Roll Call!

[epstns]

Hi everyone!

With the recent travels of several members over The Mountain, I'm beginning to wonder who else is here with me in The Waiting Room. I need to know so we can order up enough magazines, lounge chairs, drinks and snacks <g>.

So, who else is out here with me?

 

[starkone]

It is getting lonely here....not that I am complaining.
I read alot but don't post often.
I am headed to Brigham Womens Hosp in Boston on
Monday for my first follow up echo since diagnosis last May.
I am from Sarasota, Fl but since they misread the first echo (told me I was 6 cm) here I had a second opinion in Boston last year, and that is why the trip up there. Have to go to those you trust.
I am at 8-9cm. last year, so I know things are close. I have no symptoms. I have quit playing tennis cause the HR was going way over the advised level. I just do light cardio up to 125 HR and keep as fit as possible. Other than that .....just waiting and it _ _ _ _ _ !!!
Karen

 

[hensylee]

Karen I am really surprised that Sarasota is not up to snuff. They have some great hospitals there, as does Pt Charlotte. I am sorry to hear that they have made a mistake and disheartened, too since my son and his wife live in Sarasota. I lived in Arcadia from 68 - 87 and watched all those hospitals rise from dust to what they have become. There used to be only Sarasota Mem and Doctors Hosp and they weren't all that big back then. On the other hand, you can't get no better'n Boston. I just love Boston and all it has to offer - in every way. My primary received his advanced training there and I am happy to have him on my side as he is soooo educated. Good luck

 

[nadi]

I am here

I am here

Steve,

I am still in the waiting room but I am supoose to leave Monday morning.

 

[starkone]

Actually they are very good as a heart center....ie. surgery, and invasive cardiology, but lack in good echo reading technicians.
At least that is what my PCP states.
Last year their way off reading caused me to have a catherization, and alot of anxiety. The cath reading ended up being the same as the echo reading in Boston. That is why I trust Boston for the followup!
Thanks for the reply.

 

[EVELYN]

Hi Karen

One of our members, Mamsram just got back from B and W....forgot who his cardio was, but I'm sure he can tell ya'll about it when he's on. My girlfriend, Sandy, has also had brain surgery there......must be a terrific place. Good luck, and please keep us posted.

Evelyn

 

[Bunny_Rabbit]

Oh I'm here.

Still waiting...........

 

[bvdr]

Thanks for starting this thread Steve. I'll soon get the feel for posting on these forums (I hope).

Well, I am still in the waiting room too. I saw Dr. Glower up at Duke yesterday and he said I will need the mitral valve replaced. It was a very good visit and I liked him alot. He said we may be able to buy some time if Dr. Wang (also at Duke) feels I am a good candidate for balloon valvoplasty. My records are now with Dr. Wang except for the actual echo film. He would like to review that and maybe save me a trip. His secretary said if the echo is of a good enough quality they may just want to schedule the procedure.

I guess no time is a really good time but doing this when I need to be moved in a month is kinda a bummer.

If I have the valvoplasty done what does that make me-
over the hill

I guess I will still be in the waiting room..................Betty

 

[rosewynds]

My aortic stenosis is mild to moderate - 1.6cm, so I will be in the waiting room for quite some time. If I'm real lucky, maybe I won't ever have to leave, if this never progresses. I guess time will tell the story.

Lisa

 

[mamsram]

KAREN!

CAN YOU HEAR ME?

It's Mamsram, Evelyn's recomendation for news on B+w hospital.

My history-- On Dec. 2001, I had a murmer that had increased noise. An echo was recommended ( I had one 5 yrs. prior )
The first one showed an opening of1.5, the new one showed .8 .
My Dr. recommended a cardiologist. I saw him and he said "You need to have a valve replacement operation". You could have hit me with a brick and I wouldn't have been more surprised. I said I wanted a second echo and a discussion with a different cardiologist. I saw the 2nd card. and he said " get it over with and get on with your life." I said NO, I'll wait 6 months, since I don't have symptoms and I feel fine. An echo 6 mnths. later showed an opening of .7. I saw a 3rd cardioligist (all with the same hospital) he said I should get it taken care of. I then went to a surgeon associated with the same group of cardiologists and he talked with me for an hour. but. two thing he said stood out in my mind, 1 He said there was some sign of left ventricle hypertrophy 2 When I asked about walking he said " if I were you I'd just sit in a rocking chair". His good points were that he had small hands and a good manner, but I sensed that he wanted a good healthy subject to operate on.???? Since this hospital does about 200 valve surgerys a year I decided to look elsewhere.
My next step was to go to B+w in Boston---600+ valve ops a year. But How to get the operation---I was ready. NO, first I had to see a cardiologist, send all my records to him. O. K. then he wants to have his people do an echo?? O.K. his result----.7cm.
He says --no symptoms and no other heart problems seen so his reccomendation is do nothing till symptoms or .6 or other followup echo show heart problems occurring.
This Drs, name is Richard Kuntz-- I think he comes at you straight on-- He said if You want the op. we could do it this afternoon-no problem.
It seems that when you go to B+W you follow a flow chart. that is, there are no deviations, just step1, step2 etc. They seem to be very clean, very organized and, I,m glad that Evelyn's friend advised me to go there.
You are traveling a long way, but I know its important to feel good and to be confident in the people you are trusting to care for you.
I wish you the best and be sure to stop and look at the sculpture of the stages of a woman's life that is in the 1st floor entryway.




