Pre-op Roll call

[bvdr]

We have so many new members in the waiting room as well as some (thanks, Steve) who have so faithfully kept up with our vitual housekeeping of the area, that I'm afraid of loosing track of someone.

I think it would be a great help if those in the waiting room could post here and just give a brief caption of their impending surgery status. I sure would appreciate it. Thanks, everyone.

Betty

 

[ericaj]

as it stands

as it stands

Hi Betty,

Although I am not really (atleast as it stands now) foreseeing a valve replacement surgery within the next few years, I am in the midst of seeing several different specialists to try and diagnose and eventually try adn link together several different problems I have including the aortic/mitral valve disease, pulmonary probs and nerve/muscle issues - my Drs. are thinking along the lines of either a connective tissue disorder or collagen vasc. dis. as well as next month (jan) seeing the Genetics Dr. and Counselor. Next week tues. I see my ACHD Cardio and my EP and Weds have the Sleep Study sched.

Will keep everyone up to date,

Erica

 

[gijanet]

Katie will definitely be having her surgery..........

Katie will definitely be having her surgery..........

this spring, but we are trying to stall as long as possible to recuperate from her surgery last April. Most likely, it will be around the March/April timeframe. Katie will be undergoing both the extracardiac fontan as well as having her common AV (mitral and tricuspid are merged as one) replaced with a mechanical valve - possibly a Carbomedics. Not sure how you would list that one, though..........maybe fontan with micuspid valve? mitralcuspid? mitricuspid? tricusmite???????

And yes, yes, we gladly accept all prayers. They've gotten us this far!!!
Thanks for worrying with and about us.

 

[epstns]

Hi Betty!

I'm still out here, and hope to be in The Waiting Room for a few more years. For the new folks, I'm in my mid (nearing late) 50's and was diagnosed with moderate aortic stenosis about 2 years ago. Apparently it has been brewing for years, but never was diagnosed until a murmur was noted in a routine exam. Follow up with cardio #2 (fired #1) has also revealed a probable bicuspid aortic valve as the likely cause of the stenosis.

All that said, I'm still asymptomatic (except I don't have the energy I had when I was in my 30's. . . ) and work 50+ hours a week, run 20 miles a week and work out regularly. Life is good, and I'm praying it can stay that way for a while. The docs are saying surgery likely in the future, but future is as yet undefined.

Hope we have enough chairs in The Waiting Room.

 

[MomOfThree]

Hello

Hello

Hi, I'm not sure what the "waiting room" is, but I guess, I qualify??

I'm a new member (about 2 - 3 weeks, I guess) and scheduled to have an AVR on 12/17. I'm 43 and not sure if I have a bicuspid valve or not, one cardio talked about it, one hasn't said either way.

But that doesn't change the need for surgery and I'm looking forward to putting this behind me. Definitely not looking forward to the surgery though. Some of you seem so calm before the surgery. I can't say that I do, though. But I hope that calmness comes over me soon, because I am stressed!!

Thanks for thinking of me and the others. Really appreciate it!
Martha

 

[bvdr]

Martha,

Yes, you most definitely qualify. Many of us refer to the time frame from diagnosis to surgery as "the waiting room". Quite a long time ago we relieved some stress here on the board by re-doing our vitual waiting room. It was really spectacular by the time we were done and it didn't cost a dime! Steve was appointed the official host as he has been around a long time and hopefully won't need surgery for years to come. We did have a lot of fun doing it. It had all the bells and whistles from choices of coffee, new magazines, stereo, recliners, and much I can't remember right now.

Being in the "waiting room" is considered the hardest part by many of us. We really do understand and is the reason we join you at this time.

 

[kevin21]

I've been in the waiting room for 20 years....

Had hole in the heart repaired at around age 5-6 and then a stenosis cleared at age 9-10. Love me some heart lung machine!!! (No thanks) I do like forgetting my keys/ wallet/ cell phone/ tickets to the game from time to time however. Thanks modern technology

I'm going to need AVR or AV repair soon, how soon is again freaking grey... I'm on 6 month follow ups and had a stupid TEE and MRA done in August. I guess it wasn't that stupid because it showed that my root wasn't as enlarged as the "regular" echo showed.

I still have to get the sternoctomy (sp, sorry) because, ??? That's just what they told me... I guess because of the 2 prior surgeries...

So, I'm on Coreg and Acupril, and have been for about 1.25 years, to slow or reverse the LV swelling, which it appears to have done.

I never really feel tired, short of breath, tingly or anything else. I do sometimes have a really cold left hand and a cold right hand (I guess due to the left/ right side circulatory system deal).

I have severe leakage, which has been monitored from day one, 28 years ago.

I don't phase about it, only sometimes do I worry about surgery.

