How long is the lease on the Waiting Room?

[epstns]

Hey, gang, I just got back from my 6-month consult with my "new" cardio. The echo (this time done in cardio's own lab) was much more detailed than the first, and it tells much more of the story.

They still can't definitely see the aortic valve structure, but all 3 doc's who reviewed the echo share the belief that it is bicuspid. The root and aorta are fine - no dilation or coarctation evident. Definite aortic stenosis, but here's the good part -- peak velocity of 2.8 m/s, mean gradient of 19mm Hg, peak gradient of 33mm Hg(was supposed to be 44 last time) and approx. valve area of about 1.1 sq cm. Also noted LVEF of 60-65%. Cardio combines this with exam findings and my "demonstrated" lack of symptoms and concludes that at present I have moderate AS. (One of the 3 even called it mild.) Cardio #1 (fired him) felt it was mod to severe, so I feel a bit more optimistic. This cardio says that if I press him for a guess as to timing of surgery he would say something like "Could be never, but I would bet on 4 to 5 years."

So, my question is, "How long a lease do we have on the Waiting Room?" I guess I'd better be ready to stick around here for a while!

 

[Georgia]

Congrats

Congrats

Good news, Steve. Looks like a REALLY long-term lease. Nice to hear someone having such a terrific report.

 

[Ross]

Indefinite Lease on the waiting room. Besides, we need you around here anyway. You've learned to much and become to valuable to allow you to roam freely! POOF-Your an indentured slave.

 

[Nancy]

Hey Steve-

Looking better and better. Hang around, please, we'd miss your shining face.

 

[bvdr]

Hi Steve,

That is a good report! I sure hope you don't leave us because of it though. I hope I don't have to remind you of your responsibilites around here do I?

I hope you are asymptomatic in the waiting room for a long time to come. You are such a source of encouragement that you would be really missed. The waiting room is a much nicer place with you here!

Betty(bvdr)

 

[EVELYN]

Wow, Steve, what a great report!!! I sure hope you went out and celebrated, but as far as I'm concerned, since Tyce's surgery, I celebrate EVERYTHING!!! You can be in charge of the waiting room for the next few years, how's that???? Good luck and again, congrats!!

Evelyn

 

[epstns]

Not to worry -- I'll be here for a long time, both before and after surgery. Where else can I learn all the new developments in valve disease? Where else can I find the many family members who really understand what goes on in the minds of people facing valve surgery? Where would I ever find anyone else who could help interpret the myriad physical and emotional changes we all go through?

I have become so comfortable with home away from home here that no matter what the reports may be, I'll be here. After all, I DO have valve disease, and will someday have to deal with it. Having all of you here to help is incredible!

Now, as to the Waiting Room, I think I'll get that contractor back and see what they can do to kind of "open up" the space, and maybe put in a better sound system, and - Oh Betty, should we re-paint while you're still here to choose wall and carpet colors?

Oh, almost forgot, CHRIS -- you have some magazines still checked out from before your surgery. The overdue fines are . . .

 

[rosewynds]

Hey Steve,

I hope there is a long lease on the waiting room, I will be here quite awhile also I think. My valve is at 1.6 cm, my doctor said it could be anywhere from 5 t 25 years before I would need surgery.

Congratulations on your good news.

Lisa

P.S. I think skylights in the ceiling would be nice for the waiting room. Would open up and brighten the room....lol.

 

[Les]

Steve,
Great News! Happy to hear it! Order new magazines from Publisher's Clearing House for the Waiting Room, and "You Could Be The Big Winner!"
_______________
Les AVR '93 / '95

 

[wlaldridge]

Good report Steve,

Developments and education sure do make a difference.

In 1995 (before much internet and VR.com) I was told I had numbers just like yours, and that I might be a candidate for valve replacement in 15 or twenty years. I didn't take it seriously since I, too, had no symptoms and great stress test results. The "murmur" was never called a murmur in my early years so "Ostrich" sort of sounds like my name.

By 2002, I decided to have an echo to see if the "stenosis" hadprogressed (I was betting it had not). Wrong!! Seven years and it was now opening=0.7 and 5 months later 0.62. Progression was rapid and the numbers told the tale. Still no symptoms and if it had not been for a determined "good ole boy doctor and THIS website, I might have just "waited" for the "big one" not believing it was happening to me.

I know, I have said most of this before, but I never stop being amazed at my great good fortune to find this site and all these wonderful folks. Let alone, the fact that I survived this surgery and find here less than a year later that it now seems like "no big deal" warfarin, ticking, and all the worry before hand. Geez, how easy it is to start "taking for granted" true miracles.

Thank you, again to Hank and everyone here.

At the rate things are going who knows what your wait will hold for you in improved techniques and equipment. This site will remain one of the anchors to windward in the storm.

Hang in there and don't go away.

Great good luck to you.

 

[LoraW30]

Sounds like great news to me.



You know, I think my aortic valve was bicuspid. I had some SERIOUS stenosis going on though and my heart was seriously enlarged. I was just a wee baby though.

 

[John Cochran]

Steve,
Like Bill, I was fine for a long time, but when things started to deteriorate, it happened very fast. Moral to the story is: Keep a close eye on it, but enjoy life in the meantime. Waiting can actually be a really positive thing in the sense that the technology of valve replacement and valve surgery continues to improve. The longer you can wait, the better the technology. By waiting, I was able to get the SynerGraft homograft just months after they became available. I am loving my med-free life and feeling like nothing ever happened to me!