keep smilen

 

[mamsram]

hi Lisa

Yes, you may be in the waiting room a long time. From what I've read, the normal valve opening is from 3 to 4 cm,. It is severe when you are at 25% of normal. so if you had an opening of 3.0 it isn't severe until .7
I wouldn't be surprised that you would be o.k. all of your life if you get control of your blood pressure.

heres to your good health

 

[mamsram]

Bunny,

THEY ALSO SERVE, WHO SIT AND WAIT!

curious-- do you drill holes in collinders? I used to paint the lines in the roads---In the old days--by brush

Do you wear a mask??

 

[hensylee]

Lisa, if you're going to be in the waiting room forever, you might as well be busy. I nominate you for being in charge of getting some new magazines and keeping up with them for those who are waiting and for those yet to come.

 

[fdegranville]

Maybe in the waiting room the longest

Maybe in the waiting room the longest

It is possible that I have been in the waiting room the longest. I have been a member here since we had less than 30 members. I was diagnosed with RHD 23 years ago and I'm still waiting. Had a mitral mitral valvuloplasty 3 weeks ago that was not terribly successful and still have mod-severe AR, but I think I can still hang around the waiting room for a while (I love watching CNN).

Best to all my fellow men and women in waiting.
fdeg

 

[epstns]

I'm kinda relieved to see that we still have a good corwd in here! For a while I thought I would be the only one here until the next "class" comes through. Although we each learn of our condition at different points in its progression, and each of our cases progresses at a different rate, we all seem to come together to support each other. That's why I'm here, and I'll help to keep the Waiting Room tidy and pleasant for each new class until I "graduate" too.

Ram - Looks like they put you back into the holding pattern. It will be interesting to see if many of the surgeons follow the same chechpoints. That way we may all be able to better predict when it is nearing the time, even if we have minimal or no symptoms. Hang in there -- Chris (ccrawford) said he, too, had minimal symptoms until about 2 months before his surgery. So, it looks like many of the surgeons do follow that "wait for symptoms" protocol.

 

[bvdr]

Francesca, I'll watch CNN with you but I need some time on Fox news. Can we also watch HGTV sometimes? Of course I will bow to your wishes since you certainly have higher senority here!

There has to be more of us arn't there?....Betty

 

[starkone]

Dear Ram

Thanks for you reply to my questions.
Yes, my first echo showing a .6 was in Sarasota...
because of this result a cath followed that showed a .8-.9.
I went for a second opinion to B&W and their echo showed the
same as the cath here. That is why I prefer to go back to B&W for
a follow up echo.
I too have good cholesterol and triglycerides but my doctor likes to see how far I can go on exercise stress test to limit or not limit my activities. B&W seems to be very liberal on this.
I too am leaning toward a tissue valve. They tell me I am in the "gray zone" because of my age, but I would rather not spend the next ten years on coumadin. I wish my valve had lasted as long as yours! Do you have a bicuspid valve?
Well, thanks again for your answers to all my question.
I will let you know how it goes.
Sincerely,
Karen

 

[fdegranville]

I'm stuck on CNN

I'm stuck on CNN

Dear Betty,
I have to watch CNN, not due to superior broadcasting, but because I have a huge crush on Anderson Cooper. You may watch Fox or HGTV, or even MTV when he is not on, okay?
Steve, what beverages do you serve? Keep the coffee hot.
Maybe we should have a 'waiting room' reunion, LOL
fdeg

 

[Bunny_Rabbit]

haha

haha

Hey Fdeg, I think Anderson is a cutie too. He just seems like such a nice guy.

Oh, I prefer tea to coffee. So we're going to have to make sure there's an ample supply of Red Rose tea bags on hand.

 

[fdegranville]

To Bunny

To Bunny

Do you know who his mother is? If you guess correctly, you will be guaranteed your own dedicated wait-person in the waiting room to serve you anything you may desire at any time.

You have 10 seconds.............