newly diagnosed

[Superbob]

Michelle,

Dr. Speir and his whole team at Inova Fairfax are first-rate. You will be in good hands.

Merry Christmas and Happy New Year.

 

[susieq14]

Michelle,


I am so sorry that you have received this surprise diagnosis. I can totally empathize with you.

My mitral valve regurgitation discovery was similar - totally out of the blue - just by chance. In June 2004 I saw a new primary care doctor for my annual physical and since I was 53 and my blood pressure was running high and my father had heart problems (Triple bypass at age 62, diagnosed with CHF in May 01 and had 2 massive fatal heart attacks in September 01) she decided to send me for a Stress Test. I did okay on the Stress Test but while talking with the cardiologist he suggested that I should have an echo as well. He heard a very slight murmur which no one has ever mentioned to me. You can imagine my surprise a week later when I got a phone call at work from my Doctor telling me that I had a little problem and better go back and see the cardiologist! Guess I was lucky to have 2 attentive doctors who were doing their jobs 100% otherwise who knows ?.. Anyway my cardiologist thinks my valve was damaged due to a series of infections in the winter of 2004 (i.e. an ear, sinus and UTI - I was feeling lousy for 2 months, even fainted and spent a nite in the hospital and was on 3 different antibiotics) but says at this point it doesn?t matter how it happened just that we have to watch it and that I will probably need surgery in a few years.

I HATE being in the "waiting room"! I'm a real control freak and love to plan every little thing I do. When I was first told in August that I had a valve problem and would need OHS "someday", it scared the living daylights out of me and my dear husband of 31 years. As a matter of fact we changed our vacation plans for winter 2005 because we were both afraid to go out of the country in case something happened. I think I feel a little more secure now but I'm still not venturing far!!! I have never had any symptoms. My cardiologist keeps telling me to relax but that is easy for him to say. I see him every 6 months and the weeks leadig up to and right after those visits are very tough on me.

I read the Board a lot but don't post too much because I don't feel like I have much advice to offer compared to some of the regulars who have been through so much. It really is an amazing site with some unbelievably wonderful regulars who are so willing to give so much to those in need. It is great that you decided to visit and join in. Already you have received so much helpful information.

Good luck tomorrow at your appointment. Be sure to ask lots of questions. Take a notebook with them written down and take notes. A recent message talked about the importance of not smiling. So the doctor takes you seriously!

Let us know how you do. The folks here really do care!

Take Care!
Susie

 

[Arnold Ziffel]

Hi Michelle,
Sorry to hear about your valve, but most of us here have or had the same problem. First let me say I am 7 weeks post op avr and have to say I finally feel great.
I was in shock too when I found out about my congenital defect, when I asked my dr he had a good reply. He said everyone has about a 1000 different underlying problems, some never surface in ones lifetime and what I have is easily corrected, he said I didnt draw a bad straw, it could have been worse.
Everyone recovers and handles situations differently, for me I didnt dwell too much on it for the two months prior to my surgery, I think the worst moments for me was while driving to the hospital that morning, the dr called me and said they had a cancellation and can I get there sooner because Ive been moved up.
I do remember during my pre-op admission I was in the waiting room, a family of another patient was in the room and I overheard one say, I couldnt believe Uncle Joe, when the surgeon came out to greet him the first thing he said to him is how many have you lost. The doctors reply was, everyone thats walked in here has walked out, the ones that didnt make it were emergency cases after it was too late.
That made my comfort level go way up. Post operatively speaking it wasnt that big a deal as I previously imagined, recovery is slow but I am much better now than before, in more ways than a mended heart.

I tend not to react or over react until the final moments, but thats just me.

Everyone here has offered good advice, I would say do your homework, ask questions, and be very involved with your medical care. I would ask why am I taking whatever pills they gave me so I can be in the know.
if you have an HMO it can be easy to get lost in the bueracracy (sp)? in the follow up between the different drs.
Good luck to you, tell your husband everything is going to be fine. You will be better than before (maybe even consider teaching teens).

I had a girlfriend for 1 month, I thought I was going to loose her at first thinking who would want to hang around with a defective guy. She helped me through it, is still here and we are celebrating our first of many many more Christmas' together. Think positive, life is good. Keep us posted.
Steve

 

[marky]

Michelle
Welcome! I echo the great replies that you have received already.. Tons of information on this site!!

