Joining Steve in the Waiting Room!

[ottagal]

I had my 6 month follow up yesterday and after much discussion, the cardio has decided "no surgery at this point". The change in the echo was minimal, however I am still in the severe category. He made the usual recommendations re: modified activity, no heavy lifting and to give him a call if there is any change in symptoms.

One new change was that he noted my pulmonary valve has mild-moderate stenosis with mild to moderate regurg. as well. He said that they won't know what to do about this, until I go in for AV surgery. They would decide what to do with the pulmonary valve at that point.
Has any one else been in this situation?

Thanks to everyone for all your support on this forum! It is great to be part of this wonderful VR. family.

So...hope you are making room for me Steve and have poured me a drink

 

[Guest]

So...hope you are making room for me Steve and have poured me a drink

Wanda, I think I'll you need to do is tell Steve what kind of drink you want. I'd be willing to bet the Waiting Room features all sorts of "goodies" in terms of drinks available, etc.

CONGRATS...and enjoy your stay in the Waiting Room .



Cort | 35swm | "Mr Monte Carlo"."Mr Road Trip" | pig valve.pacemaker
WRMNshowcase.legos.HO.models.MCs.RTs.CHD = http://www.chevyasylum.com/cort
"These hands are meant to hold" ... All-American Rejects ... 'Move Along'

 

[Bina]

Wanda, I can't remember if you posted your echo numbers......
Do you think that you may be more reassured with a second opinion?

 

[emc07]

Hey Wanda,
I'm thinking about ya. Can't really help with the pulmonary valve situation, but I hope you will find your answers soon. I agree with Bina a second opinion wouldn't hurt. I was in the severe category also, and I needed surgery soon after I was diagnosed, about 6 months after. Of course, I had severe regurgitation, not stenosis. Have you thought about talking to a surgeon? That may help with the questions you have.

Have a great big drink, you deserve it!!

 

[epstns]

Wanda - There is always room in The Waiting Room! Sometimes it gets lonely in here, but I'm in no hurry to leave the comfort of "the known" for the unknown.

As for drinks, the bar is well stocked -- both alcoholic and non-alcoholic beverages. Since it is morning right now, I'm in the mood for a large (triple?) espresso with just a hint of sugar. Maybe this evening a glass of wine or some good single malt Scotch. . .

 

[Nupur]

Hey Steve, I am glad you are living your life fully while in the waiting room. Can't say the same about myself. I still worry a lot. Everything seems like a "symptom" now. I had a dry cough last nite and stayed awake thinking this must be due to the regurgitation going back to the lungs : ) Everytime I brush my teeth I think of endocarditis resulting from gum bleed. The list goes on and on. I think a glass of wine now and then would do a high strung person like me lots of good : )

Ottawagal, good to know you're going to be in the waiting room with us!

Best
Nupur

 

[Dale]

Oh my gosh Wanda-- that is the one thing that drives me mad about our healthcare system! How can he (I'm assuming your cardiologist is a he) just say he will figure it out when they operate on the aortic valve? How can a patient deal with that kind of report?
I know it is difficult to get a doctor to clarify sometimes, but maybe you can ask him to help you understand what he means. I have had to ask and every time the doctor has helped me out. It gives me a sense of control...

Anyways, I hope you have a nice Thanksgiving!

Dale

 

[abbanabba]

Hi Wanda - what a frustrating situation to be in. I would've thought that if they were going in to do the AV at some point, then it would make sense to do the PV at the same time - after all, it's not going to fix itself, and why put you through another replacement down the track if it can all be sorted out at the same time? If the PV deteriorates faster than the AV, again, why not do them both?

<..sigh..>

And while we're refreshing drinks, it seems my Long Island Tea has completely evaporated.....!


A : )

 

[ottagal]

Hi!
Thanks everyone for your posts! They were most helpful. Yes, it would probably be a good idea for me to get a second opinion about this. Although, I am joining Steve in the waiting room, I am not feeling as comfortable as him...hope I can get there!!! He (cardio) also changed my appt. to a 9 month follow up instead of 6 months. I am probably overreacting, but...

 

[ottagal]

cont'd and thanks!

cont'd and thanks!

Sorry about that! I accidentally hit the send button before I finished my reply...

As mentioned, my 6 month follow up has been changed to 9 months and for some reason I don't feel comfortable about that. I guess he (cardio) figures I am 'stable for now. Any thoughts?

As it is early, I will join Steve and have a decaf latte...but am sure I would welcome a nice glass of Merlot on the weekend
Bina...Thanks...yes, I did post my echo results and the valve area is .83 and the peak pressure gradient is 66.

