Pre-op Roll call

[Diane]

Hi Betty,
I guess I have just been hoping this "can of worms" that I opened about 6 months ago would close itself back up! About 6 months ago, I asked for a referral to Stanford for possible Pulmonary Hypertension that was discovered on my latest echo which was in April.

After several trips to Stanford and lots of tests, it turns out that I was left with an incompetent pulmonary valve following the repair of TOF and it is now time to replace it. They originally thought I would be a candidate for a new procedure where they implant the valve via catheter. However, I found out on Friday that the opening in my pulmonary artery is too large for the size of valve that they can thread through the catheter. So I guess I am now officially going to have to have surgery.

I have looked at my calendar and the most "convenient" time (is there such a thing as a convenient time for OHS?) looks like the last week in February or the 1st week in March. I have to get the OK from my insurance then I have to get back to the doctors to have my name put on the OR schedule.

I haven't posted much but I have picked up a lot of really good pointers on this site in the last 3 or 4 months. I am a "list-maker" and the info that I have gotten here has helped me to get my lists started. I have also been checking back every few days to get surgery updates on those that have recently had surgery. All of the success stories have been really helpful in relieving some of my anxiety about my impending OHS.

Diane

 

[DavidC]

First or Second week of Jan

First or Second week of Jan

I'm new to the board and expecting my surgery to fall early in Jan 4 or 6th (around there).

I was limping along with no sign of worsening for 7 years. Now suddenly just in the last 5 weeks things have been bad and everything started moving toward surgery.

I'm not happy but part of me wants to confront it finally. I'll be happy when it's over and I can move forward.

(If you are going along and feel like something's not right then beat your dr/nurse over the head if you have to to get checked out. My dr's nurse wouldn't make me an appointment for 4 weeks out. My doc was pretty upset when he found out. As it turned out my condition had taken a drastic turn for some reason.)

DavidC

 

[Marguerite53]

Hello

Hello

Hello, David.

Welcome to this wonderful site. Please take some time to investigate all the wonderful people and information stored here.

I am very curious about how you suddenly "knew" things were worsening about your condition, and, well, just any other details you would feel comfortable sharing.

There are so many helpful places to look within this site regarding what to expect and how to deal with little peculiarities, etc. Please feel free to ask questions, start a new thread, follow a link, really -- anything -- if you haven't already.

Good luck! Keep posting!

Marguerite

 

[Peggy in Alaska]

Thanks, Betty

Thanks, Betty

Hi all in the wiating room:

Thanks, Betty for giving us in the waiting room a chance to get re-acquainted.

I am like Steve Epstein - echos show little change, but there is change nonetheless. Darn, I had hoped by some miracle that there would be no change. Next round of tests won't be till 2006, so I expect to be the last one in this waiting room. I've also been told that some patients with Ebstein's never do need surgery, depending on the severity. I suspect I don't have it "that bad" as I was 42 before they even diagnosed it, and it had been there since birth.

Happy New Year to everyone!

 

[thecman321]

one week away

one week away

in the waiting room.
hanging in there
(see new thread for details)

 

[kimmychesh_1]

In the Waiting Room

In the Waiting Room

Hello All -

I am still in the waiting room as well and have been quite busy with the holidays and work so just caught this thread. I was diagnosed a couple of years ago with moderate to severe aortic and mitral valve regurgitation with mild pulmonary insufficiency (EF 63%).

Nine months later (Dec. 03) it was changed to Moderately severe multivalvular insufficiency with moderate pulmonary hypertenstion (EF 60%).

I returned again in Feb 2004 for a bubble Echo (because of some mini-stroke symptoms) and the EF was 56%.

My doctor called and wants me back again for another echo and thallium stress test but I have been putting it off. I will have to have surgery to get these valves replaced/repaired and we are just trying to time it. I'm taking Coreg and Altace and am able to work so far.

Thanks for starting this thread.

Kim Cheshire
Age 47 mother of 5 soon to be a grandma in March ;-)
3+ tricuspid insufficiency
3+ mitral insufficiency
3+ eccentric aortic insufficiency
etc. (see above)
In the Waiting Room... ;-)[/SIZE]

 

[gadgetman]

Hi everyone in the "Waiting Room". Pass me the Reader's Digest.

My "wait" hasn't been as long as some have posted. Things took a bad turn in the Spring of 2004 with the sudden Shortness of Breath, lack of energy, etc. After playing "not my problem", i.e., Family Doc trying new meds, then referring me to my Heart Doc, who then said my problems were lung related, to the Lung Doc who, after withdrawing 750cc of fluid from my Right Lung area, said "sometimes we don't ever find out what caused this", then back to my Heart Doc whose Echo revealed my leaking valve. Then things suddenly got on the "fast track". ICD implanted, then the schedule for by-pass and valve surgery.