I am also a mother (of 4). and like you was blindsided with my diagnosis.
I knew that I had a mvp..with No issues..
so I was in for a routine visit the end of March last year..and in surgery the begining of May.
4 weeks time to plan and prepare.. so I completely relate to the WHAT? feeling!

My best advice is to take a DEEP breath and Know that all will be ok! You already have a surgeon, and all the test are being ordered..that is the first step.

You are young and healthy so that is also great news.

and this board is full of people who have had valve replacement/repair and are all here to tell about it
So ask away.. someone will have some answers for you

 

[Aussie Chris]

Welcome Michelle

Welcome Michelle

Welcome Michelle,

Sorry to hear about your diagnosis. It kind of hits you like a sledge hammer doesn?t it.

In September this year I remember what it was like being told by my cardio that I would need surgery within 12 months. Then the worry about these unknown tests (TEE and angiogram). Well the worrying about tests was far worse than the tests themselves. As for the wait, I knew that I would need something done from age 25 but I always felt that it was off in old age and put it right out of my mind for the next 20 odd years. Once I knew it was imminent, I have got to say the sooner the surgery took place the better.

My recommendation would be to collect all the info, select your surgeon and discuss your options with the surgeon and then try to relax and enjoy some quality family time before surgery (You probably say ?yeah right?, but I really believe that dwelling on things can be counterproductive and the family time suffers).

With the information you receive at VR.com and the discussions with your surgeon you should be able to make some pretty informed decisions fairly quickly. I found that from my cardio diagnosis to surgery was about one month. I am now 9 weeks out from surgery and feeling so much better than I was just before surgery and just glad I didn?t put off the surgery till later.

All the best, and ask lots of questions of us. There are a lot informed people here to help.

Cheers,

Chris

 

[Susan BAV]

Welcome Michelle -

And like Al said, it's terrific you found this site already! I searched the web for months pre-op before I stumbled across this site; and it was then, and still is, so helpful to me. The folks on this site are so helpful and supportive.

I'm a BAV too, but my murmur was obvious from birth. I don't know exactly when the actual diagnosis of BAV came, but I wasn't completely caught by surprise when the valve was discovered to be failing (although I thought I would be older) and I've always had to deal with some limitations; I think your being caught by surprise would be more difficult to deal with but I'm sure you will be able to adjust, from reading your intelligent posts and questions.

Know that it's nothing that you've done, and nothing that you've brought on yourself; it's strictly a congenital abnormality and not really that uncommon but there are degrees of intensity within the disorder. And one huge plus is that BAV people usually have especially clean arteries! Another interesting fact that I've read, though you can't tell it from the postings on this site, is that BAVers are usually male. I believe the male/female ratio is about 3 or 4 to one. You might enjoy reading the Story section of VR.COM; it was helpful to me.

Husbands: Mine has been extremely supportive (we were married just under 24 years when I had to have the valve replaced at age 42) but there have been times when he's been distant and I think he just has had some peace to make with facing mortality and age and ill health and such. There were times that we've had to focus on my health but I try to not be absorbed with it; now is the time for that focus on your health though and then you can put it behind you, at least to some degree, after your new valve -- which will probably make you feel like a new woman, by the way! It did me!

Shock: At one point I felt like a big defective slug of humanity because I needed a surgery to survive. That was from a bit of depression shortly after the surgery I think, but I was able to think my way out of it by considering that C-sections are quite common for women to survive the extremely common birth process and in fact those women need that surgery to survive. So, just because my surgery was less common, I didn't need to feel like a big defect. Lots of people need various surgeries to survive.

I had more and more trouble grabbing breaths pre-op too and there were a few nights when my heart was just flubbing in such a weak and gurgling way with great spaces of missed beats that I was afraid I wouldn't wake up. My husband had that fear too and a few times I woke up to him leaning over and nudging me to be sure I was still alive. I prayed a lot too.

The angiograms, and I've only had three, have always gone fine. I did have a funny event occur shortly after the last one but I won't go into that now. They can go badly, though, so make sure the doctors and hospital you go to know what they're doing. And ask them if their facility reprocesses "disposable" and "one use only" instruments. You don't want that.

I had more thoughts but I've run out of time. Welcome and best wishes, Michelle.

 

[afraidofsurgery]

Welcome

Welcome

Hi Michelle,
Glad you found this site. I was followed for 8 years (or someting like that, I lost count...) for aortic regurgitation and a mildly dilated left ventricle. Doc and I were waiting for symptoms or for a further increase of the ventricle. Finally got short of breath climbing steps, and wham! Time for surgery.

