All of a sudden I need an operation.

[Alerion]

Hello everyone

I just registered but I’ve been reading a ton of posts in the last few days.

I’m 48 and, though I’ve had this heart murmur since birth, I’ve been very active and healthy for my entire life and never given it much thought. I knew I would probably have to have some sort of operation at some point, maybe. I just figured I had a couple more decades.

Nope.

The week before last, I was running to catch a train in NYC and passed out on the street. A complete stranger picked me up and helped me into a nearby bank lobby and hung with me until I was myself again (probably missed his own train, God bless him! And they say New Yorkers are rude!).

I called my Dr.’s office and they had an echocardiogram done upon my return home.

The next week, I had a visit with my PCP (a cardiologist). He spoke with me for about 5 minutes, listened to my chest, looked at my chart and said “Oh my god! You’re going to die!” At least, that’s what I heard.
My wife tells me that what he actually said was “You will need a valve replacement very soon.” I was floored and a little freaked out.

I thought he was going to say something like “Well David, just take it easy for the next few days and I’ll see you back here in six months.”
Instead, he schedules me for a cardiac cath and urges me (his word) to research this procedure and my valve options, see the cath doc in the next week or so, find a surgeon etc.

I came straight home (my wife refused to stop at a bar. Some care-giver she’ll be!) and once I got online, in a few clicks I found this site. I’ve been reading a lot here since then. Some of it is comforting, some of it is scary. The studies I’ve seen referenced on the web comparing valve types are from the ‘70s (The VA and Edinburgh trials) and I’m not sure how useful they are for me. This must be the biggest issue we’re wrestling with – tissue or mechanical.

I’m not freaked out by hospitals or anything. My dad and uncle were doctors and medical discussions were commonplace in our house. This de-mystified a lot of the scary stuff people associate with health care, which made my subsequent hospital stays (extensive injuries in a car accident, hernia repair and two cornea transplants) so easy as to be almost boring. But the prospect of open heart surgery is intimidating.

Somebody (hopefully a surgeon) will be reaching into my chest and stopping my heart so he can cut it open and trade out some parts. Cripes! I nearly had to change my shorts just writing that sentence.

So, I was unprepared for this to happen so soon and I have very little time (apparently) to get used to the idea. The Dr.s I’ve seen are really pushing me to have this done quickly, and I am not about to argue, but the way it impacts my home life, my job, the addition Heidi and I are putting on our house, yada yada… we are pretty overwhelmed.

I’ve got questions, concerns, insecurities … I guess you all have been here. Fortunately, I also have Xanax (a gift from my cardiologist), so things could be worse.

I have read a lot of very moving posts on this site. There is a lot of scary stuff here, a lot of troubling stories, a lot of confusing information and terminology and even some tragedy… but there is also an inspiring amount of courage, acceptance, empathy and support.

So far, in just a few short days, this website has become one of my top resources and most frequently visited sites. I’m having Heidi visit also, though it troubles her to read some of this stuff. Is there a site for spouses/partners/caregivers? I took care of my dad in the last eight months of his life as he succumbed to cancer and it was grueling. This was fifteen years ago and there were almost no resources for caregiver support. I don’t want anyone to endure that for me, especially Heidi.

As creeped-out as I am by this turn of events, I don’t want to get all depressed and become an emotional black hole for my family and friends. The risk, the discomfort, the indignities and inconveniences are all temporary. In six months I’ll be bragging about it to my F&F and hopefully giving comfort to others who’ll find themselves on the same road. My birthday is around then too so I plan on celebrating my ass off. Got to look forward to something!

I’m no Polly Anna - I just go through life expecting things to turn out fine and so far, that’s worked out well for me. I have a great life, a wonderful wife, a nice little house near my dear old Buzzard’s Bay, a little sailboat, a great, low-paying job that I love and a pretty kick-ass network of family and friends. What I’ve read here about the preparation, the procedure, the convalescence and what can go wrong with each is pretty daunting, but I’m just going to assume it’ll all turn out ok. It always has.