 

[tcopel]

Just a couple of random thoughts, wanda, as I read your post. I wonder why the change in your pulmonary valve. Was that not picked up on your initial studies or has there been a progression of the pulmonary stenosis to the point that it is now moderate? I wonder if that is an indicator for a need for closer follow up, not appointments further apart. Echos can be variable dependant on the technician so I sure dont mean to alarm you, it is just something I wonder if you should ask you doctor about. As you probably know, it is optimal to tackle any valvular surgery prior to permanent damage to the heart muscle so I think its important to get a better understanding of your echo report. I amplify Dales thoughts that it seems a little cavalier to say that they will just figure out what to do when they get in there. I would hope that they have options dependant on what the valve injury is intraoperatively and then proceed with that plan.
I had a cardiologist tell me to sit on a 6.0 cm ascending aortic anerusym and I did so for about a year. I decided to see a cardiothoracic surgeon and see what he said. I saw 2 different ones and they both agreeded that it needed to be repaired ASAP. Turned out they were right. This is just to say, that sometimes cardiologist opinions are conservative and different than CV surgeons. So..just some things to think about.
I gotta go.. my mohito calls my name

 

[Duff Man]

may I suggest the living room instead?

 

[njean]

Hi!
Thanks everyone for your posts! They were most helpful. Yes, it would probably be a good idea for me to get a second opinion about this. Although, I am joining Steve in the waiting room, I am not feeling as comfortable as him...hope I can get there!!! He (cardio) also changed my appt. to a 9 month follow up instead of 6 months. I am probably overreacting, but

And I too will wait w/you & Steve & all those others in the "waiting room". After 3 OHS & a possible 4th looming in the future, I too don't particularly want to leave the comfort zone of the "known for the unknown" as Steve said. Be there, done that!

I just went for my 3 month check up this Monday & everything remains stable --- I'm scheduled for another ECHO in December. In the meantime, we'll wait together......

Take care my friend!

P.S. Although in my case, it would be from the "known to the known".

 

[zipper2]

congrats Wanda and highjack your thread Steve you also
on the waiting rooms and Norma too now you all stay there
you hear no lottering around looking for trouble.
Happy for all of you,somewhere i musta missed your thread
Steve,I apologize.

zipper2 (DEB)

 

[ottagal]

thanks

thanks

(Just a couple of random thoughts, wanda, as I read your post. I wonder why the change in your pulmonary valve. Was that not picked up on your initial studies or has there been a progression of the pulmonary stenosis to the point that it is now moderate? I wonder if that is an indicator for a need for closer follow up, not appointments further apart).

Thanks for the input and that was very helpful. Yes, the pulmonary valve stenosis has always been there, but it has now progressed from a mild to mild-mod. with 1+regurgitation. I have also read that echo recordings can vary depending on the technician.

 

[njean]

Thanks for the input and that was very helpful. Yes, the pulmonary valve stenosis has always been there, but it has now progressed from a mild to mild-mod. with 1+regurgitation. I have also read that echo recordings can vary depending on the technician.

Most definitely! Echo recordings can be misinterpreted by different techs!

That's exactly what happened to me just a few months ago --- the tech doing the Echo was making all sorts of faces, grumbling, talking to herself, etc., & when my Echo came back, it showed that my Pulmonary pressures were in the 80's! I was off course frantic, my cardio was frantic & set me up for a "right heart cath" & low & behold, my pressures showed up to be in the low 50's! Still a bit high but no where near the levels the Echo showed!

I'm scheduled for another Echo in December & I'm really NOT looking forward to that one because the same tech is going to do it in my cardio's office. I'm tempted to call my cardio & ask him if I can have it done at the hospital instead but I'm afraid of getting him PO'd at me!

 

[Bina]

......
Bina...Thanks...yes, I did post my echo results and the valve area is .83 and the peak pressure gradient is 66.

When my valve area was that size I had severe symptoms and was seeing my cardio every 3 mths.....he was angry that I was stalling surgery. Of course now he is angry that I am not running marathons.

 

[epstns]

By all means, do take any single echo result with the proverbial grain of salt. There is quite a range of potential variability in both the statistical readings and the interpretation of the readings. In fact, I would bet that even with the same tech, echo's of the same patient taken on different days will show some variation.

My cardio and I look at each echo, but then we look at the progression of readings for each specific measure to look for trends or significant changes. If any one reading looks like an "out-lier" -- it probably is just that. If multiple readings show trends, then they are likely reality.

As long as you do not exhibit any of the "cardinal" symptoms of AS (shortness of breath, fainting or chest pain), then I would stay the path. As several cardio's have told me, "Aortic stenosis patients don't just 'drop dead" like in the movies -- they usually know long before the doc's know if they are in trouble." That said, there are those small percentage of cases that end in sudden cardiac death, but this is definitely not the norm, especially in cases being monitored by competent cardio's and patients.

Hang in there -- once you get used to it, The Waiting Room is kind of fun. . .

 

[ottagal]

Hi Norma,
We will most certainly make room for you in the "waiting room" and do hope you stay there for quite a while. You deserve it! Thank you for sharing your echo results story. It is an eye opener! As Steve echoed your thoughts (no pun intended!). I guess the confusion lies in that my cardio. said that the gold standard in AV diagnosis is an echocardiogram, but it does not appear that accurate.
Steve...I am going to try and have some fun while I hang out with you and the others in the "known".

 

[Freddie]

Just wanted to say Congrats to you Wanda and go ahead and have some fun in the waiting room,, but don't be a stranger around here okay?