If you're in good hands - and it sounds like you are - get as much education as you can on your condition, valve options, etc., and you'll feel much better when you're working with the docs instead of feeling like they're 'treating you' without your input. Then just enjoy the ride...as weird as that sounds.

I was SO unbelieveably impressed at how smoothly my cath and surgery went, and was awed to be in the presence of highly skilled nurses and doctors. IT was amazing!!

I have one daughter, 7 yrs old, and she was also 'prepped' for the occasion and visited several times during my hospital stay. And now I have SO much more energy to enjoy her!!! Didn't realize how crummy I felt.

One more funny - while being prepped for my cath, I thought the nurse said she was going to 'shave my BRAIN' (not groin) and boy, did I squack about it!!! I thought they had me mixed up with someone having brain surgery! Then I looked over and my doc and the intern were literally doubled up laughing so hard they couldn't speak. Guess I wasn't given quite enough drugs...

Good luck and take care,
Patty

 

[MarkU]

My BAV was first diagnosed at age 5, I had my first catherization at 15, but didn't have surgery until I turned symptomatic at age 47.
I felt so bad that I pushed to get the earliest surgery date I could once my cardiologist confirmed I was ready.
As it was, I almost waited too long as I had developed significant left ventricular hypertrophy and my valve turned out to be much more calcified than my echo had indicated.
Mark

 

[StretchL]

I am having a difficult time accepting that I have gone from a healthy, active person to a sick person with a possibly life-threatening condition. I am stressed not knowing when I will have the surgery and feel tired and winded from my symptons.
How did you all handle the wait?
Michelle

Hi, Michelle.

I'm sure our diagnosis came as a shock to you. Sometimes I think those of us who were diagnosed as infants have an easier time with all this... as the valve wears out later in life the diagnosis just feels like the natural evolution of something that was there all the time.

Today, surgeons are performing what just a few years ago would have been impossible, and giving those of us with valvular disease the chance to lead/return to normal or all-but-normal lifestyles.

Having just gone through aortic valve replacement surgery, I can only give you my opinion that the symptoms were worse than the surgery/recovery. Of course I'm not even three weeks post-op, but I can tell you that I feel more healthy now than I did three weeks (or three days) before surgery.

Finally, let me say that you've found a wonderful resourse here on this site. There are so many people with so much experience of exactly what you are now going through- if you're anything like me you'll come to depend on their thoughts, advise, questions, challenges nearly as much as you depend on what you hear from your doctors.

You will be fine! Once you get some more tests done you'll learn more about exactly what's wrong, exactly what needs to be done to fix it, and exactly what that time table is. Just knowing this information was reassuring for me... the unknown is what caused me anxiety.

Best-

 

[Der Biermeister]

I am having a difficult time accepting that I have gone from a healthy, active person to a sick person with a possibly life-threatening condition. I am stressed not knowing when I will have the surgery and feel tired and winded from my symptons.
How did you all handle the wait?
Michelle

Hi Michelle --

Just saw your post. And I want to give you some encouragement. First of all - YOU ARE GOING TO BE JUST FINE. In fact, you are going to be better than fine. The important thing is to get your surgery done and done soon. Nothing like getting it out of the way in the winter months. Then when spring rolls around, you won't believe how blessed you will feel.

The surgery is not as bad as your mind will conjur up. Same for the recovery. You will actually be amazed at how quickly you recover. The secret of course is a positive attitude and STICKTOITIVENESS. Be relentless in your recovery and it will pay off big time -- I guarantee it.

Listen - if you would like all your questions answered, then click on all of my posts going back a year and a half. I say this because I probably asked more questions than anyone before or since! I was a real pain in the ole buttski for quite awhile as I tend to worry about just about everything. The brain trust here was fantastic in answering all my questions and setting my mind at ease.

So .... getRdone

 

[michellep]

Surgery is set for Jan 12 for a aorta valve replacement. I am going with tissue as I can't stand the thought of blood thinners. Plus, the ticking of the mechanical valve makes me think of the croc from Peter Pan. Now how am I going to sneak up on those first graders if they can hear me coming?

 

[tobagotwo]

You are plainly normal in your mix of reactions to your diagnosis. It's a painful grieving process, with a side dish of stark terror. I've been there, as have many here, and I can only offer that you will get past it eventually. We do understand much of what you are feeling now.