But I will definitely be visiting here a lot, so I’ll keep you posted.

David

 

[skeptic49]

David, A BIG HEARTY welcome to VR! You're in the right place!

I enjoyed reading your post very much. You have a great sense of humor..."need to change your shorts after writing the sentence"..."wife wouldn't stop for a drink on the way home"...etc. This is very good because you don't want to lose the ability to just laugh at this thing once in a while.

We've all been there...this can't be happening to me! Please post all of your questions and concerns. There are so many great people here who can and will help...even if it's just support and a shoulder to lean on.

You might want to have your wife check into the significant others forum here to see who is around or lurking.

Well once again...WELCOME! You're among friends.

Jim

 

[escargome]

Well David, before I say anything else. Welcome
I hope by now, you have changed your shorts and gotten a good stiff sassparilla. My only suggestion to you is to learn as much as you can about what will be happening. I believe that this forum has an area for significant others to talk/vent/scream etc. Whatever decision you and your family make regarding biological vs mechanical valve will be the correct one that feels right for you. So in closing, don't forget that we are here 24/7 for support and questions and just plain old "somebody to talk to" Keep us posted when you get your date. I shall include you in my prayers.

 

[Freddie]

Welcome to the family David and Heidi.
With your attitude and great scene of humor, you'll do just fine.
Keep us posted.

 

[ALCapshaw2]

Yeah, the "cut into your chest, stop your heart, replace a few parts" can be a little daunting. It helps to 'go technical' and NOT personalize the concept. Compartmentalize the information into 'technical and personal'. Try to keep a lid on the 'personal' side

Check out www.heartvalvechoice.com and www.onxvalves.com for info on the latest and greatest in Mechanical Valves.

See my post under the "St. Jude" Thread (probably in the Valve Selection Forum for a brief synopsis on St. Jude vs. On-X.

Your sense of Humor will be a great asset in facing this ordeal. Keeping a Positive Attitude goes a Long Way towards having a good outcome.

BTW, first time Valve Replacement Surgery has an extremely High Rate of Success (1% risk of mortality, 1% risk of morbidity Nationally vs. almost certain demise if you 'do nothing').

Boston has 2 EXCELLENT Heart Hospitals at Brigham and Williams and Mass. General.

'AL Capshaw'

 

[Nancy]

Well, your story is about what happened to my husband at approx. the same age. He was a superb athlete. But he had had rheumatic fever as a teen, and had a murmur. He didn't pay much attnetion to it, and stayed very active. He passed out playing basketball, and shortly after that he had an aortic valve replacement.

This was a very long time ago. He went on to live a normal life span and passed away at age 75, living longer than most of his very "healthy" high school classmates.

I think the fact that he was always active helped him a lot.

So, it's a wonderful thing that these kinds of heart problems can be corrected. It will give you back your life.

Wishing you all the best.

 

[Alerion]

Thanks to you all.
I've taken this AM off from work to read up (thanks Al) and to give some thought to arranging our house, which is in the middle of some construction, for my return from the hospital. Just found the Significant Others forum - I'll check it out later with Heidi.
Friends here in our area and Doctors too have been steering us to Charlton memorial in Fall River MA to either a Dr Campos or Carr. Anyone know anything about these fellows? Their reps around here are sterling. Boston hospitals are an hour away - not a big deal -
but Charlton is 15 minutes away, which makes Heidi feel more secure about going home to rest, eat etc.
I dunno. There's a LOT to get yer head around!

 

[Ross]

I came straight home (my wife refused to stop at a bar. Some care-giver she’ll be!)

Woe

, dude that is just plain wrong. Tell her you want a redo.

Welcome to the forums. I can tell from your post, your going to fit in just fine in this asylum.