Here's a sample of my "work/ stress load." Last Friday night, I rotated the tires on my 3/4 ton pickup and my wife's Envoy (suv for the car chalenged ) by using a floor jack and jack stands. I then changed the oil on both using the jack and stands.

Saturday I mowed the lawn (yep, it is still growing in Houston), sprayed the outside of the house for bugs, pulled up the vegatable plants in the garden, bleached the weep holes and areas on the back patio and then powerwashed the deck!!

I felt fine, heart wise, but my back needed the jacuzzi tub!!

Bring it on Heart!!!!

 

[78vette]

Waiting Room

Waiting Room

My wait is almost over. I leave Monday (6th) for Cleveland Clinic. I will be there week for testing and my surgery to replace my pulmonary valve is scheduled for the 14th of December. Unlike others I haven't had much of wait. I didn't know there was anything wrong until October 20th. I had OHS for TOF in 1975 when I was 4 and have had no problems since. Anyway, it is nice to know that I'm not out here all alone in this. I have received some WONDERFUL support from folks here and I want to say thank you.

 

[bvdr]

Tawana, I'm glad you checked back in. Do you have everything ready for your trip? Please post as soon as you can after your surgery to let us know how you are doing, OK? You will be in our thoughts and prayers for a successful surgery and complete recovery.

 

[Marguerite53]

Thanks, Betty!

Thanks, Betty!

Thanks, Betty!

It's nice to see everyone in the waiting room all at the same time! I've known about my bicuspid aortic valve for about 25 years, but only in September of last year was any significant stenosis detected. Surgery was mentioned then as a sooner than later thing to look forward to.

My aortic valve opening has gone from 1.9 to 1.2 to .95 (cm squared) in 5 years time, so we are monitoring with an echo every 6 months. Stenosis is reported as moderate, there is mild regurgitation of the mitral and tricuspid valves, but no regurgitation of the aortic or pulmonary valves.

I am somewhat symptomatic (SOB, some dizziness), but being 50 it's sometimes hard to tell how much is due to the stenosis, menopause, or just to life in general!

Thanks again for bringing us together.

Marguerite

 

[starkone]

Still waiting.....

Still waiting.....

Hello all,

I never expected to still be in the waitingm room at this time.
I was diagnosed with AS almost three years ago...at the time
they told me surgery was going to be immediate.
After a second opinion at Brigham Womens with Gilbert Mudge,
things were put off.
I am due for an echo in January. My last echo last Jan showed a valve
area of .8 ejection fraction 65 to 70,so I know I am close. As for symptoms, I can't really say. When I was first diagnosed I had all the symptoms I read about. Now that I am further out I only get them when I think about them . I was wondering if everyone in the room starts worrying all over again when echo time rolls around? I sure do!
I check the site often, to see how everyone makes it through the surgery. That is the one thing that is a constant reassurance!
Thanks to all who post about their experiences!
Fondly,
Karen

 

[epstns]

Personally, when echo time rolls around (like the one in a few weeks), I don't even begin to worry. Maybe that's because in the 3 or 4 echo's I've had since diagnosis, there has been no change in the readings beyond the "normal" variation between machines and technicians. I guess if there was a trend or an "Uh-Oh" in there I would feel differently.

My GP initially wrote my complaints of lost energy off to aging. A lot she knew! I'm still just a kid, in my mind, and sincerely resent being told that not only have I passed the "growing up" stage, but that I've now entered the "senior" range. Heck, I usually neglect to ask for my senior discounts. . .

 

[78vette]

Thanks Betty. I am going to give my hubby lessons on updating you this weekend so he will be able to keep you posted on my progress. Thanks for the prayers. If anyone hears from Kay before I get back online please tell her I am praying for her and wishing her well.

Tawana

 

[MitralMan]

16 days go for mitral valve repair at NYU

16 days go for mitral valve repair at NYU

...and I've learned more posting and reading here in the last week than I ever thought possible. I'm a 47 year old male, 6' 200 lbs (well, OK, I was 164 when I got married 20 years ago, but this is one HECKUVA way to get back down to fighting weight).

Doctor (Dr. Stephen Colvin) says repair, he's supposed to be one of THE top guys in the country for repair, and I like him. And if it turns out I need a replacement, I've decided I'm just going to accept what he's more comfortable with -- Mosaic porcine. My thinking goes like this: 1) I want him to do whatever he's most comfortable with because this reduces the risk at the time of surgery; 2) assuming I remain healthy otherwise (and I intend to play tennis again and ski again with my family), I'll need another surgery at some point in the future and don't mind having it in when I'm a bit younger and stronger (i.e., even if bovine lasts longer -- say 15 years vs. 12 for porcine -- all else being equal I'd rather have an OHS when I'M 59 rather than 62). I'm hoping the advances by then will be such that it will be my last surgery.

Did I say you guys were great?

 

[MomOfThree]

Hello There!

Hello There!

Hi MitralMan!

