You sound like I felt 7 weeks ago. My questions were coming so fast I couldn't verbally frame them. Many of my answers came from reading the posts here. Between the Friday of the angiogram and the following Monday with the surgeon I'd narrowed my Qs to a very few. Not having a lot of "notice" before surgery was a benefit for me.

Pain wasn't a problem. I was hospitalized for 8 nights. The nurses kept asking if I wanted something for pain but there wasn't much except for my sore shoulders. As someone mentioned that's from the way you're arms are imobilized during the surgery. I was given a prescription for 60 pain pills. I have 48 leftover. There is some burning along the scar and I've decided it's the nerves in the skin healing.

You'll have to make your own decision as to what type valve is best for you.

Good Luck!

 

[ALCapshaw2]

David,

I want to second Bob H's (a.k.a. Tobagotwo) recommendation of using a Surgeon with Lots of Experience doing Valve Replacements, *especially* since you also have a Bicuspid Aortic Valve.

Another Forum that contains a lot of pertinent information for you would be the Bicuspid Aortic Valve and Connective Tissue Disorder Forum since there seems to be a fairly high correlation between the two. It would be wise to have your entire Aorta checked for possible 'dilation' / aneurisms. If such conditions are present, you will want a Surgeon who is skilled in Surgery of the Aorta which is another Step Up in the Heirarchy of Heart Surgery. These kinds of surgeons are mostly found at the Major Heart Centers and not likely to be found in your neighborhood Bypass and First-Time (simple) Valve Replacement Hospital.

Sorry for adding to the headache.

ALL of these conditions can be fixed the 'First Time In' by Surgeons who know what they are dealing with and have the experience to handle it.

As the Boy Scouts say:
"Be Prepared".

HNY

'AL Capshaw'

 

[Herburban1]

I know how you feel. I have had MVP since I was 35 (diagnosed). I went for a routine echo in March because I hadn't had one for 5 years.My Primary said I need to see a cardio so off to Mass. General I went. There is where they said I need to think about OHS in the future. I thought I had no symptoms and thought all my shortness of breath and being tired was me being out of shape and turning 50. I sat on the T in shock the whole ride home.I went back in June with more symptoms and they put me on Lisinipril to reduce the pressure on my L ventricle. I went back again in September and decided to go ahead with the surgery which has now been postponed twice. I picked MGH because it is one of the best hospitals in the world and is a magnet hospitals for nurses which is important to me being a nurse.I had sinus surgery in Worcester and as I being wheeled in I saw a temp badge on a nurse. I don't want to see that having heart surgery. Welcome to the group it is a great comfort to us waiting. Louanne

 

[ctyguy]

Hey David...

Your story sounds pretty much like mine in that I knew I had a murmer since birth but it never slowed me down. I played sports, served in the military, never gave a thought that it might be an issue. I also never knew I may need a surgical procedure either. I had a similar incident to yours in that one of my dogs got loose and I went running and hollering through the neighborhood looking for it. All of a sudden I couldn't catch my breath and then I was down on one knee and then a face plant into the grass (fortunately not the sidewalk). I chalked it up to an anxiety attack and didn't see a cardiologist for nearly a year later !

Upon my cardio appt Im told that I have bicuspid valve with severe stenosis and that I need surgery ASAP. He told me that he takes 100 people like me and come back in 2 years and at least half will more than likely be dead. Needless to say that was a wicked kick to the privates.

Like you I was quick to the Internet when I got home. My first clicks were looking at the procedure itself and I was quickly dry mouthed with fear. Fortunately I also found my way to the Cleveland Clinic website and this forum. You will find great comfort here as many have been in your shoes and mindset.

I was fortunate to not only get nearly immediate access to a wonderful surgeon I also had the option of having the procedure done right away. I was 15 days from initial diagnosis to surgery and in looking back I wouldn't want it any other way. I think the anticipation your going through right now is MUCH more stressful than the procedure itself or the recovery. I had never had any type of surgery prior to this other than toncils out when I was 2 yrs old and I had several meltdowns prior to heading to the hospital. My Dad passing on 15 years ago due to complications from OHS didn't help me mentally either.

Best advice I can give you is to find a surgeon your REALLY comfortable with, pick your valve, cut to the chase and get it over with. Im 43, I went mechanical so I can hopefully avoid another OHS. Im 10 months post op and other than the scar on my chest you wouldn't know what I've been through. I feel so much better now, no dark bags under my eyes, no struggling with even lightly moderate exercise, and certainly a mindset that is thankful of what I have been blessed with in life. I think all will agree that there is more appreciation for just about everything in life once you get back to living it.

Im a numbers guy and that is what I fixated on. Its comforting to know that for a BAV replacement the survival rate is in the 99% range. I sometimes wonder if that includes those that may have complications in the hospital due to infections and such. Hospitals like to have those numbers as high as possible so I even look at those with some bit of skeptisism. But even if that number is 95 or 96 percent I would think those cases that didn't end favorably also had other issues going on.

It sounds like other than the valve your in great shape, so try and keep your thoughts positive because your not only going to get through this your going to look back in 6 months (like you said) and your gonna be grinning ear to ear.

Also, your from New England ? Im from NY and its nice to see someone say something positive about my hommies ! But I gotta ask you, "How bout them Giants ?"

 

[Alerion]

Yo! ctyguy!

Yeah I am in good shape and other than the BAS, I feel great. I hope after this Wednesday and my Cardiac Cath, they'll just rush my butt to the OR and get it over with.
Where did you go and who was your surgeon? I am willing to travel if it seems worth it. I have yet to meet with the surgeon my cardiologist has recommended but I hear he is fantastic from a number of his patients.

Yeah your homey came through big time. He picked me up, brought me inside, ran out and got my briefcase while he was barking orders to one of my colleagues to call an ambulance. He stayed long enough to see that i was alert and sitting up then excused himself to go (hopefully) catch his own train. I really hope he made it. He didn't tell me his name or wait to be thanked or anything. I got nothing bad to say about New Yorkers!
But I gotta ask - How 'bout them CELTICS?!

 

[ctyguy]

David,

My surgeon was Gosta Petterson out of the Cleveland Clinic. C.C. last year was rated #1 in the US for heart procedures. Its a big place but I have nothing but good things to say about it, they saved my life.

I don't want to downplay what you need to have done because its a big deal for sure. If you had some unusual circumstance/complications I'd strongly recommend you contact C.C. but given that your health is otherwise good I think you can find a surgeon more local to you that is more than qualified to help you. Im sure others will be along with recommendations of docs/hospitals in your area. Focus on figuring out what type of valve you want and then understand what your procedure options are. Can they do your surgery as a Minimally Invasive procedure ? If you have a vanilla BAV and no other issues your probably a very good candidate. That can be dictated by the protocol that the hospital puts forth. There are two excellent hospitals local to me and one is even a heart hospital but I still ended up driving 2 1/2 hrs to get to C.C. I was told that I would have experienced a full chest-crack (8 inch incision) at either local. But at C.C. the incision was between 4 and 5 inches because it was a minimally invasive procedure and I totally think I healed faster and was back on my feet that much quicker because of it.

Celtics eh ? Rumor has it that you guys might take Starbury off the Knicks hands, wouldn't that be nice ! We are just waiting for Lebron to sign next year, then things will be interesting again.

Best of luck to you...