 

[Freddie]

David, your absolutely correct about the wealth of information. But try to take it one day at a time and relax in between.
I was put on the "on call list" on a Monday, got called in for pre-op that same week on Thursday with surgery the next day. No time for me to even think (please no comments from the rest of you )

 

[dick0236]

David, welcome

This type of surgery is about 50 years old. The outcome is very predictable if its done on a planned basis, not emergency. Take heart, it has been done, successfully "hundreds of thousands times" over the years.

Keep your positive attitude and you will do fine.

 

[Bina]

David (and Heidi) welcome to the group!
It's really a good thing that you did pass out and are getting this looked after.
My game plan was different.....stall, and stall, and stall. P-ssed off my cardio and my husband to no end. Then my PCP said I would croak within a year or so. Then another cardio took away my driving priviledges, so off I went to the surgeon.
Yup, I survived. And I've got this wicked nice scar as a souvenir.
Things will work out, OHS is more common than we realize.

 

[Lionheart]

Hi David,

Gee, you sound like me about a year ago when I was told "it's time for you to get a new valve". At the time my main concerns were to gain knowledge to allow me to chose a valve type, a hospital, and a surgeon that would meet my expectations for a long-term, positive outcome while not reducing my quality of life and if possible, not drastically altering my lifestyle.

Things that were important to me were:
- gaining knowledge about my Insurance coverage
- Understanding the terminology so I could understand what I read and discussed with others including the cardio and surgeon
- obtaining useful information about hospitals and surgeons in order to improve my outcome- See US News and World report hospital ratings
- deciding what I thought was the best valve choice that reflected my fears, expectations, and lifestyle
- setting up a support system for me and my SO (caregiver)

You sound like someone who wants to have some control over the outcome so I suggest that you:
- Read as much as you can but try to filter for only the critical decision points.
- Be vigilant of bias and take valve manufacturer website info, internet forum content, and even peer-reviewed scientific articles with a grain of salt.
- Understand that you cannot know everything about this procedure and do not need to, but you can know enough to make intelligent practical decisions about what is best for you.
- Prepare written questions prior to your cath and cardio appointments.
- Find the BEST hospital and surgeon that you can afford or that your insurance covers in order to improve your outcome.
- Tell your F&F and develop a support group for you wife and have her set up an email contact list so that she can keep them informed as a group instead of fielding individual phone calls during your hospital stay and home recovery.
- Keep your positive attitude; in a year I expect that you will wax eloquently about your surgery to other newbies.
- Finally realize that the message from your cardio was a GIFT that many people never get. Don't worry, you will do fine and your new valve (no matter which one you chose) will improve the quality of your life.

Take care,
John

 

[netmiff]

we've all been through the same story, more or less. I had a heart murmur diagnosed in 1985 (aged 30), so faint it took my family doctor almow twenty minutes intensive listening with his stethoscope to say "Yes, I can hear it !" Next major development was about 10 years ago, I had had a bad cold/flu/bronchitis, and to cut a long story short, ended up in emergency - couldn't walk without gasping for air, no energy, chest and back pains (I thought congestion). Doctor that looked at me ordered a raft of tests, an echocardiogram in 2 days (a record short wait!) and demanded to my PCP that I be seen by a cardio ASAP. Well, when the dust settled, it turned out that my very slight murmur had turned into aortic stenosis, I was followed annually by the cardio with an echo, and understood that some day, maybe, I might need open heart surgery.

Well, about 3 years ago, he said someday was soon, and, like you, I thought in terms of decades. About 21 months ago, soon became NOW! So, September 6th, 2007, at age 52, I had the dud valve replaced with a mechanical one.

I understand your fear, I just about freaked out, and I had to go back in fact, to get the facts straight. Mechanical valve was a no-brainer for me, I did not want to go through this again, ever (if possible).