Also realize that any spouse can only take so much. Most of us have had points where we chattered on and on about our problem until our loved ones' eyes glazed over. It's hard to believe it, but we can bore even our Truest Loves to tears with stories of our fears of the circling Reaper, and with our righteous anger about our undeserved conditions. Realize that they are helpless to do anything real for us, and it's very debilitating for them to constantly be made aware of that by our continuing plights (particularly true for us fragile males, who have no emotional framework for it). It may take your husband a while to come around. He may need to fight with himself before he can step up and fight for you.

This is one of the reasons that this site is so helpful. You can say what you feel here, and no one is nodding patronizingly, telling you that they need to sleep now, chiding you to stop feeling sorry for yourself, or telling you that, "They do these all the time now. It's no big deal." The words you type are touching the scars of wounds we have all felt. It is a big deal. It does occupy at least part of your mind, almost all the time.

It will probably go easier than you think, for such a major operation. You are young and otherwise healthy. Your initial recovery may well be quite rapid and complete. I bounced back swiftly, as did many others. Remember that on the site, you may hear from more people who have had problems than who have had fully successful OHS. Many success stories fade from the site shortly after they recover, which is a perfectly normal and healthy response to having their lives back.

I wouldn't overlook the possibility of your night-time breathing episodes being partly panic-driven. Low oxygen is an occasional byproduct of valve problems, and it has been tied to feelings of panic (what did you feel as a child when you stayed underwater just a tiny bit too long, and suddenly struggled for the surface and air?), as well as feelings of impending doom. And as you wake up, a part of you realizies that there is a real reason to feel some panic, so that doesn't help.

Not to discourage you from seeking professional opinions about it, but you'd probably not be normal if you didn't have a panic attack or two. You might consider asking for a portable EKG unit that monitors and records arrhythmias for 24 hours, to help rule out VTach or VFib.

Some things to consider, from your initial post...

- Check the descriptions of the leakage (AKA regurgitation or insufficiency) for the mitral and tricuspid valves. Trace regurtgitation comes and goes even in healthy hearts, and can be largely ignored. Mild regurgitation may be caused by ventricular hypertrophy (muscular enlargement), which can deform the shape and size of the mitral annulus (opening), which may dissipate after surgery.

- Is the exercise stress echo solely to determine whether you're ready for surgery? It's not going to give much in the way of useful numbers to that end. You have enough symptoms to qualify, and a stress test is usually overkill if it's just for that purpose. If he is asking for it because he believes there are other functional abnormalities as well, there might be some clarification to be gained from it. If you had stenosis, there is a specific warning that you should not be given a stress test.

- It would be wise to be tested for dilations (aneurysms) of the aorta as well. Some people who have bicuspid valves develop them, and there's no point in letting them open you up without taking care of anything of that type that may be extant. You should also check your aortic root size, to see if stabilizing that should be part of the surgery as well. You don't want to leave things pending.

- If he wants you to have a cardiac catheterization, find out what the requirements are for cath timing. If it's determined that you do need surgery very soon, there may be a 60-day limitation, which could cause you to unnecessarily have to undergo a second cath just before surgery.

- If you have the cath, don't let him sign you up for a TEE as well, unless (as before) there are specific other abnormalities that he is trying to locate. Beyond a point, the tests just pointlessly torment patients who are already distressed. How much abuse is a cardiologist's CYA worth?

- You need your echo and other cardiac records, which they are required by law to furnish to you. Check the numbers from previous echoes against those of your most current echo. You likely have some significant ventricular hypertrophy, given that several valves are affected, and enlarged atria.

The hypertrophy is common to severe valve problems before surgery. It's caused by the heart muscle becoming abnormally stronger (and thus larger) in its attempt to continue pumping effectively in a system with bad valves. Usually, the heart "remodels" (goes back to its original size) after the valve problems are corrected.

Best wishes,

 

[tobagotwo]

Whoops...

Looks like my post is a little late. I was still writing it when you posted with your OHS date. Glad they have seen the light and set you up to get fixed. Certainly the cath timing isn't an issue anymore.

Fishing behind the net again,

 

[davidfortune]

Whoops...

Looks like my post is a little late. I was still writing it when you posted with your OHS date. Glad they have seen the light and set you up to get fixed. Certainly the cath timing isn't an issue anymore.

Fishing behind the net again,

Bob - can you still attribute this to pumphead?????? or are there other underlying causes

 

[Nan]

Hi Michelle and welcome!