Thank God for sites such as this one where "we" can share our fears, joys, ups and downs with others. Gets us through that "waiting room" and into "recovery" with a much better state of mind. Thanks.

 

[techguy]

Monday it is....

Monday it is....

Well, the waiting is almost over. Monday morning at 7:30 I will be in the hands of the surgeons and staff at Albany (NY) Medical Center. The pre-admission testing went quickly and effortlessly, and I received detailed written information as to what I should expect each day. If nothing else, they are efficient there.
But, for all the high tech medicine, there is always that small doubt that creeps into the back of mind. I guess the most prevalent feelign right now is one of benign resignation....I don't really want to go through with this, but it seems like I don't have a huge choice!! Oh well....once I'm back I'll let all the great people on here how it went. Thanks for all who have shared their thoughts and experiences-reading them has helped a great deal!!!

 

[tobagotwo]

Well, TechGuy, just let yourself go into the "deer in the headlights" phase, if that's what it takes.

I've often likened it to a carnival ride. You pick the ride, buy the ticket, get strapped in, and you hope the guy taking care of it is a professional and that he's paying attention. Then they push you along the ramp, and all you can do is close your eyes and go along for the ride.

It's not so bad. In a weird way, it's kind of like passing a personal test. And when it's done, you feel so much better, you'll wish you could have done it sooner.

I will be thinking of you and your surgery on Monday.

Very best wishes,

 

[Kay]

Hi TechGuy and all others in the waiting room!

None of us would choose to go through OHS if we didn't have to. But I'll tell you what my surgeon told me that put it all in perspective for me...

He was explaining the mortality rate for my surgery (aortic valve replacement) and said that it was normally about 2% but that since I was diabetic my odds were about double that. And then he said that while my odds were about 4% that I would not survive the surgery, my odds were 100% that I would not survive without it. Ummmmm...4% chance of dying with the surgery or 100% chance of dying without it. Not too difficult a decision when you look at it like that!

The surgery was not nearly as bad as I had expected and 6 weeks post-op I'm doing great. You will too. It will be over before you know it and you'll have a new lease on life for the new year.

You're in my prayers for a successful surgery and an easy landing on the other side of the mountain. You'll love it over here!

God bless you,

Kay

 

[bvdr]

As you can see, our waiting room is a busy place. Several who had posted here have now successfully completed their wait and are now recovering and looking back on their unique experience. We all technically have related surgeries but each is unique as well. Very few go 100% smoothly without a glitch here or there. For those of you still waiting, I realize that the watching and waiting is oftentimes the most stressful period.

Please don't hesitate you introduce yourselves to us and ask any questions and post any comments you might have. These faulty valves of ours is what brought us initially to this site but we stay because of each other and because of you.

Betty

 

[Jewel]

Thrilled to be in waiting room with you all

Thrilled to be in waiting room with you all

I am a congenitial bicuspid aortic valve with mild mitral valve prolapse. Sitting around 1 cm with enlarged heart and ventricles. Maybe a new tricuspid regurgitation - last echo showed a hint of that. Sigh. Having a current argument with my cardio because I don't fit "traditional symptoms" yet the weakness and fatigue are severe. Couldn't get short of breath exercising if I tried because my legs would give out first - as an athletic person, I know this is wrong. I can get short of breath sitting here - but not necessarily exercising, go figure. In my fit of depression, rage, anxiety etc. etc. I found this site - thank God! I have been asking my cardio to do something other than a 6 month echo - please do an xray, stress test, nuclear test, angio - anything to check out my other valves and heart function because my symptoms are just not right (they keep telling me it's all anxiety). Last week they finally called back with a 'well alright we will do an angio to reduce your anxieties' and then I read the report they send my GP- all of my symptoms were reported as "patient declines surgery and denies symptoms". Yikes!! Big disconnect - I am looking for a new cardiologist this week to get a 2nd opinion and to do the angio - then I can tell you all my "date for AVR". Mostly - reading and interacting with you all has GREATLY decreased my anxiety and allowed me to focus on true symptoms = THANK YOU THANK YOU

 

[epstns]

Hi Jewel, and welcome!

I can tell you from my own experience that you may have to "fire" a doc from time to time. I fired my first cardio for his lousy interpersonal skills and his intent to treat me like I was 80 years old! (I'm in my mid-50's and have moderate aortic stenosis.) He felt that my stenosis must be simply from age, and treated me accordingly -- very restrictive! I changed to another cardio who did his own exam, in which he came to the tentative diagnosis of bicuspid aortic valve with resulting stenosis. A subsequent echo confirmed the diagnosis, and treatment has been progressing along guidelines for a middle aged patient with a bicuspid valve. The treatment plan is more "livable" and the doc is beyond my expectations -- a real "people person" who takes an interest in his patients and treats the patient, not just the medical issue.