Take it from me, the fear is the worst part of the whole thing. It sounds like you are ready to leave your dignity at home, and that is a good thing! I had a little bump at the very beginning (I was kept sedated for 2 days, as I developed a little pneumonia and needed the vent machine), but after that, I was fine. I was working from home (between naps and in my PJs, I will admit) a week after surgery, going up and down stairs to the basement etc. There were things that were hard like putting on socks, but the improvements come in leaps and bounds. In 3 weeks, I was using public transit to get to and from work, and medical appointments.

Sorry this is long, but you had a lot of ground to cover in your post! If you need any questions answered, start a new thread, it is the easiest way to et appropriate responses.

Anyway, I also want to say a big WE L C O M E !

 

[Cameron]

Hi David and welcome,
I was diagnosed in September/October with severe aortic stenosis due to a bicuspid aortic valve. My family doctor couldn't hear the tell tale murmur but as soon as I saw the specialist after being referred because of a couple of very mild but "funny" episodes, he told me I would need a new valve. I am scheduled for surgery on 9th Jan. His take, and one that I agree with, was to get it done BEFORE any damage was done to the rest of the heart. Be glad that you came out of the faint and have a chance to fix the problem - any type of new valve will be better than the one you have now. This type of operation is well understood and has a long track record of success. Find Docs that you are comfortable with then relax and let them do what they do best, and as someone else has already said, try (very hard, especially for the SO's) and keep emotion out of the mechanics.
Your great attitude and sense of humour is just what is needed to keep you sane during all of this.
Welcome!
Cameron

 

[Ross]

David (and Heidi) welcome to the group!
It's really a good thing that you did pass out and are getting this looked after.
My game plan was different.....stall, and stall, and stall. P-ssed off my cardio and my husband to no end. Then my PCP said I would croak within a year or so. Then another cardio took away my driving priviledges, so off I went to the surgeon.
Yup, I survived. And I've got this wicked nice scar as a souvenir.
Things will work out, OHS is more common than we realize.

Somehow, being the goat lady, that doesn't surprise me.

 

[PairoDocs]

David and (hopefully) Heidi,

Welcome to the forum. Maybe it's a blessing in disguise that you have such a short time to worry about it. If you read some of the accounts people have in waiting for months or years, you can see my point. In my case, it was exceedingly short notice. My mitral valve went flail, Dec 9th, discovered to be flail Dec. 11th, and my repair surgery was on December 12th. Then on to recovery. I tend to be a nervous sort of guy anyway, so I'm glad I didn't have time to even start to worry about it much. My wife did all the worrying for me. BTW, she's a regular contributor to the Significant Others forum on this site. We both use PairoDocs as our username here, but I sign my name Chris, and she does Laura.

Which valve is bad with your heart? What is the possibility of repair? Depending on the experience of your PCP and cardiologist, they may mention "replacement" when with modern techniques you may get a valve repair that could be more than adequate for a lifetime. Yes, my valve failure was immediately life-threatening, but despite it flopping back and forth between my left atrium and left ventricle like a sail with its mooring ropes undone in a gale, enough of it was okay so Dr. Huerd was able to assemble a normal sized mitral valve for me, reinforce it with a Dacron ring, and put me back together again.

The OHS itself doesn't seem so bad, as your heart won't hurt much or not at all (in my case no perceived heart pain ever). It's the sternotomy, or portal incision that will hurt or temporarily incapacitate you. The sternum will be cut down the middle then re-wired shut after your surgery is done. It will heal in about the same amount of time a regular broken bone takes to heal for someone your age. During that time you won't be able to lift more than a milk carton (half gallon) at first, but you can take decent walks and perhaps be permitted to drive even before the weight restrictions are lifted. I was on a 10 lbs. limit for 6 weeks, but was allowed to drive my automatic transmission van over ice and snow (limited, thank God!) 3 1/2 weeks after surgery. Had to. I live in the country and needed to get my children to and from places while my wife returned to work. If you get the minimally invasive version, the recovery will be faster still.