Many exciting developments are on the horizon, including much smaller incisions aided by robotics, with micro-suturing and much greater precision than exists right now. There is also research into taking something like a SynerGraft valve and "seeding" it with your own stem cells prior to implanation, resulting in the valve becoming your own living tissue. Lot's of good reasons to stay in the waiting room as long as you can! Just make sure that when/if your condition starts to deteriorate, you don't wait too long.

Best wishes,
--John

 

[epstns]

Bill and John -- I appreciate your notes of caution, but believe me, they are in total concert with my own plans and feelings. I still will keep a very close watch on this condition, with visits to the cardio twice a year and echo's as often as he feels we need to. Right now he thinks next echo is a year out, but we have an office consult in six months to evaluate. We may do another echo then, may not. I am, thanks to all who have so freely shared their experiences, very aware that these conditions may seem dormant, but they are not. They progress but may not show any apparent symptoms until a future date, then the descent may be rapid. As Chris Crawford can confirm, I am still a control freak, so I will be following all the test results, critical dimensions and performance factors. If I notice a change, be very sure I'll be pestering the docs for an evaluation.

John, to your point that waiting has technical value, I've always agreed -- and now my new cardio does as well. He seems to be reading all the same things we read, and is interested in discussing them with knowledgeable patients. So vastly different than the last cardio I saw. The new cardio even asked if I was aware of the test cases of percutaneous implantation of aortic valves! Imagine that -- doc asking me? I would pray that the technique would become viable before some of us need replacement!

So, thanks for all the good wishes, and thanks for reminding me to keep up my vigilence. I will keep a close watch on it, and of course I'll keep a close watch on all the goings on here. (And I'll be at the reunion, too!)

 

[pillarpaul]

Steve,

Great news on the heart front. I too "delayed" my surgery on for about six years in the hopes of advancements until I just got too sympomatic. Good advice from everyone on staying in tune with your body.

As for the Wating Room, not only is the lease long-term, but I read in the VR.com by-laws that once elected President of the Waiting Room, you must serve until the earlier of: a) your surgery; or b) your death. So, congratualtions on your dictatorship, Generalismo Franco! (Rumor has it he's still dead!)

Paul

 

[Guest]

STEVE!

Awesome news...and congrats .

As for that contractor, don't forget the nice garage .

Peace...always,
Cort S, pig's valve & pacemaker-enhanced 29/swm
Instant Messengers...AOL="fc72mc"...Yahoo="knightfan2691"
member & newsletter editor, Faith COB: http://www.faithcob.org
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My MC Family: http://www.chevyasylum.com/cort/
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RIP: '76=Parents' [my] MC ... '88 MC LS ... '00 'MC' LS
Spotting MCs: http://www.chevyasylum.com/mcspotter/main.html

 

[epstns]

Hey, Paul, thanks for the encouragement. Franco still doesn't answer, so I think he's still dead. . .

Cort, I totally forgot. We need a garage attached to The Waiting Room. Two reasons -- need space for members and visitors to park, AND we need space to tinker with the hobby cars! Good thing you're watching -- I would have let the contractor go home without a commitment for the garage!

If I run real fast, I can still catch him. . .

 

[Kathie]

Sounds like you are doing well - that's wonderful. And it's wonderful that there is no time limit on the waiting room. We should be good friends by the time they get around to us, eh?

The longer I stay on the boards and read, the more I learn, and who knows what marvelous new things are coming our way?

Personally, I am getting tired of the magazines in here - what about a wide screen tv???? I promise to dust it?

 

[bvdr]

OK Kathie,

We did just update some of our magazines but they are already getting dog-earred. I will have some family in here with you while I take my trip over the mountain. My son Jonathan is an expert scuba diver instructor (not his day job) so some mags on exotic destinations would help him pass time. The rest of the family will bring their own reading material.

Be patient with them...they tend to get a little nervous

The wide screen TV?......good idea!

Betty(bvdr)

 

[fyrfytr]

Hey Steve, Sounds like Great News, my bicuspid lasted 52 years and had a gradient of 50 until this year. They think that it getting worse caused the aortic aneurysm, went to a gradient of 25 to 30. So you might be here for awhile. Take Care of yourself.
Dave

Keep your fires small!
____________________________________
Surgery: 4/21/03
Aortic Aneurysm Repair
AVR, with a St. Jude Mechanical
Heart Center of the Rockies

 

[Guest]

*reviews new posts*

*LOL to self...thinking how cool this would be if we had a real Waiting Room of this stature*

*considers leaving the thread alone without adding anything to it*

Blasphemy!

*opts to add some more thoughts to this particular thread...if only for the "comic relief" of the following...*

Steve....I am shocked (see my disgruntled look in your direction?) that you could forget the garage for this place. I mean...c'mon...as you said, we need _somewhere_ to work . I hope you caught the contractor before he left. And, make sure that garage is about 3 stories...if not more. We want enough room for everyone to park (yes, even non-Chevrolets...LOL...I _do_ appreciate other cars, ya know ) AND to work on some of 'em....

Now, as for those magazines...I didn't know the situation was that bad.... So, I could offer to donate some old Cubs magazines (Vineline) and old car club-type magazines for your reading pleasure, if ya like. Had I known about this magazine situation before now, I could have donated a ton of old magazines that my grandmother had saved....

As for the wide screen TV, do we have enough in the budget for this? I spose we could take it out of the "rainy day" fund, since the TV would be used mostly for rainy days, as on nice, sunny days we'll be out driving in the cars available to us.....