Do the research and get referrals -- change doc's before you regret it. I looked for a doc with a specialty in valve disease among younger patients. Granted, I live in a big city so we have a large universe of doctors, but there are likely several to choose from in even a moderate sized community.

Again, Welcome to The Waiting Room!

 

[Karlynn]

There are a lot of good doctors and then there are others. I'm glad you found out about your current cardio. Doesn't it make you stop and wonder about the care of the patients who haven't had the benefit of reading his notes? I went through 3 cardio's before I found one that would take me seriously.

 

[tobagotwo]

Jewel,

In observing posts, you will find that the majority of bicuspid valve owners tend to be more atheletic than their tricuspid fellows. This can be something of a handicap for diagnosis because, as you have realized, your fitness tends to obscure your symptoms. It is possibly more jolting psychologically as well, as we usually equate fitness with general healthiness.

Two things: your fitness will serve you well in your surgical recovery, and once you've recovered, you will be healthy again, as well as being fit. It's like replacing the fuel pump on a fast car - the rest of the parts are still ready to roll after it's replaced.

Just a quick point about regurgitation (valve leakage). At any given time, any heart, including a totally healthy heart, may be experiencing trivial regurgitation in one or more valves. It comes and goes, as it's a living pump.

It's not like the regurgitation your aortic valve is experiencing. There may also be some regurgitation from other valves right now that is caused by the enlargement of the heart, which can torque the other valves in such a way that they leak a little. That would fade as the ventricular and atrial enlargements reverse. Living valves adapt. At this point, you can't know how much of that enlargement will go away, but it generally shows great improvements within six months of surgery, and may completely disappear.

I couldn't "feel" the stenosis affecting my heart until near the surgery. But I can tell you that even one day after surgery, my heart felt like it was coasting. I hadn't fully realized how bad it had been until I could compare how wonderful I felt afterwards.

Best wishes,

 

[Jewel]

Thanks and New Cardiologist

Thanks and New Cardiologist

Okay -now I can sit in the waiting room with you all a little more patiently. Thanks for the updates everyone included! I got in to a new cardio who did not put me through 3 nurses and an NP/PA first. That was nice - with a real "zen" office - helps with my stress. She listened very thoroughly (not just on my back 3 times!) and also listened (and wrote) my symptoms as I see them. She agrees with tobagoto - athletic people compensate and keep our hearts pumping in a different manner than others. She also said I may be "feeling/hearing" symptoms that are not there while ignoring others due to my living with them every day since who-knows-how-long. She will not do the angio right away but an overall echocardiogram and then probably a transespophogial (sp?) which sounded like a big gag to me - I'll go look up threads on that one to see what you all have to say. And she is reviewing the last 5-10 years of records to see what she thinks. So back in a few weeks- J

 

[starkone]

Irony......

Irony......

I find it ironic that this post comes today. I am headed to the cardio for my yearly echo. I get very nervous at this time of year. Last year the results were close to surgery....a .8 valve opening. Alll the cardios that I have seen (even at Brigham) tell me that since I have always been athletic that my heart has compensated extremely well and has probably been like this for a long time and I could go a long time further. Although, my PCP puts limits on my exercise....not over 130 heart rate.
Well, off I go....as soon as I know I will post and see what the gurus here think...
Thanks,
Karen

 

[bvdr]

Karen, best of luck at your cardio appointment! If you get the news that it is finally time it may still shake you up a little bit for a spell. Remember for most of us the hardest part was the time spent in the waiting room.

Jewel, the transesophageal echocardiogram is often just referred to as a TEE. That might help you a little with your research. I'm glad you like your new cardio. I'll be watching to see what you find out.

 

[starkone]

Question??

Question??

I had my echo this AM and left there totally mad.
I have little faith in the technicians and it is always a new one.
To make a long story short....my first echo 5 years ago was a 5-10 min
deal that lead to a instant .6 valve measurement followed by a cath!
I went after that to Brigham Womens where they do a really thorough echo and they measure .9...same as the cath.
Last year the girl took about 30-45 min and came up with a .8. Today...
I timed her at a record 11 minutes. I just don't see how a decent read can be done in that time....a quick peek at all the valves.
Do you guys think that this is a problem? How long does the average echo tech take to do an echo?
I have so little faith in them.
Can you relate some of your experiences?
I asked to have the results sent to me too and the answer was no....get it from doctor or hospital records dept.....geez!
Thanks in advance for the help.
Karen

 

[techguy]

from "Pre" to "Post"

from "Pre" to "Post"

Again, my thanks to all who have voiced their support and encouragement. As of today, I am 1 week post mitral valve replacement and doing fairly well. I don't want to post a lot about it in this forum, but will in the Post surgery forum. All in all...although bearable, I wouod have preferred week in the Bahama's!!