If you don't have a cell phone, it's time to get one and always have it with you whenever you're outside your home. I didn't get a cellphone until just two years ago, because, frankly, I liked my solitude, but for the sake of my kids and my wife's peace of mind I got one. Although I don't use it for more than 10 minutes on any given day, it's nice to have it handy--I'm just not a chitty-chat sort of guy. I write a lot( ), but my phone calls are generally short and for information exchange mostly. It's nice knowing that if something weird happens to my heart while I'm out and about, I can call for help.

Keep us informed about what's going on with your appointments. Feel free to ask for prayer, too. Most of us will gladly pray for your needs, and those who don't will at least have kind thoughts and best wishes for you. It's a very survivable operation, and rest assured most of us who have talked to you have been through it already and survived to regain the health we lost because of our hearts' valves (and sometimes major blood vessels) failing. Think positive! Within weeks your aerobic capacity should have returned and then some. In a few months, when weight and movement restrictions have been lifted, you will be back doing all the physical activity you have had to temporarily leave behind, and enjoy it more, knowing your heart is now up to the task of keeping you going.

Life does go on. Last summer, about six months after my OHS, I went with my family to Roaring Springs water park (lots of water slides, etc.) to a party put on by my wife's employer. While walking around shirtless (yes, a nice big sternotomy scar), I saw a young man with his chest sporting a virtually identical scar as mine walking briskly the other way with a group of other young people (nice healthy complexion and tan). I recognized him as being another OHS patient at the same hospital I was at in December 2007--saw him pale and having trouble walking around the Telemetry floor the first time, but better the second and last time I saw him. I didn't stop him to talk, but seeing him at the water park reminded me that just because we had OHS, didn't mean that life had suddenly become a small and perilous place. It's larger than ever... Finally, the scar will give you inspiration in later years for tall tales to tell your grandchildren and great-grandchildren.

Chris

 

[VikiVix]

all of a sudden

all of a sudden

I also was told I was going to die if I didn't have the surgery (valve replacement) when I went to get results from an echocardiogram 2 years ago. I didn't have time to think about it. They wheeled me in a wheel chair from the docs office to the hospital emergency room. Talk about scared!
But today, 2 years later, I'm happy, healthy, and very thankful I'm still here on this earth to enjoy life at it's fullest.
You'll be just fine! And keep coming to this site where you'll always have friends to talk to.
Viki

 

[bit of a chicken]

I think that finding out with short notice can maybe have a positive side, not so much time to dwell or be too fearful maybe ?? I have had ohs as a child for coarctation and I have bicuspid valve. I know that at some point in future I will need to have valve replaced. I am a bit of a worrier and due to surgery as a child I remember it and am totally freaked by prospect of further surgery. I would prefer to have it sprung on me out of the blue in a way, that is less torture possibly for my character. ?? Any way, I do not really know about this idea and for all of you out there , in that situation , probably it no so good !! Good luck to you and hello to all you great people; it is great to come here and read alll therse posts..... bit of a chicken !!!, actually, not just a bit , alot of a chicken

 

[Woodbutcher]

Hi David,
Welcome, you'll find lots of sympathy to your situation on here... I only found out a couple of weeks before my OHS so didn't have too much time to freak out before the op. A lot of my pre op calm was down to this wonderful site and it's truely inspiring charactors.
I'm slowly on the mend now nearly three weeks after surgery and feeling stronger every day.
Try not to worry (easier said than done!) too much. The surgery isn't just to patch you up and keep you limping along, it's a complete fix, they've done it millions of times and after a few months you'll be tip top again !
All the best of luck .
Justin

 

[hall]

Hi David and Welcome! I passed out too (twice ) A cell phone is a great idea. Like Viki, I went from the doc office to ER and had my AVR. Not much time to think. ( a good thing) We were all overwhelmed. If you have questions, ask away. Best of luck to you.