I want to echo your sentiments of how great everyone is here. It makes me feel like someone understands what I'm going through. Thanks everyone! You can't really find this great support anywhere else, even though family and friends try.

Anyway, it's a small world. Dr. Colvin is doing my surgery also on 12/17. It's an aortic valve replacement though, not mitral repair/replacement. What date are you scheduled for? He recommends Medtronic Mosaic for me too. Are you doing the minimally invasive?

Sorry, I'm still not sure how these posts work. I hope I'm not boring others with my questions? Should this be a PM?

-Martha

 

[Mary]

Betty,
This is a sore subject with me which is why I haven't posted until now.

I will probably have the Ross procedure done by Dr. Stelzer in late May (school will be over by that time and I will have the summer to recuperate).
In regards to my job situation/circumstances, May would be terrific.

However, since I am now having chest pain/pressure while swimming, I'm afraid that if I wait I will lose the edge that I have on being a Ross candidate. My cardiologist is opposed to the surgery, and his opposition has made Dr. Stelzer a less enthusiastic about setting an earlier date.

My AVA is .9cm2 with most other values in the normal range; however, several have moved into the "abnormal" column. I am sending the latest echo video to Dr. Stelzer so he can view it himself. The echo report that I sent previously was read by my cardiologist, so I don't entirely trust the interpretation.

This waiting around the "Waiting Room" is beginning to take on a Twilight Zone ambiance.
Lord knows I'm not anxious for OHS, but I'm not prepared to let further heart damage progress while doctors argue the relative merits of "another .1 cm here, another .1 cm there".

 

[RunMartin]

Hi,

I am still in the waiting room. I have not posted for a while but I still regularly (most days) read the posts. I am due for a visit to my cardio on Dec 15th and I am starting to feel a little apprehensive about it!. I have a bicuspid aortic valve with moderate regurgitation. My heart size is now being monitored every 6 months as it is fairly large. I am still asymtomatic and I am still exercising every day and racing (running) every week.

Martin

 

[Debrinha GT]

Waiting for the fourth time!LOL!!

Waiting for the fourth time!LOL!!

Hi Betty and all the others! I'm a 39 year-old Brazilian who has had three mitral valve replacements with tissue valves as a result of rheumatic fever. Just under a year ago, I learned that the valve I've now had for 9 years which's a Pericardium bovine bioprosthetic cardioprothesis valve is slowly calcifying and will have to be replaced within a couple of years providing there's no rupture which would take me to the OR much sooner. Please, pray for me!!LOL!! I'm going to see my cardio again this Wednesday and I promise to give you an update on how things are progressing as soon as I find out myself. By the way, YES, I do get worried whenever I have to go for an echo since they bring back memories of not very pleasant news I've had to hear in the past! Nice to see you all posting for we need all the support we can get in order to keep our heads above water! Take care!!
Débora from Brazil

 

[MitralMan]

Hey MomOfThree!

Hey MomOfThree!

Don't tire Dr. Colvin out (though I admit he does seem indefatigable) before he gets to me! I'm scheduled for the 21st, just four days after you. As of right now, minimally invasive is what we're expecting -- but I'm getting an angiogram because of family history. Who knows? Could end up with a CABG and valve replacement thrown in for good measure!

I'm not a particularly religious man, but here I am writing that I'll pray for your successful surgery and recovery!

Hi MitralMan!

I want to echo your sentiments of how great everyone is here. It makes me feel like someone understands what I'm going through. Thanks everyone! You can't really find this great support anywhere else, even though family and friends try.

Anyway, it's a small world. Dr. Colvin is doing my surgery also on 12/17. It's an aortic valve replacement though, not mitral repair/replacement. What date are you scheduled for? He recommends Medtronic Mosaic for me too. Are you doing the minimally invasive?

Sorry, I'm still not sure how these posts work. I hope I'm not boring others with my questions? Should this be a PM?

-Martha

 

[MitralMan]

Debora, as I just wrote I'm not a religious man. BUT:

Debora, as I just wrote I'm not a religious man. BUT:

My prayers and thoughts are with you! Heck, sounds like you're a pro!

Hi Betty and all the others! I'm a 39 year-old Brazilian who has had three mitral valve replacements with tissue valves as a result of rheumatic fever. Just under a year ago, I learned that the valve I've now had for 9 years which's a Pericardium bovine bioprosthetic cardioprothesis valve is slowly calcifying and will have to be replaced within a couple of years providing there's no rupture which would take me to the OR much sooner. Please, pray for me!!LOL!! I'm going to see my cardio again this Wednesday and I promise to give you an update on how things are progressing as soon as I find out myself. By the way, YES, I do get worried whenever I have to go for an echo since they bring back memories of not very pleasant news I've had to hear in the past! Nice to see you all posting for we need all the support we can get in order to keep our heads above water! Take care!!
Débora from Brazil