I am so glad that you now have a date. It's not that far off, so you don't have quite as much time to build up even more anxiety. And as everyone has said, it is perfectly normal to be anxious! But the success rates for OHS are great and you will do fine.

There are some tapes and cd's that can help with anxiety if you are comfortable with that modality. One of the best is from a nurse whom I believe started a program at the cleveland clinic....Diane L. Tusek. Her company is Guided Imagery, Inc.

I got mine in 2 days when I ordered it.

Hope you will be feeling much better soon.

 

[michellep]

Bob,
Although we seem to have overlapped each other I find your words or wisdom comforting and very valuable. You are right about my husband and my current state of mind. I am obsessed as anyone can see by the amount of times I check this site each day (that will change this week when I go back to work). My husband's eyes do seem quite glassy. I find that reading other people's posts are comforting as I see my questions within their posts.
I go to sleep thinking about my heart and the first thing I think of as I wake up is my heart. I find myself sharing the bits of info I learn from you all but I have to convert the language to "average man's" terms when talking to family.
I have also learned not to talk about it with neighbors or friends. Their pity looks are hard and I find myselft quickly trying to assure them that it isn't that bad. I even find myself quoting the website and my new friends.
I am grateful that I don't have to wait years but also know that there is a reason the doctors aren't making me wait.
Yes, my aorta root is enlarged/dialated. The cardio. who performed my cardio cath. didn't explain the results. He told me that my regular cardio would speak to me this week.
So, I am in a holding pattern, ready to launch. Taking care of children , husband, and students. Preparing my living will and power of attorney (pretty morbid) and packing my bag.
I also have the roller coaster of emotions but I know it will be better when I am done.

 

[Karlynn]

Surgery is set for Jan 12 for a aorta valve replacement. I am going with tissue as I can't stand the thought of blood thinners. Plus, the ticking of the mechanical valve makes me think of the croc from Peter Pan. Now how am I going to sneak up on those first graders if they can hear me coming?

I read your first post shortly after you posted, but didn't have the time for a thoughtful reply. I was 32 when I had my mitral valve replaced. That was 15 years ago and life has been terrific. The thought of having it done does scare the bejezzuz out of you tho'! I've lead a very active life. Been able to travel to Europe twice and now have a lovely granddaughter to keep me even more active. (I'm a very young grandma!!! )

Just be good to yourself following your surgery. Don't try to be superwoman and try to have the fasted recovery on record. Your body will have a not-so-nice way of letting you know when you've done too much. The first couple of weeks are to be devoted only to walking, sleeping, eating and breathing. This may sound easy now.

You may also want to read this thread http://valvereplacement.com/forums/showthread.php?t=17116, if only for the slim chance that you wake up from surgery to find that there was some reason they felt it would be better for you to go with a mechanical. (This does happen on rare occasions - or vice versa for those who's choice is mechanical. They won't know exactly what they are dealing with until they open you up and get a first hand look.)

I know that the 12th will go very well. And you will be in my prayers.

 

[Ross]

I am going with tissue as I can't stand the thought of blood thinners.

May I ask what has you fearing this so much? Oh yeah, it's not blood thinners, but anticoagulants. Coumadin does not change the viscosity of your blood at all.

 

[Vince]

Sounds like the same way I felt

Sounds like the same way I felt

Hello Michelle,
I just wanted to say that I happened upon this site,and happened upon your postings. Upon reading them I found myself looking back. I was diagnosed at 30 with bi cuspid,was monitored till 2004,and was told the time was coming I was going to have to give some thought into surgery. I lost sleep,always thought about it.I did the same ,tried to get things prepared. I opted for the mechanical valve and thinners,because i was so young. I was afraid of the surgery,but youd be surprised ,it wasnt as bad as I thought. Believe it or not my life has gotten better since the surgery.I dont feel as tired(which I didnt realize till after the surgery).The Mechanical valve isnt as bad as you may think as far as the "ticking" goes. I hear it all the time if I choose to,but you get used to it. Good luck,I hope everything goes well

 

[MrP]

Please check information available at

www.bicuspidfoundation.com

if you haven't already. If your aorta is dilated as determined from echo, a CT scan will allow for visibility of your entire aorta. Hopefully a CT scan will be performed prior to surgery to determine whether or not an aneursym is present and to avoid another surgery in the near future.

All my best,
MrP